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CommentsHey Conner!! I hope you are having a good day. Tell mama and daddy that I am thinking about them today and that I hope your grandmamma Connie is resting well today. Please tell them to call me when they need another meal. I think about ya'll all of the time. Bye for now! Amanda Cartee
CommentsHey Conner!! I hope you are having a good day. Tell mama and daddy that I am thinking about them today and that I hope your grandmamma Connie is resting well today. Please tell them to call me when they need another meal. I think about ya'll all of the time. Bye for now! Amanda Cartee
CommentsBetsey, Please, please, please know Mandi, Mark and I are praying for you, John, and Conner. Please kiss Connie, my dear friend, for me. I wish so I lived closer so I could help in some way. All my energy is given to prayer for no pain and peace of mind. We love you so very much. Please give hugs to Sonny, Jim, John, and Daniel. Miss Lucie
CommentsBetsey- Hey! This past week has been crazy. I'm so sorry I haven't been by to see Conner. I wonder if he likes to get mail??? Anyway ... I'm going to come by real soon.(I know you wish I'd stop saying it and do it.) I'm so sorry to hear of Mrs. Connie and the state that she is in. I know the feelings of wanting her pain free and yet wanting her here. I know it is so hard to watch someone so strong yet so weak. I can remember the girls' mother, it was just a year ago when we were in the same postion. Hospice is a WONDERFUL program. I'd love to bring a meal by next week... is there a certain day or should I call? Let me know if you have a hankerin' for something specific. <>< Meredith
CommentsThanks Meredith, Amanda, Miss Lucie, Maria and all of our other loving and caring friends out there who have been thinking of us. I must tell you that getting good food is wonderful. I think though we never know when we are going to use "let's go get something to eat" as a way to take a break from the tension of the hospital or the whole situation. It seems when Conner was in the hospital, our days began to revolve around when and where we would eat. But that is usually during the day, not supper. We appreciate all the food people have brought. Now we just need to know how to get all the dishes back to the correct people! I am getting fat with all this good food, by the way. The desserts that have been sent are getting me super fat. Well, Connie's day yesterday was not too good and she spent most of the day unresponsive until the medication was lightened up. Today she spoke and even made sense in a lot ways and joked a bit. Later we took Conner up to the hospital (I was a little nervous about that with the icky germs and all) but I am glad we did because Connie talked to Conner and she touched him and stared at him. We were all there at the same time today-John, me, Conner, Baby Jim, Jim and Julie, Sonny, Daniel, MaMa-and Jane O'Donnell, of course, who has been with us this whole time. Jane took a picture of us with John's camera. He told Connie we'd use it as the Christmas picture next year as a joke since she used to always MAKE us go somewhere we didn't want to go and take too much time and effort to take a thousand pictures and she'd say "that'll be our Christmas picture." I think she got the joke. I see pieces of her but really its not her. The Real Connie didn't have puffy fingers or pale skin. She always has a nice tan on her arms and hands-her eyes always are sparkly blue and she is the one who is doing the comforting. I haven't seen her since last Tuesday. I caught a glimpse of her today but I don't know if I will tomorrow.
CommentsConner's doing fine. Connie is kind of the same. I will report more later. No change.
CommentsBetsey, The respite is available immediately. I'll bring the forms when it is convenient. Love, Deborah
CommentsThanks Deborah. I think I got some extra weekend help for that respite assistance. I hope. Connie's hanging in there but of course we know she is progressively getting worse. I am so tired of this life (this kind of life). I know things will get better one day but I am so tired of so much sadness and misery-I don't know what else to do. I try to find fun things to do with Conner but I am mentally exhausted and so unmotivated. I have to force myself to be "fun" and happy for him. My mouth hurts; my stomach hurts-I am stressed out! So, I am glad my mommy is here because she knows just what to do to destress me. She mommy's me good so I can mommy Conner good. Okay, now that I have complained, I have to be thankful. I am so glad Conner is doing well (relatively) right now. I am glad I have supportive friends and family. I am glad that I have an entire lifetime ahead of me to make great things happen to make up for the hard times. I am glad that I will survive whatever comes up (with a lotta help from earth and the angels and the heavens above!) Thanks for listening-
CommentsBetsy, I am sure the days seem long and exhausting. I am glad that your mom is here with you. Just remember if you need anything at all, I will do anything that I can to help. I have not gone to the hospital because I am sure it continues to be swamped, but just remember that we are thinking about you and your whole family and praying for you. I am glad that you can somehow manage to have a vision of your future. Just hang in there and remember we are here if you need us. I will call you Sunday night and plan on bringing some food over next week. Amanda
CommentsI'm sending special prayers and happy thoughts your way right now. There is NOTHING more exhausting than sitting in a hospital (it is physically, mentally and emotionally draining) when you go home, I know it must be tough to get yourself "UP" for Connor again. Try and hang in there. For what it's worth, there are so many people out here who love all of you and are praying for your family every day. I'm glad your mom is with you -- there's nothing better than a mommy in a time of need! (That's why Conner loves you so much) CALL ME IF I CAN DO ANTHING!!!! AT ALL!
CommentsBetsy, this is a little long but it touched me. I found it on the PDHeart website that Ashley June belongs to. There are many critically ill children on that site too and it asks the question "How can God do this?" "Tomorrow morning," the surgeon began, "I'll open your heart..." "You'll find Jesus there," the boy interrupted. The surgeon looked up, annoyed. "I'll cut your heart open," he continued, "to see how much damage has been done..." "But when you open up my heart, you'll find Jesus in there." The surgeon looked to the parents who sat quietly. "When I see how much damage has been done, I'll sew your heart and chest back up and I'll plan what to do next." "But you'll find Jesus in my heart. The Bible says he lives there. The hymns all say He lives there. You'll find Him in my heart." The surgeon had had enough. "I'll tell you what I'll find in your heart. I'll find damaged muscle, low blood supply, and weakened vessels. And I'll find out if I can make you well." "You'll find Jesus there too. He lives there." The surgeon left. The surgeon sat in his office, recording his notes from the surgery, "...damaged aorta, damaged pulmonary vein, widespread muscle degeneration. No hope for transplant, no hope for cure. Therapy: pain killers and bed rest. Prognosis: here he paused, "death within one year." He stopped the recorder, but there was more to be said. "Why?" he asked aloud. "Why did you do this? You've put him here; You've put him in this pain; and You've cursed him to an early death. Why?" The Lord answered and said, "The boy, My lamb, was not meant for your flock for long, for he is a part of My flock, and will forever be. Here, in My flock, he will feel no pain, and he will be comforted as you cannot imagine. His parents will one day join him here, and they will know peace, and My flock will continue to grow." The surgeon's tears were hot, but his anger was hotter. "You created that boy, and You created that heart. He'll be dead in months. Why? The Lord answered, "The boy, My lamb, shall return to My flock, for he has done his duty: I did not put My lamb with your flock to lose him, but to retrieve another lost lamb." The surgeon wept. Then he went to sit across from the boy and next to the boy's parents. The boy awoke and whispered, "Did you cut open my heart?" "Yes," said the surgeon. "What did you find?" asked the boy. "I found Jesus there," said the surgeon. -Author unknown
CommentsThanks Laura. Connie seemed a little more aware today of things. She still sees my face and thinks I am there to tell her Conner is gone. So I start with telling her Conner is fine and he is doing great at home. He actually has had a good day. Except that he passed out when Belinda came to do therapy. So, he'll get it tomorrow. I appreciate her flexibility. He is so silly. Report later.
CommentsJust wanted to say thanks to all for being so caring and thoughtful.
CommentsBetsey, Your strength absolutely amazes me. I can't imagine what your family is going through and what you're personally experiencing. I feel so helpless here and wish there was some way to help. I do pray for your family - individually - everyday. Conner and Connie have long since been on the prayer journal at my church and they continuously pray for those on there until they get an update from the people who added them to the journal. Even then, I imagine, they keep on praying for them. I will tell you this, and maybe I shouldn't, but it gave me a little comfort from the thought. Early yesterday morning I was saying my prayers and as I thought of Ms.Connie I got an overwhelming since of peace. I thought about Mr. Wilbur who will most certainly be there to greet her and I know how much she loved him. Then I just imagined this long line of people there, arms outstretched waiting to greet her into this paradise. Kevin Conner, Mr. Sonny's mom - huh-huh and his dad and all those who have gone on before her. I just know she is going to such a better place. Although it pains us all miserably to loose her from this earth, I have to believe, I do believe that we will see her again and it will be GLORIOUS!! Just remember the Petty family loves you all dearly. We are all thinking about you daily. There are people here whom you've never met who call me just to see how John, Betsey, Conner and Ms. Connie are doing. I don't know how much that helps but I at-least wanted you to know that there are people everywhere who are praying for you and keeping up with you and wishing, hoping and praying for miracles, mercy and peace. Take care and know that I am only a plane flight away and can be there for what ever you may need me to do. I will be happy to sit with Conner, baby Jim, make food, call people with updates whatever you need me to do - here or there - I am happy to do it. Love all of you - please give John and Conner and yourself a hug and a kiss from all of us here! Robyn
CommentsRobyn-thanks so much. I feel too that Connie has so many loved ones just waiting for her to come to them. They need her obviously more than we do. She has done this dying thing with as much dignity as one could. Jane O'Donnell (First Baptist Church Nurse) has assisted with that. Today was a hard day. Conner went unconcious again today. It just seems forever to get him back and all I could think was that Connie wants to go first. I thought, no!, this isn't supposed to happen. Please, just give Connie her dying wish and let her go BEFORE Conner. We're so close. I couldn't have gone back to that hospital if we had lost Conner today. She is so scared he will die before her and today I thought he might. Now It will take me a few days to get back to my normal stressed out self. Anyway, Conner is fine now but oh how we love him. We are getting through the days. I mean what choice do we have? Just keep on going along. It helps that we have so much love and support. I just can't imagine those who don't have all the support we do. We do appreciate it. I expect that Connie can't keep going in her condition for much longer. It was hard seeing her today. Very hard. I love her so and she loves her family. What will they do? Miss her.
CommentsMy Dear Sweet Betsey, Your strength will continue. We pray for peaceful transition. We pray for calmness. We pray for all of you at this time. We love each of you so. Thank you for letting us share a small part of this time with you and your family. Much love to my dear friend Connie whose smile I will always see. Love, Miss Lucie
CommentsConner had a great day. He went swimming in his mini pool (jacuzzi). He swung, he rode in his wagon. I am about to take him back to his room and give him his treatment and put him to bed. Conner is listening to a CD that John had made for Connie a while back. It has some fifties through eighties on it. But it also has some of the songs on it from some of Conner's favorite movies. We took a CD player and this cd to the hospital when Connie was still a little aware of things. My mom played it and Connie sung to first song-the one from Toy Story. Connie mouthed the whole song. Oh, Conner is ready to go to the back. He is singing with the cd but if I don't get him back he is going to fall asleep right there on the futon. No change with Connie. Hope's baby is supposed to be born in the middle of night. He may take one as He gives us one. Talk later. Love to all.
CommentsDear Betsey, We are all praying for the entire Riggs family here in N.J. Pastor Alec of our church has been praying for little Conner and Connie since we returned from Baby Jim's birthday party. We feel so helpless up here but we know that prayer is the only sure thing! Keep your chin up kid, you are surely an angel on earth. You earned your wings long ago. Much love, Roz
CommentsDear Betsey, We are all praying for the entire Riggs family here in N.J. Pastor Alec of our church has been praying for little Conner and Connie since we returned from Baby Jim's birthday party. We feel so helpless up here but we know that prayer is the only sure thing! Keep your chin up kid, you are surely an angel on earth. You earned your wings long ago. Much love, Roz
CommentsDear Betsey, We are all praying for the entire Riggs family here in N.J. Pastor Alec of our church has been praying for little Conner and Connie since we returned from Baby Jim's birthday party. We feel so helpless up here but we know that prayer is the only sure thing! Keep your chin up kid, you are surely an angel on earth. You earned your wings long ago. Much love, Roz
CommentsDear Betsey, We are all praying for the entire Riggs family here in N.J. Pastor Alec of our church has been praying for little Conner and Connie since we returned from Baby Jim's birthday party. We feel so helpless up here but we know that prayer is the only sure thing! Keep your chin up kid, you are surely an angel on earth. You earned your wings long ago. Much love, Roz
CommentsBetsey, I am so glad Conner had a better day today. Bless your heart and all you are going through. I hope it is of some comfort to know how much you are thought of and loved. I admire your strength, your compassion, and your honesty. I can almost (no one will ever know) but I can almost imagine how you are feeling by reading your journal. It amazes me how you always bounce back with such a positive attitude. You really are something else. I am sure you know how Ms. Connie feels about you. She has told me on numerous occasions how blessed she feels to have you in her family. You truly are the daughter she never had. She loves you so much too. Keep your head up and know you are always with us. We love Conner too, give him a big hug and a kiss. He is so special to so many people. Love to all of you. Robyn
CommentsBetsy, John, and Conner, What fantastic pictures you guys put on the site! They were so nice to look at. I know you guys are all going through an extremely difficult time right now. I just want you to know that you are all in my prayers every single day. Please give a hug to everyone for me. Love, Susan
CommentsSusan and Roz-thanks. I couldn't figure out who Susan Pollock was for a minute there. But I KNOW! Your sister was here for a while with Baby Jim tonight. I enjoyed their visit. Jim looks so much like a Riggs but nothing like Conner! We celebrated MaMa's birthday here today. No big deal but just big enough to let her know how important she is to us-no matter what! Ms. Amie Smith brought food (good food!), Amanda and Mrs. Emily Nevil had brought delicious chicken salad that we are still eating, and later Ms. Linda Sammons brought us food. We ate it for a Birthday lunch, sent some with Jim and Julie Riggs, and made plates for Sonny and MaMa for supper. We have enough left for lunch tomorrow and hopefully will have all the famiy that is here to eat it. Mrs. Tankersly is bringing food tomorrow night, so we are set! I can't tell you how nice it is to have all the food we need. When I can't get out very easy it is nice to have it all here and have the family stop by to eat. I visited with Connie today. I have to tell you that if you are considering going to see her, please don't feel that if you decide not to go that the family or Connie will feel that you don't care. Connie really is not in a state to benefit from having visitors. At this point, it is for the family to know you are there if you go. It is hard because we know the boys have a hard time with their mother being seen in a state that we all know Connie would never have wanted anyone to see her in. It is difficult because so many people love Connie, but this isn't the Connie that you knew and she doesn't know who is visiting her. I visit one day and she doesn't know I was there when I go back. She amazed us today with her humor and apparent clarity only to realize moments later that, no-she isn't making sense. Just brief moments and then they are gone and she doesn't remember. Her coughs are weaker and you can hear the lack of space and effort in her lungs. Well, after my visit with Connie I walked to the Women's Pavilion to see Hope's new baby. Hope's baby-Alaina (I think that spelling is right) was tiny-5 lbs 14 oz-I THINK! I was so happy to hold this precious bundle in my arms. She is an absolute angel and HEALTHY! I had to have a talk with Conner this morning when he was giving the new nurse a hard time. He kept crying when nothing was wrong. I asked him if he missed Hope and he said, Uh-HUH. I told him she'd be back but he'd have to be nice to Miss Irene. She was being nice to him and he needed to be sweet and HE STOPPED CRYING%
CommentsSusan and Roz-thanks. I couldn't figure out who Susan Pollock was for a minute there. But I KNOW! Your sister was here for a while with Baby Jim tonight. I enjoyed their visit. Jim looks so much like a Riggs but nothing like Conner! We celebrated MaMa's birthday here today. No big deal but just big enough to let her know how important she is to us-no matter what! Ms. Amie Smith brought food (good food!), Amanda and Mrs. Emily Nevil had brought delicious chicken salad that we are still eating, and later Ms. Linda Sammons brought us food. We ate it for a Birthday lunch, sent some with Jim and Julie Riggs, and made plates for Sonny and MaMa for supper. We have enough left for lunch tomorrow and hopefully will have all the famiy that is here to eat it. Mrs. Tankersly is bringing food tomorrow night, so we are set! I can't tell you how nice it is to have all the food we need. When I can't get out very easy it is nice to have it all here and have the family stop by to eat. I visited with Connie today. I have to tell you that if you are considering going to see her, please don't feel that if you decide not to go that the family or Connie will feel that you don't care. Connie really is not in a state to benefit from having visitors. At this point, it is for the family to know you are there if you go. It is hard because we know the boys have a hard time with their mother being seen in a state that we all know Connie would never have wanted anyone to see her in. It is difficult because so many people love Connie, but this isn't the Connie that you knew and she doesn't know who is visiting her. I visit one day and she doesn't know I was there when I go back. She amazed us today with her humor and apparent clarity only to realize moments later that, no-she isn't making sense. Just brief moments and then they are gone and she doesn't remember. Her coughs are weaker and you can hear the lack of space and effort in her lungs. Well, after my visit with Connie I walked to the Women's Pavilion to see Hope's new baby. Hope's baby-Alaina (I think that spelling is right) was tiny-5 lbs 14 oz-I THINK! I was so happy to hold this precious bundle in my arms. She is an absolute angel and HEALTHY! I had to have a talk with Conner this morning when he was giving the new nurse a hard time. He kept crying when nothing was wrong. I asked him if he missed Hope and he said, Uh-HUH. I told him she'd be back but he'd have to be nice to Miss Irene. She was being nice to him and he needed to be sweet and HE STOPPED CRYING!!! It was so funny. He missed Hope and was pouting! But he had a good day. So sweet! Conner woke up at about 5:30 am and only napped for 45 min. and is still awake (10:22 pm) I don't know what his deal is! He has been tired all day but he knows his routine is off. He got a warm bath tonight right before bed so hopefully he will have a great night and not wake up so early. Good night! Thanks for your encouragement. We appreciate how wonderful our friends and family have been.
CommentsRoz- you aren't the only one who sends her messages more than once!!!
CommentsHey Betsey, John and Conner! Just wanted you to know I was here and thinking about you guys. I hope John's cold is getting better and he is not getting sick. I am sure that all of you are completely worn out. Try to take care of yourselves. Betsey, I think that is so sweet of you to think of how Ms. Connie would want everyone to remember her. It is hard for me to imagine the state she is in or picture her any other way. I keep picturing the energetic, fun-loving, happy person that I'll always remember her as being. I sure am going to miss her. Thanks for keeping us updated on your site. Just remember you are thought of constantly and loved by so, so many! Robyn
CommentsI can't wait to tell you what a day Conner has had. This morning Miss Irene did his treatment and got him dressed. He was doing so well that I decided to take him with me to a Parent-to-Parent Mother's Day Luncheon at The First Baptist Church. I knew there would be other kids there who had disabilities but I wasn't sure if Conner would benefit from going. Well, while I was getting ready, he just seemed to do well. So we packed him up and took him. We strolled him in the church with his wagon. John helped Irene and me get Conner upstairs (in the elevator) to the nursery. As Conner rounded the corner into the room he caught sight of a BIG SCREEN TV!!!! Yipppppeeeeee. And sitting on top of that BIG SCREEN TV was THE JUNGLE BOOK and VeggieTales!!!! So, needless to say, he had a good time. I put his bipap and pulse ox monitor on to avoid any emergencies and off I went like a normal Mommy-me at a luncheon and my son in the nursery. It was lovely. And he didn't even cry. In fact when I went to check on him, he wouldn't even look at me. Whatever! As we were pulling into the neighborhood on our way home, Conner fell asleep. He looked so precious we couldn't remove him from the car. He fell asleep without his machine hooked up and we don't often get to see him like that. So, we opened both doors to the van and John and I just laid out there with Conner until he woke up 45 minutes later. Since he had had a nap and I gave some food while he was asleep, we then took him for a drive around the neighborhood with the van door open and then to the hospital(door closed)-its right across the street. Connie wasn't too aware. I guess I really don't know her level of awareness. She may know more but not be able to articulate what she is aware of. Anyway, regardless, she held Conner's hand and said, "Hey love..." like she used to. That was nice. Connie really wanted to rest while we were there. She would fall asleep off and on. So we didn't stay long. There isn't too much to say about it but it just isn't good. Not good to see. Marsha, thanks for your visit with Conner last night and getting him to sleep! Also, you did a great job at the luncheon today speaking about Kailyn (correct spelling?). Every time you do that you must feel her near you. But maybe you do everyday? Thanks for your encouragment. Tara, be careful-Marsha is closing in on your man! I will remain neutral and stay out of Conner's "business." Talk soon, thanks Robyn! Thanks for everyone's support. Today was a great day for Conner and it is nice to share good news for a change.
CommentsHi Ya'll I miss you since I got home and back to work...boring job. Conner, you're much more fun than a nasty old job. Hope Mommy is counting your piggies and kissing your neck where all the good sugar is. I can see your smile when I close my eyes. You are surely my little angel. I'm praying for Connie's comfort and for the family's peace of mind. I miss MaMa and our little chats. Tell her I still have her birthday card...forgot to give it to her. Love, Grammy
CommentsBetsey, I was so glad to see you and Conner at the meeting yesterday. You looked beautiful and your smile was bigger than ever. You are so great with Conner and sharing him with others. Everyone was tickled that you came and that Conner was able to come as well. Your group worked together well as a team. John and Mrs. Irene were both sweet. Conner was very excited to see that big screen tv and did mention he might like one of those, ha ha. I am so thankful to know each of you. And yes, it does make me feel closer to Kalyn when I am able to brag about her to others, so thanks for allowing me to indulge. I imagine God allowed the clouds to roll back yesterday so that she might peek in to see her Mommy and smile at what a big girl she was during her time here with us. Now that she is in charge of all the pretty sunsets she is pretty busy each afternoon. :o) We continue to miss her but my how sweet it is to walk down that path of her memory again and love her a little closer. Conner enables me to do that by giving me all the sugar I need and then still has lots more of his own. He is the sweetest and smartest little boy I have seen in a long long time. I love him very much and I am very proud of his Mommy and Daddy for all they do. Love you, Marsha :o)
CommentsDear Betsey, John, and Conner: I am so glad that you were able to attend the parent luncheon. I am sure Conner enjoyed being in the nursery around the other children. I was told that the switch for Conner's TV was ordered and should be in any day now. I think of you all often and the struggles that you are dealing with each day. I admire your strength and compassion for each other so much. Love, Belinda
CommentsBetsey, I got in too late to call you last night, but whoever you want for respite it fine. There is no limit because of the circumstances right now. Please use it freely and I will bring the forms. We will reimburse at the end of the month. If you have any other questions you can call me anytime.It was great to see yall at the luncheon. Let me know what I can do. Love Bunches, Deborah
CommentsBetsey, I was just reading some of the older journal entries and I saw where "Baby Mugs" got broken in the mail. I am sorry, I did not see that before. I will look around DFW and see if I can find him another one. Steele loved it and I imagine if Conner likes "Baby Animals on Uncle Larry's Farm", he would like "Baby Mugs" as well. Are there any others you are looking for and having trouble finding. There are lots of places here and I would be happy to send Conner a new video! He is so sweet. I read about the luncheon you attended. You sounded so happy, I wished I could give you a big hug and tell you how happy I was for you when I read it. You really are so special Betsey. I hope Connie is resting well and not in as much pain. We are still praying for all of you guys daily. We are planning a trip to Georgia soon, I would love to come over and visit. Maybe I could bring Steele if Conner likes being around other kids. They are about the same age. It seems like the past couple of times I have come to see you, either Steele or Madison was sick and I was always afraid of spreading germs. Hugs and kisses to each of you! We love you lots! The Petty's
CommentsHappy Mother's Day Betsey!!!!!!!!!!!
Commentsthanks, Happy Mother's Day to all you other Mother's out there and Connie. I am tired. I am going to sleep. No nurses this weekend. Things are just the same around here. Conner had a fine day. His Daddy took care of him this morning and I slept. He watched videos and sat out on the swing with me and Bessie. Aunt Nancy and cousin Matt came to visit later and Conner was his usual rude self when they got in the way of his tv. He's been a sweetie today as usual. I am so lucky to have him. He makes me a good momma.
CommentsHi Conner's Mommy, it's me, Casey! Just wanted to say that I hope you have a wonderful day today on Mother's Day!My mom reads to me all about Conner and your family. I know how much you love Conner because I know how much my mom loves me! I know it is hard sometimes to take care of Conner and how much you must worry about him. But take it, from me, a boy who knows, Conner and I are so lucky to have the special Moms that we do! Say "Hi" to Conner for me. Tell him that I have a tent just like his that I love to play in, too.
Comments
CommentsBetsey
CommentsBetsey, sorry it's been awhile since I've written you a note, but believe me, you, Conner, John and all of the Riggs family have been in my thoughts and prayers. Such wonderful people who have perservered so much! I know things are pretty bleak right now, but I know you're always looking for that Rainbow Betsey and other's will draw from your strength. You are such an anchor that firmly holds on with Faith. I know it is late this Sunday night, but I couldn't let this day by without telling you, of all the deserving mothers in this world, HAPPY MOTHER'S DAY BETSEY!!!!!!! There are no words, or may there are words, and I just can't put them in the sequence they need to be placed to describe my admiration of you and you as a mother.
CommentsBetsey, sorry it's been awhile since I've written you a note, but believe me, you, Conner, John and all of the Riggs family have been in my thoughts and prayers. Such wonderful people who have perservered so much! I know things are pretty bleak right now, but I know you're always looking for that Rainbow Betsey and other's will draw from your strength. You are such an anchor that firmly holds on with Faith. I know it is late this Sunday night, but I couldn't let this day by without telling you, of all the deserving mothers in this world, HAPPY MOTHER'S DAY BETSEY!!!!!!! There are no words, or may there are words, and I just can't put them in the sequence they need to be placed to describe my admiration of you and you as a mother.
CommentsBetsey, sorry it's been awhile since I've written you a note, but believe me, you, Conner, John and all of the Riggs family have been in my thoughts and prayers. Such wonderful people who have perservered so much! I know things are pretty bleak right now, but I know you're always looking for that Rainbow Betsey and other's will draw from your strength. You are such an anchor that firmly holds on with Faith. I know it is late this Sunday night, but I couldn't let this day by without telling you, of all the deserving mothers in this world, HAPPY MOTHER'S DAY BETSEY!!!!!!! There are no words, or maybe there are words, and I just can't put them in the sequence they need to be placed to describe my admiration of you and you as a mother. You are such a wonderful person and such a wonderful mother and caretaker of your precious little angel, Conner. I guess I better go for now, it is late, but I truly hope you had a Great Mother's Day and if there were ever a more fitting example of true "motherhood" than you, I'd like to have the pleasure of meeting her also. I know everyone says this and everyone means this, if there is anything I can do for you, don't hesitate to call me. Let me know the latest with all the agency stuff and if I can help with any of the paper work or red tape or anything, I try my best to get it done for you. Give Mr. Conner a big ole' kiss from his secret admirer in Metter, Ga. Take care and Love you much. Terri Bland.
CommentsYou're so sweet Terri... You give good pep talks! Hey, I feel like a good MOM! I sure ain't the best but I love my youngin' I've been in the deep, far south almost ten years now-its about time I pick up the lingo. Anyway, speaking of loving mothers, Connie is still in the hospital. To say there is no change would be misleading. Actually, there is no situation to change to when you are next to death-except death. Of course she is worse. Each minute, each hour is that much more time for tumors to grow or lungs to fill or kidneys to fail. Death ain't pretty folks. Never has been, never will be. Can you tell I am deliriously tired? I can. I get very sarcastic. I have a nurse so I better get some sleep. Conner and I enjoyed our day. I got Rugrats in Paris for him on Pay-per-view. That was his treat. My treat was to lay outside on the other side of the back door from him in the sun. He was so close I put his pulse ox outside with me while it was still attached to his foot. I also had his monitor. He liked the movie, thank goodness. It was still a little hard laying out though because he needed food, turning, switching out face cloths, and lots of kisses! Conner is so wonderful. He gave me big smiles today and lots of kisses. He turned blue a little while ago which is unusual at night but he is fine now. I can't think too much about it or it will make me nauseated, especially since I am tired. I am off to sleep. I need a good escape romance or mystery novel to get my mind off the bad stuff before I go to bed. I have stuff around here. I'll go find one. Tomorrow is another day. Lets hope its at least a pretty one. Marsha knows how I hate those rainy days. Oh, Belinda, we got the switch and Conner played with it turning the tv and his ball of light on and off. He "got it" but kept turning the tv off and I would have to push play to start the video back. Over and over. And Bonnie, we got the proofs in the mail and I am still trying to figure out which pictures I like best. I will hopefully email and tell you the ones I pick in the next day. Talk soon.
CommentsHey Betsy! I am glad that you and Conner were able to get out and go a few places last week. I just wanted to let you know that I continously keep you and your entire families in my thoughts and prayers!! I hope you know how much everyone admires you for your strength and dedication to your family. I hope you will call me if there is anything at all that I can do. I will check with you about food. Let me know if the family needs anything at all. Take care of yourself and know that we are thinking about you and your family! Love, Amanda
CommentsHi Betsey- I hope you had a wonderful Mother's Day. You deserve it more than anyone. I hope that one day when I'm a mother that I will be half the Mother that you are to Conner. Your strength, love, and care for Conner reach far above the heavens. I am so proud to call you my "Friend". Conner is very lucky to have such a special mommy. I hope that Mrs. Connie is resting well. I pray everyday that she will be spared from pain. Give my best to everyone. Please give Conner big kisses and hugs. I miss you and think about you and your family everyday!!!! Lots of Love, M
CommentsIt's kind of hard to think of the great mother's day I had yesterday with my family at Billy's house...I didn't have you and Jeff there in body but I had you in spirit and I know there will be lots more good times and then I think of the Riggs - those sweet boys and Sonny and all the pain they have endured watching Connie grow weaker and slip further from her strong presence in their lives. And oh God how I know the pain they still have ahead and it just hurts not to be able to absorb some of that for them. But unfortunately some things we have to experience for ourselves and no one, not the most well meaning and loving people in the world can shield us from it or lessen it's effects. But I hope they will know that the Carlisle family loves them more than we can say and we always will be here when they need us.
CommentsMaria, I guess you've guessed I won't be coming down for the SMA fundraiser. I am sorry, I should've told you more directly. Grammy, I told even know if we told you Happy Mother's Day. I think we did but I hope you had a good one. Happy Birthday to my brother Billy! Needless to say, you are OLD Billy! Uh, I am sick. I got sick as the day went on yesterday and I went to bed about 7. I was going to cook a really good supper but I had to stop in the middle and get in bed. My muscles ache and I feel naseated. Beautiful. Conner is doing fine today but I really hope he doesn't get whatever I have. Actually, I have to go. I have an appt. Connie's not lookin' well nor does she sound very good. That is to be expected. Thanks. OH!!!Robyn and Laura, I got my package and I love my stuff!!!!! What a perfect Mother's Day gift for me. I love lotions and face and hand stuff. I put that other lotion you gave me, Robyn, on Conner when he gets out of the bath and he smells great. Of course I use it too. Thanks so much!
Commentsuh, I can't even write. Just read the note above as if I made no writing mistakes or misspellings.
CommentsBetsey, Are you having nursing problems again. Let me know. I hope you are feeling better. Love Deborah
CommentsI regret having to tell any of Connie's close friends who are reading this, especially Miss Lucie, but some may not know if I don't post it here. Connie passed last night about 11:15. The funeral will almost definately be on Friday. I'll tell more when I know.
CommentsVisitation Thursday 5-9 and Funeral, Friday at 4:00 p.m. Funeral Home is Joiner-Anderson and church is First Baptist. Conner is doing fine. He talked up a storm today and started right out singing one of Grandmommy's favorite Veggietales' songs this morning. I think she was singing in his ear. As far as everyone else, I honestly can't know how each is feeling or doing. Its such a personal kind of thing. Everyone says "I'm fine" which means "I'm still functioning." Thanks.
CommentsBetsey, Thanks for taking the time to keep us posted, even in the midst of your grief. I am praying for all of you. Lots of Love, Shelley
CommentsBetsy - The funeral was so lovely and touching yesterday. It broke my heart to see Mr. Sonny, the three boys and you and Julie in so much obvious pain. Miss Connie was truly one of the most wonderful people I've ever known and we will all miss her so much. I hope you can all take some measure of comfort in knowing that we all love you and that Miss Connie is smiling down from heaven watching all of you. I am glad her suffering has ended but so sorry for the void that you all must be feeling right now. As always, you are in my prayers and I know that God will continue to give you the strength that we all so admire. Much love, Laura
CommentsLosing Connie has been so very hard for all of us in a very personal and individual way. But we don't for a moment think we can feel what Sonny, Jim, John, and Daniel are feeling right now, and dear MaMa. I just watched the video that I took in the hospital the day that Conner was born and remembered the monumental happiness we felt that day. We shed tears then, also, but they were tears of joy. I'm so glad that we had no idea that day that so much saddness was ahead for us. We were able to be just plain happy...with our hopes and dreams and expectations for a happy future. And though thinks look pretty bleak right now, we have to know that is still happiness ahead and we have to enjoy it wherever we can find and for as long as we can have it. There have been many times in my life when I thought that I would cry forever, but I didn't, I actually laughed again and it felt right to be happy. Of course, right now it feels right to be sad and I am so sad. I'll always remember Connie for the special person she was and when I talk to Bill in heaven, I'll be telling him to go find Connie cause he sure will like her, and she can tell him all about his grandson, Conner, and how special he is. I miss you little guy - make mommy do your "piggies" so you can think of grammy and smile.
CommentsMy Dear Betsey, Such a blessing you are for all of us. Wouldn't Connie have been so impressed with the out-pouring of such love for her and her family? All the people she had touched. I bet she could've called each person by name. Mandi and I recalled all the many memories of the Riggs family on our long drive home. We didn't run out of anything to talk about. I felt so reconnected as I was back in the church where our children were dedicated. Sonny was Mandi and Mark's Decon and stood with me during the dedication. Oh such memories. Another wonderful moment in my return was getting to see the "Fabulous Conner". To touch him and talk to him. And I did remember not to get between he and the "Veggie Tales" video. Connie sang the songs from the video to us on the beach last summer. She could always remember words. What fun they are having now! Betsey, you were so very gracious to invite us to your home. I am very grateful to you and John. Connie is still bringing joy into our lives with the wonderful memories and those wonderful smiles. Our school is over now, but we will still keep everyone in our prayers and our hearts. Keep your smile and those bright eyes glowing. We always knew how beautiful you were because Connie told us so much. And of course, she was right, as always. WE love you. Miss Lucie
CommentsWell, John, Sonny and my friend, Lorie, went to church this morning. I wanted to try to take Conner but I was so tired. I didn't feel like it. But I hope we can do that regular enough that Conner would expect it. That would be neat for him if he could make the trip. Honestly, John and I always talked about when we had children they would go to church regularly because we wanted them to learn about the Bible and appreciate the security that going each Sunday offered. I wanted my child to learn early what I barely know now. Conner probably knows more about the message of the Bible through watching VeggieTales than I have picked up in a lifetime. Why should we amend our plan? Conner does anticipate activities now so why not do what we had planned to do and take him. Well, we thought we couldn't but maybe, maybe, maybe we can. If we can expect it and plan it well, maybe we can get him there. I just don't know. We'll see. ANYWAY! I was so satisfied to see you, Miss Lucie, and Mandi. You are both very special people (and talk about beautiful!). But we are lucky that Connie (and Sonny and the boys) have made such wonderful friends because the support has been like beautiful flowers lining the sides of a seemingly endless, painful road. We see flowers as far as the eye can see on both sides of the road. We also see lots of beautiful flowers and plants at Sonny's and our house. I think Conner is allergic to some of these flowers and I need to get them outside (on our new sanctuary we've created on the patio with plants and flowers). He's had a hard time with s-n-o-t since I brought some flowers home from the hospital the night Connie died. I had taken them to his room so he could see how pretty they were. Poor baby! He is doing pretty well today. We have a good nurse with a respiratory background so she's handling him pretty well today. I got to rest this morning which felt great. Conner is so sweet. He did enjoy getting to visit with so many people that loved his grandmommy. I know Connie is watching over him. That seems so hard to say. It is so hard to think that I can't go over to her house and see her or call her and ask her valued opinion. I always would ask her about what was "appropriate" (and then do the opposite-just kidding!) Not only did she have excellent judgment but could convey her message without damaging your feelings. She had to be that way with the degree of sensitivity of those boys. They would really appreciate me saying that, huh? Well, like I said before-when asked how Sonny, John-Jim-Daniel are doing it is so hard for me to know. I can say that there is a somber atmosphere here but I can guarantee that the moment things get too somber or serious, Sonny will say something so funny that we all can't help but laugh. He and John do that all the time. Thanks. Thanks to my friends who dropped what they were doing and drove or flew here or just thought about us from wherever they remain. Thanks to those who stopped to see Conner and those who sent flowers, those who sent money-to the memorials or to us, thanks to those who called or sent cards or plants. Of course we want to thank you individually but for now know we do appreciate all the love that Connie generated. I can't say anymore. I now have to go cheer up by kissing my sweet yet spoiled 22 month old angel baby on the lips. He kisses me, you know! I say, kiss mommy!, and he puckers the best he can. He's the best! Big, innocent smiles like all is right with the world as long as he is okay and at home... I will go back and kiss his soft cheeks and tell him to tell his guardian angel I said, hello.
CommentsWe're spending the night with Sonny tonight. I told him he'd probably prefer to be alone after he gets a night of us. We all ate at Sonny's tonight. Conner was super cute earlier when he wanted to go for a ride and he said, "ri-ri-ri." I would have never known what he was saying except John had asked me-in front of Conner-if I wanted to take him on a ride in the van. He has said, "ra-ra-ra" before and didn't know what he was saying. But now I do. Gotta go!
CommentsAt Sonny's again tonight. Conner's doing well. We talked today. He is so cute. I said, "i-i-i-i-i" and he said, "i-i-i-i" and I said, "aaaabbbeeee" and he said, "abba." I guess that consitutes a conversation. hmmmm. We read, too, but he wouldn't let me change books, uh-uh...uh-uh (no) over and over until I read, Rolie Polie Olie again and again. We are all sticking fairly close to one another so that helps but there are gaps in the day that are filled with lots sadness for those closest to Connie.
CommentsHey Betsey, I'm worried about the meeting. I hope it goes well. Please let me know if you want me to come. Let me know what happens.
CommentsThanks Deborah. Its funny. You're worried. I don't think I should be worried about anything. You are welcome to come over in the morning. You must be doing your job if I am not thinking about it. No, I think that's the problem with John and me. We think any service we get is better than nothing but I know from your point of view, we should have more done than "just anything." I don't care about anything except Conner getting what he NEEDS and what is best for him whether that is the best equipment, the best care from me or anyone. I have the "I'll just do everything myself" mentality but that isn't always what's best. I have definately learned how to accept help. I have learned that I can't do everything. I get overwhelmed and depressed because taking care of Conner is too much for one person (two people). It is really a business. And I don't feel like a CEO right now. I feel more like the emotionally wounded, psycho mailboy (uh, I'm not really psycho though). Accepting your help Deborah has been great and I appreciate your asserting Conner's needs when I am too overwhelmed or ignorant to know when to do so. Speaking of the king of our house and his granddaddy's, Conner had a regular kind of day. He woke up, had treatment, got bathed, got dressed, watched videos, fell asleep to music and ball of light, woke up, moved to den, visited with baby Jim,Daddy,Mommy, Granddaddy, Uncle Jim, Aunt Julie and Uncle Daniel and Miss Jane (Yawn) while watching videos and singing and talking, talked to Grammy twice on the phone, had treatment, watched the rest of Babe while Mommy rubbed baby, listened to music and watched light and fell asleep. Exciting day, huh? That is a regular day with suctioning and inexsufflating in between and intertwined in all the activities. This is quite typical. Not too bad when the baby doesn't turn blue. I hated today. I am glad it is over. I laughed and I relaxed a little bit but not really. Some days I just get tired of EVERYTHING! Today was one of those days. I just felt like I couldn't think about doing one more thing but of course what choice do I have? If I can look forward to something, anything, it makes the day easier. I may go to my brother's Sat in Loganville. That would be something to look forward to but I don't like to say good-bye to Conner. It makes me nervous. John is the only one who can make me feel better about going and I don't know if he can do that. We'll see. I wish I could take Conner with me but he just has such a hard time. It just invites blue episodes. Anyway, enough about problems. UHHH! I hate problems. I wish I were normal with no problems. I don't invite problems, I don't think. I try to live without them if possible. I just want a simple life without all the involvement in complicated issues and feelings. I simplify and simplify only to have uncontrollable things mess up my life. At least I have my sweet, precious baby to remind me to just live and smile because each day is precious. So!, I will smile for you now and go on to sleep. Sweet dreams. Oh, I found a good easy read, escape book. It is the writer who names her books by the alphabet. Nigh-nigh, as Conner says.
CommentsGot this in my email today: Dear Friends and Supporters of Families of Spinal Muscular Atrophy - There is more good news in research into SMA. Scientists at the University of Pennsylvania have found evidence in cell cultures that 2 vitamins may lessen some of effects of SMA. These 2 vitamins are B12 and Folic Acid. These tests were done in the lab in cell lines and have not been tested yet in humans. Researchers emphasize that this is not a cure for SMA, but it may help. Further investigations will proceed very soon. The entire press release and a discussion of the implications of these findings (as well as other research news) can be found on our web site: http://www.fsma.org Thank you for your support! Together, we will find a cure! Audrey Lewis Executive Director, FSMA mailto:audrey@fsma.org I thought that was important to share, especially for anyone who has made any donations to the SMA charity in Richmond Hill or fsma. They really are making advances that can help Conner. Maria, thank you and Debbie, Payton's mom, for being such SMA advocates there in South Florida. You have raised a lot of money already and I know your event will be a success. I can't tell you how important all your worrying about this thing is to us. The more money-the more research. And you all have raised a significant amount already. If anyone out there prays for a miracle it will come in the form of a research breakthrough. And that comes from $$$$ donated to the sma charities. I am not a salesperson, just desperate. Too bad I am already resigned to the fact that Conner will probably not live to see a cure when a cure is so close. I just don't know. I don't know what to think about it. Sometimes I think that if I do a really great job and keep Conner alive until he is about 6 or 7, he may see a cure. So much can happen in just a few years. However, the thought of how much could happen with Conner to keep him alive that long makes me want to throw up. The thought of him being intubated in the hospital begging the nurse to please give him morphine before I have to leave for the changing of the shifts makes me want to vomit. Seeing a desperate, pleading look on his face to take him home while he has tubes and wires crossing his skin and bones makes me want to vomit. I just don't believe that putting Conner through what it would take to keep him "alive" is worth the suffering he has to do to keep him alive. Its a tough question. Would you suffer tremedously for two days to live possibly a week or five years longer? I can't answer that. I do believe in God and I do believe that those difficult questions will be answered for me when the time comes. However, there are decisions that WE make that guide Conner's future regarding suffering. I am willing to let him go early so he never has to suffer again rather than have him here for me longer. The reason I got off on this tangent is because of watching Connie suffer. I don't want Conner to die a drawn out death, weak and hardly there-ravaged by the effects of this disease. I'd rather he die with as little suffering under his belt as possible. Please, I hope no one misunderstands me and thinks that I am making any judgments about decisions others make regarding their children. Each child and situation is so different. If anyone could come live with us and go through with CONNER and his degree of weakness I really think the consensus would be the same. Each child and family and decision about that child's future is so very different and I understand that. This is just our decision based on our pasts and feelings and Conner's past and his current condition. Thanks, talk later! OH!!!!! Conner's day! He had a good day. He slept late, had Tara and her grandmother came to visit and cousins Dorothy, Will and Hannah. That was great. Thanks for reading to Conner-Tara, Dorothy and Hannah. We enjoyed all our visits today! Conner is now watching Babe and talking. Talk soon, Betsey
CommentsHi Conner Grammy is thinking of you and loving you today as always. I can't call you because it's only 7:30AM and Mommy doesn't allow Grammy to call this early. I bet Irene is there, but you're all sleeping, and resting up for the long day ahead. I think you might have a day trip planned today. A "little birdy" told me that it's Uncle Daniel's birthday celebration day. I know that celebrating is hard right now, but we must all remember what a great "celebrator" Connie was. She loved life and her family and wanted to do special things for them and keep them together in love and happiness. So you guys pay her a great tribute and go and celebrate and laugh alot, because it's what she would want and she'll be watching! Happy birthday, Daniel...we love you
CommentsHey Betsey Conner is in the clinic on the 13th. I didn't want to call again. If there is anything else let me know! Love bunches, Deborah
CommentsWe had a great birthday with Daniel and family (Connie there in spirit) at Ruby Tuesday. We did presents and cake there and took pictures. Conner stayed home with a babysitter (a super specialized nurse babysitter-Hope and her precious newborn baby girl, Alaina). Julie had to leave with baby Jim before the present opening but we know how that goes. I couldn't help but laugh when Jim would yell out because it was so normal and I think normal is just beautiful and wonderful. I would love to take Conner to a restaurant and have him yell so loud that he disturbed others and had to take him home. That would be GREAT! Anyway, I really don't sit around and compare as often I mention it here. Just a fleeting thought for now. I am about to get dressed and go to my brother's. I will lay out in the sun by his pool, visit with friends, eat good food (Billy likes to cook) and have a beer! Sounds like a really fun time. We have Irene-Conner's nurse, Conner's doing fine (talking in his sleep this morning!) and John is nicely sleeping. So, I shall go!
CommentsHey Betsy, John, and Conner, I have been thinking about all of you and of course, all of the Riggs family, but I figured yall would be so overwhelmed with visitors, guest, etc.. but now I am here to check on you guys and see if you need anything at all!!! Betsy, I hope you got to enjoy you day at your brothers. You deserve a break!! Call me if I can do anything for you and your family. Amanda
CommentsDear Sweet Betsey, You are such a good Mother. Don't ever doubt yourself. I send throught you, a great big hug and kiss to the "Prince of the Manor", Prince Conner. He's so cute. And how he has grown!!! Those long legs are almost over the end of the wagon. I hope you are well and did get some rest at your brothers. Remember you need to be pampered sometimes also.. Take care. Much love to all. Miss Lucie
CommentsConner how are you feeling today? How are we doing. I want to go back to my house. I know how to write my homework. Now that's unusual. I went to Disney World. I saw Pochahontas, I saw Ariel, Sebastian and the fish and beauty and th beast and um I want to say I saw the Jungle Book. I saw Aunt Betsey yesterday. Goodbye. I love you, Conner.
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CommentsI think Abby did a better job than I did. The dictation was taken by grammy, but delivered by Abby. As you can tell, she gets a little distracted as she talks. Conner, grammy loves you and misses you very much, but I have to go be a "power puff" girl right now, so we'll chat later. Hope you like your little Babe pig that mommy brought to you.
CommentsI love you Abby! Conner loves you. We practice saying Abby all the time. We also say little prayers for our friends and family that need little prayers. We aren't the only ones going through tough times. I enjoyed taking a nap with my quiet, introspective nephew Drew Sunday afternoon. And rubbing my feisty, "not going down without a fight" niece Abby's head and hair. And hugging my artistic, sensitive niece, Lauren. I missed my mommy loving Conner, though. We are going to get his x-ray today on his shoulder. I hope its okay. We'll see. We just never know with Conner. Oh, how we love him. I had a great time at Billy's! Fun, fun. And now I am home trying to take care of business. So, I am off to take care of business.
CommentsWell, I wish I could yell that I hate SMA but it would be like yelling that I hate the color of Conner's hair or something. Its such a part of him that I feel obligated to love this wretched disease as much as his golden brown hair. But I don't. I hate SMA!!!!!!! I hate that Conner's genes are flawed. I hate that I passed on a flawed gene to my son. I hate that Conner has to suffer just to take a bath. I hate that I have to watch him suffer and suffocate and flop around just to do the most simple tasks. I hate it and it makes me so angry that my son, MY SON!!!!! has to suffer and there is not one thing that I can do about it but watch it happen. I have to watch him suffocate and just hope that all the machines in our house will save him for just a little while longer. Or just call an ambulance and have them shove a tube down his throat. I don't think so. I hate that I can't pick him up and soothe him. I hate SMA. I hate it, hate it, hate it!!!!!!!!! One thing about it though is that it isn't the result of evil. What I mean is that with my dad's death, being gunned down in the Bahamas-that was evil. A genetic disease just IS. It just happened. Nobody did it. There is no one to blame. It just IS. But the result of this invisible, genetic mess up is huge. It is so bad for his little body. I also hate the terrible, uncontrollable things that are going to happen to others who I know.
Okay, enough negativity but I can't help but get very angry sometimes. Anyone who has to watch her child suffer gets angry from time to time. There is no cure for the anger except!!! smiles from Conner. I love to get his precious smiles. I love to see him smile and say, "uh-huh," when I ask him if he wants a sticker for being good. I love to watch and hear him laugh when I kiss his round, tiny belly. I love to watch his eyes light up when his daddy walks in and hear him call, "DADA," when John leaves. I love to snuggle up to Conner and kiss his soft cheeks. I love, love, love him!!! He is so precious. I love to hear him sing when music is playing. I love it when he tells me, "no," like a typical two year old. I love to plan fun things for Conner and watch him enjoy them. Okay, I have vented. Now I must go. Conner is going to the doctor today to get checked in his ears, throat, lungs, etc. I need to go get ready and take him. It is quite an ordeal but hopefully he will do okay. We got stuck in the bath tub last night. John had run to the store and I was going to "just bathe him real quickly." He got a clog and I had to bag him until John got back and was able to get me the inexsufflator and that still didn't get it. We finally got a break and managed to get him to his room where we got him calm and clear. BUT he never turned blue because I managed to keep getting O2 to him the whole time. That incident was what made me so angry last night. No baby should have to go through that. But he got his bath today and he did great and he got a sticker and he smiled. Great!
CommentsConner went to see Dr. Deal today and everything is just fine. Lungs, shoulder, throat, ears-all is fine. I need to do something more with his diet though. I am just so paranoid about giving him too much food because he does weird things when I do. But I have changed his eating schedule so maybe we can fit a little more in until the Dr. helps me figure out a more suitable diet. We are switching his formula to Vivonex soon and we'll see how that does. He's done fine on it before-but only when I diluted it. Anyway, that's just another whole source of worry that we'll get worked out. Another source is stupid bills and letters from the hospitals or collection agency. We have insurance and medicaid which is supposed to cover most everything and East Ga. keeps billing our old insurance. And then I found out today that a check from the insurance company was lost by the hospital or somebody and the account was turned over to a collection agency! And Memorial sent a threatening letter but everytime I call our account is balanced out at 0. When I called today I found out the old insurance company had just paid the bill this month for something over a year ago. Why didn't this show up all the other times I have called?!!! This kind of stuff happens all the time. There is always some mix up that causes so much stress until it can get worked out. In the meantime, what does that bill sent to the collection agency do to our credit? Our credit is probably messed up anyway because of all the other mistakes that have been made. Do I sound like a complainer or what? Who likes a complainer? Not me. So, I will not complain anymore-TODAY. We have a nurse, thank goodness, and Conner is going fast to sleep. He did very well tonight and is such a sweetie. Sorry he was so tired for you today Belinda. Next time, we will try to make sure he gets his nap before you come instead of him trying to nap while you are here. We appreciate you so much. He looked cute with all his "good job" stickers today. After speech therapy, he had one sticker for doing good this morning and not whining during transitional things, one big sticker covering his entire hand for being a big boy at the doctor's office and a sticker on his shirt for doing a good job in therapy. I had to soak his hands in warm soapy water to get them off. Update more later. I hope Miss Lucie and Mandi are enjoying their vacation!
CommentsHi Betsey, John and Conner! I hope you are all doing well. I was so thrilled to see Conner had a good check-up. I checked in tonight just to see if you told us about his doctor visit and you did. I really enjoy checking in and seeing how you are. Betsey you really are very good at journaling, it is such a nice way to stay in touch. I can understand your frustration with insurance, collection, hospitals, etc. I wish there was a way someone else could handle all that for you and you did not have to mess with it. I can imagine it feels like such a waste of precious time to argue with someone about who is paying what to whom and where and when etc. It seems like people who work in those jobs really do not care about any other circumstances. Sounds like Daniel had a good birthday. I am glad. When I read about you wishing Conner could go to a restaurant and yell until he disturbed everybody, I almost cried. I felt like such a creep because I get so frustrated with Steele in similar situations and I should not. Thank you for putting things into perspective for me. I also wanted to tell you that when you talk about the situation you and John are faced with Conner and you try to explain your feelings about not wanting him to suffer or experience pain, I think that is so admirable. I think you think people are thinking you should do something different but I don't think they do. People admire your courage and strength. You have taught people truly valuable lessons this past year and a half. I wish so much that you did not have to go through this and I wish Conner did not either. Who knows maybe you will help save many lives down the road and change the fate of SMA. For what it is worth I hate SMA too! Conner is so precious and so special to so many of us. He has touched so many people in numerous ways. He truly is a blessing Betsey and he is so fortunate to have you as a Mom. We are coming home in June and going to the beach June 16-23. I would love for you to take a day or even a half a day and come visit and relax. I don't know if you could arrange for anyone to take care of Conner or if you would feel comfortable leaving him, but if you could and do I would love for you just to come and let me wait on you hand and foot. I would be honored to do it! Anyway, I'll call you about it but if you feel like getting away for a little relaxation during that week, we would love to have you! I better go for now. It was great to see you and Conner, Madison has talked about Conner so much. I wondered how she would react to him, and if she would understand the situation. She kept telling me and Jeff on the way to the airport how adorable he was. She said "Mom, I know you said he was sick, but he was just the cutest thing I had ever seen." She said, "I just wanted to kiss him all over his face." She thought it was really cool that he tried to smile at her and that he was watching Babe. She has told lots of her friends about him and told me she wanted to visit him again the next time we went home. He really made a big impression on her. Give him a big hug and kiss and tell him his friends in Texas think he is the best. Love you all - and keeping you in our thoughts and prayers! The Petty's
CommentsThanks Robyn. I don't know what to say but, Thanks Robyn. I don't feel worthy! I suppose we all have some admirable qualities. I feel embarrassed when I think of my not-so-admirable "qualities." We all have those, too, huh? Robyn, you've made a tempting offer. I'll just have to see about that! Madison is so sweet. What a sensitive child she is. I hope she tells all her friends that Conner has SMA so their parents will be aware of the disease. More awareness means more funding. More awareness also means that babies get diagnosed before they die for reasons the parents may never end up knowing. I can't imagine a child with sma dying before being diagnosed and the parent taking that responsibility for the child choking or suffocating to death. Who knows how many SIDS cases could have been sma babies, undiagnosed who get stuck in the night and smother? Anyway, Madison is doing good! She is taking after her Mommy (and Daddy). Conner has had a really great day. He enjoyed his morning with Irene. During his treatment we received a pleasant, unexpected visitor, Mrs. Terri Wynn. She was doing some business and happened upon us. Of course, I invited her in to see Conner since she knew the family. Very nice. I wish Conner wasn't in the process of getting inexsufflated so he could have smiled at her. But he cried! We next had Jennifer (occupational therapist) and later Tara and Jenna. Tara, Jenna and I took Conner down to the pond in the neighborhood. We put him in the van and took some of his equipment and drove down the street with the van opened. We then put him on a blanket on the grass and threw crackers and potato chips and the ducks came running, waddling as fast as they could. They were swarming all around Conner (and Tara and Jenna). They scared you Tara and you know it. So, you can imagine that Conner was probably terrified but he wasn't going anywhere nor was he crying. He just looked stunned. He wouldn't smile or cry-just a blank look. I am thinking he was wanting to fight or flight but could do neither...so he froze. I think that should be added-flight, fight, or freeze. I did that one time when someone tried to break into my apt. in the middle of the night. I heard the door and I was so scared I absolutely froze for what seemed like an eternity. I hoped I would have either fought or ran, but I froze! Anyway, Granddaddy came to visit later along with Uncle Daniel. So, he had a bunch of visitors and lots of excitement. It was a good day. I knew one would come soon. They always do.
CommentsConner had an okay day. He stayed red cheeked and on the bipap a little more. I think his tummy hurt which made everything harder to handle. He got a really good massage (and medicines) from Mommy and later from his night nurse so I know that helped everything. He's fine though. Conner is so sad though that cousin Mattie had an accident and she isn't feeling well. We love you Mattie and hope you feel better very soon. Conner knows how hard it is to be in the hospital and we do, too. love, love, love We are hoping to get to go to a party tomorrow night-John and me at the same time!!! I just have to line up nurses/babysitters. Sonny does a pretty good job. He's an excellent Granddaddy and a pretty good babysitter, he just needs a little nurse support. Sonny spoils Conner rotten. "Betsey, put him another video on! He doesn't need to go to sleep. Put that little boy another show on!" Actually, he calls him "lutu boy." We are going to spend the weekend over at Sonny's. I want to lay out in the pool! Conner usually takes a pretty good nap from about 2-4 usually. That's seems like a great time to lounge in the pool. And cook out!!!! I better go to sleep if I want to do all this stuff tomorrow. We are thinking of all of you tonight who need us, too. I'll have to post up the prayer that Conner says. Its in a book back in his room. You didn't know that Conner says a prayer back to all of you, did you?
CommentsI hate SMA, too! And I totally understand how it is to hate the "things" and circumstances that hurt your children and grandchildren. That's why I also hate drugs and alcohol...and I know it's sometimes irrational, especially with alcohol. A glass of wine should be o.k. but it's hard to enjoy something that has almost destroyed your child. And I also LOVE Conner. Poor little guy being swarmed by ducks and worst the old geese. Maybe he just thought they were the ducks from Babe and was delighted. Betsey, you never told me about the person trying to break into your apartment...you know I would have insisted you come straight home...not really. You have been independent for so long, but make no mistake you are still my little baby. I hear you trying to be angry, yet so afraid of being offensive, always wanting and needing approval. You have gained confidence in yourself since you have lived away from home and even more so since you had Conner, but, deep inside that little girl doesn't want to be disapproved of. Honey, you can't do wrong where Conner is concerned. I wish I could make everything perfect for you...and Conner and all those others we love, but sometimes all we can do is accept. It's very hard not to be able to control our destiny in every aspect. But in the things that you can control, you do a great job. I can't tell you too often how proud I am of you. Give my love to Sonny, the boys, and MaMa. I miss them and will go down soon to see you guys.
CommentsConner has had another rough morning. He just has so much stuff to clear. Last night wasn't that great either. Its just episode after episode. We did enjoy our day yesterday laying out by the pool and cooking out last night here at Sonny's. John decided not to go the party, so Daniel and I went but not until really late. By the time we got Conner situated and ready, the night was gone. BUT I was determined to get out! So, that's the way it goes. Conner is napping nicely now. If he can stay clear this afternoon, maybe we can get him out by the pool for a little bit. Hopefully! Oh, and by the way-Conner is very precious.
CommentsMy Dear Betsey, Yes, we are back. I wish there was some way we could have transported all of you'all to the beach with us. How about a magic carpet? Yes, that would work. It seems from what I have just read, you have had a rough few days. I'm so very sorry. Conner is so sweet and I also hate the condition he is dealing with. But--don't you just love all that great sugar he gives you. Those smiles-those snuggles, and those no's. Such a wonderful young man. Keep your head up. You're doing a great job. And remember, WE love you ever so much.. Miss Lucie
CommentsI can't help but laugh about the attempted break in. I vividly remember that night. I remember you busting into my room screaming about how you were frozen. I know it's really not funny. However, since nothing bad happened, I can look back and laugh about your panic. What good times we had in that little apartment!!!
CommentsHere's wishing Conner, Mommy and all the Riggs a good, peaceful, sunshiny day. I'm off to knock on doors and try to sell some "air"...what a concept. Hope my little buddy is happy today and does lots of smiling. Alison, shame on you for not telling me about the "almost intrusion". You know, I think that happened to me when I first moved to Atlanta, but it turned out to be the Emory student accross the hall coming in drunk and forgetting where he lived. Oh for the simpler times! Love to my baby and her baby.
CommentsBetsey- Hey! I haven't called in a while. Actually- I have moved to Jekell Island (I can't spell)for the summer. I still read the journal two or three times a week. I'm home normally once or twice a week and so I hope to come by and visit. I'd like to send Conner a little package, what size shirt does he wear?? ANyway- I am amazed daily by ya'lls strength and love. Conner has a very special place in my heart and be sure you tell him that for me, please. LET me know if you or/and John could ever arrange a day to visit the island for the day I can get ya'll free passes to Summer Waves.(just a thought) I wish you lots of silly moments with Conner!
CommentsFirst, Mandi and Miss Lucie-thanks for my wonderful and supportive emails. I am glad you had a nice trip. I wish I could have been with you with my mommy. The four of us would be trouble. Conner's day today was a bit better than yesterday. His ear is draining again and he ran a little fever today. Since I know the problem we can now take care of it. He has had rough mornings for a while but now he is just gagging on spit in his throat as opposed to plugs in the lungs. Neither is good. If he's uncomfortable, we just do his treatment with his bipap on (until inexsuffl.) then put the bipap back on. He's worn it pretty much all day yesterday and today. We were able to keep him off of it last night long enough to get a good bath and have him smelling like a sweet flower with the Mary Kay lotion you gave us Robyn. He got such a good massage last night after the bath and after his nap this afternoon. As long as he is on the bipap, he doesn't suffer, so on it goes. Meredith, I love Summer Waves. I went there with a group of foster kids one summer when I did a camp in St. Simon. We stayed at Epworth and I didn't like to drink the water or HiC because of the salty taste. You can imagine what happened when we went to Summer Waves and I sweated and sweated then climbed the "Pirate's Passage" with a sweet blonde haired foster child named Kelly. Kelly was so excited to ride and I had volunteered to make the strenuous climb with her. We got half way up and I passed out on this guy behind me and his girlfriend got mad at me. He got me help while she stood there with her arms crossed. HOW EMBARASSING!!!! I had dehydrated. Kelly asked if I was okay and I insisted she go on down the slide. Actually she didn't miss a beat-"I'm going on, okay Miss Betsey?" Sure Kelly. Anyway, the worst part was that I was in the most unflattering bathing suit. Kelly had made sure to tell me on the way up the long climb up that she preferred the suit I had worn the day before. But I do enjoy the place and I would love to go back, Meredith.
CommentsAlison, remember when Eric and Jimmy would come over and steal Toonces by opening the door with the chain lock still on and squeezing him through the small amount of space? That'd get me everytime. "Have you seen Toonces? Where could he be?" Remember when we dressed up in rocknroll eighties clothes and big hair went to the store? Or was that just me? Anyway, I like a good laugh. Remember when I ate dirt when I flew off the bar on the playground trying to impress the 7th?8th? grade boyfriends? Of course you do. I know. Okay, its over. No more remembers whens....for now. Conner finally went to sleep. I got to visit with cousin Mattie. But she was sleeping which is the best way to be when you are in the hospital. I know she is uncomfortable but if she can just hang on 'til she gets home. She broke her little leg, poor thing...But since she will be immobile, Jennifer and I have decided to get Conner and Mattie together for videos and books and fun. She and Conner can vent about their immobility. Conner was funny today. He wouldn't let me put anything on but Elmo. Irene tried to put on Babe, but he cried. I asked if he wanted to go out, "uh-uh (no)." Later? NO. Elmo, "uh-huh (yes)." Over and over. He has his preferences which he makes known. I'm tired. Good night.
CommentsOh... I could go on and on for hours about our remember whens... What I remember most about Toonces is how freaked out he got when anyone even spelled the word "bath". That big hair at the store thing wasn't just you. I was right there with you. Was that the same time we were laying out on the patio with fans on us listening to 80's music and Chris walked in and caught us doing dance routines in our bikinis...or was that a separate incident? Ha Ha... laughing out loud, you KNOW I remember when you bounced on your face and ate dirt. That is one of my favorites... courtesy of skin tight Gloria Vanderbilts.
CommentsHey Betsey, Is the nursing situation still ok? Let me know if there is a problem. Love, Deborah
CommentsHey there, I haven't talked with you in a while and wanted to send out a hug and a great big hello. You are in my thoughts and prayers and will stay there. Marlee is finally out of school and we are going to be gone for a couple of days. Hope to see you when we get back. Give Conner some sugar for me. Love, Marsha :o)
CommentsWell Betsey, as usual, when I try to write you on this goofy gadget tehy call a computer, I usually mess up and I did. I E-mailed you about a 20 minute babbling letter and instead of hitting submit, Ihit enter about 3 times and then I saw the "submit Comments" Too late, it was gone. You're probably bless that it was lost, I was getting all strung out. So, quickly and shortly, about the bills collectors from the hospitals or where ever that are hassling you, please let me take care of that for you. Mark's Uncle passed away today, so I'm going to be out of pocket until probably Friday, but call me orfax me copies of letters or bills orwhatever that I can help get cleared up for you. PLEASE let me releive some of your stress and let me work on stressing them. HAHAHA. Seriously, I can do that and I want to do that for you. Don't you make me call you, now, you better call me. Also, I will be out of the office next Monday, Tuesday, and Wednesday and back in Candler office on Thursday, so I still am employed, I'b just going to be out a few days. Also on a lighter note, I read your entry about Summer Waves. Yes I remember that day. Tell me again why you were dehydrated????? That was the same day that little 12 year old black boy "cussed me out" so well. I have never been cussed out any better by anyone, before or since then. Wonder where they all are now, and what kind of lives the world has dealt them now that they are adults. I remember all the boys just loved Ms. Betsey cause she was so cute and you looked about their same age. That was two fun years. I have some pictures of you andthose kids that I ran across a while back, so if Inever gave you copies, let me know and I'll give you these. Seems like yesterday. I remember I cried when I left home that Sunday to be there for a week and away from my family for a week, andthen I cried when all those kids got on the bus that day to go back to their homes. I begged Mark for us to adopt that on little boy. I hope life is better for them all now. May be so. Well, I won't get as long winded as before and hopefully you are reading this now and it;s not lost like the other out in cyberspace somewhere, wherever that is........outside of Hopulikit, GA I think. Tired and silly, so give all you guys a big hug and a kiss and tell Conner that his "Secret Admirer from Metter" checked in again today. I;ll be waiting for you to call me or just fax me those "problem bills" you are having. Take care of all of you all. You know I love ya girl, always have, ever since the day of DFACS and the FatMan!!!!! Hahahaha!!! See Ya.
CommentsTerri Bland, you are so silly!!!! what would I have done without your company those days? You made it fun! Conner definately has an ear infection and is getting his proper medication. He was a bit of work today, but with help its manageable. We got to go outside by the pool for a little bit and we threw water. We made water designs in the air. We had a nice visit from Marsha, Marlee and Jake. Conner enjoyed your visit, Marsha. Wanna know how I know? There was a little girl on this video of Conner's who looks like Marlee. When she appeared on the screen Conner smiled real big. He smiled so big, it made me laugh. I looked at the tv and saw a pretty little girl with long blonde hair smiling at the camera. Is he a flirt or what? He gets cuter every day. I don't want to curse it but I think we are going to get to see a horse and a baby horse. Kelly, Conner's old (as in "previous") nurse, has a horse and a baby horse. So....we have made tentative plans. Neato. Terri-sorry to hear about Mark's uncle. I got the bill thing straight. Do you think you could handle People magazine and their insistence on sending me books that I don't have the time to send back then billing me for them? Just kidding-I got that handled, too. Anyway, I'm tired. Some days are just...more....hard...tiring than others. That's something we can all empathize with. We are thinking of our friends and family who need us to-Mr. Brooks, Mattie (Jack&Jennifer), uncles, aunts, brothers, granddaddies and grandmommies.
CommentsBetsey, you take advantage of these great friends you have who can help you with bills, nursing, etc. I know they are all sincere in their offers and you just can't do it all. Sadly, there is only limited time in a day and not much of it is left for you to rest and play, and those things are important, too. Memories are wonderful and you are building them now, believe it or not. There's not much to laugh about now, however, so thinking about the silly times helps. But, Sweetie,eventhough your situation is pretty somber right now, you're still the same silly, fun person you've always been and that's what makes Conner's life fun. Just remember, it's o.k. to be happy and it's o.k. to be funny. God knows you get business taken care of. I hope you and my little buddy have a good "fun" and healthy day...a day at a time. Mommy loves you.
CommentsBetsy - I'm sorry about Conner's ear infection and hope that he feels better soon. Those are NEVER fun and with his complications I'm sure it's much worse. Poor baby! We'll reschedule our official girls lunch out but I'll bring by lunch at noon just to visit. I'm also still willing to write nasty letters to insurance companies and help with bills if you need me. Additionally, we have 6 horses and a very mean (but cute) little pony that Conner can come see anytime. Please let me know - the horses are in our backyard so anytime is convenient. A few are very gentle and we could probably arrange it so Conner could be boosted up to get to pet and touch one. Unfortunately we have no colts at the moment!!! (that would be all I need) My bible study group prays for all of y'all every week and we said special prayers yesterday. I hope this week gets better and there are some rainbows! Much Love, Laura
CommentsSpeaking of remember-whens- what about PECKING!!!! That has to be in the top-10 list of Betsey's funniest moments. I know it still makes me laugh to tears. WE RAISED OVER $40,000.00 FOR FAMILIES OF SMA AT THE EVENT ON SATURDAY!!!!! I was so excited when I had the final total. I hope that this will help to find a cure. We are already talking about the 2nd Annual "Say G'day to fight SMA" event for next year. I met so many wonderful people who are involved with FSMA. There is a new chapter in Tampa and the president (a wonderful, very helpful), Leo Diaz and his wife drove all the way down for the event. We also had volunteers who had family members with SMA who helped out tremendously, not to mention Debbie and her entire family. I was very proud to point out Conner in the video to all my friends and family who attended. Everyone said he was "beautiful"- but we all already know that. Unfortunately, Doug forgot the camera so I don't have pictures. But it was worth all the work and I look forward to the opportunity again next year. Please give Conner a big sloppy kiss from Auntie Reea. I can't wait to give him one myself next month at a very big boy's birthday ;o)!!! Love to all, Maria
CommentsDearest Betsey! My very first time writing to you through your journal. I read it every day and keep up with everything but I've never written so today I decided for some reason that I would. I miss you all so much and I'm so sorry to hear about Conner's bad days. He's the most precious little boy and he deserves a simpler life. You all do. And for you to get upset and yell and say that you hate SMA. Why shouldn't you hate it? Of course you should. We love all of you and we miss you a lot. Give Conner a big kiss from his cousin. Kevin and Kasey send their love to Conner. You're an inspiration to all mothers Betsey. Don't ever forget that.
CommentsHi John, Betsy, and Conner! I have been thinking about you guys and thought it would be nice to let yall know it!! I am sorry I have not emailed or called lately. I am adjusting to summer and trying to come up with a schedule to keep Jarrett and Malory busy this summer. They are not used to me being home!!I hope Conner's ear gets better soon. Those ear infections are not fun. How about some food? My family would love to fix you and Mr.Sonnie some supper one night. My dad has a lot of vegetables ready in the garden, so let me know when yall have a free night and we will bring you some food. Betsy, hang in there and never doubt your strength and courage. You have proven to have more than I feel like I could in a life time. You are a great mama and John is very lucky to have you and Conner!!! Hang in there and let me know if I can do anything. I am always in Walmart and would be glad to shop for you!! Love, Amanda
CommentsThanks Laura for bringing me lunch-well lunching with me too-and doing a grocery store run. I am always trying to get a hold of Daniel during the day for those tasks. That's probably why he said he would have done it when he found out you went. But he needs a break, too! We have no nurse tonight. All sick. I do understand and hope they get well. Deborah, the answer to the question that you are asking either out loud or in your head is, yes. I did. Not available either. What do you do? They called three nurses and they were all sick. And one of our favorites quit. So....I'm up for the night. But you know, from my perspective that's the dues I pay for having a sick child. Boy, that doesn't make sense but I feel it. Maybe I feel like I owe Conner my attention since he's sick even if it makes me really tired. I know a lot of sma parents who are out there in much worse conditions than us. And maybe I feel guilty for that. Who knows why I think what I think or feel? Anyway, Kim Lamb and her kids came over and swam in the pool today. Jacob(6) and I had a great time playing on the floats. They are really cute. We cooked a frozen casserole for supper that someone had brought during the time of the funeral and I made a blackberry cobbler with some blackberries Ms. Beverly Proctor brought over. I made Irene one, too. I hope she likes it! Conner did okay but he was really tired tonight and did me a favor by going to bed before ten. Yay Conner. He talked to his Grammy on the phone today for a long time. When I say talked-I mean he told her all kinds of things. Over and over. His ear is still draining but he sounds pretty good right now as he is sleeping so hopefully it'll be an uneventful night. We're doing fine here though. We're surviving. I am, I know.
CommentsI didn't see all those messages before I wrote for some reason. I just got a blank thing. Anyway, Maria I am so proud of all the work you did. That is a large amount of money and is significant to finding a cure. Very significant. I really take this personally. I am proud of your work and involvement. What a friend to me and Debbie and Payton. What a shame that you know two families with sma1 kids. (but a blessing,too) Amanda, we like food! We'll let you know. It really does help. I made tacos last night and over here at Sonny's, it is tough. It's tough to do food and take care of Conner. The phone rings twice as much because we forwarded our calls and because Conner's been sick. But, food is good. I'll let you know. We'll probably get through the rest of this week and weekend fine but next week or so would be good. I can't tell you how helpful that is. Karen, we enjoyed visiting with you, Mark and the boys. I always like to see other kids around Conner and vice versa. I never had a family member that had any disabilities (very weird to think Conner is disabled). I never knew anyone who couldn't walk or talk or move. There was a girl named Vicki who was in school with me when I was in the first through the third grades-mom, you may remember. She drooled and her mouth and hands were deformed. The kids acted like she was a monster. "The girl who ate crayons." She was biracial as well which didn't help the amount of teasing back then. With all that, Vicki had a sense of humor. When I saw her saying, "boo!" to some kids one day, I remember thinking, "She's kinda funny!" She knew what the kids thought but she talked a lot to all the kids and I ended up liking her and being very nice to her, of course. Well, Conner's not like Vicki to me but he may be to other kids who see him for the first time. He may scare them by all the machines or the drooling. I don't know. You know that really doesn't ever enter my mind until kids walk in the room and feel hesistant to go up to Conner. But as they get more comfortable and end up stroking his hair or asking intelligent questions (like your boys Karen) then I feel so proud that they had such a beautiful, little angel to teach them the lesson of being kind to the "different" kids. Conner is great in that capacity. And I am proud of him for that!!!! But I always knew that any child of MINE would be GREAT!!!!! Far beyond my wildest dreams. Absolutely Superb.
CommentsBetsey - after all these years you still continue to amaze me. Your ability to see the good in everything is such a blessing. You help the rest of us really put things into perspective in our own lives. Love ya, Alison PS - Pecking is definitely top 10! I still demonstrate that one quite often. Do you still get as excited about "Panama (Phoenix) City" as you used to?
CommentsHello Betsey, Conner and John! You are so right about my kids learning from Conner. Kasey wants to go on the sight all the time just to look at Conner's pictures and to see if you have posted any new ones. He was very excited when he saw one of Aunt Connie. I know when the boys first saw Conner they were a little nervous and had lots of questions but now-they just want to see him. I try to teach them that not all kids are as fortunate as they are to be able to go outside and play-to be able to have friends come over and play video games or even the simplest things in life that we take for granted like sitting down and having dinner with their family or reading a book or taking breath after breath every day without help from a machine. We all take these things for granted-not meaning to but we do. Conner has taught us all a lesson in this family and he's brought such a joy to my life in such a short time. I'm so far away and I don't get to see any of you very often but after I leave from there-I always drive away crying-sad and happy tears. Sad-because I'm so afraid every time I leave it will be the last time I get to see Conner and happy because I got to spend time with him. I hope he has a great day today and the boys asked me to please tell you to show Conner their pictures today. He has become very important to them. They talk about Aunt Connie a lot and tell me they miss her and ask if she's watching over them. I say-of course she is-she loves us all. She watches over all of us. That's a good feeling! We miss you all and hopefully we'll be up there at the end of the month and then of course to celebrate Conner's big day next month. They know when his b-day is and they can't wait to bring him a present.
CommentsBetsey, what was the little girl's name that used to come to our house all the time and you were about the only one who would spend time with her, was it Lisa Rickerson? I wonder what happened to her. She really had quite a spirit to have been so "different". Hope my little man is doing better today and hope mommy gets some rest. Wish you were here. I have coffee making and some chocolate cupcakes...I just need a companion to enjoy them. What does Conner want for his birthday? Courtney was asking me and it's just so hard to know what he might enjoy that he doesn't have. She asked about the ball lamp and I assured her that was a necessity for his night-night time. I told her Spencer's is a good place to shop, but is there anything left there that you don't have? Books, that make sounds might be good. Give us some ideas. I look forward to seeing Karen and Carla and all of Connie's family and friends. The only good thing that came from Connie's hospital stay was getting to know her loved ones and being able to love them also...I can hear her voice saying "My love" to Conner and I know he hears it, too. I miss knowing she was there. And my heart hurts to think of what it's like for all of you without her.
CommentsI think Lorie (Maria, your sister) spent the most time with Lisa Rickerson. I never did understand exactly what her illness was but after Conner got sick, I thought about her and her parents. Well, Conner has done pretty good today. He got a sticker for OT and did good for Speech-although he whined a lot. He got better a little later. He's doing pretty good though. Write more later.
CommentsYou have the most precious baby!!! I have had many days where I go and see Conner and think about his accomplishments throughout the entire week. But, I hope none will be remembered more than today. Seeing him curled up in a ball with his hands laying by his face while he slept was priceless
CommentsYou have the most precious baby!!! I have had many days where I go and see Conner and think about him throughout the entire week. Not one day do I take those little "LaLaLa" sounds for granted or those little goodbye waves when I leave. But, I hope no thoughts will be remembered more than today. Seeing him curled up in a ball with his hands laying by his face while he slept was priceless. I think of him often, and even though I don't tell you, you all are always in my prayers at night (and every other time you all cross my mind). I will see you next week. With love, Jennifer
CommentsFor those keeping up and don't know what "pecking" is: its when Maria (Aunt Reea) and I were in about 7th grade. It was raining and we were running down the yard to catch the bus. I slipped in the grass and hit my driveway running with my face about a foot away from the ground and my arms up behind me taking long strides to try to catch myself from falling on my face-still going down the driveway-I ran right pass the bus and the bus driver just watched me peck on by. I came about 2 inches from smacking the top of my head on the end of the bus before I caught my step and walked back to the door and entered up the steps. The bus driver said, "I wondered what you were doing running pass the bus like that." I wasn't running-I was about to die by uncontrollably thudding myself against the bus. Maria will never forget how funny I looked-like a chicken pecking. I was just really scared. Anyway, about Conner...He is having a pretty good day. The physical therapist came and he got 2 stickers doing really good! Jennifer-Peanuts is trying to out do you! Thanks Jennifer,by the way. We sure do appreciate you. You and Mary are very important to us and Conner's care. Your work is really responsible for Conner's comfort. His ear infection, I hope, is clearing up. His mood is better. He didn't want Irene to leave today. He told her bye-bye in a whiney way and said "no" (uh-uh) over and over when she was walking out. Irene talks and talks to Conner. You'd think he doesn't like it when you talk during his video but obviously he likes what Irene has to say. He prefers her to just stay and talk to him. He is napping so sweetly on a pillow with his bipap on. He looks like such an angel when I put him on the pillow. That will hopefully help with his ear. Okay, talk later.
CommentsHi Conner, I have your girl cousins here this morning. We had a long night with Lauren coughing. She finally got in the bed with me and I rubbed her back until she fell back to sleep. She and Abby are still in bed and I'm getting my first cup of coffee. Grandaddy is working again today. He hasn't been around much this week. One of his co workers is on vacation and he's had to work 52 hours...that's just too much for an "old" man. The girls and I went to Hiawassee yesterday only for a couple of hours, but I DO want to live there someday. They got stung by hornets...you've never heard such screaming. Tomorrow is Drew's birthday party and we will miss you so much. Abby just gotup and she says "I love you, Conner". Well, it's time to start this day. We are going to try to get into the Crepe Myrtle Festival...cotton candy and pony rides. It'll be fun. My next road trip is going to be to see your sweet face. Love you, Grammy
CommentsScreaming/Hornets-how terrible! Conner has done pretty good today. His ear is still draining! Yuck! But he is doing better as far as suctioning. After waking up this morning, he got a treatment and a bath and read books (the books you left Belinda and Brown bear-over and over). Then nap and wake up and more reading by granddaddy and mommy, good massage. Now VEGGIETALES! No Babe, no Elmo, no Bug's life, no Blue's Clues-it had to be veggietales. Okay, time to make food. Can't wait to see you Grammy. We miss you Lauren, Abby and Drew-And Jim. Conner's sweet, sweet cousins. We love you so much. You are all Aunt Betsey's angels!!! Even though I fuss at you-Lauren and Abby, you are still my little loves.
CommentsMy Dear Sweet Betsey, I hope Conner gets over that terrible ear infection. Those can be so hard on small children and their parents too. We are still thinking about you and saying prayers for everyone. I think you may be getting some rain now. Hopefully that will cool everything off and settle the dust some. I love hearing about Conner's love for books. I can just imagin how intensely he listenes while being read to. There are so many cute ones now and the pages are so colorful. Take care and remember WE love you very much and are so proud of Conner. Much Love, Miss Lucie
CommentsHappy Birthday Conner's older-by-one-month cousin, Drew!!!!! Conner loves you and looks up to you! He likes how you confidently strut around like you own the world but say so few words yet exude a great sense of humor (hmmm....that kinda sounds your daddy-must be genetic). You may be a month older but Conner's still taller! Love,love-wish we could be there. Miss Lucie, miss you and thank you for thinking of us! I'll hopefully get some more pictures up soon. I can't do it from Sonny's but when I get home, I will. Talk soon, Betsey
CommentsHey Betsey- It's so nice to hear that Conner's doing better. Ear infections can be such a horrible thing for babies and big boys to get over. I remember Kasey having them so bad that no antibiotic would even help them after a while so in went the tubes. Yuk! I'm on my way to a flea market about 2 hours away-the family is sleeping so I had a few minutes to write. It's supposed to be the best one in Florida and it's my time alone. We all need that break sometimes. I hope the rest of the family is doing well and Sandy-thank you so much for your kind words about the family. We enjoyed being around all of you so much too and making that cake for Ma ma was so special to her. Carla and I couldn't wait for her to get home so we could give her the rose bushes we bought. They're going to be beautiful. And also being around Billy and Jeff (his friend) - can't forget that one can we Betsey? I hope you all have a wonderful day and tell Conner we love him very much!!!
CommentsHi guys, Well, the Crepe Myrtle Festival was a success. Abby and Lauren were regular little troopers and were able to be "on the air" on the station I work for. They rode ponies, carousel, train, and grammy even rode the swirling bucket with them (yuck). I had all three (Lauren, Abby, Drew) last night and this morning things are a little hectic. Since the party is not until 4:00PM, I think I'll bath them, dress them, feed them and TAKE THEM HOME...the advantage to having parents waiting to take over when old lady's get tired. Actually, they are all so good, it's just that my house can't take much more destruction and my cupboard is bare, so I need to shop, cook and clean. Then I'll have a clean house and I'll miss my babies. Betsey, I think Pop Pop is planning on doing a July 4 anniversary party again this year with just family. It would be nice if you could make it. I think they plan to be at Drew's party this afternoon. Conner, I hope you're feeling good today and giving mommy lots of smiles. Grammy will come soon and we'll play with your toys and your "piggies". Well, Drew is calling for his "ba ba" so I'll see ya later...
CommentsConner had an okay day. He didn't turn blue. Tina (the morning nurse) worked on him all morning though. She did a good job. He was really clogged up. His pulse ox kept going off over and over. I was making french toast and I'd put the pan off the burner, on the burner, off, on, off, on. Eat a bit, run, eat a bit, run. "Betsey! Oh, he's okay-no..Betsey!!" But when he got stable, we just put the bipap back on and he went on to sleep after his movie. Conner was worn out. I laid behind him and snuggled and dozed a little during his movie. But I'd have to wake up every few minutes and change his face cloth. It was nice though. Us-together-huddled on his little infant mattress balanced on the foam, fold out chair. We're going home tomorrow, though, so he'll be back in his regular bed. Better for me to snuggle with him. John and I went to the movie tonight. He let me pick. I picked The Animal with Rob Shneider. That's my kind of movie. Very silly and really stupid!! Yep. Well, today was sort of depressing. I guess I am getting tired of the rain although it does eliminate the obligation/guilt to go to my house and water the outside plants. Or maybe I'm depressed because my life is in chaos. Hmmmmmm...that's a hard one to figure out. As orderly as I try to make my life, my effort just seems futile. I mean I want to build a life-everyone dreams of doing better-but it just seems like daily we get more behind, financially, emotionally, everything. We are so behind and there is no way to get what we want beyond the basic needs because we are so involved in just trying to keep Conner breathing everyday. I wish I could have a job. I wish I could earn my own living. I mean that is my identity. I didn't get my motivation to make it through graduate school by dreaming of watching The View when I can tolerate it. Being independent is who I am and everything I ever wanted and no matter what I want now or how much effort I am willing to put into it, I am at God's mercy. I am stuck trying to give my son another breath instead of baking him milk and cookies. It's not fair! It is not fair. I accept that Conner is sick and I love him in all his precious floppiness but I don't know...I just don't know what to do about myself. I am a mommy but there is more that just gets suffocated because of our situation. And the frustration of that can be unbearable sometimes. Oh, I'll work it out. I always do. But, today was just one of those days when I felt frustrated with-not lacking material things-but missing out on a life that I thought was guaranteed with hard work and past heartache. I know-I KNOW- I will have a good life but right now-with the exception of Conner's sweetness and love-can be so very achingly hard. Alright, I'm done for now.
CommentsMy poor baby, how it hurts to hear the pain and frustration in your words. You see your little boy suffering every day and can only do so much to alleviate his pain. As your mother, I want so much to be able to alleviate your pain and yet I know there is nothing I can do. God has created a situation for you that only He can handle and we are all pawns trying to accept our lots in life and find some happiness along the way. But we try to believe that he knows what he's doing. Your unique life has much meaning and purpose and Conner is the most obvious challenge you have right now...a challenge and a reward...the perfect example of love with no expectations. At 30 years old, you have so much more time to live. I wish I could say it would all be easy and happy and rewarding, but what I do know is that because of who you are and the lessons you have had to learn, you will make your life as happy and rewarding as is humanly possible...and honey, that's not bad...endurance and acceptance...important qualities. Hope you were able laugh at the movie...Rob Shneider is pretty silly. I think I'll bring the videos that Lauren and Abby and I watched the other night of you and Jeff when you were making the commercials and you had the blonde hair and the big teeth and were just a silly little 10-11? year old. Conner might get a kick out seeing his mommy when she was a kid. Hang in there, baby. You are so loved and your life has great meaning and purpose and there's a lot of living to do. How are you doing with the LSAT course? Are you able to get at least and hour or two a day in? Pop Pop's anniversary party is going to be July 7 and it'll just be family this year. Try to make it if you can. It would be great if Conner could come...I know that's alot to ask. We'd love to have Sonny and Daniel, also.
CommentsBetsey, My heart breaks for the frustrations and heartache that you face minute to minute. I feel compelled to remind you that eventhough you have days like this, that you are still the strongest person I have ever know. You are making a difference and moving forward although I know it is hard for you to see. You are making one little boy the happiest he could possibly be and you are furthering research that will change lives forever!!!! You are amazing!!!!! You always seem to be able to look beyond just your situation and think about people as a whole. When you were dealing with the impossible nursing company, one of your primary concerns was for how we could change the problems of the nursing industry for everyone not just for yourself. WOW I never cease to be amazed at you!! You have offered to be there for my other clients that have very sick children. You ARE making a difference in this world!!!!! I admire you sooo much!!!!!! With much love, Deborah
CommentsBetsey- You are way too hard on yourself. Your accomplishments have added up to a lot more than most mothers can even hope for. You give that baby so much love and you're doing so much towards research of this horrible disease. Your life is chaotic but never futile. You have made such a difference in the fight for finding hope for a cure for SMA since finding out that Conner had it. You have educated yourself in ways that a lot of people would not have done. You could have looked at it as - okay - this is hopeless - he's going to die - but you didn't do that. Give yourself some praise. I know I do. You make Conner so incredibly happy and you give and give and give your love as much as you possibly can. That's you! Ma ma and I talked about you in length after we got back to her house from the funeral. I said it before and I'll say it again-YOU ARE TRULY AN INSPIRATION! You are gifted and you have been handed the most precious gift in the world and you make every moment in his life the best that it can possibly be. If you feel that you've lost yourself, you will find the Betsey you're looking for one day. It's okay to feel that way. I think every mother goes through that but you just have it 100 times worse and even though we may not know each other that well-I just know that you will be fine in the end. You're such a strong person and such a sweet person and look at the battle you have fought for almost 2 years and you've leaped over every obstacle because you are that person. I hate to think of you hurting as much as you do and as well as everyone else that reads this, I wish there was something I could say or do to make you feel better. Just know how much we care and how much we love you all. And the biggest accomplishment of all is looking at Conner's beautiful face and knowing he's part of you.
CommentsHow can I stay down with all this encouragement? Impossible. Today shall be good! GOOD!
CommentsDear Rigg Family, As I read your journal I think what strong people you are!I pray for you everyday that God's love and peace can be your side.I know God will use this hard time in your lives to help others!!! Cathy
CommentsBetsey, Just wanted to let you know I have not heard back from anyone yet. Deborah
CommentsOkay, how did I make this day good. It was a little difficult considering some barriers. First, I slept 9 hours, woke up and saw Conner. Next, Irene did a good job with him which helps build a successful day. I think he missed her over the weekend. He talked and talked to her this morning. Next, I got lots of encouragement-although I don't want you all to feel like I fish for it. I just have to vent sometimes but I appreciate the encouragement. Being able to keep up communication makes me feel so much less isolated and less weird because of my unique circumstances. I always try to keep normal despite the very abnormal things I see and do daily. Anyway, more on coping...after Miss Irene left I took Conner out to the den and we read. Belinda, we read the Ira book you left. Conner loves those books that have correlating things with them he can hold. When John got home he read and I got on the treadmill. That is great and helped a lot. I showered then put Conner down for a nap. Then I made plans to possibly go to Tybee for the night tomorrow. I may not be able to go but if everything works out then I will. I am not too sure John's so excited about me going but I think everything will be just fine for a night. So, Conner having a good day, looking forward to going to the beach, having gone on the treadmill!, talking to Alison at length about all that was really bugging me deep, deep down, receiving your encouragement, oh! and finding out that Abby (niece) will probably be visiting next week all made for a good day. These are all temporary things of course but isn't that what life is about? I must view the good and the bad as temporary if I am going to make it through. And I WILL MAKE IT and I will make it through with more good days than bad, I hope. I sound a little manic depressive after yesterday. I need to just chill but when I say I am going to have a good day, I mean it!!!! We are home, by the way. I hated to leave Sonny but hopefully we can get Conner back over for the weekend. Its tough. I don't know what to do. I guess maybe we should sell the house or something. I don't know and I don't need to right now. We'll work that out later when we need to. Time to go. Talk later. If you don't hear from me tomorrow, I'll be at the beach! Miss Lucie, thanks for my message. You are great and I know you and my mom and Connie will think of me as I sit on the couch in the condo reading and looking out the window at the waves rolling in (since it will probably be raining).
CommentsI'm glad you'll be at the beach...wish I could be with you, but instead I'm going to do one of my fun things...paint. As I was making sales calls today, I came accross an art gallery with local Georgia painters' works and I got inspired, so, it rains, I paint...I'm happy. Give kisses to the big guy for grammy. I enjoyed our little conversation today, and I know just what he was saying and the answer is "Yes" and "I love you, too". Bye now
CommentsBetsy - I so hope that you are at the beach right now. Getting away makes all the difference. Contrary to what you are probably thinking (since I haven't talked to you in a week), I have NOT forgotten y'all. I had a migraine this weekend and it threw me for a loop and messed up my well laid plans to come around and visit. This week has been somewhat of a zoo but I'd like to get together next week if you still want my help! I can't believe that Conner is almost 2. It seems like yesterday that you and John were buying the house and you were VERY pregnant with him (you looked great!) Call me when you get back or I'll call you Sunday. (We'll be out of town Fri. and Sat.) love, me
CommentsI went but it was way too short-I got back yesterday about two. In fact, the trip made life seem a little harder to return to. Laura, sorry about the migraine-debilitating, I'm sure. Just call me when you can. Conner had a hard time this morning. His oxygen and pulse dropped while he was on his breathing machine at about 4 and again about 8. That is rare. Tina yelled for me and we got it straight. Really she did a good job, reacting to him quickly, getting the bipap off and inexsufflating him quickly. He didn't turn blue and that was one of those times he would have if a second is wasted. Today is Connie's birthday. I think Sonny and the family will come over to eat. We also missed Conner's 23 month birthday yesterday. I don't feel like celebrating but it'd be nice to be with Sonny and kids. Okay, I'm off to the store, hopefully, when Sonny gets here to get supper food.
CommentsBetsey and John, Just wanted to let you know I was thinking of ya'll today (and the whole Riggs family). I KNOW how hard those birthdays are--Daddy's was just May 8. Mama talked to Sonny at the drugstore yesterday-I hope she gives him some hope. It's like she used to tell me--when something would get mentioned that she felt she couldn't deal with right then...she would say "I'm not going there today". (sounds a little like Scarlett-who is one of my favorite peopel). It will be good for all of you to be together today-for support. If there's anything I can do, if you just want to talk or if there's anything else...please let me know. I would love to help do something. Just remember that you are BOTH strong people and I agree with someone else's message about how you could've just given up but...you have gotten Conner through almost 2 years. Be proud of yourselfs. My love to you all, Mandy
CommentsWhen you think of Connie today, think of how important it would be to her for you all to be together and smiling and as happy as is possible at this time. She was way up there as one of the most positive people I have ever known. Her spirit is certainly strong enough to be with us for many, many years to come. And if you have to cry...just go on and do it. Connie could cry and smile at the same time. I'm sure she will understand. I love you, babes, keep your chin up.
CommentsHi Betsey and family, I am sorry to hear that you are having a tough time. It gave me more insight to see the extreme care that Conner requires for hours on end when I stayed with him last week for a few hours. It must drain you physically and emotionally everyday. You are bound to have periods of depression and asking Why me? Why my precious baby? I thought about you all so much this week while I was away at the GPAT (Assistive Technology conference). I learned so much and I am excited to share with you some of the things that I would like to try with Conner to help him communicate. He was so cute last week. He played peek-a-boo with me by closing his eyes. When I said Where's Conner? He opened his eyes and smiled. I am looking forward to seeing you and Conner tomorrow. Take care. Love, Belinda
CommentsHi Sweeties I'm excited about coming down there tonight. Abby is anxious to play with Conner It may be late when we get there, cause Jeff wants to come with me so I'll have to wait till he gets off work...lots of driving but worth it. Of course, late for me is early for you. Hope Conner has a good day...we'll talk, probably several times, before I leave. If there's anything you want me bring, let me know. Love, Mom
CommentsConner's doing fine. Thanks Belinda for working with him today. Thanks Irene for helping and doing a good job this week. Thanks, thanks, thanks for all the help we receive.
CommentsConner is doing okay today. However, today is not a good day. It sure is a pretty day but there is some real pain, deep down aching, make-you-cry pain that is being endured now. This is the hard part when the pain surfaces and you have to deal with it. No more stuffing it, it has risen to the top and it really hurts-everyone. I guess I can't apologize because this is what going through situations like this is going to be like at times. Sometimes its bad and sometimes its absolutely achingly heartbreakingly bad with tears just filling up my eyes when I can't distract myself anymore. I'll be better but not tomorrow. Maybe the next day or maybe two months from now or maybe two years...but it will get better, I know. I love my Conner-he is my precious, sweet, darling baby. And I am just so glad I have my precious-Britney Spears wannabe- neice here to keep me company.
CommentsMy visit with Conner was way too short. He was responding so sweetly but there just wasn't enough time. I sure wish there were some simple, easy, happy, answers for all the present pain. There aren't and like you, I can't stop crying. I love you and John and all the Riggs so very much and they will always be a part of our lives...a big and important part. I hope Abby gives you guys a couple of good laughs. Her innocence can be very touching and her fiesty spirit will challenge you. She does love Conner and Aunt Betsey and Uncle John and Mr. Sonny. I guess I'll have to hug Lauren and Drew real tight to make up for not having Conner and Abby close by.
CommentsAbby and I made it to the pool. I dragged her home and she went right to sleep...just in time for Conner to wake up. Conner and I watched videos and he got a super duper, wonderful massage while I purged any repressed emotions watching Terms of Endearment. I should be cleansed now, huh? Well, I felt preoccupied all day thinking of the unpredictable future but Abby was a good distracter. After she woke (I actually had to wake her up), she and Conner sat in the den and she stroked his head and hair-so sweet. I started the getting ready for bed thing early tonight since it took two hours to get Abby and Conner prepared last night. I started at 7 and by 9:30 I had both of them in Conner's room on his bed singing songs and playing with the felt board. Abby was so good in including Conner in the play. You know how hard that can be if you've been by here. Conner did good and he tried to sing. He eventually fell asleep. We must have sung "Brown Bear" 7 times before we moved on to the speckled frogs on the speckled log. We had a tape Miss Belinda left and the felt board (Holly got us) and the visuals. Abby and Conner loved it! We did all the songs over and over and over. (I showed him the music card before we did it, Belinda.) After that Abby got in bed and she started crying because she said, "I don't know what Conner sick." I didn't write that wrong. That is what she said. She also said, "That makes me sad. I'm sad." My heart was broken. Last year when she spent so much time here, I think she just thought he was a baby for laying down so much but this year she knows he is sick. She kept asking me if he is going to get better. But I didn't know she'd cry about it. I think she really took notice when we were playing and he couldn't hold the stuff. She was so sweet how she would place the little monkeys in between his hands. And she'd keep kissing him and trying to hug his narrow shoulders. Tomorrow we will hopefully go to the gym-Abby likes to go that nursery for some reason- and go to the store and maybe run by the Raptor Center if they're open. And then spend the afternoon with Conner! She wants to do the songs some more. Abby helps me keep Conner entertained. He loves watching her. Okay, its late and I better get some sleep because Abby will have me up EARLY and there is more than just having fun to do tomorrow... Momma don't cry for me. I'll be fine even though I complain a lot that its hard. Happy Father's Day to whomever it applies.
CommentsHi Conner; I check in on you once in awhile and see how you and your mommy are doing. I'm glad your entertainment is there to play with you, and I hope you enjoy your day today! Hey, it's been awhile since we saw new pictures, so be sure to take lots more soon! :)
CommentsI made it through the day (I'm listening to Barry Manilow's, I made it through the rain, and its my theme song). Anyway, I did make it through the day and with some ease. Abby had me up early but I WENT BACK TO SLEEP til about 10. She played until we got ready, went to the gym, went by the Raptor center and the store. Our plumbing backed up and made a disgusting and huge mess so I had to go get a steam cleaner to clean the carpet and I had to clean the bathrooms-that was GROSS!!!!!!! What a pain. Later, I made some hot dogs (I cleaned up pretty good) like Connie used to make and Sonny and Daniel came and ate. Of course, Abby just wants fruit and bread. I guess that's not so bad. She's a good influence on me. I ate fruit and bread today, too. I love her so much. I just look at her and see what a little miracle she is. What a beautiful baby doll! And what a superb cousin she is to Conner. He loves her so much. Because of the water "damage"-ugh- we had to move Conner's bed to the middle of the floor. He has plugs and stuff everywhere because of all his equipment. We didn't even know the floor was wet under his bed and those strip plugs were lying right on the wet carpet. Pretty scary. Well, Conner woke up at about 1 pm today since he was up half the night. So, he took a late nap. Its 1 am now and I hear him still talking. He says, "aualllll" -sort of like a german or hard french sound. We did music again today but he was just waking up and he just wanted a video. He gave me dirty looks but we were trying to show Uncle Daniel how he counts the monkeys and frogs. "Who cares?!" says Conner. I must go to sleep. As the great singer Barry Manilow bellowed(I am not being sarcastic-I really like Barry Manilow), I need to start my own parade- the rain parade. I'll start tomorrow. Maybe I already have.
CommentsI didn't even mention all the hard work that John did steam cleaning those carpets!! Poor baby. He worked hard today! I never give him credit on this page.
CommentsOf course, Abby kept me busy today. I am just getting a break now at 12:06 am. I had a short one earlier at about 5 when Conner and I were watching tv. I almost fell asleep but he had needs (and a dirty diaper). We moved him into the middle room and John steam cleaned his room. Abby and I are up front on the futon tonight. I am letting her stay up as late as possible tonight so I can sleep at least until 10. Oh please!!!Abby. She starts tapping me, Aunt Betsey, Aunt Betsey...I'm firsty. I've been trying to give Abby the days and Conner the nights. It works okay because Conner gets the afternoon with his daddy which is just as good as mommy. And mommy gets to get out of the house without guilt. After a nice visit from Hope, Alaina and Laura and Abby holding the baby, we went to feed the ducks and to the park. Abby had fun but didn't want to leave the park. When I managed to get her in the car, she was pretty mad and blurted out a four letter word to me. I had to pretend I was coughing so she wouldn't know how hard I was laughing. I assured her that she was in trouble but she just placed her words so appropriately within her reaction. Okay, she is firsty right now so I have to go and make sure she gets her rear end back in bed. Oh, but tonight Conner's teeth on the bottom finally broke through!!!! First teeth- we thought one broke through before but the skin went back over it. And tonight we did the songs about the monkeys and frogs and he fell asleep again in the middle of it. I am glad he was comfortable enough to. Bye.
CommentsI know you're enjoying Abby. She's very entertaining, but definitely adds to your workload. Conner is good to share his mommy with his big cousin. I'm sure he's now aware that all the Carlisle women are a little silly, but demand attention and must be tolerated. Conner and I had a nice little conversation last night (I did most of the talking). But he was really responding. He lets me know what he likes to hear and when he's bored and ready for me to shut up. I'll see you guys some time Saturday. Don't know who will come with me...but I'll be there to fetch my little "poopy-pot". Incidently, slow down on the fruit or she will truly earn her nickname.
CommentsNever keep a child up thinking she'll sleep late. It doesn't work. Whoa, she was a handful this morning. All she eats is cantelope. Anyway, she's sleeping now and Conner is watching Tarzan. He looks cute with his little teeth finally coming in. I hope his secretions get a little better after these teeth are done. Okay, Gotta go finish straightening up the house. See ya on Sat. mom.
CommentsDoing okay today. John is leaving for Chicago in a little while. He is going for the SMA conference. I am so excited for him. I hope he meets lots of sma kids and I hope it is therapeutic. I hope he gets to enjoy the city and go out to eat and go to a Blues bar. I missed going when I went but I walked past one and it killed me to not be able to go in and enjoy. He's driving to Atlanta and taking a flight and staying until Mon. Okay, gotta go. Abby's having a hard time cleaning up.
CommentsKids are fast asleep and I am watching a movie. How relaxing. They went to bed so early. John has landed in Chicago and is in a shuttle downtown. Everyone is safe and that is satisfying. This is peace...for now.
CommentsConner, your other two cousins are here with me and Grandaddy...wish you and Abby were here with them...I would definitely need some help, but these two can keep me and grandaddy pretty busy. We're going to get Uncle Jeff this afternoon and we'll be down to see you Saturday. Drew likes to get his "piggies" done, too. He likes being "outside". Lauren is a very good helper, but she never really learned much about "cleaning up" either. I guess it would help if I didn't keep so many toys here. We just keep adding to them and never getting rid of anything...some day we'll have toys for the great grandchildren...hopefully. I love you and mommy and miss you, see you soon...gotta go to work.
CommentsWell Conner is doing fine and John is enjoying himself in Chicago. I had SO MUCH FUN going out last night. Thanks to Julie, Bessie, Jennifer. Bessie and I went dancing later and had so much fun and I made a total fool out of myself dancing. Thanks to Jane O'Donnell for helping with Conner last night. I was so content while I was out. Everyone was taken care of and I could just have fun. Abby is leaving tomorrow and I am going to be bored. She has been my little companion. We dance in the kitchen, sing in the den, tickle on the futon. What will I do? I guess I'll just have to aggravate Conner twice as much as I already do-singing and dancing and tickling. Okay, gotta go appreciate the babies while I have 'em.
CommentsAbby's gone and Conner is trying not to go to sleep. He keeps talking and talking. I guess I'll go back there again and try some more to get him to sleep. He had a little fever but I think he'll be fine.The nurse will keep a watch on it and give more tylenol through the night so it should be fine. Okay, talk later.
CommentsMy dear little Conner, it was so hard to leave you and Mommy yesterday. My visits are just too short. I feel like I spend more time on the road than I do with you. I don't even have the time to say all the things I want to say to Mommy. It seems unfair to have to spend so much time doing things that have no meaning at all in order to pay the bills, when there is so much more that I could be doing...helping mommy, just being with you...looking at you...talking to you...making you smile. I guess it's my day to be frustrated. Abby was very sweet coming back up here...we listened to the Disney Princess collection tape over and over and over...she sang all the words to everything and each one was "my song". We ate junk food...potato chips and chocolate and cokes and chocolate milk (bad grammy). Betsey, you're my hero. I love you
CommentsMom, you taught me-dude. Well, I don't know if Conner has fallen asleep yet. He's having a hard time tonight. I have scratched his back, hugged, kissed, played music, sung, all... but he has another ear infection so...The nurse is here and once I've done all I can, I have to just kiss him and tell him good night and take my break from 11-7 then from 8-2. I have to turn it over when they get here or I'd be working non-stop. And I know what happens when I work non-stop...I get very depressed. I am doing okay with the depression. The stress is high right now but depression low. I guess when the stress subsides, the depression would rise. Dealing with the stress and anxiety sort of distracts the depression. I don't know. I know the Paxil and exercise and getting out helps. It helps a lot. It is my survival through this impossible time. John enjoyed his trip and met lots of wonderful people who are going through what we are going through. It makes you humble when you see what other people are going through or what they have survived. We're just one more family out here with problems. Everybody's got 'em. Conner was so adorable today. He had to get on the computer. When I figured out he wanted to get on the computer he played on it until his cheeks were red and he wasn't breathing well. It didn't matter. He didn't want to get off. When you get out of the program it asks if you are ready to stop playing and Conner said, "uh-uh (no)." He kept saying no over and over. When we got to his room to put his bipap on and watch a video he cried and pitched a fit! His face got completely red and he pushed out as much crying as he could until he got distracted with Larry Boy and the Fib from Outerspace. Abby played with that computer game (Reader Rabbit) for about 7 hours the other day. I couldn't believe it. She wouldn't do anything else. They love it! Okay, talk later!
CommentsWe are going to have a great day today.
Comments:o) I'm so glad to see it is going to be a good day in the Riggs house! We are really looking forward to coming up to visit in a couple of weeks. I think about all of you every day and I always pray each day will be a good day. You all deserve to have EXCELLENT days all the time. I wish I lived closer so I could see Conner's smiling face more often. Betsey please let me know what we can do to help out for Conner's Birthday Party- ANYTHING!!! We should be there early so put us to work. Love to all, hugs & kisses
Commentshey betsey and conner- i am still at bible study camp and have been telling everyone about my boyfriend so i was showing him off on the site today. i hope yall are having a good week.i miss you conner and will come see you when i get home. love,tara
CommentsMaria, I'll put you work, don't worry. Tara, Conner misses you (so do we)!! We did have a good day despite Conner's infection. Robyn, we appreciate the lasagne. The entire family came over and enjoyed it! Robyn got to see Conner playing on the computer. He and John stayed on it for a long time. Conner loves it. Well, time to go to sleep or at least read in bed. Relaxation, aaahhhhh... Good day. I told ya.
Commentsnot a good day. I tried but some things are out of my control. Conner threw up. Not good for fear of aspirating. He may have aspirated and we just don't know yet. I am keeping a close eye and ear on him and doing all kinds of little detailed things to try to keep him from puking again. And his ear is yeast instead of infection so we are just changing his medicine. I hope it can get cleared up but he just has such a hard time since he has so much spit hanging around his head. And he had a bloody nose this morning. It looks worse than it probably actually is-I just hate blood especially when it is excreting itself from any of Conner's orifices. MaMa is having heart surgery probably about right now. So, John, Jim, Daniel and Sonny are on their way to Macon. They just left. Poor guys. No more heartbreak, please. I am so cynical; I feel heartbreak is inevitable. Isn't it? Everyone's gonna go and it is going to hurt. Anyway, I hope MaMa and Conner will just give us some more time. I shall sit and wait.
CommentsHi Sweetie, Betsey, we will keep praying for peace and calmness. I hope things get better for our"Little Prince". He's such a "cutie". We will also pray for Ma Ma. Such a wonderful lady. I know you think, "What else can happen?" Just stay healthy, take your vitamins and know there are lots of us thinking and praying everyday for all of you. WE love you and send you hugs to wrap around every family member. Take care of yourself. Miss Lucie
CommentsMaMa has made it through the surgery. She had a quadruple bypass. Yep, the harder we try, the harder it gets-BUT!!!isn't that life? That is life! The harder you try, the harder it gets! If you aren't trying, your aren't livin'. Conner seems to be doing okay. He's an opinionated little dude. He DIDN'T want to take a bath(so he didn't), he DID want Mommy to read (so I did), he DIDN'T want his bipap on (so I left it off for a while). He had lots of opinions about what he wanted tonight but he DIDN'T want to go nigh-nigh, but he did! His oxygen saturation and pulse rate are looking good, so I hope he gets through the night okay. The nurse is here so I am going to escape-listening to music and reading in bed and hope that John and the guys get on their way soon and drive safely so late in the night on boring I-16.
CommentsBetsey, As you know I am praying for MaMa and little Conner boy...what a rough day, but you made it through. Karen, Carla and Carl, please give my love to MaMa. She is the sweetest lady and a true angel on earth. It doesn't seem right for her to have to endure so much, but this is a world of curiousities. During Connie's hospital stay, all we could do was look at each other and shake out heads and just keep praying for that old acceptance that is so hard to come by some times. God bless you all and that fiesty lady that I came to love. Conner, you get well, grammy loves you and mommy and daddy.
CommentsHi Betsey, Conner, and Grammy. Just wanted to give y'all a 'shout' and say we love you and are thinking of you all! Conner sure is a trooper!, not to mention his mommy and grammy! Take care!
CommentsHey Howey! I am glad to hear from you. Thanks for writing and checking up on us. We love you all and hope to see you soon. I have got to make a visit up there-maybe on one of my great escapes. If you wanna see how much more handsome Conner has become, we have new pictures up! No word on MaMa today. I suppose she is stable. John is going back up tonight and if I am still able to go to Atlanta this weekend, I will go by tomorrow. Conner is doing fine today. He started out in kind of a mood but he's coming around. He said, "tha-tha-tha!" I am not sure if he was trying to say da-da or if he was telling me something else. He is trying though. What a super cutie! Check out the pictures. Hopefully I'll put up more later. Miss Lucie and Mandi and Momma and others thanks for the support. Love, me.
CommentsDear Betsey, My goodness, my goodness. What a handsome fellow we have here. I just dearly love the pictures. I hope MaMa improves. Please send our love to her from us up here in the mountians. Take care of yourself. We will keep praying for each of you. Much Love, Miss Lucie
Commentsconner- hey buddy! i am finally back in town. i have missed you and your family so much. i will give your mama a call very soon and come by to see y'all. i showed your cute pictures to lots of people and they thought you were precious and are praying for you. i was sorry to hear about all of your complications lately. i hope tonight is running smooth for you. i will see you soon. i love you, tara
CommentsCome see us soon Tara. I just got back in town at about 11:00 tonight. What a weekend. I spent so much time driving. Everybody lives so far apart up there around Atlanta. I enjoyed spending the night in Billy's (my brother) new house. It is nice and big. Then I went to Lisa's in Roswell and I saw her new, nice convertible corvette. Very nice. You deserve it, Lisa. Then a group of us went out and I dressed retro and was the conversation piece for the evening. I looked like a disco queen and we danced and danced. It was fun. THEN, I drove and drove and drove home from Roswell to Monroe. What a nightmare. That was a truly bad experience that has left me sad, scarred and worn out. Unbelievable. It is way too long of a story to explain and private to the person but I hope tomorrow looks better. My heart hurts. I was reminded how ugly life can be sometimes. Like I don't get enough reminders. But I am home and secure in my own little insecure world. I am secure in my routine at least. Thank goodness for the routine I have established. When I came in Conner was still awake and he gave me the tummy heaving to let me know he was excited to see me. He just kept staring at me. I had talked to him on the phone but its just not the same! I got big smiles and lots of love that I missed this weekend. Well, its John's turn next weekend. I hope he takes advantage. MaMa is doing fine so far. I heard she is coming along fine. Sadly, there was another sma to die last week. Her name was Emily. On the other hand, we are going to have Conner's number 2 birthday on July 14 at the Statesboro Place Clubhouse (off the bypass) like we did last year. We are going to have it at 5 pm and we are welcoming anyone to come since the entire town has helped us so much. I suppose I should have already put something in the paper but please feel free to pass it on for us and please come. We are going to ask that instead of presents for Conner we would prefer a donation in his name to the SMA Angels Charity, Inc. in Richmond Hill (P.O. Box 308, Richmond Hill, GA 31324 - www.smaangels.org). That is just our preference but we don't insist on that. Some people just can't resist getting tangible presents. Conner likes videos and books and lights and stuff but you never know with him. I usually try stuff then buy later. I try the therapist's toys or I rent videos first. But with the charity, all of the money goes directly to support. They give support to local families in all kinds of ways but mainly they support finding a cure for the disease. They are so close to finding a cure for the disease and money is the only thing that gets them closer. While Conner is worthwhile to us and others who have met him, I feel like having his birthday donations go to a cure makes his life more meaningful. Each birthday may save one life because it puts the cure closer. It breaks my heart when I read on the families of sma page that another child died mainly because I know that we are going to be saying the same thing ourselves one day. Okay, before I start feeling sorry for myself, I need to go on to sleep. Lots to do tomorrow. Always lots to do. But I don't always do it. Tomorrow-I do.
Comments2 corrections, oops! I meant to say that the incident earlier today is private to the person having the problems. And I meant to say another sma baby died. Both things are so SAD!!!! Both tragic.
CommentsHi my little shining star - I enjoyed talking to you on the phone today, but Mommy is right - it's just not the same as being there with you to see the smiles and squeeze those little fingers and kiss that sweet neck. Lots of prayers are being said today. Grammy's a little sad, too, but trying very hard to be hopeful. I love you guys - hugs to MaMa.
CommentsI talked to MaMa today and she sounded good. She's weak but coming along well. Conner had a pretty good day. Irene and I gave him lots of love and attention today. He got a good bath and went down for a good nap. When he woke he watched videos and played on the computer. He had an "accident" in his britches which sent him back to his room for a change. Granddaddy came later for a visit. Treatment, then bedtime but he is just falling asleep. He watched baby videos (Baby Mozart, Baby Bach, Baby Shakespeare, etc.) until just a little while ago. Now, he is listening to his new Conner tape Mr. Bud Johnston brought by for him. Its cute, like the one you got for him, Robyn. Maria, I enjoyed talking with you. Okay, I am tired.
CommentsThings are back to "normal" (whatever that is). I think normal means "be ready for the unexpected". Betsey, don't tell me that it was unusual for our little guy to have "an accident" in his britches. Heavens,he's not potty training age, anyway! Every elimation is an accident to him...musta been a bad one. Well, enough toilet talk. Hope you folks have a very good, happy, comfortable day. I'll be on the road and trying very hard to make some money to pay some bills...they're all due AGAIN! Love to all
CommentsHEY CONNER, Betsey, and John- I think about you everyday. I saw a little boy in Blockbuster who reminded me of you Conner and you know I sat and played on the floor with him for about 45 minutes. Betsey- I have made good friends with the camp counselors at the 4-H center and on the weekends they have about 300 empty rooms right here on the beach. I'd love to get a room for you and a couple of your friends and let ya'll come to Summer Waves. Just call me on my cell phone and I will be glad to arrange it. I hope ya'll have a GRAND 4th of JULY!!!! much love- me mere
CommentsSounds good Meredith. I'll let you know if I get another weekend!They can be hard to come by. I've been lucky lately. Thanks for thinking of us. Conner has had a decent day. He woke up at about 6 (when the nurse left) and went back to sleep at 8 (when the next nurse arrived). Perfect timing. So, I was up from 6 to 8 changing his clothes out, inexsufflating, suctioning, changing diapers, etc. No big deal-I went back to sleep for 2 more hours. I used to do it 24 hours a day. Our nursing hours have been cut though from 14 hours to 12. That scares me-the thought of having to do this alone again. It ran me into the ground and a depression. I didn't know it when it did. It took getting out of it to really notice. My brother, Billy, is going to help me appeal though. He did a good job last time. The problem is that we are dealing with a program that doesn't take into consideration the impossibility of staying up 24 hours a day-day after day. Oh well. Okay, Conner was extra-super-duper cute tonight. He was watching Tarzan and doing the Tarzan yell. Very cute. I didn't even know he could yell that long. However, he demanded a lot of attention. Lots of suctioning and stuff. I am not sure why, the ear? the teeth? allergies? food? disease progressing? I have no clue but it is. I hope we have a good day tomorrow. I want to try to get some movies for Conner and me and we can watch them all afternoon if it rains. If it is sunny, we can hang out outside as long as Conner can stand it. If its overcast, movies! Massages, movies, computer games-Conner has a great day ahead. He played on the computer today and then fell asleep when Belinda arrived to do speech therapy (second time). Sorry Belinda and Deborah. I enjoyed your company anyway. Okay, tired. Going down now.
CommentsHi Conner and Betsey- I hope you both have a wonderful 4th of July. I can't wait to see you next weekend for the big guy's 2nd birthday!!! Hope your day is filled with sunshine.
CommentsI just got a wonderful July 4th gift. I said, like I say one million times a day, "I love you, Conner." And he said, "aaaa-luh." HE TOLD ME HE LOVED ME!!!! We rented videos. He loves me because I rented him good videos, I bet.
CommentsI know it feels good to hear those words coming from Conner's little mouth, but you also can feel them in his touch and see them in his eyes. His love for his mommy is so present and evident each and every moment...just like your love for him. He doesn't take all of your sacrifice for granted, and neither does the rest of your family and friends. I hope Billy can get your nursing help back...you should be getting more instead of less. If only the "judge" could come there for 24 hours and see what it takes to keep that little fellow alive. Each minute counts. Then there's your health and your sanity and your stability, not to speak of the rest of the family. I know Billy will do whatever can be done from a legal standpoint. Maybe that's all that matters, although it shouldn't be. Where's the real justice? We look forward to Conner's party and just hope he'll be able to enjoy it. Have a good day, my loves.
CommentsConner is saying, "Tha-tha-tha" I don't know what that means yet. I think it means, Listen to me! Today was kinda crappy. Sorry, no other way to describe it. Depressing. One day! One day, I will say I have had a good year. Do people have good years or are good years too tenuous among us these days? I know. I know. I love Conner and I appreciate him and things will get better and we have lots of support and everything will be fine one day....I know...I know. I know but today was still....crappy. Conner is a sweet pea and we are looking forward to more time with cousin Abby. Now that is something to look forward to. "Aunt Betsey, wake up even though its 7 am, I'm firsty."
CommentsDear Sweet Betsey, Don't worry about having days like today. Yes, one day you can say this was a good year. In the meantime remember we love you and are still in total amazement of your abilities. You are one "Cool Woman". Take care of yourself. Take your vitamins and keep that lovely smile. One day Conner is going to just start talking and tell you everything. Such a tall young man. Take care. We will keep praying. Much Love, Miss Lucie
CommentsYou're right. Yesterday was a pretty "crappy" day. In my case it was more from observation, but when it's your kids you're observing, that's just as bad as feeling the pain and depression and frustration yourself. I guess I've always felt like I can handle my own life and my personal pain, but watching others and not being able to find the answers and knowing you're not even supposed to be able to...well, that's right tough. The sun is shining here today. I saw a rainbow at twilight yesterday and found some strength in it...Bill's little message through God that things will work out. And then there's Abby...here with me and she's telling me her dreams...she had a doggie and it fell down in the ocean and he held his breath all right and he didn't go in the deep part. Now she' telling me about Connie making her a rainbow...what a sweetie. You'll have her tomorrow Aunt Betsey, but she's mine now. Hope I can see my little Conner tomorrow...love you
CommentsHey Betsey! Just wanted you to know I was thinking about all of you. I really enjoyed seeing Conner and his computer skills. That is very impressive. Have you tried the nick jr. site yet? Steele likes the story about the little bird who wouldn't sleep. I bet Conner might too. He also likes it when you click on the dogs and they bark. He thinks that is funny. I hope Ms. Kathleen is doing better. Keep your head up and know how many people love you and are praying for you, John and Conner! Robyn
CommentsHey Betsey! Just wanted you to know I was thinking about all of you. I really enjoyed seeing Conner and his computer skills. That is very impressive. Have you tried the nick jr. site yet? Steele likes the story about the little bird who wouldn't sleep. I bet Conner might too. He also likes it when you click on the dogs and they bark. He thinks that is funny. I hope Ms. Kathleen is doing better. Keep your head up and know how many people love you and are praying for you, John and Conner! Robyn
CommentsThanks Robyn and thanks to your momma for helping me plan Conner's party. All of the sudden, Conner's party is going to be good. I was a little overwhelmed and didn't know where to start. Now its taken care of!! All of it! What a relief. I have some bad news. I always have bad news. John and I have mutually decided to end our marriage. We love each other and support each other and will be here together for Conner but we feel its best for our relationship to end it now in the friendliest, most amicable way possible. I know this is private but I know when people who love and care about us find out they may not understand how two people can love each other so much yet not be married. And it isn't the stress of Conner. I know that seems like the most obvious answer but we all know that life is more complicated than that. That is it and I am sorry to have to share more bad news. We are sad but we will be okay. We will always be best friends and each other's family and we appreciate your support as well. Please understand that this was a decision that took a long time to make and John and I know we are doing the right thing for each other. There is nothing that anyone can do to change that decision. I am sorry. Conner is waking, gotta go.
CommentsBetsey, I was so sad to read your e-mail. I am so, so, sorry. I can't imagine what either of you are going through. You remain in our thoughts and prayers! If there is anything we can do -- anything-- please do not hesitate to call us. We love you and John (Conner too) Jeff and Robyn Petty
CommentsWe had a long day yesterday but Conner got to go on a great adventure and see his great-grandmommy and great granddaddy on their anniversary. I kept telling him that he was going to see Mammaw and PopPop and when he got to Mammaw he talked and talked. John and I set up the van like it was his bedroom. We had his breathing machine on him and had videos going on his tv. He only de-satted once and that was with his bipap on. Kinda scary. It took 4 hours to get there and we stayed an hour or two then drove back (John drove the whole way). We got back at about 8 and we brought ABBY BACK!!! She is currently making a huge mess in the front room while Conner sleeps. Gotta go.
CommentsI'm glad to hear that Abby is back in the 'Boro and hope she brings some extra sunshine into your lives right now. Betsy, Randy said he can bring the hay on Saturday if y'all still want it to decorate for the party. I'll e-mail Robyn or call Miss Janice to see if the farm theme is still on. You know I'm thinking of and praying for all of you right now. Give Conner a big kiss for me and call me if you need anything AT ALL. Above all, hang in there. The Lord is faithful and there WILL be brighter days ahead. I love all of you. Laura
CommentsIt's hard to write and cry at the same time, but no matter what you say, I believe that "where there's love, there's hope". Whatever relationship you and John choose to have, John and all the Riggs family will always be family to me. Conner, have fun with Abby. I love you, little guy. I sure did enjoy your company Saturday, and appreciated your mommy and daddy making such an effort to be at Mammaw and Pop Pop's 60th anniv. It meant so much to them.
CommentsConner had a pretty good day yesterday. William Horn (Conner's new friend-now) made a wooden and painted cut out of Babe and Babe's friends that is really big and going to be used at his party. It is so neat. He also visited with cousins Hannah and Dorothy. And he got out in his wagon for just a little bit. It was too hot and humid out. Later Abby and I went swimming. Supper, then all kids got ready for bed and went easily off to sleep (not really-they both fought it). So, now a new day. Another chance to make something of these strange bunch of circumstances I find myself entangled in. But for the moment, get Abby dressed, teeth brushed-Conner's still asleep-straighten the house and make my daily calls. Always on the phone getting stuff straightened out.
CommentsBetsy, John, and Conner, Update on party plans. Hopefully, tomorrow the invitation will be on Northland Cable. I could not get it in the paper every day, but, it will be in the paper on Thursday and Friday. I also talked to Katherine Roundtree, she ask me to call her tomorrow, and give her all the details of the Party. We'll get an announcement at Pray Meeting on Wednesday night. I hope you do not mind but I personally invited Dal Cannady and "Sweet" Paul. They both said they would try their best to be there. Also, Shawn is going to give an invitation to the minister at First Baptist in Brooklet. He is going to invited everyone at their church on Wednesday night. Beverly Proctor called me today, she is wonderful help. The food plans are going good, so make sure you do not eat anything on Saturday, save it for all the "good ole fatting party food." William stopped by before he left for Calif. and said he had a good time with you three yesterday. He does wonderful work, doesn't he? Tell Conner I am getting a "special shirt" made for him to wear Saturday, the shirt is red, the rest is a surprise. I'll give you a call tomorrow, and if it's okay, I'll pick us up a pizza, come over and I'll give you a list of everyone that is helping. Thanks for letting me help you with Conner's party. Give him a kiss for me. My prayers are for you tonight. "Miss" J/ Almost forgot, I'm taking an invitation to Sea Island, the Sheriff's Department, EMS, and the Rec. Department tomorrow.
CommentsNow I know where Robyn gets "it" from. What I would I have done without you both? These are the kinds of things Connie used to help me with. She always knew who to call and what to do. I didn't even know where to start so I just couldn't. Now, Conner is going to have a great birthday! Thanks so much. Everything sounds like it will be perfect. William is precious. Nice, nice, nice. Well, Conner has done pretty well. He wore his bipap most of the day but was able to stay off a little in the evening. He has been having a hard time staying off and not having to be suctioned and inexsufflated especially in the morning. It is easier on him to keep the breathing machine on. Conner was in a pretty good mood today, though. He smiled and laughed tonight when I kissed his hands, face and tummy. We read and he talked to Grammy-a lot. He loves for Grammy to do "piggies," even over the phone. He demands it by wiggling his fingers and saying, "aaa-uh." We are so excited that Conner is turning two on July 13. We really didn't expect Conner to live this long as fragile as he is. I suppose we do a good job of helping him to stay alive. Its out of desperation-anyone would do the same. I can't believe we get to see his face when he sees the cake and the candles and all the people. Last year, we couldn't even hope to have another party for fear that he wouldn't be here for it. But he is! And he will be so aware of what is going on. How neat. I feel so lucky to have had him for this long and it just keeps going. Everyday is one of your answered prayers, right? Thanks. Abby was a sweetie today. Abby and I went to lunch with Susan Adams and her daughter, Darian. We all went to Triple Play. It was nice. We hope to have tomorrow, too. After Conner's early doctor's appt, we may hang out at Sonny's by the pool. We'll see how Conner's feeling. We can plug him up at Sonny's. Irene's in for a busy day tomorrow. I hope you're ready, Irene! You always are. Okay, I'm tired. Good night. Thanks Miss Janice-you have saved the birthday!!!!
CommentsI'm getting excited about Conner's party...sounds like all those great Statesboro people are rallying as they always do. I feel so incompetent being so far away and just getting there for the fun and not doing any of the work. Connie was, indeed, the one who got things done and now her support system has stepped in to do just what they would have done with her as their guide. I know she's watching over all of this and being the same sweet, loving, beautiful lady she was here one earth. We are so thankful for every day we have with Conner and know that when the time comes to let go, it will be less difficult because of Connie. Betsey, I think Uncle Harry and Clay and Toni might be planning to come. He e-mailed today. We'll have to get a separate birthday for him if he does. (I'll do that with all 60 candles!)
CommentsWe are excited about the party, too. Conner had a big day today. We got up early and went to the doctor. Conner is doing okay. His ears look satisfactory for now. Then we went to Sonny's to swim. Irene, Conner, Abby, Betsey, Susan Adams and her two children who are a little older than Abby and Conner were all there. Darian and Jake played with Abby and I began to feel guilty that Conner was inside. So, Irene and I rolled him out in his wagon and brought out his oxygen and suction. We stripped him down and put him on a float. He had such a great time and got to play with all the other kids. Oh, how Conner smiled. We had to do some suctioning and bagging but he settled a little and was able to enjoy the float and even some "free style" swimming. Well, tomorrow, Miss Janice, we will enjoy PIZZA! Yes we will. Miss Lucie, thanks. I am so tired and mentally exhausted. I feel for John. I know he is too and maybe much more than I. I just wish I could help him be happy. Wish, wish, wish! I know that I must get sleep to be happy-so I am off!
CommentsDear Sweet Betsey, I am so glad everything is coming together for Conner's party. Isn't it wonderful to have such good friends as Miss Janice, Miss Jennie amnd Robyn to step in and help. Just wish I could get there also. Sounds like Conner had a great time in the water. Children seem to adapt to their first environment with such ease. I gave special prayer last night just for the Riggs family. You and John are strong and I feel there are happy times ahead to overcome the rough ones. Today is Mark's birthday. This brought back many memories of when Connie and I were expecting Daniel and Mark. Take care of yourself-enjoy all those little children-remember we love you. Give Conner bunny nibbles from me. Much Love, Miss Lucie
CommentsThanks, thanks. Well, today was a good day. We camped inside today but it was still bright and happy. Abby played on the computer and played dress up and Conner watched videos and cable (I found the cable line in his new room that I forgot I could hook up). I cleaned out his closet and mine and put shelves up in his new closet. I always try to get rid of or really just organize Conner's stuff every so often so I am not left with a whole bunch of stuff to go through when something happens to him. I think switching rooms forced me to do it this time. I like him in the middle room much better. He is so much more a part of what's going on. Conner tried to say, "Lauren" today when he got on the phone with her (cousin Lauren). It was so cute and very clear that he was trying to say Lauren. He said, "Lau-Lau-Lau." I couldn't believe it. I forgot to tell John! I need to tell him. He talked a lot today. We had pizza brought to us by Janice and Kimberly and of course Conner said nothing and looked straight at the tv the whole time. When people come he acts like he does nothing but look straight ahead. The day nurses really see that he does so much more and that he has his own language. Irene's gotten pretty good at understanding his language that he speaks with his eyes, fingers, throat, mouth and tummy. Abby is watching a Christmas video. How depressing! I am going to have to go so I can somehow manipulate her into thinking she doesn't want to watch it. I guess if I turn off the tv, I better read to her. Conner's already asleep. it didn't take him long. He was exhausted a long time ago when I bathed him. I gave him a great massage with good smelling lotion. Gotta go.
CommentsHi Sweetie I know you like the bright sunshine and all that, but I'm ready for a good old stormy day, so I can feel justified to stay inside and just clean house and work on my pictures. I've made 10 new pictures from the photos I took in Hiawassee last week, and there are several other good ones I could do. But it's sunny and I have to work or feel guilty. I hope Conner will be well rested for his party on Saturday, so he can enjoy the kids and all the excitement. I need to follow your lead today and work up some enthusiasm for life...tough time right now. Love you all, Mom (and Grammy)
CommentsAnother pretty good day except John was ill. I hope he'll feel better tomorrow. I made him breakfast at about 3:30 pm-he was starving- and as I was walking down the hall, I dropped it plate down on the carpet. So, I started over. No big deal but Abby sure did think it was funny. Eggs, toast and microwave-made bacon is not that difficult. Anyway, clutsy stuff is my specialty. I ALWAYS-Alison can attest-do stuff like that. Okay, Conner had such a great day today. He did wonderfully during his treatment. He didn't even choke. He talked. He did NOT sleep. Dottie Garvin and Lucy came by and Patsy Wiggins and her son came by and brought supper later(very delicious) and he stayed awake through it all. We appreciate your visits, by the way. Conner finally fell asleep for a little bit but he woke and he is STILL awake now at about 11:30 pm. HOW???!!!! I think Connie perked him up a bit since its his birthday tomorrow and the next day. I am so excited to show Conner off to those who can make it. He is so precious and I want everyone to know that his support is worth the effort. Conner is such a real angel. When you spend time with him you realize you are spending time with a real little person who truly has done nothing bad, never will and will be looking over you one day. That's an angel and I get him everyday. Better even that I am an angel's mommy. What a special role in life. Abby demands a bedtime story, so I must go. Conner demands kisses, I'm sure. Oh, how I love to love. I suppose you taught me that mom.
CommentsLoving wasn't something you had to learn. It has always come very naturally to you. It's the easy part. The diciplining was always the hard part for me. And Happy Birthday, Conner and Harry. I look forward to seeing both of you tomorrow to celebrate birthdays with two special guys in my life. We'll surely be surrounded by love and goodness from heaven and earth...lots of friends and family here and lots of friends and family looking down from above. Hope John is feeling better today. Conner needs his daddy strong and healthy with big smiles on his face.
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CommentsHAPPY BIRTHDAY CONNER!!!!!!!!!!!!!!!! What a beautiful day it is! I can't wait to see your precious face tomorrow & celebrate your big birthday with all your friends & family. I am so thankful God has blessed us with this day & I look forward to seeing you & your family tomorrow. Lots of love!!!!!!
CommentsHAPPY BIRTHDAY CONNER!!!! I hope you have a wonderful day and a great party tomorrow.
CommentsHappy Birthday to Conner! He woke up talking with his tummy. He bounces his tummy. What a sweetie pie. And to wake up and see the paper and see my honey's face right up in front of me. Holli Deal Roach wrote a nice article all about CONNER! He is such a special little dude.
CommentsHappy Birthday, Conner. You are such a "Sweet Prince". Have fun at your party tomorrow night. Betsey, take care of yourself. Hugs to you, John and Conner. Miss Lucie
CommentsConner, we just wanted to wish you a very happy birthday. You are such a handsome young man and we know your mommy and daddy are so proud of you. You hang in there and have a wonderful time at your birthday party. Wanda, Jim and Samantha Dodaro
CommentsHi Sweet Conner- Happy Birthday Big Guy!!!! I'm so sorry that I won't be able to make your party now since I came down with the flu yesterday :(. But I will be thinking about you tomorrow and wishing I was there celebrating with you and everyone who loves you. Big hugs and kisses and HAPPY HAPPY BIRTHDAY!!! I love you all... P.S. Debbie, Payton's Mommy, said to tell you Happy Birthday today- tomorrow is Payton's 1st Birthday.
CommentsHappy Birthday to you, happy birthday to you! Conner, have a wonderful day! It sounds like your party will be a big, bash! I'm hope the whole day is a success and that you enjoy every minute of it! I hope your mom posts the article in the newspaper about your party. We'd love to see it! Hugs and kisses from all of us. Sue, Casey and Colin
CommentsThanks for all the Birthday wishes. I'll try to get the article on the site. I tried to get it from www.statesboroherald.com but its not in the archives yet it seems. Maria, I am sorry you have the flu. We'll miss you but I'll see you soon for your bachelorette party cruise!!!! (If things are okay here). Well, Conner has had a pretty good day. He knew it was his birthday. He acted all bossy and king-like. Or Prince-like, right Lucie? Conner talked all day long. He had so much to say. "Its my birthday. I am two. I am going to have a party tomorrow. I will have fun and be well. I love my mommy and daddy." Thanks for thinking of Conner on his special day. We hope to see some of you tomorrow. We will get pictures up as soon as we can. We don't have a nurse tonight so I need to go set my alarm. Its sort of okay because the nurse (flat tire) is going to make it up and it will give me a break later. I may be able to scoot to the beach for a day since John will have extra help throughout that day. We'll see. I take advantage of any opportunity I can. I never know when weeks will go by without one. Gotta go. I am tired!!
CommentsDear Conner, I hope you have a SUPER Birthday Party today and that your Mommy and Daddy are able to enjoy you and all the friends coming to see you! Birthday's are so special...the day you came into this world. I still remember holding you in the hospital the day after you were born. Your Mom and Dad were so excited and ESPECIALLY your Grandmommy Connie...she loves her boys!!! All of them! You were so cute and fat with all that dark hair...just precious! Have a great and blessed day! Love to you, Mrs. Shelley
CommentsWe had a great time at the party. Everyone did a great job helping it be perfect and it was. Conner got to touch a babe pig. It was so cute and little and it squealed and snorted. He was in shock. We talked about it today and he says he remembers the pig and how it snorted. I don't know if I remember ever touching a real pig either but it was neat for all of us. Conner is tired. I hope he naps a while today. We enjoyed visiting with everyone and going to play pool later with the friends. Now I am cleaning up and going to the beach for a whole day and a half!!!!! What a vacation. All by my lonesome. How peaceful! I don't remember the last time I had alone time besides driving in a car. We have nurses coming pretty much back to back until Tues. at 2 (unique situation). So, I must clean, kiss Conner then ESCAPE!!! I am so lucky. I hope Conner does well. I will miss my sweet, terrible two year old. Just kidding, he's never been bad just a little bratty sometimes. When he acts bratty I just laugh at him and he usually starts smiling. Oh, how I love him. love, love, love.
CommentsHello Birthday Boy, Today, you are two years and two days old. Robyn taught me, when she was a little girl, that you are suppose to celebrate your birthday for a week after the day. So, until Thursday, it's officially your birthday. Kimberly told me you had a very good party, with a lot of friends and relatives. I wanted to be with you so bad, but sometimes grown-ups have obligations that prevent them from doing exactly what they want. I heard a nice family brought a baby pig to the party. I have a piece of your birthday cake that Aunt Julie gave you. It is so good. That was the bigest cake I think I've ever seen. The wedding I went to was beautiful. One of the songs was "Wind Beneath my Wings", I thought about you and your mommie; I think that was written for the two of you. You know something "Special little boy", you bring out the best in people. I hope you have a good day tomorrow.
CommentsI am so glad Conner had a great birthday party. Kimberly told me all about it! I was so sorry we could not be there. I read what my mom wrote and she is right, birthdays are week long celebrations according to me. So for the next week, Conner you enjoy your birthday and make mommy and daddy spoil you even more than they normally do. We sure do feel so very far away from you way out here in Texas. There is a good reason for that huh - Texas is very far away from Georgia. My daughter reminds me of that almost daily. She misses her Memoo and Buck -very much! Anyway Conner, not a day goes by that you are not thought of, prayed for and loved by us. We know you are very special. We love your mommy and daddy too. I hope to see you soon. Until then, know we are thinking about you and praying for you. The Petty's
CommentsThe party was indeed a success and Conner really enjoyed it. He was able to take a little snooze right in the middle of all the hubbub. Maybe Betsey needs to get some crowd sounds on tape to put him to sleep at night. We want to thank all of you who made the effort to be there and all of you who wanted to be and couldn't,for all the well wishes and all the hard work. Aunt Julie, the place looked great and so did the cake. I'm so glad that all of Conner's cousins were able to be present and enjoy his company. Children are wonderful the way they accept the difference in other children with no judgment whatsoever. He's just Conner, whom they love. Lauren, at eight, knows that Conner will not always be with us and it makes her sad, but it also makes her want to enjoy him while she can. She's so philosophical about his condition and says "Well, Aunt Betsey, at least he doesn't make a mess for you to clean up." And Abby, at three, just sees him as a "baby" who must be entertained and loved and given special attention. What wonderful lessons of love this child brings to all of us. Well, Betsey is at the beach and probably going into withdrawal from not being near the computer or live people to talk to. I'm trying to call her regularly so she won't run up a bill on the cell phone. She'll probably make friends on the beach before the day is over...never has been much of a loner.
CommentsHi Sweet Conner- I am so glad to hear that you had so much fun on your birthday. I was very sad that I couldn't make it- but I didn't want to give you any of my nasty flu germs. I bet you were so excited to play with the little piglet. I don't think I have ever seen a real piglet but I will be looking forward to seeing pictures from the party online soon :o). I love and miss you- and I wish I were closer so I could visit often. Love and hugs...
CommentsHi Conner-boy, I enjoyed talking to you on the phone last night...you were very expressive. I know you were glad to have Mommy home from the beach. I'm sure she missed being with you, but things are a little tough for Mommy right now, so hang in there, buddy. Give Mommy and Daddy all those sweet smiles and "I luh"'s. When all else fails, love is all there is. We all need as much as we can get and need to give as much as we receive. Love, love, love Grammy
CommentsWell, Conner had a pretty good day. We think his ear is not clearing up. Black stuff still in his ear and other stuff that makes me think his throat may be sore. We are stepping up our sterility. Of course, I should've a long time ago but we noticed there is always room for more. More careful with and more changing of the catheter, gloves, cleaner with food bag where it goes into g-tube, etc. I suppose we could be giving this stuff back to him. I don't know. Its hard to be sterile in a child's bedroom but we certainly have to try harder. Anyway, I enjoyed the beach-too much! I go from having lots of fun to lots of stress to lots of sadness to lots of stress to lots of fun. Up and down, up and down. BUT, I try to keep balanced and by exercising. And it works. I held Conner three times today. I absolutely couldn't stand it. He was wearing his bipap and I just had to scoop him up and hold him close to me. Usually when I do that I have to put him right back down because he just can't really handle it. But today he did okay and he smiled real big. Then later I picked him again and hugged him and held him flopping in my arms. It was like holding a four year old who is sound asleep. He is so long! When I put him down he cried. My heart broke so I picked him back up until he was okay with me putting him down again. And the muscle in my left shoulder was burning from holding his head up with my biceps. He is my sweet love. What a sweet baby. We enjoyed visiting with Miss Lucie last night. Conner smiled right when he saw Lucie like he'd known her for years. I think he must have seen Connie in you, Lucie. Thanks for coming by and caring so much. We do love you. Conner enjoys talking to you too Grammy. He loves his grandparents. Sonny got to see Conner asleep without his bipap on tonight. Conner woke up so late today and was exhausted by about 8 pm. So, while I was giving him his nebulizer tx and reading "I'll Love You Forever," he fell asleep. He looked so precious. Okay, night night.
CommentsHope you have another good day...even better than yesterday. So much of what we experience depends on what we are willing to put into it. Why can't everyone know that and put it into practice? I'm sure Conner enjoyed being held by his mommy. It's been so long since I've held him. I can hardly remember when I wasn't apprehensive about handling his frail little body. But just kissing and carressing his little face and hands and feet give me some satisfaction. I have the "snuggle bunny" Abby here this morning. I'll be taking her to visit with her cousins Lauren and Drew for a few days. Abby was talking about Miss Connie on the way home yesterday. She wanted to know if the sun was burning her. She pointed away from the sun and asked if she was over there. It's kind of hard to explain that heaven isn't the sky when we keep talking about going "up to heaven". But she didn't care so much about where it was, she just wanted to see her again and so do I and all of us. That book "I'll Always Love You" will always be Connie's book. And her boys were all there for her when her end came. She was blessed with three smart, handsome, loving sons, and they were her shining stars.
CommentsBetsey, Such joy.Such a blessing I recieved from being with Conner. Such a short and unexpected chance to visit.Betsey, it looks like Conner's hair is getting lighter. Or was it the heavenly glow about him. As you could see, I have a thing about toes. His are so especially tempting. There are so many things to say about your and John's strength. Please know I left the three of you with constant breath of prayers for you. Thanks for the opportunity to be in your home again. Don't forget to lather up with lotion..you have a beautiful tan..Remember you are Loved.. Miss Lucie
CommentsCheck out the Birthday pictures!
CommentsConner's done okay today. We are going to get rid of this ear thing. We are overhauling his care. Sterile, sterile, sterile. The nurses will remind me, "Betsey...uh, that's not sterile. You need to put that over here." Even when I am trying so hard! That's what they're here for though, teach me! Anyway, we are going to get rid of it. He's back on medicine, too. I appreciate the nurses so much. They have been really good to Conner and me and John. All are very caring. We have been lucky. We also got to keep the 14 hours/day care. Thank goodness!!!!! Medicaid review is now, too. Shouldn't be major since I am not working and we spend more than we bring in. Carolyn Johnson at DFCS- you have been wonderful and I appreciate it. Everyone has been working together nicely lately and it just makes my life so much easier (and Deborah's). Deborah, you wondering why you haven't heard from me lately? Our therapists, medical equipment company, nurses, Dr. Deal and Sonya, social workers, WIC clerks, everyone has been great. So, thank you. When all that runs smooth I can just worry about Conner and his daily-hourly-minute-to-minute care. Conner was cute today. I laid down with him for a little while so we could snuggle. We read and when I would read, Conner would read. When I stopped he stopped. It was very distracting but I had to get used to it. Okay, gotta go.
CommentsHey Betsey, I am glad things are going well with all providers right now. That gives me some security because I am leaving Sat. to go with my family on vacation. I don't usually do that and I worry about being gone, but if ANYTHING comes up while I am gone next week leave me a voice mail and I will call you back. I will be checking every day. As always I am praying for yall and you are on my mind constantly! Love, Deborah
Commentsits late so I'm writing with the least amount of effort necessary-went to Hawkinsville-took Conner-got back late. We went for the day and Conner got to see MaMa, Aunt Elise, John Henry and Dora, and our dear friend we've only known through MaMa so far, Ms. Nina Bryant. We really enjoyed our visit and Conner got to meet "Elvis", MaMa's protective dog who looks like "Fly" from the movie Babe. I lied and told Conner it was Fly. He smiled. Conner's ear was bleeding this morning, draining blood and later draining icky stuff (but pulse, O2 and temp is normal)- so we will check it out tomorrow. Talked to doctor today and he is keeping up with it (good doc). We'll get him fixed up. Needless to say, CONNER IS A CUTIE PIE and we enjoyed showing him off today. MaMa looked good and we love her so much. night, night or good morning...
CommentsI miss you all. Wish I could have seen MaMa with you. I know she is trying to stay strong...what a positive energy she is. Life is so much easier when we are surrounded with positive instead of negative. And I know how hard that can be some days...I've had my share of negativity lately, but today I vow to stay positive. Hope that yucky old ear gets better soon. I can't stand to think of him in any pain or discomfort, but I guess the little guy has gotten used to it...it's a way of life with him. Talk to ya later.
CommentsConner had a pretty semi regular day. He didn't seem to feel too great but he stayed in a decent mood. I put him in the tub this evening. After I finished washing his body and hair, I put the bottom half of his body in the water and he moved his legs a bit. I asked, "Do you want to show Daddy how you move your legs?" "UH..HUH" What a cutie! He didn't want to get in the bath but once he did he wanted to show off his leg movement. He enjoyed lots of mommy hugs and kisses today as usual. And now he is so sweetly asleep on his little Conner pillow grandmommy Connie got him. Conner looks so peaceful and perfect when he sleeps. I am so lucky to be his mommy. John and I just stare at Conner and wonder how we had such a cute, funny, beautiful real-life angel baby. We're not all that great. Okay, the nurse is here so I am going to sleep. Gotta go communicate Conner's standing.
CommentsYou're right Betsey. We're all blessed to have our little angel in our lives. We all have so much to learn from him and from you. Some of us learn lessons easier and quicker than others, but in the end,most of us do, at least, learn acceptance. If things can't be accepted as they are, we will be very frustrated, angry people. Conner's accomplishments are so appreciated. He's just so pure - pure love. I look at him and wonder what he's thinking and know that whatever it is,it has to be good, because he's just given lots of love and each time he feels pain or discomfort, it's addressed by someone - mommy, daddy, nurses, loved ones. Give my big boy kisses and hugs from grammy and I'll talk to him later.
CommentsConner had a good night last night. He is getting along well today. I must go now to love on him and talk to him and read to him. Bye!
CommentsToday...well, today I woke up, got ready, went to the attorney's office, discussed divorce stuff, took papers to John at work, discussed divorce stuff and we signed and returned them to the attorney with the small filing fee. Left and went home to check on Conner. He was fine with the exception of blood in the nose and throat and yucky thick, colored stuff coming out of his mouth. EW! Went to talk to Julie about celebrating Jim's birthday at our house on Thursday. Told them to be prepared for Margaritas! Went home because it was approaching 2 pm at which time the Explorer turns back into a pumpkin. Conner was just finishing up his therapy and Peanuts had him up on his wedge with his bipap on. He looked like a big boy. We discussed the fact that his arms don't move up very far anymore and what to do about it or how to stretch him. I'll talk more with Jennifer about it. Then......a Minister of faith healing came and said a prayer for Conner and prayed for a miracle. It was a very moving experience. His faith was impressive and I must say I am envious of his level of confidence. However, I do believe a miracle could come in the form of a cure for sma which is very possible. That is the context in which I must truly believe. But I also believe that Conner himself is a miracle to many people-including me! Anyway, it was a great experience. After this, Miss Irene left and we thanked her for contacting her Pastor and caring so much for Conner. THEN!!!! I was so tired I couldn't stand it so I scooted Conner over-him wearing his bipap and on his incline- and put my head at his belly and his hand on my head and slept in between changing out videos and face cloths. Jane O'Donnell came by later and let us know what was going on with the stuff we took out of Conner's ear to have cultured the day before. We should find out tomorrow. Conner went off to sleep right after Jane left. I fed my precious dude and have no idea what I did for the next hour. I felt nauseated. I thought the nap would've helped. I looked up stuff on the internet about nutrition until John heard Conner waking up. His "dad intuition" was pretty acute considering he caught the almost inaudible wake up murmur before I did. Once he woke, I was feeling weak by Conner's incredible cuteness, so I had to pick him up and put him on my legs while we sat on the bed in front of his mirror. "John!!!!Come get us books!!!!" We read and sung and loved and hugged. I put him down. I ate. He watched videos. A little while later, I hooked his nebulizer to his bipap and watched some of Big Brother. Around 8:30 Sonny came by so I took off his bipap so Sonny could have a better visit and have more face space to kiss. At 9, I went to go work out and John noticed Conner's pulse was high. I told him to check the temp and it was 102. Kinda high, so we gave him Motrin and when I returned from the gym at 10 he was fine. He was in such a good mood for the rest of the night. John had finished his Tx while I was at the gym, so when I returned I put him in the tub real quick. He enjoyed his bath and I got him ready for bed. Maria, "Aunt Ree-a," called and talked to him until the nurse arrived at 11. My break! So here I am after communicating the day to the nurse and kissing Conner real good. I hope whoever is reading this was in the mood to hear about a day in the life of BETSEY. Seems pretty boring to me but I didn't know what to write in particular so I wrote everything. Regardless of what goes on with John and me, Conner's care comes first and that distracts everything else. Its nice to have John as a good friend that I will always love. I feel secure with that. ANYWAY!!!!!! enough about that. Who wants to hear about dissension? Love. Love is attractive. I love Conner. Oh, that's better. I am tired and I have a new People magazine. So, I think it is time to retire with my info. about those who are rich, famous yet still unhappy!
CommentsHoney, your life is not boring. It's very full. And you are able to bring the positive parts of your life to the front and push the negative back. If the negative things can be either changed or accepted, you will survive them. I know that you and John will always be friends. That is true for all of us and all of the Riggs family. Conner is the "bond" that will hold these families together - forever. He will always be a major part of our lives. Give my little dude lots of love and kisses for Grammy today. I hope that old yucky stuff gets out of him soon. I'm praying along with the healers and believers and anyone else who is looking for a miracle...what a blessing a miracle would be...his two year life actually is a miracle. Love to all, Mom
CommentsDear Sweet Betsey, There are no words to tell you how proud I am to be a part of the praying community for you and your family. I wish I could hug you big time and make all your troubles go away. It seems like the Young Prince is having good days with lots of hugs and smiles. He is very charming. Wonder if that is a Riggs trait?? Take care of yourself. You and John are being great parents. Your heart is with your child. Remember, you are loved. Miss Lucie
CommentsBetsey, where is your daily entry? Maybe you went to sleep early last night? I hope so. I enjoyed my conversation with Conner, though he wasn't very vocal with me. Happy Birthday to Big Jim. Wish I could be there for his party. Give him a big hug for me.(give little Jim one, too, while you're at it). Frankie is coming today and we get to roll the clock back for four whole days...back to high school, Ft. Jackson officer's club pool, shagging, what fun. We really had some good times...innocent though they were. We weren't angels, but we kept everything safe and simple. Things have changed alot for the young people today, or at least some of them. You and Conner and John have a good weekend and I'll bring pictures when I see you again.
CommentsHi Sweet Conner- I REALLY enjoyed talking to you (and your Mommy) the other night. Hearing your sweet voice just seems to brighten the day :o)!! I have decided that you are smarter than all of us grown-ups put together. We have so much to learn from your sweet little soul. I love you, miss you, and think of the entire Riggs family daily. I will be looking forward to our next talk. Hugs and Kisses...
CommentsWe celebrated Jim's birthday tonight and we had a very nice time. Kids, presents, and fun. I'm tired. We're still waiting on the ear issue. We'll get it straight. Conner remains in a good mood. He enjoyed the company tonight and Sonny got to hold him on his lap for a while. That was sweet. We got a picture of all the guys (and there are lots-Jim and Jim, Jr., John and John, Jr., Daniel and Sonny.) I'll post it as soon as I can get the camera hooked up. Good night.
CommentsIt's very early...good coffee...good company (Frankie is here). We're ready to get on the road and try to spend a couple of days finding something to laugh about...looking at all the "old people" we went to high school with. Is it possible we're one of them? Forty years...lifetimes ago...a time when we didn't know that SMA existed...great expectations. I will be thinking of you and I'll have my phone so I can talk to you. I really don't want to get too far from my life. It's the result of years of decision making and I'm just fine with where I am and I love the people in my life...see ya later, babes.
CommentsWe are going to Savannah tonight. I am so excited. I have been looking on the internet at the different places I want to go. There are a couple of places playing Jazz tonight. I would love to visit one of those places. Also, I want to go to the Moon River Brewery and taste some different beer. We will have nurses covering "go-out" time and Sonny is going to come over while we're gone and visit with Conner with the nurses help. I've been looking forward to this all week. I thought John would back out on me but NOPE! he is still wanting to go. He did try to get me to go see Planet of the Apes down the street but why???? when I have the time and help to go to Savannah and walk around and experience the beautiful atmosphere in the city? Come on! Anyway, it has worked out and the weather will hopefully stay clear and I will have a nice relaxing stroll through the squares, down River Street, listening to the soothing sounds of Jazz with a cool glass of wine in my hand. Ah. Now that's worth waiting for. Then I come home and kiss my sweet babydoll again. Perfection!
CommentsHey Betsey, Have a blast tonight in Savannah- you definitely deserve "go-out" time. I am so excited about the girls "get-a-way" time and I'm crossing my fingers that all goes well so that you will enjoy every second of the trip :o)!!! Have an outstanding weekend and give John my best. As always give Conner lots of smooches for me. Hugs and kisses...
CommentsBetsy - have a ball! No one deserves it more than you.
CommentsWell, we got rained on but I ignored it. It was fine. At Moon River there was some crab stuffed shrimp that was better than anything I've ever eaten. We walked so much my toes are still sore. Conner is doing fine. He's tolerating the big dose of Diflucan he's taking for his ear. He was cute today when the nurse said she was going to bathe him then turn him. Conner heard her say "bathe" and he started saying no. I had to explain that we meant a sponge bath in the bed not a bath tub bath. He had a moment yesterday when his pulse rate and oxygen dropped into the teens but it got that bad because the inexsufflator wasn't turned up enough. Something must have hit the nob when we were cleaning later. That little nob being the right spot is very important. When I figured out the inex. needed to be turned up a bit it cleared him right out and his numbers came up. You know I have to vent a little because i can't help but look around and think about it. I appreciate my sweet love, Conner, and I appreciate that John and I care about each other and that I have a nice, comfortable, warm bed to sleep in and food to eat. BUT, it makes me feel cheated when I sit out on my patio and there is no swing set there or baby pool-two things I couldn't wait to get when I was pregnant with Conner. I feel cheated when I am kissing Conner and I have to be desperately resourceful in how I memorize how his soft cheeks feel. Everyday, I experience about 50 of these things. They make me break down sometimes but for the most part I deal with it. Gotta go!
CommentsI only had a moment of self pity before Conner demanded my love and attention. Okay, so after feeling sorry for myself, Conner and I went outside and played with the hose. He put his fingers in the water and shook the hose until he was ready to go in. Then we hooked the computer up to his tv and put him on the floor and he was able to play with his Reader Rabbit through his tv. I taped his hand to the mouse and it gave him a little more independence with me holding his elbow to move the mouse. For an afternoon we forget what he can't do and just focus on what he can. Boy, is that the story of our lives or what? We are constantly trying to think of how to do things. Anyone with a child that isn't perfectly physically and mentally capable of utilizing the most common things sold in stores is doing that. Anyway, we had a nice afternoon and Conner is doing fine sitting at an incline on his side with his bipap on and food going watching the Wiggles trying very hard not to close his eyes. He is my precious, precious angel love. He is so funny and CUTE!!! I know we all feel that way about our kids. What gifts Conner gives me! When I feel sorry for myself I look at him and he is just so perfect-never making me mad-never misbehaving-never making a mess (I do that)-never doing anything to hurt himself. And he never will. Never. I don't have to worry about that. I don't have to worry about him turning 16 and wrecking his car or using drugs or anything. I just have to make sure he's happy for now. And I do. Enough. I'm done today talking about the impending doom of my son's death. I'll think about what to eat and finishing up the laundry John so sweetly does on a regular basis.
CommentsIt is so easy to slip into thinking about those scary future things that we can't control and don't even know when they are going to blind side us. But it's true that the only way to exist is to see the wonder of today...those sweet little sounds our baby makes (on the phone, for me) and those big eyes trying to say so much...all that love from and to our little angel. It's hard to think about those shadowey souls surrounding us and embracing Conner, but I have to know they are there...Connie, Bill, Mama, Daddy, Ansley, Tommy...so many loving souls to keep us from falling into that black hole of despair. It's going to be all right! We'll make it together. I love you all so much and I'm looking forward to seeing you soon. You'll get a good laugh from the videos of my Class Reunion...Frankie and I couldn't believe it - 40 years. We toured the old neighborhood and that was sad...had trouble finding our way around. Things and some people change alot in 40 years. I certainly have changed and I hope for the better...certainly wiser, but perhaps, less innocent. Life does take it's toll on our ability to be starry-eyed and innocent, with no worries or cares, but it adds to our strength of character and survival instincts. Love you, Mom
CommentsWe're cool today. I have nursing all day and all night-in exchange for none last night. So I have the day free but I feel weird not taking care of Conner all day. I feel like he is missing my kisses. He's sleeping now very soundly. Sorry Belinda that he was sleeping when you came by. I know he'd hate that he missed you today. He has a great time learning to talk. Okay, gotta go!
CommentsHey Betsey, Sounds like nursing etc was ok while I was gone. I thought about you and was hoping everything was going smoothly. Let me know what I can do. Love Deborah
CommentsHey Betsey, I really enjoyed visiting with you and Conner on Friday. I'm glad you and John had a good time Friday night. Are you still planning to visit the twins on Wednesday? Tell John that Josh saw "Planet of the Apes" Friday night and he loved it. I guess it's a guy thing. I would love to visit again and bring Kyler, if that's not too much. Please let me know.
CommentsOur miracle? Stem Cells Graft In Spinal Cord, Restore Movement In Paralyzed Mice Scientists at Johns Hopkins report they've restored movement to newly paralyzed rodents by injecting stem cells into the animals' spinal fluid. Results of their study were presented at the annual meeting of The Society for Neuroscience in New Orleans. The researchers introduced neural stem cells into the spinal fluid of mice and rats paralyzed by an animal virus that specifically attacks motor neurons. Normally, animals infected with Sindbis virus permanently lose the ability to move their limbs, as neurons leading from the spinal cord to muscles deteriorate. They drag legs and feet behind them. Fifty percent of the stem-cell treated rodents, however, recovered the ability to place the soles of one or both of their hind feet on the ground. "This research may lead most immediately to improved treatments for patients with paralyzing motor neuron diseases, such as amyotrophic lateral sclerosis (ALS) and another disorder, spinal motor atrophy (SMA)," says researcher Jeffrey Rothstein, M.D., Ph.D. "Under the best research circumstances," he adds, "stem cells could be used in early clinical trials within two years." "The study is significant because it's one of the first examples where stem cells may restore function over a broad region of the central nervous system," says neurologist Douglas Kerr, M.D., Ph.D., who led the research team. "Most use of neural stem cells so far has been for focused problems such as stroke damage or Parkinsonþs disease, which affect a small, specific area," Kerr explains. In the rodent study, however, injected stem cells migrated to broadly damaged areas of the spinal cord. "Something about cell death is apparently a potent stimulus for stem cell migration," says Kerr. "Add these cells to a normal rat or mouse, and nothing migrates to the spinal cord." In the study of 18 rodents, the researchers injected stem cells into the animals' cerebrospinal fluid via a hollow needle at the base of the spinal cord like a spinal tap in reverse. Within several weeks, the cells migrated to the ventral horn, a region of the spinal cord containing the bodies of motor nerve cells. "After 8 weeks, we saw a definite functional improvement in half of the mice and rats," says Kerr. "From 5 to 7 percent of the stem cells that migrated to the spinal cord appeared to differentiate into nerve cells, " he says. "They expressed mature neuronal markers on their cell surfaces. Now we're working to explain how such an apparently small number of nerve cells can make such a relatively large improvement in function. "It could be that fewer nerve cells are needed for function than we suspect. The other explanation is that the stem cells themselves haven't restored the nerve cell-to-muscle units required for movement but that, instead, they protect or stimulate the few undamaged nerve cells that still remain. We're pursuing this question now in the lab." The rodents infected with the Sindbis virus are a tested model for SMA, Kerr noted. SMA is the most common inherited neurological disorder and the most common inherited cause of infant death, affecting between 1 in 6,000 and 1 in 20,000 infants. In the disease, nerve cells leading from the spinal cord to muscles deteriorate. Children are born weak and have trouble swallowing, breathing and walking. Most die in infancy, though some live into young childhood. With ALS, which affects as many as 20,000 in this country, motor nerves leading from the brain to the spinal cord as well as those from the cord to muscles deteriorate. The disease eventually creates whole-body paralysis and death. The research was funded by grants from the Muscular Dystrophy Association and Project ALS. Other scientists were Nicholas Maragakis, M.D., John D. Gearhart, Ph.D., of Hopkins, and Evan Snyder, at Harvard. Editor's Note: The original news release can be found at http://hopkins.med.jhu.edu/press/2000/NOVEMBER/001105.HTM -------------------------------------------------------------------------------- Note: This story has been adapted from a news release issued by Johns Hopkins Medical Institutions for journalists and other members of the public. If you wish to quote from any part of this story, please credit Johns Hopkins Medical Institutions as the original source. You may also wish to include the following link in any citation: http://www.sciencedaily.com/releases/2000/11/001106061038.htm
CommentsConner has had a pretty decent day. He has a huge bump on his head though from the bipap being fastened too tight. One of those things...communication issue-no one's fault. Anyway, John, Conner and I watched 101 Dalmations (cartoon) and The Jungle Book in his room this afternoon. Conner talked all the way through. He did well for Belinda this morning for speech therapy. We were going to go to see the twins tomorrow but I didn't remind John so we have to plan it for he can get off work early. I hated to have to cancel. I can't wait to see the girls. What else? We miss Abby and wish she could be here with us. Maria, I put up the glow in the dark stuff on Conner's mirror and set up is black light. Okay, talk later.
CommentsI miss you all and Abby, too...feeling kind of sad and weepy. Why can't the path clear and everyone make progress? No answers, just lots of why nots, and what ifs. Hope you have a good and happy day - lots of kisses for Conner.
CommentsGood day. Conner wore the bipap all day but he was at an incline a lot too which was nice for him. He stayed out in the den all day too. Nurse Hope and kids visited and girlfriend Tara did too. Later, granddaddy and Uncle Daniel visited. It was a pretty, sunny, worry-free day. I enjoyed cooking supper for John, Daniel and Sonny (and me) and taking care of sweet Conner. He sang along with his videos today and that was super cute! "NaNaNa-NAAAA-na." OH!!! Susie Zakraisek! I forgot to tell you that I got your letter and I appreciate that you wrote me a letter. I intended to write back but I remember at odd times. Okay, maybe I'll get to bed early tonight. Good night.
CommentsDear Sweet Betsey, I keep up with you daily however I fail to comment as I should. Seems like you and Conner had a great day yesterday. How is our "Young Prince"? It's so good to read that he enjoyed singing along with the video and to have such a great day. What did you cook for supper? Sometimes that was therapy for me during our low times. I hope you and John are well and that you remember how much each of you are cared about and loved. Keep your beautiful smile, and give Young Prince lots of bunny nibbles from me. Love, Miss Lucie
CommentsWhen Connie was in the hospital a few days before she died I told her she was going on a great adventure. I told her details about going to the beach and dancing and taking a trip to England and going to the lake. And she told me to tell her more. So, it worked with her. Connie liked that I told her she was going on a "great adventure" and how wonderful it would be (I know she had her faith but this was to pass icky, depressing, dreary hospital time). Anyway, so it worked with Connie so that is the method I use with Conner. I tell him he is going on a great adventure with his grandmommy Connie and granddaddy Bill and lots of other people who love him. I really thought a little over an hour ago that he was about to embark on his great adventure. I can't believe he is still in his room watching tv. I don't know what happened. His numbers dropped and the nurse and I casually walked over to him and thought his pulse ox had slipped off his foot or moved a little. The numbers were just so low. I turned him over and he was blue and unresponsive. He had fallen asleep about 45 min. before that and we just thought he was sleeping so nicely. I got his mask off (breathing machine) and started inexsufflating him (like cpr) with oxygen. I could not keep his pulse rate up and I did it over and over and over and over and over and nothing was working and I had no other option but to just keep going with it not working. It just kept dropping and he wouldn't respond. I asked John to call Dr. Deal while we kept working on him. I felt like if we lost him we needed a doctor there. I thought we were losing him. I know we will and why wouldn't it happen just as it was? Thank you God for letting us keep him for a little while longer. Thank you. We still have to go see Grammy. We still have do things. I eventually was able to get his bipap back on with the oxygen turned up. His pulse stayed a little low for a bit but he has eventually worked it back up and actually both O2 and pulse are jumping up and down without too much distance. We'll get a chest x-ray tomorrow and other things depending on how his night goes. His day was fine, too. He had a good day today and yesterday. Instead of freaking out, I am just writing it out here and it can stay here instead of weighing too much in my brain for the rest of the night. I'll be nervous again for a while and start being real philosophical on this webpage for a bit. But I'll get over it and start being normal? again until the next time. OHHHHHH. What a night. I made really good chicken parmesan, Miss Lucie. Gotta go, I hear the pulse ox. I am sure he's okay though because I don't hear Tracy yelling. Thanks for listening whoever is reading.
CommentsOh my sweet darling baby, how terrible for you. I just can't stand thinking of the fear you experienced last night. I panic too badly when these things happen...my baby, my baby. How can we ever let him go? And how can we keep him here when his time comes? There just are no answers and we will accept what we must and we will know that Connie and Bill are right there to make his transition easy, soft, smooth and full of love...and laughter. They are both so capable of fun and humor. That will be the hard part for us. Will we ever smile again? I can't wait to see you all next week and I hope I can see Abby soon. I need that little sweet precious girl in my life so much and miss her so. It hurts not knowing where she is or what she's doing and thinking...not even the sound of her voice. Thank you for keeping Conner close to me by phone when I can't be there. I'm absolutely no help to you, but you're there for me to love. Love and kisses to my little buddy.
CommentsBetsey, I can't believe all that you must go through. Conner is so lucky to have you for a mom. Not only are you an incredible mom, but you are his unbelievably brave doctor and nurse. You amaze me with the knowledge and capabilities that you have developed in order to keep Conner with you. I don't know anyone else like you!!!!!!!! WOW!!!! I pray for all of you all the time. Love bunches, Deborah
CommentsBetsey, I am so sorry you all were so scared. I can't even imagine the fear & pain you must be going thru. I wish I was closer just so I could hug you & tell you everything is going to be ok. Poor little guy I wish I could see him & just hold his precious little hand & rub his beautiful curly hair. Your strength is amazing!!!! Conner is so fortunate to have you & we all are so fortunate to have you in our lives. You inspire me! Stay strong & I will see you soon!!!
CommentsHey little guy, grammy enjoyed talking to you last night. When you get here next weekend, we'll bring those little kittens I told you about right into the house for you to see and touch and remember what the kitty says, "meow". If you forget, we'll get Drew to help you say it. He has his own unique way of saying things, (when he feels like it). Everyone who lives up this way wants to see you. I talked to Mr. Lou and he wants to come and see you and Mammaw and Pop Pop and if any of the "aunties" would like to come out to Monroe, we'd love to have them...we'll just celebrate Conner Day. I hope you and Mommy and Daddy have a good weekend. Sounds like yesterday was very full with your visit to Snooky's and the doctor's office. I love you, little man. Give Mommy and Daddy kisses for me.
CommentsYes, after the x-rays (don't know results but at first glance nothing stands out) we took Conner to Snooky's and plugged him up. We should do that more often. I just don't like to get him out and in a restaurant if he is going to be uncomfortable or bored. But since we were out it was no big deal. He enjoyed the company he had while we ate. Conner seems to be in a decent mood today and did well the rest of the day yesterday--with the exception of when we left Snooky's and his pulse dropped dramatically and it was scary (John amended my original sentence by adding that at the end). John is hovering wanting the computer so I best compromise. Later...
CommentsBesty, I hadn't read the journal for a few days and my heart just skipped a beat when I ready about Conner's episode. I cannot imagine what you were feeling. I know that there's nothing I can really do but please know that I am here to support all of you. I pray for miracles and strength for you every day. Ashley June has been running a fairly high fever for almost a week so I don't dare visit right now for fear of infecting Conner but I would come over this instant if I could. We (and the doctors) don't know what is wrong with her. Probably just a virus but we are going to have to go in for blood cultures Monday if it still hasn't subsided. What we go through seems so easy and mundane compared to your lives. I hope Conner enjoyed Snooky's. That is Ashley June's favorite place to eat because everyone always seems to enjoy the kids. Give John a hug for me and Conner a big wet kiss. Call me if you need anything (food, a shoulder to cry on, a margarita, legal work, etc.)! I love you!
CommentsThanks Laura, how about all of the above? Fevers are pretty scary, especially when they don't go away. Today was tough but Conner enjoyed some time at Sonny's. Gotta go. Hope Ashley June gets better soon. Keep us posted.
CommentsDear Sweet Betsey, After reading about your terrible ordeal, I pray that you are able to take a deep breath and relax. Sweet Conner! How you are loved. Tonight on CBS there was a segment on the research that you mentioned earlier. Christopher Reed was speaking about the positive aspects and I was impressed. We are all praying for all measures to be met for the complete recovery for all that are touched by the mystery of SMA. Betsey, we are all praying for each of you. Remember, you are loved. Miss Lucie
CommentsConner had a pretty regular day. John and I decided to go out at about 11 last night to play pool. Tracey (nurse) was here and I had gotten Conner ready for bed hours earlier. We ended up going to this fun yet cheesy dance place after we met up with some people at the pool place. I danced a little but ended up at the pool table there. We got home late but we had fun and I got to rest all day. Sonny came and visited with Conner which gave me more rest time. Conner has been pouting before he goes to bed lately. Tonight I went in and laid behind him and snuggled close, told him about his "great adventure," and then we counted. With each number, Conner said, "uuuhh, uh, uhh, uhh." What a cutie. I asked him if his tummy hurts, "uuhh-huuuh." Poor baby. He is a such a precious thing. I love snuggling with him and he says he likes it when Mommy snuggles up to him. Conner is mommy's baby.
CommentsOh my little Conner-boy, I could tell you weren't feeling real great last night when we talked. You didn't really seem to have the energy to give me strong responses, but you gave me little uhs that made me know you could hear the silly things I was telling you. Please be strong and well this week so I can see you this weekend. Grammy loves you sooooooo much!
CommentsBetsy, the fever went away Sunday morning so no blood work today. I am so thankful. It is never fun to put your child through unnecessary pain (who knows that better than you!) I'm going to give it another couple of days to make sure I'm "germ free" and then come by to check on y'all. Anything I can bring for Conner? Does he like Winnie the Pooh? Give Conner a snuggle for me. Love, laura
CommentsLaura, I have a favor. Will you sue our insurance company and/or East GA in federal court in violation of the fair credit reporting act if these bills go on my credit like the hospital's so eloquent letters keep threatening after I have repeatedly done everything to get this...stuff... straightened out to no avail? Now East Ga.'s letters have these strict time limits yet when I call I get no answers or contradictory information and then more threatening letters-now concerning two matters-two of THEIR mistakes!!! My credit will be all I have when Conner is gone and I have to start a new life broke, single and already in debt. If my credit is gone too, I am in a mess!!! Anyway, sorry I know you're already doing all you can Laura(didn't mean to direct that at you)-I'm just scared and mad that this isn't getting straightenend out as easy as the hospital has the capability of doing so. Insurance says they were never billed! If it reaches my credit, I will be VERY, VERY, VERY!!!! upset. Okay, had to vent. Now, Conner had a tired day. I don't know if he felt too great but he was in an okay mood. He slept a lot then woke up tired. What a cutie. He showed me his magic fingers today. I held up his hands and he wiggles his fingers at me. So cute. That is off of his wiggles video when Magic Greg asks the kids to help him with his magic trick by wiggling their magic fingers. He smiles when I ask him to do it because HE CAN DO IT. Alright, gotta go check on him to make sure he went off to sleep. Sometimes when I hover around him at bedtime I keep him awake just kissing him and talking to him and making him do tricks instead of reading to him or singing-things to make him go to sleep. So, I just have to walk out and go back in a few minutes. Here I go.... Laura, thanks for all you do. Miss Lucie, I enjoyed your email! I felt like I was with you. Talk soon.
CommentsBetsey, I just caught up with your family and I don't even know what to say, I am so sorry for all that you must go through. It is so obvious how much you love Conner and how much he loves you. I can't imagine what you must go through on a day to day basis. It sure reminds me of how fragile life is and how we must make the best of every moment. I love you, John and Conner. You are always in my prayers. Please stay strong, let me know if there is anything we can do. Much Love, Robyn
CommentsBetsy, I'm calling you right now but have John bring me the stuff. I'm going to hand deliver Page a letter personally today and ask him to intervene. Please don't worry about this - I'll worry for you. We'll take care of it! You just worry about Conner.
CommentsBetsy, I spoke to the supervisor at the hospital and all the bills are taken care of. I'll write a letter confirming but PLEASE don't worry about this anymore. Call me if anymore come in. Otherwise just call me to take you to lunch when you can go! love, me
CommentsBetsy, I spoke to the supervisor at the hospital and all the bills are taken care of. I'll write a letter confirming but PLEASE don't worry about this anymore. Call me if anymore come in. Otherwise just call me to take you to lunch when you can go! love, me
CommentsLaura, I appreciate you doing all this today. I get aggravated when you get stuck with the people on the phone saying, "Sorry, can't help" or "it's not my job." That is not satisfactory. Conner is doing fine today. He is watching Babe and the physical therapist is just finishing with him. When I got back a minute ago he talked and talked. He was obviously trying to tell all that happened while I was gone. We did magic fingers for Irene. Adorable!!! Thanks Robyn. Miss Lucie, I think John wants to come see you on Sat. He said he'd call but I thought I'd mention it because he may wait until Fri. evening before he asks if you'll be there. I saw the pictures and the place is beautiful. My dream sanctuary... Talk soon.
CommentsHi Betsey, John, & Conner, I am sorry to read about the latest scare you had with Conner. Your strength amazes me. I've been settling back into my school routine and will be calling you soon to schedule therapy for Conner. He did such a great job last time I saw him. I enjoy him so-0-0-0 much. Take care! Love, Belinda
CommentsConner had a good night. I am trying to get him back on a better sleep schedule so I can get on a better sleep schedule but it was late again last night and late this morning. He got his bath at 6:45 pm, treatment right after 7, bipap on, tv off and ready for bed by 8:30 and asleep at 12 am. He acted so tired at 8 and was shutting his eyes and I had given him some tylenol since his temp was up just a little. He's been running a low grade fever every evening around 7. Not quite sure about that but it will make itself known if it needs to. Irene is working on our sweetie now. They just finished "the treatment." He'll be smelling sweet and talking in no time. We're having to use different bipap masks on him right now because the normal one has rubbed his skin raw and bloody between the eyes. There is nothing we haven't tried to prevent this but changing out masks is probably the best solution. The problem is that one mask doesn't get a good seal and I think it sits right under and almost on his nostrils(not good when you're breathing with them) and both the other masks leave a rash on Conner's face after a few days. So we only have right until the rash comes to heal the wound between the eyes. This is a common problem with our other little sma earthly angels that have to wear the bipap a lot. Everyone's always exchanging mask ideas. We've got a couple of good ones except he's allergic to the gel. Anyway, must get on with the business of Conner. Still more resources to tap into and try to get some legitimate bills that we really owe paid. I must say that it truly bites that I can't just go get a job and work 50 hours a week and make lots of dough to just pay my bills. I never dreamed that I would be in a situation where I couldn't just work and have what I needed. Beware, my friends. You can go through many savings fast if you get in an unfortunate situation such as ours. Luckily, we have support and know that whatever we can't handle we will always have a place to live and food to eat. No low is too low for me if I can get a job later and build my life back up. I will be heartbroken but I shall go on! I will survive!!
CommentsYes, Baby, you shall survive, as will I. I love you and Conner so much. (John, too, of course.) I enjoyed Conner singing to me last night. He had a nice powerful voice, with a little modulation in there. I'll call in a little while and see if he feels like "talking" to grammy tonight. Hang in there. I will, too.
CommentsConner slept late this morning. I put him on the kitchen floor after his nap yesterday so I could cook for the guys. He stayed off his bipap for a long time last night. That was good. Just a little while ago he said, "nooooo!" real loud and it was so very cute and clear. Typical two. His first real clear word was, "nooooo!" Sounds about right. He is resting peacefully now after reading and telling stories.
CommentsYeah Conner! My rebellious little two year old! Mommy's first words were "shut up", so you're alot like her...a little fighter from the start. I love you and look forward to seeing you tomorrow. We'll play and have lots of fun. Stay well!
CommentsWe are at Grammy's. Conner just held a kitty. He didn't seem to care. I think it was annoying him. He is singing with his veggietales video at the moment. Conner's great-grandparents (my father's parents) are here today visiting with us. They don't get to see Conner very often so this is a special visit. Oh, how cute, he's singing for the room. I guess we'll be leaving soon. It is just so hard to get here and then to leave. There is so much stuff and it gets spread around the house so fast. But John usually takes care of hauling it to the van and getting it situated. So I'll just relax for a bit. Alison and Jeff, I enjoyed hanging out with y'all at Billy's. We've had a nice weekend. Talk later. Betsey et al.
CommentsHi Riggs family, Just wanted you to know I was here and I am thinking about you all. I hope Conner had fun at his Grammy's house. I am sure they all enjoyed him being there so much. How are you feeling Betsey? I have not talked to you lately and I was just wondering if you were still able to get away to the gym and get your workout in. I know you said that was so relaxing to you. I hope you are. I sure wish I was in a position to help you more. I know lots of people do. Your family remains in our prayers. You really are amazing Betsey Riggs and there is no doubt that you will survive. I really admire you. You are truly one of the most courageous people I have ever met. I know your rewards in heaven will be many. I really think that you would make a fantastic doctor. I know you would, I know you said it grossed you out, but boy would you be great at it. Your patients and their families would love you so much. You have such great insight into what people need and what will make them feel better. I love your "great adventure" story. I am sure that made Ms. Connie feel so good and I know it does Conner too. Take care of yourself and if you need anything let us know. My mom said they will cook dinner for you guys whenever you need it. Take her up on it. I wish I was there to make you something. For now, my thoughts and prayers will have to do. Give Conner a big kiss from me and Maddy! She starts school this week, hard to believe summer is already over. I know with the new school year starting our visits to Georgia will be limited. Hopefully soon though! Much love to all three of you. Please give Sonny a hug from me too! Love, Robyn
CommentsI really enjoyed holding you yesterday, Conner. You are so long, I needed pillows to prop my arms so I wouldn't get worn out. We had fun singing together...your voice is much better than mine. Maybe that's why you sing with me - to drown out my sounds. I hope you enjoyed your trip home. Maybe I can come and see you again soon. I love you alot. Betsey, I agree that you would make a good doctor, but I also understand about the "gross" stuff (and the suffering). I guess it's different when you're taking care of your own...you can do anything for someone you love. See you, Mom
CommentsConner had a lovely trip. We saw a real, full rainbow on the way home. I know that talking about rainbows and their beauty is a little cliche' but when you see the bright colors right next to each other in a perfect semi-circle curving from one part of the green horizon to the other-it is SO neat and phenomenal-as John said. It is like a present from God. I feel like he's smiling at us telling us we're doing a good job. This one was actually a double rainbow-very cool it started out closest to the ground-blue, green, yellow, orange, red-a dark filling- then the rainbow on top was red, orange, yellow, green, blue. It was absolutely breathtaking. Conner was sleeping so he didn't get to see it. We had a nice weekend. Robyn, as far as the doctor thing, I skipped school the day we dissected frogs only to have to make it up alone-after school with no one to turn to. Then I saw the janitor coming down the hallway. "Could you please break this frog's jaw and cut his tummy open....please?" So, I was still able to get out of having to do it. I don't know. I'm a little weak in the tummy and not to mention how long I'd have to go to school! Anyway, I appreciate the belief in my potential. And I will take your mom up on the offer to cook a meal. Mom, Conner really enjoyed you this weekend. He likes to be sung to so he can sing along. That was so cute! He loves his Grammy. You spoil him like you do all the others and he appreciates that. Conner woke up early this morning with a little congestion and a lot of air in his tummy. Usually when his secretions are a bit thicker he tends to get more air in his belly. I think he's okay for now but I know he's probably tired from his trip. His schedule's a little off. Oh, I'm tired of writing now-there's nothing interesting going on but it is a pretty day and we are going to have a good day.
Commentshey betsey and conner- betsey i have something for ya, probably can guess what it is so i am planning on a visit sometime tomorrow. i will give you a call. see ya soon. love, tara
CommentsTara! We want you to come eat with us on Wed. night if you can...If not, we'll do it another time. I called you today (mon.) I'm on night duty tonight. I was kinda concerned because I think the nurse couldn't come because something happened in her family. It sounded serious. I hope everything is okay, though. I was going to go to Sav. to pick up some things in the morning but I'll just put it off for a day. I will be sleeping in the morning and hopefully until a little after 12. I'm trying to wait to lay down. Since I am out of training waking every two hours or less for Conner in the night its easier to just stay up and sleep when the morning nurse comes. Poor babe, he was fussing in his sleep about an hour ago. I wonder what he was dreamin' about. Maybe he was dreamin' he was stuck in Grouchland and Elmo was no where to be found. Oh Robyn, you had asked about the gym. I am addicted. I go everyday and it does keep me from getting trapped in the house. I know that situations like ours can put extra years on, so I am trying to fight it. Its part of my survival plan. I stick to my survival plan some of the time. Sometimes I trash it and find it again later. I sound tired, don't I? I better go then. But first, cute things Conner did today: He always copies me or tries to drown me out when I am talking to someone on the phone or in the den. The therapist and I were talking and I would say, "uh-huh......uh-huh" several times and Conner chimes in with his "uh-huh....uh-huh...." Or if I'm on the phone saying, "NO! no...no." Conner will say, "Na...Na...na" Anyway, its kinda cute because I forget that he listening and that old! and he reminds me. Now, I will go make Conner more food for the night and then wait about 45 min. and turn him then I will lay down for two hours unless he needs me sooner!
CommentsFor those of you who don't get to see Betsey very often, I would like to say that she is really looking good! The gym workouts are doing what they are supposed to and in spite of all she has to do, she keeps herself looking fit and beautiful and that's not just because I'm her mother. My daughter is phenomenal in her own right and through her own efforts...physically, mentally, emotionally, and spiritually. Now, for Conner...what a guy! Have a good day today and give Mommy lots of kisses for grammy. I love you and your sweet little sounds and wiggly little fingers and furtive little eye movements. You are a communicator.
CommentsWhy thank you, mother. I am so lucky to have this way of getting constant encouragement. It really does motivate me to keep doing what I am doing and not just lay in bed from morning 'til night like I wish I could sometimes. Actually, Conner won't let me and he's a pretty good motivator, too. We tried to get him in the den after his nap but we couldn't quite make it. I picked him up and he sounded a little congested so I put him down to clear him. Clearing him lasted from about 6:15 until like 7:45 or something. John worked on him while I made dinner then I took over while John, Sonny and Daniel ate. Then I finally got him to a point to put his pj's on and bipap back on and he was fine. His temp and pulse rose by 11:30 pm though and I had to give him some tylenol3. He's getting sick and I guess we should do something?? if he doesn't get better by Wed. night or Thurs. It's sort of been coming on for a week. We'll just continue to give him extra attention and keep him clear. He sang for his granddaddy tonight. And he did lots of talking today-especially when he was supposed to be napping. Can you believe I have a real life angel in a room down the hall? He is so precious with his delicate hands and thin fingers that sit to his side or on his narrow chest. His hands look so perfect even though they don't function. They look like perfect little two year old hands. Conner enjoyed talking to you today, Tara. I'll dress him up and have him handsome when you come tomorrow night. Talk later.
CommentsConner's girlfriend, Tara, came over for dinner ("supper" as John calls it). Conner got cleaned up, hair combed and even a little cologne for his "date." Was he handsome or what, Tara? Conner was so sweet. Tara was rubbing his hair and Conner was cooing and talking. He was trying very hard to say some word and he said it over and over. I really think he was saying Tara but it sounded like ah-gah. over and over. We all ate tacos over here last night. We missed sweet baby Jim and Julie though. Julie is working hard right now. I had an appt. today at dfcs for welfare stuff but I thought it was at 9. It was at 8. That makes me look like I don't care or something but I just wrote it wrong or misunderstood somehow. I hate that!!! Having my masters in public administration, I studied bureaucratic efficiency and effectiveness and understand the cloud of need to move through paperwork and clients as efficiently as possible then there I am not showing up-one more obstacle in her day. That bothers me. But it happens. I'm not feeling real good today. I'll be okay later. I'll go take some med. I hardly ever get sick and it usually is mild enough for over the counter med. to handle. So, here I go. Conner is still sleeping!
Commentsthanks for having me over last night for dinner. it was tasty and i had fun hanging out with all the riggs, esp that good looking conner. he was so cute talking to me last night. he is such a big boy and quite a looker!! hope yall have a good afternoon. thanks again for last night. love, tara
CommentsDear Sweet Betsey, Please take care of yourself. Today I pulled Conner's picture up for all my homeroom students see. This is a new group and they had lots of questions about Conner that I hope I answered correctly. They immediately wanted to do something so we stopped regular instruction and had a Conner Day up here in the mountians in our 4th Grade room. Each child drew and colored a "Happy" picture for Conner. They had so much fun talking about him and looking at the web page and asking lots of questions. Again the "Young Prince" has touched 26 more lives. And to let you know that at least 30 of the students that I had last year have been down the hall to ask about Conner and see if there are more pictures to see since last May. We are all still watching and praying for all of you. If it is OK, I will mail these pictures to you. Tell John to call and let me know when we can plan a visit from all of you. Or if you need time, the house will be unlocked and waiting. Take care. Give the Prince bunny nibbles from me. Much Love, Miss Lucie
CommentsHey Betsey, Conner, and John, I am looking forward to seeing you all. I have missed seeing Conner since I didn't get to see you last week. I'll come by around 4:15 Fri. I'll call first and if he is asleep, I'll come on Sat if it's ok. I want him to be feeling good and ready to play and talk. I think of you all everyday and hope that everything is going well. I am so glad you were able to take Conner to see his Grammy. I know that had to be a great trip for everyone. Love, Belinda
CommentsHi my sweet little guy. Hope you and Mommy have fun today. Show Miss Belinda how you can say "Nooooo". You can make her laugh. And remember, don' frown...learning is a good thing. All the other kids are back in school, so you be a good little student and learn you lessons. Grammy loves you sooooo very much. You are our angel and our bright spot. I'll pray for a good clear comfortable day for you.
CommentsLucie, that is wonderful and sweet to have a Conner day! I will make it my project today to get some more pictures up for the kids and our family and friends. We're looking forward to seeing you Belinda. We woke Conner up at noon. I asked him if he was ready to wake up-"nooooo." He doesn't want to go to sleep and doesn't want to wake up-sounds like Mommy. He's doing okay, I guess. He is taking an antibiotic now and we're still treating the ear with diflucan. His mood is pretty good although he's not really talking too much today. Okay, talk later.
CommentsWell I'm up on nurse duty-that's sounds funny considering its my child I'm watching. The nurses do mommy duty, I suppose. Anyway, I was supposed to go to Atlanta tomorrow and be there at noon for Maria's shower but I guess not. That's okay-I'm kinda used to canceling plans. I am also used to making new plans. So, that's okay. Conner went to bed late tonight. I try to get him on a good schedule but, uh, that doesn't work. So, who cares? I have nurse help. I'll just go with whatever schedule he determines-within reason. It will evolve back to what works for everyone eventually. Okay, I'm going to take a break (sleep a little or watch a movie) before I have to tend to Conner again. I am going to the bedroom and I get to go to sleep knowing there is an angel sleeping a wall away. Jealous?
CommentsI haven't seen a grand baby all week and I'm really having withdrawal. I have talked to them on the phone (all but Drew, who won't talk on phones), but there's nothing like getting your arms around them and giving lots of kisses and telling them how wonderful, beautiful an special they are. So, I'll just keep all this pent up love inside for the day I get to put my hands on them. Love you all, Grammy
CommentsOH MY GOODNESS!!! The pictures from your class, Miss Lucie, are PRECIOUS!!!!! You have so many artists. I found the envelope this morning and took it into Conner's room. We went through each one examining his curly hair and all the pretty and unique rainbows. I loved how the kids drew him in his wagon laying down with his curly brown hair sticking out! And there's one of me pulling him in his wagon. Conner loved them all. He frowned and fretted when we were finished going through them. I'd ask him questions while we were looking at each picture and he'd say, "uh-huh," to let me know he knew what I was asking or describing. Thank you so much for thinking of Conner. We really enjoyed the pictures. I am keeping them, of course, and they are in his room whenever he wants to look at them.
CommentsDear Betsey, John & Conner: Just wanted to let you guys know that John & I are thinking of all 3 of you each and every day. We are praying for good days and nights for all of you. We hope that Conner is staying happy & comfortable. Love to you all, gina
CommentsOh...one more thing...I asked a little angel in heaven to watch after your little angel here on earth. I know in some way he is taking care of his little "sma buddy". love gina
CommentsOh...one more thing...I asked a little angel in heaven to watch after your little angel here on earth. I know in some way he is taking care of his little "sma buddy". love gina
CommentsThank you Gina. Your friendship is not only special but absolutely necessary for us. I hope we can offer some kind of support back to you! Conner is distracting me right now through the monitor. I told him I'd be right back to rub him, alright? "UUH-HUUUH." And he can't wait. He's calling me loudly then softly, loud, soft then real LOUD. What a cutie. There are some new pictures up on the page if you haven't checked. I better go rub Conner. He deserves it.
CommentsBetsey I looked at the new pictures and they are so sweet. Especially the one of Conner sleeping. He is such an angel. Hope you and conner both (and john too, i can't forget him) have had a good day today. This weekend (the 26th) is the day that my little booper would have turned 1. He will probably have the best b-day ever in heaven! I miss him so much. I think John & I are still going to get a birthday cake for him and celebrate his life in our own way. We will also celebrate Conner's life and all of the other precious babies who are stricken with this horrible disease. take care tonight, gina
CommentsOh Gina, we think of Andrew but especially this weekend...There is a mother who lost a baby to sma in a town nearby. I spoke to her recently and she told me that it has been very hard lately. At first, she could relatively manage but now she misses him so much. I don't know how I will deal with this but I think keeping your child's spirit alive and near, if you can, is such a wonderful thing to do. Conner is calling. He is ready for treatment and bed. I brought him out to the front room and he has sung and watched tv and talked and talked to his daddy and me all evening. Right now he is telling me his movie is over and its time for bed. So, gotta go.
CommentsWe couldn't quite get Conner out of his room today. When Irene left at 2 I went in and ended up waking Conner up. I didn't mean to! He had had a bloody nose that morning and I thought some of the junk was still in his throat because he was making a funny gurgling sound while he was asleep. I did suction some blood out and he woke up of course. I thought he'd go to sleep but nope. I sang to him, rubbed him and read to him and it made ME very tired so I got up in the bed next to Conner. He stared at me and talked to me while I fell asleep off and on holding his hand and patting his leg. I woke up for good when I smelled something kind of-poopy like-coming from the lower end of Conner's body. After watching a little bit of Babe, I eventually turned off his light, turned him over and he went right to sleep. After that nap, he got clogged up and John and I took turns trying to get him clear. He did better a little while later and he visited with grandaddy until I threw him in the bath and got him ready for bed. Then he talked to Uncle Billy then to Uncle Jeff on the phone. And we found out that ABBY MAY BE COMING TO VISIT SOON!!!!! Hooray! We miss Abby! I asked Conner if he's ready to see Abby and he said, "Uh-Huh!" Its late, gotta go.
CommentsDear Betsey, So sorry to hear that Conner has had such a hard time. I know you are John are working so very hard and I know you get very tired. Please know you are remembered in thoughts and prayers every day. Take care and give the young "Prince" some bunny nibbles from me at bedtime. Much love, Miss Lucie
CommentsI am also sorry to hear of the rough day. Conner is such a brave soul, such an inspiration. As are you and John. Thanks for taking such special care of him.
CommentsConner has had an okay day. He is my sweet love. He was so clingy today. When I would get up to walk out of his room he'd tear up. I think of my nephew Drew-Conner's age-and how he cries so hard when his mommy walks into the other room. I feel like Conner is so unempowered. He squeezes out a tear and I suppose that works for him but poor baby... And, hey, what's so great about me? Maybe I adjust him just right or give him one too many annoying kisses. He likes that? Obviously. I suppose I'll keep doing whatever it is that makes him love me so. A lotto love. Lots of kisses and adjusting and CPR. Oh, the thought of living without my love just breaks my heart but as Lauren says, "HE'S HERE NOW!" And he tries SO HARD! His legs were propped up by a pillow earlier and he was just trying so hard to shake his legs back and forth. Every time he tries, I say, "Oh,we have to show Daddy. Oh, look at Conner! He's moving!" We make a big deal out of every tiny move, the slightest quiver we get from Conner. Thanks for thoughts, etc. We appreciate it. Grammy, Conner enjoyed singing with you tonight on the phone. We want Abby! We want Abby!
CommentsWell, Conner doing okay today, I suppose. He's not acting like he's in any pain but he is passing blood in his poops. Dr. Deal is on top of it and he didn't think it was either of the real serious things it could be. So, we're gonna wait until Mon. and do some more things if we need to. He is being precious as always. He made two pictures Fri. One with me-his colors and shapes and one with Ms. Belinda(speech therapist) of a bus with kids in it. We tacked them to his wall so he can show them off. Okay, I'll keep you update on the status of Conner's poops. We're a little concerned but it could very well be nothing serious. So, until we hear otherwise from Conner or the Dr. we will go about as normal.
CommentsConner, my love, I'm coming to see you soon...don't know when and won't be able to stay long, but I want to bring Abby to cheer you and Mommy up. I love you, little man.
CommentsBetsey, I hope Conner will be ok and not have to have tests done on Monday. I know this is very concerning!!! Has this ever happened before? I hope Abby gets to come visit you. I know that would mean the world to you and Conner. You are always on my mind. Love Bunches!!! Deborah
CommentsWell, I think Conner is doing okay. He woke up early this morning and I just kept him awake hoping we could get him back on an early bedtime schedule. When he's up late, I am too. We are getting later and later, together. Anyway, he still had orange (blood?) in his stool yesterday. It has to go to the doctor in a minute. Okay, good-bye.
CommentsConner, um, oh, I wanna say like funny faces...beautiful faces...There's elmo...I wanna say, um, you're having a good day tonight and I love you so much! (Abby's dictated message to Conner through Betsey)
CommentsBetsy, Sounds like you and Conner are having so much fun with Abby. I hope the Dr. can get to the bottom of the funny color in Conner's stool. Thoughts are with you all, Gina
CommentsOh yes, Gina, Abby is so much fun and pretty and sweet. Something more than blood in poop(it tested positive for blood) is going on with Conner. His pulse is popping up and down and he's desatting arbitrarily-awake, asleep-with pulse dropping, without pulse dropping-pulse going high, pulse going low. Conner's not sleeping very well, waking up. BUT!!! He acts like he's always in a good mood and that confuses me. So, tomorrow I am going to hook up his other pulse ox and see if its consistent with the current one. Then if it is and we check his pulse "manually" and it is still consistent with the current pulse ox, something is really weird. I am prepared to find the answer is deterioration but I need to know for sure. I need to know how Conner is deteriorating. I need to know the process so we can better comfort him. If we know what's going on, then we know where to focus our comfort efforts-if they are needed. Right now big hugs and kisses and attention and treatments are sufficing but something is rearing what I think is an "ugly head." I feel like there is a wolf hiding behind a tree waiting to eat my baby when my guard is down-I know I can't beat the wolf. And my guard will be down this weekend because I am supposed to go on a 3 day cruise that has been planned for a long time. I hope he will be okay. Conner loves John so much and I know that if Conner's stable, he'll be fine. Conner is comforted by John's presence. The nurses do a good job, too. But I will still worry. I worry more about Conner getting Mommy attention than I do him surviving. I will have to call him and sing to him and tell him I love him. Anyway, lots of talk. Gotta go to bed but I know I won't because my schedule is all off. Once the nurse arrived and we finished talking, I came in the front room to visit with Momma and Abby and they were asleep. Of course, it was 12:30am. Oh well, we'll visit tomorrow if I don't sleep the morning away.
CommentsConner is doing much better, it seems. His pulse looks like its lower this morning. We'll watch him while he sleeps and see if its normal again. He woke up early this morning. He peed on Irene and me and he's doing the Tarzan yell this morning. Okay, bye.
CommentsHEY CONNER, John, & Betsey!!! I'm down visiting Mrs. Brenda in Panama City and we thought we let ya'll know that we are thinking about ya'll often. I even found a picture of you (Conner) and Mrs. Brenda giving you your FIRST bottle @ PPEC. I'll bring it by real soon. I'm still in Jekyll but I'll be coming home for good in two weeks. So I'll be sure to bring that picture by and some surprises from the island. WE ARE AMAZED DAILY @ ya'lls strength and perserverance for Conner to know that he is UNCONDITIONALLY LOVED. WE LOVE YA"LL BUNCHES! Conner tell Miss Tara that she might have a little competition from an older girl real soon. Let us know if we can do anything. love love - mere & miss Brenda
CommentsBetsey, Try to have fun on the cruise and not worry too, too much about your little one. Although his stats are questionable it is so comforting to hear he seems like he is still in an okay mood. I will continue to pray for strength for him (and you!) love Gina
CommentsAbby and I enjoyed our visit with Conner, Betsey and the Riggs men. Betsey, please stay well and have as much fun as is possible. I know that's saying alot. It's just not possible to be carefree and whimsical when your heart is lying in the bed in Statesboro. But Conner will be just fine with his Daddy, uncles, great nurses, and lots of friends. I'll call and talk to him, also. It's ok to have fun and laugh and be happy. Conner understands and loves you whereever you are. Those three days will go by very fast and you'll be back by his side, hopefully a little rested and ready to give him your undivided attention again. I love you all, Grammy
CommentsKnowing me and my friends, momma, you know I'll be exhausted-Lisa, Maria, Lorie, Alison and multiply that by 7. Speaking of y'all...I'm listening to the song, "I'm in love with a man twice my age" on Napster as I write to remind me of Islamorada and the reggae band and the equally fun time we're going to have on the cruise. Oh, the memories... Anyway, Conner is doing so much better, thank goodness! I was afraid he was going to be poopin' straight blood by now and have a high pulse and low O2. But his O2 is back at 98-99 and his pulse is jumpin' a little but not as drastically. Oh, he's a sweetie and a momma's boy. Daddy knows the fine details of caretaking but mommy knows what to do with an almost telepathic, psychic manner. Right? Meredith and Brenda...its good to hear from you. We look forward to your visit, Meredith. Conner has really been enjoying singing and "talking" especially when someone else initializes it. Actually, he will sing along with his instrumental hymns at night so he doesn't need too much encouragement. Right now he sings with everything that has music to it. "Uhhhh-uh-uuuhhhhhh-uh-uh!" Very cute. Belinda, I hope you are feeling better. Conner will miss you on Fri. if you can't come but that's okay. I don't feel very well but I don't think I have anything like what you talked about. I just haven't gotten a full night of uninterrupted sleep in at least two weeks. I do better with lots of rest which I got used to when the nursing started. I am going on and on about nothing. I need to get to bed but I am waiting on some clothes to dry so I can pack them. Okay more useless info. I'm going. I will get some pictures of the cruise posted when I get back.
CommentsThank you for sharing Conner and your story with me. I am very fortunate to have four healthy children. My youngest is 7 months old. I so take for granted the life that we enjoy. I can not begin to imagine not being able to take Evelyn to the store, her grandmothers or church. I receive so much joy from simply showing her off. It is wonderful that you have elected to share your story and pictures "on line" so that those of us who might not otherwise meet you or Conner can share in his life. I will not even try to wax poetic utterances or religious thoughts to you. I am a deeply religious person and reason by your devotion to Conner that you are also. Nevertheless you have to experience moments when you simply want to scream "why Conner"; "why us?" "Why me." I am not sure that there is any comfort from the support or concern of non effected individuals. However, you and your miracle son are in our prayers. May God richly bless you and your family not only during the time that you share with Conner, but in the years to come. Lynn Doss
CommentsDear Betsey, I just know you are missing the little Prince but I am so very glad you are getting a break also. Another day at school and it rained...sssoooo the kids wanted to have another Conner Day.. I gave in..we ditched Social Studies and just drew pictures and cut out stars and such just for Conner. The kids pooled their snack money for the postage and you will be getting another "large" envelope through "snail mail". There is a little extra surprise inside also. I made pictures of the kids --and they made pictures of each other. I got them developed this afternoon so look forward to seeing some really neat kids. Let me know what you think. I read them your email and it really tickled them to actually know you and Conner looked at their work. I think this time some of them did an indepth interpertation of the Vegie Tales just for Conner. Please enjoy. Betsey, please know we continue to pray daily for each of you..give kisses to all. Much Love, Miss Lucie
CommentsHi Everyone, It was great to see Conner on Fri. He was doing so much 'big boy talking'. When I told Ryan how much he was talking, he said that Conner was probably trying to tell me to hush. But, I think he enjoyed playing, and trying hard to talk. He is getting pretty good with his "uh-oh's". I hope everything goes well and the nurses show up while Betsey is away. I know Conner is in good hands with John and Sonny. But,I'm sure that you will be so glad when she gets back. I can't wait to hear all about Betsey's trip. Take care. God bless you! Love, Belinda
CommentsConner, I know you'll be glad to see Mommy tomorrow and I'll be glad to get my phone calls again. I am so glad Mommy got to go on this trip and I hope you enjoyed your male bonding time with the Riggs men. I'm sure the nurses gave you extra special mommy attention, 'cause they all know how "spoiled" you are and how you get your way with Mommy with just a look, a smile, a tear...whatever it takes. I've missed our talks also, but we'll make up for it tomorrow so get ready to tell me all about your weekend. I'm sure it was a real adventure with Daddy and Granddaddy Sonny. All my love and kisses till we're together again. Give Mommy some sweet kisses for grammy. Love, love
CommentsLynn, Lucie and class, Belinda and Grammy-thanks for the messages. I am still away. Our flight leaves early in the morning so we will be getting up about 4 am to leave from Maria's here in Ft. Lauderdale. I am so tired. I had so much fun that I feel like a different person. I have just returned from Fantasy Island where worries stay far, far away. I danced and danced and danced. But, I miss my sweet baby. I need to give him hugs and kisses. What must he be thinking? That I have abandoned him? I can't wait to see him push his tummy up and down when I walk in the room and sing to his music. Back to Conner and back to the real world. Can I readjust? Seeing Conner will be a great returning present. love, love
CommentsRemember, little girl, you are Mighty Mouse (or Mousette) and you can do anything! Even return to the real world when you must. But don't think that you can't have those fun times again. One thing you have learned is that Conner can get by for a few days without mommy right there. He can even have fun with Daddy and the guys (for a few days). Not to say that mommy isn't very necessary and I'm sure he's very happy to see you and he's learned the lesson that all small children learn - mommy may go away, but she ALWAYS comes back, and hopefully more energetic and ready for whatever she must be ready for (and with a few good memories to fall back on). I love you my beautiful, sweet, strong daughter, and your precious little guy and that wonderful Daddy of his who helped make your getaway possible. Now it's time for Daddy to have a fantasy island time.
CommentsWELCOME HOME BETSEY!!!!!!! I hope you had a great trip!!!! It sounds like you did. I know Conner will be glad to see you. I'm glad you had this chance to get a break!!! Love, Deborah
CommentsBetsey, Welcome Back! I can't wait to hear about your exciting trip. I know Conner will have a great big smile on his face when he sees you. I hope your trip was refreshing as I am sure you needed it very much. Talk soon. Love, Belinda
CommentsHey Betsey! So glad you were able to get away and enjoy yourself! I am going to be in town the weekend of the 15th and would love to come by and see your little man (or big guy as the case may be now!) and here about your cruise. We (me and Anya) are going to have tea and do some shopping in Savannah. Maybe you could come along....? Shelley
CommentsShelley, please come by! We should be here. The cruise was unbelievable. A whole ship of people paid to make sure we had fun. It was so much fun. I talked to this one guy on the snorkling island we went to in the Bahamas who said he remembered when my mom and dad were shot there. Those guys said they live near the beach where it happened. On the way over to the island, one of the crew on the ferry boat showed me the island where it happened. It wasn't hard for me to be there because I wasn't shot there. I got the news at home in Stone Mountain. That's where my hell took place. I was curious once we were out in the middle of the islands to know if any of the ones I was looking at was where it happened. That was all I wanted to know or cared about. The fact that people remember that someone important was killed there lends a little bit of dignity that being shot and killed strips away. Well, Conner has done pretty well today but I want to take him to the doctor. It feels like he has some impacted stool. He didn't poop while I was gone. But I am taking him to follow up on the left ear which still has stuff in it and he cried when I cleaned it. His pulse is still doing funny things, too. up and down, up and down. That's not normal and its been abnormal since that scary episode. They may not be related, its just my way of remembering. Gotta go to sleep now. Appt. is early.
Commentswelcome back betsey! It sounds like you had some fun and I'm so glad to hear it. I hope you are coming back feeling refreshed and energized and not tired and drained as a vacation can sometimes do. I missed not seeing any updates on conner while you were away. my thoughts are with him and you every day. Love, Gina
CommentsTo all you wonderful Conner supporters out there: Please say an extra prayer today for his great uncle Robert Carlisle. He's battling for his life in Emory Hospital. He survived the night after surgery for a brain aneurysm (sp?) Betsey has always felt especially close to Robert and I'm sure this will be a tough time for her, in addition to all that she has to deal with. Robert is a sweet man with a good heart who lost his two heroes - his brothers - at a very young age. Any while you're at it a little prayer for his mom and dad would be much appreciated. Their losses have been great, but their strength greater. Hang in there, Betsey. Robert and Mammaw and Pop Pop know you love them.
CommentsOh Betsey and Mrs. Carlisle I am so sorry to hear about Uncle Bobby. I have known you all for so long I feel like he is my Uncle too. I will have you all in my prayers. Please keep us updated on his progress. Big Huggs, Maria
CommentsYep...I don't know what to do. Its hard just hangin' out down here not knowing what's going on or how Mammaw and PopPop are or Bobby and Kate. I need to go but I just got back to Conner and ...I don't know. I guess I just wait. Like we did with Connie. No one knew what to do or what to think. I rested as long as I could this morning because I know that is what you are supposed to do during downtime because things get tough when something happens or when you are waiting around the hospital or worrying about people. You have to get rested up for the climax. The story of my life. I'm fine though. I just worry about everyone else. I am keeping busy and still reflecting on my relaxing trip. Conner is sweet and doing okay, I suppose. I had to fuss at him last night because he wanted me to put on a video and I wouldn't so he was going to filibuster. The longer he spoke out, the longer he could put off his sleep and possibly have me put him on a video. "No, No Conner. You go nigh-nigh. Conner... no talking! you can whisper but no loud talking. Go night-night!" "NAAAAAAAAAA!!!!!!!!!" I just had to discipline him. He's been getting assured that if he wakes up in the night, its okay because he can just get a video on and he can stay up all night. No,no,no. Not with Mommy in charge. Okay, gotta go. I'm sad but my attitude is positive. Regardless of what happens, my life is still in front of me and I can't ignore it so I better go invest in it even though I am sad.
CommentsHi Betsey, I will see you and Conner tomorrow around 4:00 if it is allright and if he is not sleeping. If that is not a good time, I can come by on Sat. around 12. I will call you tomorrow when I leave the preschool. I'm sorry to read about your uncle; I know you must feel torn about where you should be now. Take care. Give Conner a big hug for me. Love, Belinda
CommentsBetsey, It sounds like you had a wonderful trip. No one deserves it more than you! Please e-mail us when you can with all the fun details. I hope your uncle is better, I will make sure we pray for him and the family tonight. I would love to see Conner! We are tentatively planning a trip to Georgia in mid-October. Steele's birthday is next weekend and I am hoping mom and dad get to come out for it. Anyway, I miss you guys and we think about you all the time. Stay strong Betsey and remember how many people love and admire you. Please tell your mom for me how great I think she is. She seems like she is so much fun and so sweet. What an encourager, I get inspired reading her e-mails to you. She also will be in our prayers tonight! Much love, The Pettys
CommentsI enjoyed hearing Conner sing with me. He lets me sing "You Are my Sunshine" all the way through and then he starts singing. What a funny little boy! Jeff and I spent all day yesterday at the hospital. Mammaw and Pop Pop were there for awhile. It was very hard on them. Emory is hard place to get into and out of. Mammaw went in to see Robert, but Pop Pop didn't want to. They are very sad, but holding together like the strong people they are. The doctor explained that the next 5 days to two weeks is crucial because they expect him to get worse before he can start to get better and they are just trying to react to every situation and keep him alive. Betsey, I know you'd like to be close to everyone, but believe me, Conner needs you more than you need to be here now. I will watch out for Mammaw and Pop Pop, as will everyone else. Billy is here to help with the office if necessary. Robert and Marianna have good friends who are being supportive, and Robert would not know that you were here. So just pray for him wherever you are and pray that God's will will be done and we will accept it, whatever it is. Your grandmother understands that and will, once again, accept. Of course, she's in pain as is Pop Pop, but they are not self indulgent and you would never know how much they are hurting. Keep that little boy happy and healthy. We are all thinking of you and wishing we could all be together physically, but it's just not possible right now. Love you, Mom
CommentsMy dear Betsy. It simply does not seem fair that you and your family have had to endure the hardships you have on this earth. I have no doubt that all of you will have your rich share of treasures in heaven. I will add your uncle to my prayers and those of my prayer group. I love you and you know I am willing to do ANYTHING you need me to do. Just call. I'd like to bring Ashley June over if Conner's up to it. She's been well for a couple of weeks now. If not, I'll leave her at home and I'll come. Let me know what you think is best. Please give my love to John and Conner too. I'm thinking of all of you during this difficult time and praying for peace for all of you. "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33
CommentsDear Betsey, We will keep on praying!!! Much Love, Miss Lucie
CommentsThere is no change in Robert's condition. Well, there are changes but they are being handled to keep him from dying. But I think we know that that is a strong possibility despite the efforts. Conner watched Mary Poppins last night. Lots of singing. I guess he liked it. It seememd a little long compared to his other movies. He slept through the night when he finally fell asleep at 1:00 am. Maybe we can get him back on schedule. His ear is draining. We haven't gotten the results from his ear culture and we haven't even gotten a sample for his poop because he hasn't pooped. Not good. Time for an enema. Not by me. I don't know how. Ooooo. I guess I may have to. ooooooo. Poor baby. He's always being messed with. If he could move, we'd be black and blue. He just has to lay there and have all that stuff done to him and not even fight us off like most toddlers do. And he'd pack a good punch-he's a big kid, you know. He'd look like a little linebacker with his height and the weight he'd have on from my side of the family. I'm really just kidding. Okay, he's getting speech therapy with Belinda right now. Its such a treat. She knows how to play with him. She has special toys. Talk later.
CommentsBetsey, you give that baby an enema. You should have let Irene do it yesterday, now you get to do it. Just be gentle. He'll feel better when you finish. He needs the relief. I have Uncle Harry and Clay here and I'm enjoying them. They're going to the GA-Carlina game tonight so we'll get to hear about it in the morning.(I hope Carolina wins so Harry will be happy) I will probably go see Mammaw and Pop Pop when they leave for the game. This is very difficult - waiting, and not knowing what we're waiting for. Will he be able to get better or will we lose him? There are just so many things that will change as a result of this situation. If we have Robert in our lives, how will he be? Will he be Robert? Pop Pop is very scared of the possibilities and doesn't want him to linger in limbo if he can't get better. But right now we just don't know and must learn some patience.
CommentsWell, I did more than give him an enema. Poor thing. It broke my heart seeing him crying in pain for at least two hours straight. I finally managed to get him comfortable and cleaned out enough for him to fall asleep. He was exhausted. I didn't really know what to do but it sort of became apparent what I needed to do, so I did it. He's been sleeping a couple of hours now. I hope he'll have a better night's sleep tonight. I can't stand seeing him crying in pain. That kills me. It is torture. Hopefully, we'll have a good remainder of the day. You never know.
CommentsGood morning my baby and her baby I just woke from a really good dream about Bill and Tommy and Robert...they were all here with me and I could talk to them and touch them and we introduced Bill and Tommy to Conner. It was just so good to have them all together and looking just like they did the last time I saw them. And there was no sadness in the dream. It was just a happy visit that I didn't want to end, but knew it would have to. Hope my baby Conner has a good day. He sounded so pitiful crying on the phone yesterday. But he should feel much better today. Try not to let it get so bad again. I know you had no idea that it would, but I guess there needs to be some time limit of how he can go before something must be done, or just more stool softeners along with his food. We really don't know what that sweet little fellow endures. What a brave little boy he is.
CommentsHello friends: I did not introduce myself in my first email. I am one of Miss Lucie's friends. She has shared your story with my sisters and me. Lucie is our first cousin, but she is also a friend. Lucie knew that as mothers, the four of us could relate to the joys and tribulations of children. Healthy or sick, they all have special gifts to share. It is however, heart breaking when they are ill you can not comfort them or make it all better. How much more difficult your task must be. Have you read Dale Evans' book, Angel Unawares? It is very short and can be found in most religious book stores. I know that you might not have a great deal of time for reading, but it has some wonderful insights for parents of seriously ill children. My daughter was one of the children in Lucie's class last year. She was very pleased that I had bee keeping up with Conner. Your "little prince" has touched so many lives in a very positive way. Thanks again for sharing your story with us. Have a blessed day. Lynn Doss
CommentsBetsey, I just makes me sick to read about Connor crying from pain. I am so sorry he has to deal with this SMA nightmare. And of course you too. As always, I think about him everyday. I just hope and pray no more uncomfort for him. Thoughts and prayers with you, Gina
CommentsHi little Conner buddy, hope you and Mommy have a good day today with lots of rest, little discomfort and many smiles. Things are about the same here. We're all waiting for something positive from Emory about Uncle Robert, but so far things are not good. Pneumonia set in yesterday and is being treated. Mammaw and Pop Pop are very sad as are we all. I hope to see you soon. I'll try to go down when I can.
CommentsWell, Conner's poop is starting to move on its own now. Poor baby. He still is having cramps though. I just put a warm compress on and love him and he stopped crying. This stuff on tv is terrible. What a nightmare for those people and their families involved.
CommentsI am so glad that Conner is feeling better. He is so precious. I saw Sonny at the pharmacy and he told me how Conner has been doing the Tarzan 'yell'. I can't believe what happened with the world trade center. It is awful-so many people. What will happen next? Give Conner a big hug for me. Love, Belinda
CommentsWhat a crazy world we live in! Life is so precious to us, how can it be meaningless to these people who are willing to kill and die for - WHAT? I don't even know what it is they are trying to prove - power. It's so senseless. It's just a miracle that they are still finding people alive in that rubble this morning. I'm glad Conner is "pooping". He really doesn't like those enemas. He's probably giving it a special try. Love to you all. SMiles for Conner
CommentsConner is such a sweet cutie. I am glad I have his smiles and sweetness. He makes my life sweet. The disease is what sours. Anyway, I can't stand to hear about all the rescuers that died and the cell phone calls from the people on the planes. In fact, I can't even turn on the tv anymore. I have been listening to music since yesterday evening because I can't stand to hear it anymore. Its too bad to even look at or hear anymore. Conner is doing fine. Miss Lucie and class, did you all get the picture Conner glued for you? I asked John to send it weeks ago and I found it in a stack of stuff last week! We loved the new pictures and the pictures of the class!!! Conner really enjoyed looking through all the sweet drawings and messages. I am going to get them on the web page. I just have to have the time to get them scanned and emailed to Laura S. who manages the webpage. Thanks and I know all your soft hearts are thinking of the people up North. Waking up yesterday and hearing the news about the terrorists was really like getting Conner's diagnosis. Anyone who has been through it will find the similarities. Your whole world as you knew it and found security in is gone. You wake up the next day and can't believe this whole thing isn't a nightmare. You knew it could happen but didn't think it would happen in your own backyard or home. Shock and disbelief. How could this happen? But it did. Its clean up time and prayer time. That's been our life for two years. That's why its so hard to think of all the people who died and all of those families that are starting at the shock and disbelief stage only to go through anger before they accept and grieve. So many broken hearts. I really just can't think about it anymore now. I will be thankful that I have my love and I will go kiss him. |
