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CommentsThis is the third time I've tried to get on. Let's see if it's working yet. I need to "communicate"!
CommentsAll right, we're back in touch with the outside world. Betsey, Conner, and Abby are fine. We talk many, many times a day. Abby is starting pre-school today. She's very excited. Conner will probably be glad to have his mommy to himself for a few hours. He loves Abby, but I think he's a little territorial with Betsey. Lauren and Drew are fine. Drew is getting over his asthma attack and walking pneumonia. He's so laid back that you'd never know he was sick. Wish we were all closer. If only I could win the lottery and build a "compound". That would be heaven to have all my family within walking distance. I guess that's not realistic. Life moves us around.
CommentsOh, I thought I had put a message on last night. I guess it didn't go through. I wrote that Abby was starting school, of course. I wrote what you wrote mom. I think Conner goes back and forth about whether he wants Abby around or not. He loves her but not when she's taking my attention. I try to balance it, match time for time. They both got in bed early last night (but Conner woke at 10:30). I was more nervous than Abby this morning. She just wanted me to go and let her play. She looked beautiful this morning. Check out the new pictures! Gotta go do stuff.
CommentsThe charity info. is on the front page and if you click on it, you can get info. about the fundraiser in Savannah in Feb.
Commentshfryuodwe....types Abby. Abby's message: Of course you'll like to forgive me. I see you every night. of course remember whatever happens I'll be here for you ...you are near I love you so much grammy...of course I love you Ill come to your house later but you talk on the telephone when you need me. What's my phone number? hrke? I love you conner you're always my best friend...of course you like to forgive me anyway...and you are near about my heart...stop doing fortentious(???) you can do anything of my heart...happy birthday Conner for you but its not your birthday... I love you so much... you are kind of pretty but you look beautiful Conner but your music is kinda flamious(????) I love you so much... a heart that we forget our share and then I love you. That's Abby's message. Weird and what's with the made up words?
CommentsHow CUTE...reminds me of her Daddy and how he used to make up weird stuff when we were younger. Tell Abby thanks for the smile today :o)!!! I love the new pics. Please give Conner a big smooch from me. I'm looking forward to seeing you all soon. Hugs and kisses...
CommentsMaria, you have no idea how much she's like Jeff. Remember when Jeff used to make us repeat stuff he said or make you do ridiculous things or he'd get mad? Well, I am reliving the past. She gives me the same looks and has the same temper. Abby is just at the age when I have memories of Jeff. I was three when Jeff was four and she reminds me so much of him at four. One example is her placement of bad words in her angry fits. So appropriate, naughty but funny. She hasn't done it lately but when she does... Anyway, she actually hasn't been to time out in a couple of weeks. She has been so good, following directions, no arguments at transitions. Very well-behaved. I am so proud of her. Abby enjoyed her first day of school. I took her to Triple Play after school then we went home and I worked out. When I got back and Conner woke up from his nap, Abby sat on the floor in front of Conner. She layered two pillows on her lap so the books she read to him would be high enough for him to see. She "read" one book after the next and would ask him if he wanted another or if he could see and he would say, "uh-huh....uh-huh" I got it on video! And I took pictures because the moment was so sweet. I also got to fold some clothes with both of them awake. That is amazing. It is a gift to have her entertaining him. That takes a little load off of me, not to mention she is so close to his age that whatever she is enjoying, he probably is, too. She knows much better than I what he wants to do. Well, Abby was out early and I got to spend some alone time with Conner. John got the early evening and I got the later. He loves his daddy. Lots of smiles when Daddy's around. Conner's doing okay. No real sicknesses...just the problems with his bowels. Its not good but manageable. I really have to keep up with it or he can become impacted in just a couple of days. Relieving his impaction is not a pleasant act. I try to drug him a bit before or right after to relieve the pain. It was inevitable that moving his bowels would become a problem. Well, I'm tired so, time for bed!
CommentsWOW !!!! I just looked at the latest pictures of Conner and Abby. Conner has grown so much !! He must know how handsome he is. And of course, Abby ! What a beautiful child. Betsey, I loved seeing the picture of Ma Ma and John. I saw those beautiful smiles and of course was reminded of my dear friend Connie. You must get as much rest as you can with the all the running you are going to have with Abby. She looks so happy to be there. And Conner looks wonderful. The kids are so amazed at the change in his size. Several have ask if he still fits in his wagon. One said Mr. John may have to get him an extended bed to add on the end of the wagon. I think he was thinking of an extended cab of a truck. Anyway, they are still asking each day and we will be sending another package in a week or so. Take care. Give hugs to John and Abby and bunny nibbles to Prince Conner. Remember you are loved. Miss Lucie
CommentsConner is doing fine. We watched Grease last night. I think he likes it. He likes the music and dancing. John, Abby and I like it, anyway. Abby went to the doctor today. She's fine, too. She got shots today and was so good. Conner is a sweetie and is enjoying Abby!
CommentsSparkles just called and Conner and Abby lit up when they got to talk to her on the phone! Abby asked me earlier if she could call Sparkles. Its so funny that she has no idea that Meredith IS Sparkles. Sorry if I ruined it for anyone else.
CommentsHi Conner, Abby, Betsey and John, Hope you have a good day. I miss you all and hope to see you soon. I like "Grease", too. Maybe, you can graduate to "Dirty Dancing" when you're a little older. Isn't that one of your favorites, Betsey? The story may be to risque for the little ones, but they'd never understand, anyway. The music sure is good. Wonder what would happen at Hartsfield if Meredith dressed like Sparkles for her trip. Think it would close down the airport?
CommentsYep, some people think clowns are scary. Alison does. Um....a lady named Sheila Black took the place of another lady at medicaid and has decided arbitrarily that Conner's bipap is not a vent, therefore, disqualifying him from the nursing program. Isn't that sweet? Very thoughtful and researched decision to make that has statewide implications for all sma children... What she fails to take into consideration is that Conner would not survive trach surgery, he'd be dead in an hour or so without the bipap, and the current, more sophisticated vents are having mechanical problems making the bipap the only venting option. Each week something pops up to make life more of a challenge. I'm ready for some good news! WHEN???????? Like I need another challenge! The last two week challenges are too bad to even write on the journal. I wouldn't even want to depress you with them. I need a challenge break! Abby and Conner make me laugh and I feel lucky to have them, so I'll focus on that. But I'm afraid to thank God for them because EVERYTIME I thank God for something, it gets taken away or damaged or ill or gone. I guess that's why they are blessings-not guaranteed.
CommentsHang in there, Betsey!!!! Miss Lucie
CommentsAwe, Miss Lucie, I'm fine. I'm just complaining! Today Conner, Abby and I were laying in his room all holding hands, reading books and talking and laughing and I felt guilty for complaining. I had Conner's mirror on the floor (the one Holly Eckles(sp?) and Jill Burnett helped us get) and we all could see all of us-which we all take for granted. But, Conner can only see straight ahead since he can't move. So, it was nice for Conner to see himself, Abby, me and the book and all of our expressions and all that was going on. It was one of those moments that made me appreciate our life, no matter how crappy it seems to be sometimes. Hearing Abby laugh and seeing Conner's smile because they liked the way I was reading or that I was reading or whatever-because I was there-made me feel very special. They don't realize that they are the special ones. They're like diamonds and gold. I see their beauty and worth! Its hard not to.
CommentsYes, they are so special and valuable. And so are you. You are my little diamond, gold, platinum, sable, chincilla, Jaquar, trip to Paris, mansion in the mountains! Just keep on being you and I'll keep on being proud. And we'll all keep praying for those who can't see what's important...yet. I know there's hope for everyone and I just want to live for the day that all my children and their children are healthy, happy and productive. I want to see the warm fuzzy moments extended into a lifetime. Kisses and hugs to Abby and Conner, and John, and one for you, too. Love, Mom
CommentsDear Conner, Mr. John and Mrs. Betsey, How are you? We are fine. How was your Christmas? We saw lots of your new pictures on the computer the other day. You sure are growing, Conner. How is Abby's broken arm? We hope it is doing better. Mrs. McKinney told us you liked the tape of us singing.Do you listen to it much? We like to sing. We're sorry you had to go to the hospital when your lights went out. Were you scared? Are you getting ready for Valentines Day, Conner? We are. We are going to have a party here at school. We are going to send you and Abby lots of Valentine pictures and also some cards. It snow one day and Mrs. McKinney opened the blinds and let us turn our desk to the windows so we could watch it. We had fun. When we got home Kristiann tried to make a snowman. We are making State posters and learning about the Revolutionary War. Today is the 100th day of school and we get to watch a movie to celebrate. Take care and we will write later. It's time to go to reading and math class. Love, Kristianne and Caroline
CommentsKristiann and Caroline, Conner says that he had a great Christmas and his tree was so pretty with all of your cards on it. Abby's arm is fine. She has her cast off and it isn't giving her any problems. We didn't have enough snow to build any snowmen here. Conner is sittin right here with me while I type. I brought him in here to show him all the other pictures of the sma babies. Conner and I are the only ones here, so we can do special things like that right now. He is going to type a message to you. hgcfhghgbh mommy is helping me i am tired and ijust said,no. Okay. talk to you later. Thanks for writing!!
Commentsmore pictures on the way...check the photo page to see if they're up.
CommentsHey Betsey and family! I am here checking out whats happening and I saw your entry about medicaid. They are always looking for ways to cut costs. It should be illegal to just stop care without an interview, doc notes, actual PROOF that it is not needed. These people are not medical professionals, yet they make important decisions about our children. AND THEN, we have to go and FIGHT, like there is ANY energy left, for the things that our children should have the right to. Aren't there laws to protect us? I guess not. I get so angry hearing about stuff like this that I want to go and make changes...lobby congress...write letters to senators and congressmen, but being sma parents, we do not have the oh so precious TIME that would take. Our children are much more fragile than most, even more so than children that are using trach's sometimes and yet, because people have not heard of the bipap, we are written off...and written off...I am sorry for rambling on your journal, it is probably the last thing you need! ANother sma parent complaining! But, in all seriousness, you have more right to complain than most, you are in good company, and I am sure that no one would disagree! I am right there with ya! Good luck with the nursing!
CommentsThanks Debbie. You're so right! And I agree with every word. Vent anytime!!!!!!
CommentsBetsy- I've been very out of touch lately but spent the past hour reading entries and looking at pictures. Conner does look wonderful! He is SO tall and he looks like he's put on some weight. Those Riggs boys are all handsome - it runs in the family. Abby is adorable too. I may have missed it but where is she in pre-school and who is her teacher? I hope she is enjoying her new class. I do not know how you do all that you do. I hope that Conner stays well through the winter. Ashley June and the rest of her class all seem to have the creeping crud (runny noses & coughs). Usually she clears up in March with the warm weather so maybe she could come visit Conner then. I still would love for y'all to come out and see the horses and cows. I know the weather is a little tempermental right now but if you'll just let me know when is good for you, we'll set it up! I'll send Ashley June to her grandmother's if she still has a cold so we don't infect Conner! Call me if I can help with medicaid, Ga Power or any of the other struggles. It makes me feel like I'm making some small contribution. Hang in there - you all remain in our hearts and prayers. Much love, Laura
CommentsBetsy- I've been very out of touch lately but spent the past hour reading entries and looking at pictures. Conner does look wonderful! He is SO tall and he looks like he's put on some weight. Those Riggs boys are all handsome - it runs in the family. Abby is adorable too. I may have missed it but where is she in pre-school and who is her teacher? I hope she is enjoying her new class. I do not know how you do all that you do. I hope that Conner stays well through the winter. Ashley June and the rest of her class all seem to have the creeping crud (runny noses & coughs). Usually she clears up in March with the warm weather so maybe she could come visit Conner then. I still would love for y'all to come out and see the horses and cows. I know the weather is a little tempermental right now but if you'll just let me know when is good for you, we'll set it up! I'll send Ashley June to her grandmother's if she still has a cold so we don't infect Conner! Call me if I can help with medicaid, Ga Power or any of the other struggles. It makes me feel like I'm making some small contribution. Hang in there - you all remain in our hearts and prayers. Much love, Laura
CommentsThanks Laura. Well, Conner's sick. Poor baby. He ran a fever all weekend. I think (know) he has an ear infection in both ears. We have the medicine here but I was only putting it in his right ear. So, we'll put it in both and get it taken care of. I hadn't seen any drainage from the left ear so I didn't know. We didn't get the Look-in-the-ear-thing fixed until Sat. and that's when we saw that both ears were yucky. Anyway, we'll get it fixed. Its just a matter of knowing the true problem and having the appropriate medicine and I think we have done that and have that. I'm not sure what's going on with the nursing stuff. Someone was going to check on it for me and get back to me. I'm trying to get him a lighter, potentially portable bipap-VENT. How is a machine that breathes for someone not consider a vent? Even if it weren't mechanical and created by a tribe from the outback out of weeds and bark, if it is a breathing device, IT IS A VENT! Anyway, Grammy and Jeff are here visiting with Abby. She is happy to have them but I think she's nervous about her daddy leaving. I know it is very hard and sad for both of them. She didn't have school today because of the holiday so she was able to visit with them. Even though Conner's not feeling good, he is still being sweet. I gave him an extra lot of love yesterday. Its so hard to stay out of his room. His cheeks are so soft and kissable. Time to go!
CommentsHi! So sorry to read about Conner's bad ears. You are doing a wonderful job tending to and meeting Conner's needs. But I remember the feelings you have when you child is having sick days. You just want to take their place. I wish I could help--but know prayers are being said each day for each of you. We were also out of school today. It sure was nice to have a 3 day weekend. Tomorrow everything will start over again with the children. I know the first thing they will do is ask how Conner's weekend was. They will be sad to hear he's had a rough time of it. Take care -- rest when you can. Much Love, Miss Lucie
CommentsConner is being his sweet, cute self. I can hear him in the room being very loud. The night nurse is here now so I get a break. I need to get clothes folded!! I did get to get to the gym earlier. When Conner finally took a nap at about 7:30 pm I snuck out. I figured he'd be out for at least two hours and mom can handle listening to a monitor while he is asleep and on his bipap. If he needed to be turned or anything, she'd call me and I'd be home in 4 minutes. I've timed it. Anyway, tomorrow is a busy day. I go back to the doctor's office to recheck my minor, insignificant little health issues that have arisen. We go to the courthouse or at least draw up some papers to take to hopefully secure a legally recognized-temporary (yet more permanent than what she's had) situation for Abby here. We'll see what happens...She is so excited about showing Grammy and Daddy her school tomorrow. She thinks she changed schools because she spent the weekend with a sweet, young couple in Sylvania who took her to their church on Sunday. She said, "But my teacher at Grace's school gave me candy!" And she doesn't quite understand why she doesn't get to dress up everyday the way she does on that one day. Conner got in tub tonight and showed Grammy how he kicks his legs. I kept saying, "Conner, you are dirty aren't you?" "uh-huh" "You need a bath?" "uh-huh" He smells so good. I got this stuff for Christmas that is the sugar and oil-orange-ginger stuff and I massaged his hands and feet with it in the tub. Oh my goodness, he smells like an angel! I am just going on and on about the babies...I guess that's what proud moms (and aunts) do.
CommentsHi Betsey, I am so sorry I haven't checked in lately. I have been reading all about what has been going on with your family. Boy, you never cease to amaze me. You really are an incredible girl, mom, aunt, friend, daughter, sister, the list goes on and on. I am so glad that I have the opportunity to know you and your sweet, precious Conner. I am excited to go look at the new pictures. I have a question for you, do you know if there are any children with SMA in the Dallas-Fort Worth Area? I read about the fundraiser in Savannah and how you said the only thing standing in the way of a cure is money. I think we could do a fundraiser here. I just think it would be more sucessful if I knew of a family around here. There may already be a fundraiser that I don't know about but I would love to get involved in. I have a lot of friends from Church and Jeff's work and our neighborhood, etc that I think would really be willing to help. Anyway, just a thought, if I could help even a little it would make me feel better. I did not know if you knew from the site if there were any parents around here - not that I hope there are - I just thought with the statistics there are bound to be. Anyway, I am not trying to give you any more work to do but if you point me in the right direction I would be happy to look into it and see. We are coming to Georgia tomorrow, maybe I could drop by and see Conner if you guys are feeling up to a visit. I would at-least like to cook dinner for you while I am home - maybe on Thursday or Friday night? I hope to see you soon, wish I could help with the vent issue, I am so sorry that you have to deal with things like that on top of all the other things you must endure. Stay strong, I can't imagine how hard it must be. I will bring you and Abby some delicious cookies from my favorite bakery here. They are wonderful and I know she would like them. See you soon! Much Love, Robyn
CommentsAre you coming to see your new baby, Aunt Robyn? Please come by. I'm pretty sure Conner's is feeling better although he cried very hard last night when I checked his ear. I felt HORRIBLE!!! Thanks for your encouragement Robyn. Well, the fsma.org page on the message board is a good place to find out if there are families in your area. I know there are and there is a good sma doctor in Texas, too. I'm not sure if she's in your area but we can find out. Ianconne-I think is her name. Something close to that. Anyway, I'll post a message on the board or you can. Friends have done that and it is so appreciated by the families that a friend is so willing to help. If you want to post the message, the fsma link is on Conner's front page and then go to the message board. Gotta go, talk later! Come by Robyn and Miss Lucie tell the class Conner says, hello.
CommentsHi ! We got out of school early today due to several water problems. Needless to say the students were so excited. Betsey, I hope Conner is better. The kids were so saddened when they were told about his weekend and how bad he had been hurting. I'm not sure--but the class is up to something. I can't put my finger on it but I know something is going on. They keep asking all these questions about SMA and the equipment that Conner needs on a day to day basis. I'm proud that they are thinking about important things such as the well being of others. Hopefully, knowing about Conner has made an impression on their hearts. If I can teach anything these days, it would be how to develope compassion for others. Conner has meant so much to these children. By knowing him, they have told so many others about his condition. Therefore touching more lives than we can imagine. Take care. Give hugs to all and bunny nibbles to Conner and Abby. Much Love, Miss Lucie
CommentsABBY and CONNER....Oh- how I have missed our fun play times. I have been so busy with my school work that I have not had any time to play. (Abby- maybe I could come to your school one day because you told how you always get to play and have fun??!!) I have been working on my colors and I think I have them straight now. Hmmmm... maybe ya'll can give me a little easy test the next time we get together and play? (remember- I am just a clown so go easy on me.)Abby- I hope you will call me really soon. I have had such a tough week at school that maybe if I got to talk to you then my week would end better. I sure do miss my Conner and Abby!!!! bIg kIsSeS!! love love Sparkles
CommentsSorry I haven't written. Things have been SO busy. I've finally caught up on my sleep that I missed Mon., Tues. night. I got nothing for two nights, then passed out on Wed. afternoon. I went to bed late last night but slept until 11 am (aahhh) since Abby went to Grammy's yesterday and I didn't have to take her to school. I met Grammy and Granddaddy halfway last night. Conner baby is doing pretty good. I think,think, think his ears are better. I had been giving him a drop antibiotic and I checked out the ears yesterday and I THINK!!(I am NOT A DOC!) they are better. His fever is gone and his secretions are thinner and his pulse rate is back to normal. So, those are the signs that usually mean he is feeling better. I only saw one little spot of black in the left ear as opposed to a whole ear full of icky, dark stuff a couple of days ago and the wall of the right ear doesn't look bright red anymore. I'll call the specialist to run it by him. Miss Lucie, I would love to get Conner up to the mountains sometime before school gets out. We are working on getting a bipap (as I've mentioned) that will make getting Conner in and out of the car and away from the bed a pain-free, choke-free task. In other words, when we get that bipap our world can open up to him. A dream come true! What's funny is that Conner is so comfortable in his room that he really doesn't like to leave it to even go into the den or front room. He's so content watching videos and looking at books and stuff in his room that he'd be happy if the world just moved in there, (quietly). Well, Maria, should I tell everyone how old you are today? Happy Birthday!!! I hope you have a fun, good birthday and tell me all about it. Birthdays are very special. You have a lot of stuff that has happened this year to reflect on!
CommentsI am glad to hear that you think Conner's ear infection has cleared up. Did you hear about little Charlie, SMA Type I, who died Thursday? You can visit his site at http://www.caringbridge.com/mn/charlie/ . He was such a precious little angel. It makes me sick to my stomach to think of what this horrible disease does to our children. Sometimes I get very angry and want to explode and want to march right up to heaven and ask God WHY things like this must happen. It just seems so unfair. I do not understand. I understand everything happens for a reason yet I can not find reason or purpose in an innocent child suffering. The experience surely makes US better, more compassionate people...yet why must their lives be sacrificed to show us this? I think often about where I would be right now if SMA had not invaded my life and my family's life. And I think our lives would be very, very different. But without it, I know I would be much more selfish, much more into my own needs and my own life...and I really do not think that is what life is meant to be about. It is about others, about love, and being there for one another. Yet if it took SMA to teach me that it makes me feel like such a horrible person. And I so often think I would give up ANYTHING, any lesson I've learned b/c of this, just to have my little Booper back. It is all very confusing to me. I am sure you struggle with it as well. Enough about that. Thanks for listening to my pity party. But there is one thing I know for sure, Betsey...I know that you and Conner have such divine purposes for your lives. You both have touched so many people, many more than you probably even realize. You both have been true examples of inspiration and encouragement for us all. YOu have shown so much courage dealing with life's most dreadful of circumstances. Your lives demonstrate the very best of the human spirit as your bravery and love for life shines through so brightly. I have sat at my computer tonight and really "studied" Conner's pictures and he is such a beautiful, miraculous baby. You have so many people who think of you and your Conner baby, please do not ever feel alone. Your "SMA family" thinks of you all so much, much more than you know. Thank you for being you, and for taking such good, sweet care of Conner. Love, Gina
CommentsYes, Gina. I read about Charlie and cried. I read about June Price and cried. Thanks for putting his site up. Its so important to remember why finding a cure is so important. These kids could have lived long, healthy lives had they been born 10 years later-after the money has been collected, the research finished, testing finished and cure found. Fortunately and unfortunately, its only a matter of time. I fear that time is not on Conner's side even though we are so close to a cure. It makes me sick to think that if Conner had been born in 2004 instead of 1999, he may have outlived finding the cure. The research is so close. That's why the fundraiser in Savannah is so important. For those of you who don't know, it is on Feb. 2 and the link to the info. is on Conner's front page at the bottom. Gina, I feel just like you and stated it in "Conner's Story" that no lesson is worth this. I think a lot of us would sell our souls to save our kids from what we have seen and will see them endure. I'd rather be ignorant of all life lessons and be shallow than learn from Conner's suffering. Some may say I am shallow anyway! Some days I look at Conner and think, what kind of God would let a child(ren) suffer like this. Not my kind! And then he'll do something "miraculous"- a look or a sound or a movement that melts me. Then I think, Oh, a merciful God will allow me to witness this miracle of life! Anyone who meets Conner feels the same way. He and I know all the other angelbabies are just little miracles and gifts that we are lucky enough to witness. Its funny that you wrote all this today Gina because every thought you recorded was on my mind today. I am so lucky to still have Conner but I don't really look for a reason for why I have him or why I'm going to lose him-I don't do that anymore. However, when I think of losing Conner it makes me want to vomit. Nauseated. So....if I want to get through the day, I have to not think about it. I squeeze him, kiss him, cry on him, say "I love you," then go....go do the day and thank God (cautiously) when I can do it again. I think you and I and other sma moms, Gina, know what living each day individually means. We truly live day to day. I am looking to you Gina! How else will I know what to do when Conner's gone? Thanks for keeping up with us. When I worked I worked helping people. I started out at a community center and then covered a 16 county area trying to prevent social problems from perpetuating. My goal was to affect the most amount of people with the least amount of work. I figured that was the most efficient and effective way to make a positive change. Isn't it funny how having a dying child has accomplished that goal? But it is Conner who has completed my life's work for me. His one, fragile, secluded life has touched SO many people! That's why I feel so proud of him. He is, by my definition, a lifetime achievement! I am even more proud that others agree. I am so lucky to have such a special gift from God even though having that special gift will cost me a huge painful price of life. BUT---maybe I can reduce the cost somehow. That's my daily chore. Good night! Thanks Gina and all of you care for Conner so much.
CommentsWell said, baby girl. And, to Gina, my heart is with you and your family and your little Booper. He is truly one of our angels. Those sweet babies are not forgotten. They are free to run and fly and watch over their fellow angels here on earth. Life is a tough lesson sometimes. It seems a miracle just to be able to find things to laugh about, but we always manage. I can't imagine a world without Conner's presence...so I just don't. I know I'll survive when I have to, but I don't have to think about it now. So, have a good happy day today and save the tears for later. Drew just saw a deer in the yard. He pointed and said "'der it goes". Soooooo sweet. Love you guys,
CommentsHey Betsey, I got a return call from SB saying she doesn't have anything to do with that program and gave me the other name we discussed. I called and left a message for her to send info. on the program we are talking about. I'll let you know what I hear. Love, Deborah
CommentsAmazing! In one call you are told she runs the program and then the call to her reveals she has nothing to do with it? Do these people even know what they do? No wonder mistakes are made and people are deprived of services they desperately need. Thanks for helping Deborah. You, my brother- Billy, Dana Swanson and her mother, Ann McGuire, and PSA are all helping me in some capacity with this and I appreciate it. We'll get it straight! Conner's doing pretty good, I guess. I'll call the ENT tomorrow morning and get him an appt. or something. He is running fevers again but his mood is good. He's watching Pooh in the front room with me right now. Abby comes back tonight and we get back to the routine-back to school! Conner calls...gotta go. Oh, Maria, did you have a good birthday?
CommentsHey Betsey, I just tried to post something on the FSMA message board, but it does not look like it was sent. Is there a trick or did I just mess up. I did not want to put in the same message twice, thinking maybe it takes a little time to post. If I don't see it tomorrow, I'll re-do it. Let me know if I need to do something differently. It was great to see you this past weekend. Conner really looked great, I did not notice any change - except maybe he was bigger - than the last time I saw him. He sure is handsome:) Hope you had a great day today. Much Love, Robyn
CommentsRobyn, thanks for bringing food for us Sat. night. It was so good!! Try the message again on fsma, I didn't see it. That just happens sometimes. Conner is a big boy. He's been acting kinda shy lately with people he doesn't see all the time. Its kinda cute. Abby's back! Mom and I just took her to school. I hope we can get Conner feeling better.
CommentsDear Betsey, I hope Conner is feeling better and enjoying Abby being back. Betsey, I found out what the students were up to!!!!! I'll tell you later. Take care of yourself. The kids ask every day about all of you. I hope the sun is shining for you today. You are loved. Miss Lucie
CommentsBetsey, I don't know if you have been back to little Charlie's website in the last couple of days..but... his mom added two new pictures and you HAVE to see the third one. Your heart will melt when you see it, guaranteed. Hope you and Conner are having a good day today. I sent Conner a suprise in the mail today. I hope he likes it. Love, Gina
CommentsGina, I saw them and he was so cute. In the top picture, his color is so pale yet he has a big smile on his face. I have seen Conner that pale and its a scary feeling. I know you know. He was surely a precious thing. They all just keep smiling despite their fragile health. Conner goes to the ENT tomorrow. His left ear tube is sitting on its side with black junk all around it. Yuck! I looked in his ear and thought, what the heck is going on down there? love, love-Betsey
CommentsDear Betsey, I hope Conner is doing better and I'm glad Abby is enjoying school. The other day I told you the students were up to something? They were in the art closet alot which was a common behavior. But they were in there more each day and whispering to each other in little groups during their free time in the mornings. This weekend I came to work on my lesson plans. I checked the art closet for supplies and to my surprise there were several power aid bottles filled with change.(Mostly quarters). I ask the class yesterday what was up with the bottles. They looked at each other then all of a sudden told me everything. They had been saving their snack money ($.25) and their chore money. They read about Conner needing some equipment and they decided they were going to buy it for him. They said they understood about the fundraiser, however, they wanted to make sure Conner got something especially for him. Betsey, I just didn't know what to do. I have decided to let them continue with this project, with your permission. Some of these kids don't have snack money and they told me they were raking leaves and taking off trash for some older people on their road. They are determined to do something for Conner--to make him more comfortable. Thursday of this week has been deemed Conner's day here in the classroom. That day we will be drawing pictures, making Valentines for him and also for Abby. One little girl ask her Daddy about the cost of equipment. He owns a medical supply store here. I couldn't believe they had investigated prices. With your permission, we will send you a check along with the pictures and Valentines. Please use the amount we send to get whatever Conner may need. I'm very proud of this group. I must tell you, there is no telling what else they may think up to do. They seem to be very creative and determined. This has truly been a learning experience for all of us. We love each of you and as you now know you are thought about and prayed for by 28 fourth graders daily. Much Love, Miss Lucie
CommentsPrecious, precious sweeties. They have not ceased to amaze me! I hope after we get the new bipap and the stuff to make it portable, we can get Conner up there to meet his friends. We'd like to thank them personally for everything they have already done. Their parents should be proud. I am!
CommentsMiss. Lucie, The generosity of your youngsters just touches me. I had tears in my eyes as I read your latest entry. I pray they will always have this giving spirit. And Conner, how amazing it is your little precious life has touched so many people far above and beyond what your parents could have ever invisioned. I still can picture, in my head, your Momma holding you in her arms in the hospital. She was so pround and full of love for you, as I know she still is. May God Bless You All, Shelley
CommentsHAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY DEAR BETSEY! HAPPY BIRTHDAY TO YOU!!!
CommentsDear Betsey, I hope you have a wonderful day today! Many birthday wishes to you!
CommentsDear Betsey, I hope you have a wonderful day today! Many birthday wishes to you!
CommentsBetsy, I have just finished wisiting Conner's website. I learned of it form the article on the front page of the Statesboro Herald. The Fourth graders compassion moved me to tears. The innocence of a child is a beautiful, wonderful thing. Please let people know how much money these fourth graders raised and let people know how much more money is needed for the new equipment that Conner needs. You are a special person, I know this from looking at this website. You have been blessed with an angel. Children are a gift from God. I have two, a daughter and a son, they are my life. Best of luck to your family. I will keep Conner in my prayers. Maria
CommentsI AM SORRY FOR HIM I WANT TO SEE HIM JAHON HE IS CUT PIE SEE YOU LATER WRITE ME BACK JENNIFER
CommentsDear Betsey, The kids are singing to you now as I type. "Happy Birthday to you. Happy Birthday to you. Happy Birthday Miss Betsey, Happy Birthday to you.... AND MAANNNNNNNNY MOOOORRRRRREEEEEEEE" WE LOVE YOU!!!! Blue Ridge Elementary 4th Grade-Ms. McKinney's Class.
CommentsBetsey, I wish you a VERY HAPPY BIRTHDAY!!!! I will be praying for you to have a GREAT DAY! Take some time for yourself and do something to make yourself happy. Love, Gina
CommentsI found this site after reading the Statesboro Herald and I just want to let you know what a BEAUTIFUL child Conner is. He is BEAUTIFUL in more ways than one as everyone can see. My prayers are with you and May God Bless You and Your Little ANGEL! I also want to say you are a BEAUTIFUL person yourself. Little Conner is lucky to have such a wonderful loving mother as you are. Again, May God Bless Your Family.
CommentsOh my gosh! Thanks for my Birthday Wishes!!!! Yes, the kids are so sweet. Thanks Maria and Jennifer. Actually, the bipap should (WE HOPE!!!!) be covered by insurance. The connector and the battery that would be needed to make it portable would not be covered by insurance. Anything extra the kids raised would, of course, be used for the local charity or some other equipment piece not covered or "a trip to the mountain" related thing. Miss Lucie, I know you'll let us know how that goes. Conner is having a good day. I hope he will nap. Abby has gone to the park with Meredith and her girls she sits for. We are hoping to take Conner and Abby to Piper's little party at Triple Play tonight for at least an hour. We can plug up the bipap he has now in the car and then in the place once we get there. Gina, we got the package. Thanks so much! We need those pillows. I am always hunting his soft, squishy pillow to put under his legs. Now I can alternate. We love the projector and videos. New stuff is great. My creativity gets stifled from routine sometimes. I really appreciate the article Holli Roach did. It was so nice and included some important information for people to know about SMA. We love you, too, kids...you all are Conner's Angels.
CommentsThanks Becky. That means a lot to us.
CommentsBetsey- HOW DUMB CAN I FEEL???? We spent the entire afternoon playing and enjoying Abby and I did not even realize that it was your birthday. She was so well behaved and funny. The types of words she chooses to use is absolutely adorable. One time we were inside dancing to Brittney (Spears that is for those of you not into the young girls music area) and she just looked over to me and said " Merediths I love you" and my heart just about melted. She was a joy to have over to play and the girls have asked several times when we can have her over again. Let me know because she is always welcome!!! Conner did look very good today! Jessie wants to know when she can come read him some books and I told her we would check with you. I'll see him on Saturday and let me know if you need me to do anything else. love love me meredith
CommentsGood Morning, John, Betsey, Abby and Dear Conner, Today is CONNER'S DAY!!!! I'm getting things ready for an exciting day in the classroom. Conner, today you will be in the hearts and on the minds of the fourth grade students here at Blue Ridge Elementary. You are everyday. However, today is rather a special day for you. We have been planning this day for over 2 weeks. Our other CONNER's DAY, were very special also, but today is different. The students are going to bring their coveted art supplies and I think you will see lots of glitter and glue more than before. They were very excited to know that you are having better days. Several were sad to know you had such trouble with your ears lately. They understand about that. I hope you have a sunny day with lots of smiles and happy moments. The children hope one day to meet you. Yesterday, they ask if they could touch you. I told them that I had and you had the softest skin I had ever felt. That made them smile. So have a wonderful day --sing songs for your Mommy and remember--you are loved. Miss Lucie
CommentsDear John, Betsey, Abby and Conner,WHAT A DAY!!!!! We had CONNER'S DAY and boy are we tired. Betsey, we took pictures of all the activities and we will email them tonight. The kids had so much fun making cards and drawing things for Conner. And I spent a lot of time counting pennies, dimes, quarters and dollars. The kids want to go another week doing the chores and such. I am very surprised already what they have done. Take care. Check your email later on for the pictures and let me know what you think. The only thing that would have made the day any better would have been if you all had been here with us. The sun is shining and the sky is blue. I hope the same is happening for you. Conner, you were here with us throughout the entire day. You are so special to us. Much Love, Miss Lucie
CommentsThank you so much. Conner says he loves you. I think the bipap stuff is moving along. I checked today. I think we're at the point of insurance giving approval. I am pretty sure they will. Then we can get the attachments and go! I spoke to a mom today in the area who has found out recently her child has sma type 2 or 3. You don't really know until you see how the disease progresses whether its severe enough to be type 2 especially when you're not sure exactly when the onset was. As long as he's not a severe type 2, which it doesn't sound like, the child will have an excellent chance of getting treatment later. I just wonder how many type 1 babies have been born in Statesboro and died because they weren't diagnosed. The parents probably thought the babies died of SIDS and they may not know they lack the genes. I would want to know the accurate cause of death and especially if death were inevitable or very likely as opposed to accidental.
CommentsWhat precious pictures and truly the "prince of charming." I think the christmas pictures were my favorite.
CommentsThanks Lyne. Lucie, I got the pictures and they are so cute. I'll send them to Laura to put up on the web page, if that's okay. I feel horrible. Conner's oxygen tank fell over and hit him in the face. He has a bruise over his right eyebrow. Nothing ever happens to my baby because he can't get into anything. The last thing that happened like that was when his wagon tipped over and he fell out and hit his head on the driveway. My fault, too. Two things in two and a half years is okay I guess but I just hate it when anything happens. He couldn't even get his cry out. I had to put his bipap up to his nose so he could get a breath to cry. I said, "Does it feel better if Mommy kisses your face?" "UH-Huh..." My sweet baby. I got another right here too telling me I am on HER computer. Hmmmm.
CommentsOh No, Poor Conner Baby! You're right though Betsey, 2 things in 2 1/2 years is excellent! During Andrew's short little life, he had an incident with his daddy and he fell off the couch. Man, it just makes you feel HORRIBLE. Luckily, I think it scared him alot more than it hurt him. Anyway, I hope Conner's bruise heals soon as I'm sure he has already forgotten all about it since you were "kissing it and making it better". : )Love to you both, Gina
CommentsDear Betsey, I have spent some time this afternoon counting more pennies, dimes and quarters. The kids want to go till the middle of this week bringing in their money. The weather is changing and it is calling for snow. If it looks like it will be bad, I may go ahead and sent it before time. Betsey, you, John and Conner have been on mind a lot this weekend. I hope things are OK. Did you get to the fundraiser this weekend in Savannah? I remember the pictures of last year. Everyone looked so happy. Especially Connie. I remember that she didn't feel too well then also. I hope everyone is well and happy and that Conner is having a grand "Super Bowl Sunday". I hope you liked the pictures and it would be great if the kids could look at them on the sight. Thank you. Take care and remember, you are loved. Miss Lucie.
CommentsHi my little guys and big ones and all you sweet loving children and adults who keep up with Conner - I've been too busy to write, but Conner gets phone calls every day...Abby, too. Miss Lucie, your children are truly the BEST! I look forward to a day when we can meet them - especially Conner and Abby. Also, cousin Lauren, who is about their age has been told about them and what they are doing and she was very touched and wanted to know them. She is also a very loving, compassionate little girl who understands what Conner means to this world. Tomorrow, I'll be heading back down to Statesboro. We're trying to get Abby's Daddy relocated closer to her with prayers that things will go well. Love to all and kisses to Abby and Conner
CommentsWell, we enjoyed the dance. Irene went with Abby and me. We always like to watch the people drink and dance. That can be dangerous sometimes. Lucie and class, keep checking the photo page for the pictures. Laura S. is usually pretty fast about getting them up after I send them. Talk later!
CommentsPictures are up! You kids are precious!
CommentsConner's doing fine. His numbers are real good. He's been a little tired though despite good o2 sats and low pulse. What a sweet baby! Abby and Conner are doing fine. Abby's enjoying school. She loved going to the fundraiser. The minute the live auction was over and the band started, she took off to the middle of the dance floor. I'm glad she is interested in going because she'll always remember going to "Conner's dance". She'll remember being involved in an important part of his disease. Abby feels the sadness just like we do. Despite her young age (and sporatic jealousy), she knows how sick Conner is. She doesn't ask why he can't move anymore. She knows its because of the disease. What's sweet and helpful though is her knowledge of the machines now. She knows how to turn off his food pump and stop the monitor from beeping (only when we ask her to). She'll say, "Aunt Betsey, I think he needs his bi-pap now." When you look at Abby she looks like a normal four year old. But, because of her experience here with Conner, she is so much more-she reveals an evolved sense of compassion. As she has gotten a little older, she has started communicating with him more, too. I am so glad that she will be able to remember her cousin for the rest of her life. I didn't know if Conner would make it to the time when Abby would remember things but he has! And she has LOTS to remember. Okay, enough of that. Talk later. Hope the kids are doing good today! We are thinking of you always!
CommentsHi. I hope everyone is having a good day. Today the weather is looking real bad and the kids know that snow is just around the corner. After midnight we have been told. Anyway --we have packed the box this morning and I will be going to the bank after school today to mail you a check. You may be surprised what a little snack and chore money may add up to be. I'll post later the amount. We are doing lots of math this morning and counting the quarters, dimes and pennies are all adding up. The kids send their love and say they hope Conner has a great day. Love, Miss Lucie
CommentsDear John, Betsey, and Conner, The day has been every exciting. The students have helped me pack the Valentines and some "extra surprises" for you all. There will be Valentine cards for Conner and also Miss Abby. In the box you will find a few tasty sweets to nibble while you are looking at the cards. There is also a special card addressed to John, Betsey, and Conner. In this card you will find a check for the amount of $415.60. I know !!!! I couldn't help from smiling almost all day. The kids are so very proud. There was just a "little" padding done by a friend of mine and myself. But the kids did just about all of the contributions to the Gatorade jar. Every morning they would ask, "Where's Conner's jar?". You must know these students did this only for 12 school days. Well, what do you think? Aren't they amazing?? I guess you had better be looking for the Fed-X man within the next day or so. Let me know when he arrives. Prince Conner, you have brought so much joy to all of these children. We hope you enjoy the cards and the love that is being sent to you. Beware, St Pat's Day is around the corner and it sure looks like green will take the place of all these red and pink Valentines. Much Love, Miss Lucie
Commentsbetsy it was so nice to talk to you today. i had no idea that you were going through such a terrible thing. i know in my heart that if anyone can make a little boy feel loved, you can. i know from working with you that you have a heart as big as all outdoors. i just wish there was something i could do for you and connor. be assured though you both will always be in my prayers. if either of you need anything at any time please e mail me,,love, gene
CommentsI don't know what to say...give me 'til the morning. Gene, it was good to see you, too. I am so glad you posted a message. I thought it might be 5 more years again til I heard from you.
CommentsWOW! I am so impressed with Miss Lucie's children. There just is no way to account for the love and compassion that children can generate. You should all be feeling very warm inside - even with this freezing weather outside. You are remarkable young people who will grow into wonderful adults to love and cherish you own children some day. I hope your parents are aware of what little treasures they are raising. Thank you for being who you are...good, loving people with a great leader in Miss Lucie. I'm sure you'll always remember Conner and when you do you'll remember Miss Lucie who brought him to you.
CommentsConner says, "Thank You!" We will make sure he gets up there to see you kids very soon. Definately before the end of the school year. I am thinking the beginning of March. We'll get all the necessary things to make his mobility easier and we'll be on our way. Gotta go!
CommentsConner is doing fine this morning. I am sad, though. Abby is gone. I don't know if she's coming back. She was so happy to see her mother, (unexpectedly). I feel very anxious.
CommentsConner, you give your Mommy lots of kisses. She needs much love and attention right now, as always. The hardest thing about loving is having to let go, especially when you know the time is not right. We all will be praying that Abby's mom will do the right thing and bring her back to her school and her friends and her secure home until she is able to provide those things for her.
CommentsBetsey, I hate that anxious feeling. That pit of your stomach butterfly feeling. I pray for God to remove it from you and to touch your life and Abby's with his divine love and guidance. Gina
Commentsi know it hasn't been five years yet but conner and you were on my mind so i thought i'd check in again......give conner a hug for me and let me know if y'all need anything......love gene
CommentsWell, I guess we're all trying to stay busy so we don't have to think about the sad things right now. I've been working every day. The mall was pretty busy today...everyone buying gifts for valentine's day. Conner, you stay well and happy and we'll keep praying for our little girl to join us again soon. Give mommy, daddy and Uncle Jeff kisses and hugs. Love you all, Grammy
CommentsBetsey, I'm so sorry. Hopefully you will have good news soon. I hope Conner is well and happy. Take care of yourself. We will keep praying. Much Love, Miss Lucie
CommentsI got a message from Abby saying, "Leave a message....I love you!" What a sweet baby. I guess I'll get to talk to her tomorrow. Conner baby has two more teeth!! I thought his two front teeth were coming in but the two side bottom teeth poked through today. He has cried, laughed and talked today. I rented, Atlantis, tonight for Conner. I thought he'd like it and of course he did. I'd say, "Atlan-TIS" and he'd say, "AAA-ah-Eh." That was good enough for me. "You said it, Conner!!!" He said it again and again. We called Daddy and he said it more. He sees the preview at the beginning of one of his other movies and it seemed like he'd like it. Anyway, he's had a good day. As long as we treat the tooth pain. As far as me, Jeff and I got my room painted this weekend. I've been wanting to paint it FOREVER. It was my birthday present from mom. Thanks. Good night, I'm going to eat an ice cream sandwich, read People, put in a movie and go to sleep.
CommentsIt's amazing how little it takes to keep us happy these days. I have my first day off today and though it won't be totally fun...have to drive to Northside hospital area for doctor's visit...I will get to clean house (a little) and cook dinner for Gary for the first time in days. I saw Lauren and Drew briefly yesterday and that got me through a rather tiring day on my feet. Conner, boy, you are the MAN! You can say "Atlantis" and you can get mommy to drop everything and be by your side, what a guy! I love you and miss you, my little buddy. Hope we will have our little girl back soon.
CommentsLucie and class! We got the Valentines today!! I am so impressed.They are so cute and GOOD! Conner actually tasted some of the chocolate. I bit into the rocher things and put some of the chocolate on my finger and put it on his tongue. I asked if he could taste it, and he said, "uh-huh." I could certainly taste it. I can't wait to give Abby all of her Valentines. They are precious and I just can't believe all the work you obviously all put into them. Conner smiled as I read them to him. He even let me turn off the tv to read them. What a sweetie. He's had a pretty good day. He's been running a little fever in the evenings but I think that's his teeth. His mood's been good and he's been extra cute and sweet. Yesterday he said, "My." I don't know if he was trying to say, momma or Milo (he was watching Atlantis). But it was clear and he hasn't said it since. The "m" sound is kinda hard for him so I was surprised when I heard it. Okay, I'm going to sleep.
CommentsDear John and Betsye: We saw your recent article in the paper. It was very interesting. We went to your website and read up on what you all have gone thru. Of course, we like so many have followed your family's plight. We feel sure very few can appreciate what you have experienced. Your little family have truly been in our prayers the last two years. We will continue to pray that God will give each of you the strength to do what is necessary to keep Conner comfortable each day. Phillipians 4:13 says "I can do all things thru Christ Jesus who strengthens me." You all can do this! Blessings upon you. Bird and Betty Hodges
CommentsHi Conner and Mommy, I hope you are both having an extra special, happy, fun day today. Happy 31 month Birthday big guy. Tomorrow is Valentine's Day- a day for sweets, love, hugs, & kisses and I can't think of two people who deserve all of that more than you and Mommy. You are always in my thoughts- please call me if you need anything at all. Happy Birthday and Happy Valentine's Day!!!
CommentsHi Conner & Betsey: HAPPY VALENTINE'S DAY!!!!(a little early) We will be thinking of you both. Thoughts and prayers are with you so,so much. Many warm thoughts, Love Gina
CommentsHAPPY VALENTINE'S Day!!!! To my sweet little man...you are my little cupid - so full of love and acceptance. Please give Mommy, Daddy, and Uncle Jeff some special good love. They need to have their hearts filled to overflowing. Sometimes, we big people forget what's really important in life and we let petty, unimportant things get in the way of just plain loving and knowing that we are loved and things will somehow work out the way they are supposed to...just keep on trying and believing in goodness. I love you all so very much.
CommentsNow I remember where I got my idealism from. That's a good thing. When I was 20 everyone older said I'd lose it, but I'm 31 and I haven't. I'm more cynical but much less than the larger population. I still think anything is possible, for me, anyway.
Regardless of all that, thank you Mrs. Hodges for writing on Conner's page. I appreciate your kindness and encouragement! And thanks Aunt Reea and Gina. We don't go too long without thinking of all of you. I guess when I'm writing on the page I think of anyone who has ever told me he/she has checked it or anyone who has written on it. Tomorrow is Valentine's Day. I got Conner a Valentine Rolie Polie Olie video and I can't think of anything else to get him. He just doesn't demand material things-mainly attention. John is going to stay with Conner while I go to eat dinner with a couple of friends tomorrow night. Lots of other stuff is going on with Conner's "business"-the business of taking care of Conner-but I'll wait on reporting those things. I hope we can get that bipap soon! I guess I'll check back with the equipment company. I also hope we can get our nursing situation worked out. The state has a hard time giving good, appropriate, helpful info. So we got it from somewhere else, maybe. We'll see. As far as Abby...I don't know. I talked to her yesterday. Her mom called and said Abby wanted to talk to me. She told me she learned to do a back hand spring. Good girl! That's hard. I'm thinking with a spot....but anyway, I loved hearing her voice. She's my niece, not MY daughter. I don't confuse that...but I do feel responsible for her absolute well-being just as any adult looking after any child. Conner is calling. Good night.
CommentsDear Conner, Miss Betsey, and Mr. John, HAPPY VALENTINE DAY !!! We are going to have a party today with lots of sweets. We are going to play games most of the day, also. (These are learning games like Math BINGO and things like that). We hope you liked the cards and the candy. Conner, we wish you were here to play. Maybe you can play games today with your Mommy and Daddy. Have a smiling and sunshiney day.
CommentsHappy Valentine's Day to you, too! I always enjoyed Valentine's Day at school. It was a fun day. I hope you all had a good time. Conner is doing fine today. He's a little tired. I have had him without nurses the last two nights with a lot of help from John and Irene, thank goodness. It's not bad. I kinda like the privacy, actually. I'm not sure when we'll have the next night nurse. Gotta go, Conner is beeping a lot with his treatment. Let me go check. Oh, I heard from Abby and her mother and Abby is not coming back. She will be living in Kentucky indefinately. She won't be coming back here due to an "attachment" between Abby and me that was evidently not to her mother's satisfaction.
CommentsHey Betsey - I hope yall had a wonderful Valentines Day!!!!! I'm so sorry about Abby. I'll keep yall in my prayers and I do hope things work out. Just hang in there like you always do. You and Conner have a good day and I'll be in touch. I check in on yall just about every day just to see how things are going. Take care of yourself and that sweet baby. Yall are in my thoughts and prayers - Michelle
CommentsHey Betsey, I hope things went well after I left today. Let me know what you think. Deborah
CommentsWhy can't everyone just get along? What a statement! I guess life wasn't meant to be simple and uncomplicated. It would be so easy if everyone could think of what's best for children and put aside selfishness and self gratification. Conner has parents who put him first. He is very fortunate. Not all children have that. I believe time will take care of alot of things, but in the meantime, little Abby needs our love and support, no matter where she is. It's just so hard to let her know how we feel when we can't even talk to her or have no hope of seeing her unless we are given permission by someone who doesn't particularly value our love of Abby. Betsey, you are such a good mom and aunt, sister and daughter. Abby learned alot about loving from you and she's old enough to remember how we feel about her. I hope she'll never be a bitter, selfish person, regardless of who she's with. Conner, you sang so good for me last night. What a guy! I love you, buddy.
CommentsBetsey, I agree with your Mother. You were just what Abby needed. She really responded to your kindness, love and guidance. Your influence on her life will not be lost. How's Conner today? Give him bunny nibbles from me. May your day be filled with happiness, joy and peace. Much love, Miss Lucie
CommentsConner's doing okay, I guess. He woke up at 5:30 am and really hasn't been back to sleep. His pulse is up some and that's not good. His O2 is good so it obviously is not any kind of lung infection. I would be able to pick up on that before his pulse went up anyway. His gums look pretty bad and he had a little blood crusted around the inside of his ear. The usual suspects. I don't think his ears are infected, just draining stuff. I was up with him last night. John had him at his house the night before. I asked if he had a good time at daddy's, "uh-HUH..." Did you see grandaddy?, "uh-HUH" and show him your teeth? "uh-huh" He pulls his lips up to show you his teeth. Very cute. Kristiann, I got your sweet Valentine in the mail. Thank you so much. It is sitting on my dresser and it means so much to see a note with that youthful handwriting. I appreciate your thoughts and efforts-all of you. You are special kids and I feel lucky that my son, even though he's ill, has caught your attention. As far as Abby and her mom...the more I think about the reasons for her mother taking her out of the state, I get so angry(understated.) I am telling you that I am far from perfect, I can be selfish like anybody else, BUT!!! Abby's mother-and Suzy, if you're reading this, take notes-is the MOST selfish person I have every met. If that child had been put first from the time she was born, she would have had one home, regular visits with family, all of medical needs met-ON TIME!!!, and a sense of security. However, this child tells people she doesn't have a home. And for once, I told her that no matter what she would always have a home with me. Whether she is with me or not, she will always have a room, a closet, a bed at my house no matter where I am. And THAT, was an unhealthy attachment, according to her mother. Her mother thinks, "Her aunt is not the one that is supposed to be providing her with those things. I am." Well, I couldn't agree more-but SHE DOESN't! So, Abby once again will face having no room of her own, no consistency, more change but this time farther away than she's ever been. Much harder for us to get to her to make her feel secure. Far away from the only family that has ever known her or cared for her-with strangers and a boyfriend of Suzy's that she has called the police on because he freaks out in front of Abby. I heard Abby screaming and crying in the background the last time they all lived together happily ever after. The thought of her living with her mother who has no true sense of what is real and what is imagined and a boyfriend that has a record of domestic violence (whether he admits it or not) and mix in addiction...this makes me want to throw up! And there is nothing I can do about it. I tried but we didn't get anything done fast enough and now its too late. Nauseating and sad. My message to Abby will always be the same: No matter where you are, Abby, or where I am, no matter how far away...no matter what you do or how you feel about yourself, good or bad...you will always have a room at my house and I will always be here for you. Abby says, "I like it when you say that, Aunt Betsey. I wish I could say it just like you."
CommentsWell, I can't even respond to that. My heart is full of pain and fear. The sad thing is that Suzy will not even recognize Abby's needs. Abby has learned to be very quiet in her saddness and keep the longing and need to herself. She is learning not to expect too much and not to want too much. She will just try to please everyone around her so they won't be unhappy. She longs for happiness, but it is so fleeting for her. She will never come first with Suzy. Suzy's wants and needs will always come ahead of everyone elses. I love you, my little sunshine. And you, too, Betsey, and Conner, boy.
CommentsWow Betsey! I had no idea that you guys were going through all that! I will be asking the Lord to protect Abby. Poor thing!! It breaks my heart. You would never know all that from looking at the happy pictures on Conner's website. God Bless, Shelley
CommentsConner is sleeping right now and I have a moment to write a quick note. He is doing pretty good. He likes showing his teeth to anyone that will look. I guess that is how he is waving to people now-instead, its putting his lip up-"hey!look at my teeth!" Shelley, thanks for thinking of us. I don't usually-and I didn't want to- use this site to say or promote anything real negative about anyone or anything but sometimes a situation just calls for it. This girl is one of a kind and I suppressed for a long time and Abby can't read yet. Enough of that, I'll report more on Conner later in the day. He's bound to do something really cute.
CommentsGuess I ought to apologize for vending on this site, also. I actually have always liked Suzy and felt that she needs protecting also. However, Abby comes first and meeting her needs comes first with me and the entire family. As hard as I tried, I could never meet all of Suzy's needs and those who are trying now will realize that some day. Conner, show me your teeth, babe! Have a happy day. I'm off to work.
CommentsDear Betsey, I just motified your entry for the class. Of course the first thing they wanted to know was, "Did Abby get her Valentine cards before she left?" Lots of my kids know about being moved without them having a say so in their lives. Several have said that they would have liked to have stayed where they were happy and had stability and were loved. Several understand what Abby is going through. Betsey, their first thoughts were about you and your feelings. They want you and your family to be happy. They also said they knew Conner would miss Abby lots. They said a prayer for Abby this morning at our moment of silence. One boy said he hoped she was safe. Another said she hoped she had her favorite things with her. (That child has been moved more that I can count in the last few years.) Betsey, just remember the song. "Jesus loves the little children"....they are precious in his sight..." Take care of yourself. I know these days are rough. Just know the class is thinking of you and sending happiness and sweet thoughts your way. Please call if you need to talk. We love you. Miss Lucie
CommentsBetsey... my heart is hurting for ABBY and for you!!! I know how it is to be where you are with your struggles with your niece's other parent and how difficult these situations are for aunts like us.(who love above and beyond the call of aunthood) If you have an address for where Abbey is than I would LOVE to have Sparkles send her a magical package.?.? How is Conner's pulse?? Have you had any night nurses lately? I am more than willing to come over and stay with him a couple hours in the early morning or latelate night so that you can sleep! If I know a day or so a head than I can just change my sleep schedule a little and that would be no problem. I would just use that as studying time if he was sleeping. I didn't make it by this week - I feel bad but I have been over my head in school and work. Call me if I can help you with the night schedule any!!! Tell Conner - Sparkles is sending her love to him and Abby via magical waves. love love meredith
CommentsSo nice!!! Meredith, thanks but we're getting that nursing stuff worked out!!!! Come by when you can. You are so sweet for offering. We are in the middle of making a big change. I am crossing my fingers that a new agency is going to take over. Deborah, in all her hard work!!!!!, finally hooked us up with an agency that has a certificate of need for a more appropriate program-which Deborah and I have been inquiring about since the day Conner qualified for a nursing program. Deborah and I have been asking the state, whoever-anyone, about how to get Conner into the exceptional child program and we got no answers. Now, we are finally getting him (and me) the right program which will eliminate the VERYVERYVERY stressful quarterly review that threatens my mental health every three months. That is a very good thing. Its always something but I guess everybody's life is that way. I'm fine though.Conner's doing okay. He's a little off but I don't think its anything serious. I think his sinus(es) may be bothering him or draining now. What do I know? Whatever...I'm tired. I will find out Abby's address Meredith. I want to send her a package, too. She must know she is loved and thought about. She sure loves Sparkles. I hope I thwarted any crazy thoughts she had about you being Sparkles, Meredith. I don't think I've laughed that hard in a long time when she asked if I thought ("crazy thought, Aunt Betsey") you MAY BE Sparkles the Clown. Hmmmmmm. Ya think, Abby? No! Then she said, "OH, Aunt Betsey...Don't tell anyone I said that." Sweet thing. Conner has been so cute, too. If I talk about him at all in front of him, he mimicks whatever it is I'm doing by copying my tone. He has started telling us when to switch out his face diapers (that get wet with his spit). About every 15 min.-"uh-uh-uh-uh-uuuuuuhhhhhhhhhh!" Miss Lucie, did y'all get the Valentines that Abby and Conner sent and the article? If not, it should be there very soon. I sent it last Wed. I think. If not, I'll send the article again, at least. The kids parents should get copies! They are so sweet for thinking about us. I wish I could tell them that we will be just fine. I hate for them to waste their precious energy worrying about me. I'm tougher than my complaining reveals. My life's not all business. I try to escape a little and relax. I've always mixed a good dose of escape with my responsibilities and reality. My friends'll attest to that. Anyway, tomorrow is business, so I'm off to do laundry and make my list. Deborah, you'd be proud of me...I'm making progress with the SSI. I actually went to Sav. today to Memorial and got the info. from medical records that I needed for the application. I'll get them from E. GA. tomorrow and get that application back in. They didn't initially deny it this time like they did the last two times. My single status puts me in a category of poorness that they can't deny! Right? Well, I appreciate all the support and help I've received so far. I wouldn't be able to have any relaxing, escaping moments if it weren't for all the resources I have available to me-including John. He's a good daddy to Conner and I appreciate that! I am writing so much. I better go. I guess I want the kids to know that life goes on and we'll be fine! Everybody has issues!!!!!!
CommentsHey Betsey, I talked to the nursing company today and they have already sent everything off. I am glad you are doing the SSI!!!!!!!!! Deborah
CommentsWell, I have Lauren and Drew with me and my house, is a mess, the kitchen is full of snacks, Lauren is eating Oreo cereal. We have plenty of strawberry milk and chocolate milk and coffee ice cream. Cartoons are on TV. Drew is still asleep. It's a lovely day and we'll have fun, I'm sure. We sure would like to have Abby here, too. Well, for that matter, we'd like to have Conner here, but we have learned that we don't always get what we want. So we'll do the best we can with what we have. Drew and I had a conversation yesterday about Conner. He said "Conner can't get up, he can't play football" then he said "He'll get better". Followed by, "Aunt Betsey can play football". Out of the mouths of sweet little boys! Well, my sweet little Conner, you have a good video viewing day and enjoy Mommy's love and attention. Grammy may try to get down there Monday to see you all. I love you.
CommentsConner is such a cutie pie. Yesterday morning he woke up right when the nurse was leaving so I brought him in my room. I tried to take him in there without his bipap but he just couldn't handle it so I hooked him up in my bed and he watched all the tv shows of the morning. I was able to get a little more rest, just switching his face things every few minutes and turning him once. He loved laying in mommy's bed watching tv. When it was time to go to his room to get his Tx and bath he said, "aw-uh, aw-uh" NOOOOO. He didn't want to leave. I am glad he loves his mommy time. I love my son time, too. I love snuggling with my baby. Since Drew and Conner are both the same age and Drew notices that Conner doesn't get up or "play football," I thought Conner may be wondering about that, too. So, I was trying to talk to Conner or ask Conner about his lying down and other kids running around. It was hard because after I asked him, "Do you want to ask mommy why Conner lays down all the time?" "Do you want to ask mommy why you don't run around like Abby?" He said, "uh-huh." I had no explanation and I cried all over him. Pretty irresponsible of me to inquire then cry all over him when he wanted an answer. At that moment, no answer seemed like it would suffice...none of the angel talk, none of the "everything happens for a reason" or "God thinks your special." That all seemed like crap at that moment. I never thought he'd live to be old enough to have to explain anything. I told him I was crying because I was sad that he couldn't run or walk or sit up like the other kids but that he would be able to fly one day and NOBODY can do that. Did he want to fly? "uh-huh" I told him that he would have to teach everyone else how to do that. I told him that he was going to be able to see special people like Grandmommy Connie and Granddaddy Bill and lots of other people who'll fly around with him. (Sounds scary) That all sounds strange but it was what worked for him at that moment. I guess as he gets older, I can explain his illness in other ways. But saying, "Well honey, you have SMA type 1 and your anterior horn cells are dying..." didn't seem appropriate. But actually I did say something like that, too. And I said that we all love him laying down. I told him I loved it that he layed down all the time because I could snuggle with him real close and I wouldn't want him any other way!! That was a lie. I lied. I cried all day yesterday!!! I cried when Conner turned blue first thing in the morning when I brought him in my room. I cried when I saw the survivor of the world trade center thing talking about his recovery. And I cried when they said the journalist was dead. And then talking to Conner. HOW SAD! But I went and had dinner and a movie while John babysat. So, I recovered from the sad day. And Conner did pretty good yesterday, too. He has been singing so loud and cute! And I know he enjoyed spending the manly time with his daddy last night. Oh well, report more later.
CommentsI talked to a lady who I think is a child psychologist and asked her about what to say to Conner. She said I should give Conner's disease a funny kind of name (and she gave me other good suggestions.) I told her I call him my "floppy baby" and we decided by calling it "the floppy disease" it would be something he'd understand. Miss Lucie and class...your smile project worked. Your pictures were so incredibly sweet. How can I ever feel sad when I know I have you all right there to cheer me up? You kids are so great! You have no idea how much your pictures and efforts to raise the money for Conner's machine mean to us. Your efforts are not lost. I brag about you all the time. I spoke to Abby and she said she misses us. I told her I had a package for her with the Valentines you all made her and the little stuffed animal (Miss Lucie). She said, "How NICE!" Thanks sweeties! We are waiting on the insurance company's response with the bipap. All the paperwork is in so.....when we get it, we will take the money that you all raised and go get the attachments that will make it portable. And THEN!!! we will get Conner to his class so he can meet his sweet angels. We are just w-a-i-t-i-n-g......... Conner's doing fine today. He slept very well last night. He is bright eyed this morning. I'm going to hang out with him at 12 when the nurse leaves. In the meantime, I have an hour and a half to go drink coffee and lounge. So, I'm off!
CommentsNormal day, sort of. Conner had a fever but motrin brought it down. I don't know. He is enjoying singing in a microphone and playing a keyboard. Its pretty cute. Precious, precious baby!
CommentsI'm here at Conner's house. Everyone is asleep except Miss Irene and me. Conner was very sweet yesterday and last night. He's so precious and I love to kiss his little face and neck and make him laugh by jumping around like a crazy person. He thinks his grammy is a nutty clown...not as good as Sparkles, but nutty all the same. I'll be going back to my house today. We just get short visits, but they are better than nothing. Love to all you guys out there "keeping up with the Riggs".
CommentsI'm here at Conner's house. Everyone is asleep except Miss Irene and me. Conner was very sweet yesterday and last night. He's so precious and I love to kiss his little face and neck and make him laugh by jumping around like a crazy person. He thinks his grammy is a nutty clown...not as good as Sparkles, but nutty all the same. I'll be going back to my house today. We just get short visits, but they are better than nothing. Love to all you guys out there "keeping up with the Riggs".
CommentsGood morning !! We are out of school today. Yes, SNOW !! I hope things are going well for Conner today. Betsey, take care of yourself. The kids still ask about each of you every day and are anxious to start on another art project for Conner's Day. We will start on it very soon, I'm sure. Now it's time to get warm. It's 17 degrees now. That seems real cold for North Georgia. Give hugs to all and bunny nibbles to Conner. Remember,you are loved. Miss Lucie
CommentsHi Betsey & Conner, Just checking in to let you know that I am thinking about the both of you. I hope you are doing okay and that Conner has enjoyed his visit with his Grammy. Grandparents are very special and I can tell how much Conner's Grammy loves him by her writing. I know Conner loves his Grammy too. It is very cold outside. This time of year stinks. There are times when I'm at work occupied with something, and then it hits me like a ton of bricks that Booper is not going to be home when I get there. You'd think I'd know...it's been over a year now. I guess I do "know", it just hurts to know. I am thankful that death may separate us physically, but spiritually he is very much with me. If it weren't for these strong feelings of love, the strong feelings that although he is not here our love transcends all the boundaries, then I don't know how I would survive the day to day But I do know our love is limitless, and it helps me to live my life. Okay Betsey & Conner, sorry to unload on you. You guys enjoy each other's company. Love & thoughts are with you as always, Gina
CommentsThank you so much Gina for sharing your feelings. You need to unload and I need to hear how you feel. I need to know that it is possible to go on despite the instense hurt and missing. I think about losing Conner E-V-E-R-Y-D-A-Y and I am very afraid about whether or not it will be painful or uncomfortable for him-actually passing- and I think I'll miss his skin and smell and hair and lips and ears and hands and cute little huggable butt. So I rub his skin and take a deep breath and smell his smell and comb his hair with my fingers and kiss his lips and trace his ears and hold his hand and give his hiney a big hug. That's the routine. Gina, I need to know that's its possible to lose all that. If you say I can feel his spirit, I believe you and at least lessons the feel a little. For you, I will give Conner all the love I can while he's here and tell him to tell a cute little guy named Booper, Hi!, one day. I know it sounds like I've given up on Conner but if you know Conner you know the miracle we wanted has already been granted. He hangs on with a smile and a song! Speaking of my cute little thing, we took him to Belinda's for dinner last night-which we enjoyed-Thanks Belinda! I don't think he felt that well. I think he was constipated and tired. We fixed that with some Milk of Magnesia when he got home. He's such a sweetie. Irene and I decided that if all we had to do was just take care of Conner, himself, that would be nothing. Its taking care of all of the things he needs and dealing with the people (not necessarily bad people just calling and miscommunication) and dealing with all the other life issues that we have no control over that make caring for Conner more difficult. I am lucky that I have help. I am lucky that I am able to build my life back again. One day I wrote on here that I felt like I was suffocating because I couldn't get out or do anything or work because of all that was going on in our lives. However, I have managed to reconstruct my life in a way that has opened up-well, a life. I actually have my life now. I have reliable resources, I have other things to focus on, and I am enjoying Conner and getting all of his needs cared for at the same time. If only I had my Abby baby to care for too, I'd be extra content. I hope she is being cared for adequately. I am keeping up with that as closely as I can. I feel obligated as her aunt to make sure she has a clean, safe, calm environment. Anyway, I've written enough. Conner's still asleep this morning. I hope he can get lots of sleep to make up for his drowsy, contipation problem from last night. He's going to stay at Daddy's Sat. night. He'll probably do that like every other Sat. Conner loves it and I know his Daddy and Granddaddy do, too. Okay, good-bye!
CommentsThanks Deborah. What would I do without you? I'm too upset to even explain. The state is recommending 8 hours in the new program which we were told would be pretty much non-negotiable following the recommendation that was made today. That's encouraging(sarcastic). In other words, I was just told today to forget about getting a job to help pay bills to help keep the house, throw the social life away that took you two and half depressed, guilt ridden years to build up, forget about any appt.'s during the day without finding and paying someone to come take care of Conner, forget about anything other than going back to my caretaking prison of depression(Conner was the light-don't get me wrong). I thought I had been a good caretaker by accessing resources and finding relief and getting sleep. The state on the other hand views my life as less important than you people who have healthy children. Did you know that people who have severely sick children in the state of Georgia are obligated to stay home, not work and view the caretaking of the child as "their job"? Conner is my job 24/7 and a hard one at that. The hours I spend with him are bittersweet but like I said before you must take into consideration the work it takes outside of the home to maintain his care. Part of that was to get a job, maintain my sanity, feel somewhat like a part of society and give him the best life that I can by being a healthy, rested, social, employed person. But no! The state I worked for for 10 years and lived in for 31 and paid taxes in since I was 15 feels that those with severely sick children are obligated to take the bare minimum help they are gracing us with and shut up. Besides, they don't HAVE to do anything for us. Did you hear that part Deborah? Why did I pay taxes then? I WANT to work!!!!!! They don't want me to work. They want me homeless? They want me insane? That makes sense. Conner deserves more than being looked at as a burden on his society. I just want to run a normal household but they are making it impossible for me to do that and I am so mad. I am so upset and I feel like there is nothing I can do about it but just face the onset of insanity. But I won't, of course.
CommentsI didn't even write that I was referring to the number of nursing hours we receive.
CommentsBetsey, It makes me ill to read about your plights with the state. It's just not fair and I'm sorry. I don't understand it. Obviously, I don't know all the details but I get the big picture. Don't ever give up the fight to "win" what is rightfully yours - good care for Conner and good care for yourself. You spend years paying insurance costs and then when the unthinkable happens - exactly what insurance was invented for - you don't get the eggs you've put into the basket. It makes no sense. I know you won't take this lying down (thank God)! Keep searching and you'll reach someone with a conscience and someone who can help you!! Can you sense my anger here?
CommentsDear Betsey, This is another day. There is nothing I can do to make things better for you except to let you know there are prayers being said for each of you. I do hope that the lives of those people could be touched in some way that their hearts would be tendered to understanding. Some people never change until it touches their own lives. If only they could meet Conner and see those beautiful eyes and that wonderful smile--I know many would rush to help. Keep your head up. You and John are doing a wonderful job with Conner. Please know each of you are on our minds and in our hearts daily. You are loved. Miss Lucie
CommentsI wish I could say that the lady from the state was "just doing her job" but that isn't true. She went a little too far when she began to give Betsey suggestions on how she should structure her life to make the 8 hours they were "bestowing" on her feasible. And the hardest part to understand is that she did see Conner. What kind of heart can see that angel and think that he doesn't need constant attention - medical and emotional. She actually felt that his bi-pap was not a necessity...or as she put it not considered a vent. He is as dependant on the bi-pap as if he were intubated. Take it away...he dies. But this lady knows more than we do...she knows how to "save the taxpayers money". Well, I'm a taxpayer and I say find another way to save my money. One very good way would be for the state to FIRE her.
CommentsBetsey - I can't imagine how angry you must be right now. If mom would not have had High Hope to send Eddie to (my brother that was severely handicapped) and my grandmother that lived here that was like our second mother to help her out she would have probably gone in sane. You need time for yourself too. That is so important. Listen I know I haven't helped out in ANY way at all and I know Conner has NO IDEA who I am but I could give you a call and see about coming over sometime and getting to know Conner and I would be more than happy to help out some (I would probably have to bring the girls with me). I do work from 7:30 - 4:00 and then I have Blake,Kaylie and Allie but late afternoon or even some nights if I could help out I will be willing to do that for you. I'll give you a call sometime soon and remember we are all praying for both of you daily. Love - Michelle
CommentsHey Betsey, I felt so much better after talking to the other nursing agency. She made me feel like we don't have to worry about the state, she will take care of everything.I forgot to tell you she is coming to town this weekend so she might be calling you. Im not sure. She is coming to see another child too. She really wanted me to reassure you. Love Deborah
CommentsHey Betsey, I haven't cliked on in a long time, but Michelle told me today of you recent "news" from the State Dept so I thought I would check out what was going on. I understand how you feel. Things just aren't as important to the people who aren't experiencing the constant pain that you have to go through if they haven't been there. I think of you and Conner and John so much. I keep up with progress through Sonny. I hope to get down there soon to visit. Don't give up. Maybe things will work out with the State. Can I do anything to help you? Please let me know. I love you all,Barbara
CommentsHey again, I don,t know how my name came out spelled wrong because it wasn't that way on my screen. Anyway, the other e-mail was from me. Talk to you later. Barbara
CommentsThank you Michelle and Barbara-and I know there are so many people who think of us and care. That's makes it so much easier to deal with this junk. Just the fact that I know if the very worst happens, there are lots of people who are out there who will help emotionally or get Conner what he needs. I know that. And how do I say tell you thank you enough? I just have a very independent streak in me and this whole lifestyle just goes against my nature. I am supposed to be the helper, not the helped. I know we will get this worked out. My brother and Deborah are probably the two who are in the best positions to help with the nursing problem. And they have both already put my mind at ease. I went to Wal-mart today and got Conner some stuff. I got him some slime stuff and floam and finger paints and the movie Atlantis(tax return came in!). I can't figure out if he likes it or not though. I think he does. I am getting very confused about his speech though. I think he has several different ways to give an affirmative and negative and its confusing me. Of course Belinda gives me such common sense solutions! That's why I ask her. She's the professional. Oh well, I am going to Tybee tomorrow and I am going to stay until late Sun. So, whether its cold and rainy or sunny-I don't care. I am going to relax and enjoy myself. Granddaddy is here visiting right now and I know that makes my baby very happy! Let me go check on them........
CommentsEnjoy Tybee and think of your old mom. The beach...the dream I have forsaken, but still remember. That kind of talk will make me cry and it's already raining buckets outside...I don't need to add to it, so...happier things. Gary and I are going to babysit little Emma tonight. She's a sweetie and loves her grandaddy like all the others. Give big hugs to Conner for me and stand facing the ocean send out some good vibes for me. I miss the freedom of standing there in wonder. The beach is the oposite of claustrophobia. I love you, Mom
CommentsBetsey, You are the helper! You're the one person who really sees Conner is taken care of as BEST as he possibly can! If you didn't do ALL that you do, would someone else do it as well? I'd wager not. You are the ultimate helper, and it's Conner who is the helped. You are his facilitator, his mommy, his life! He loves you so much and even though he may not be able to fully express it, I know he is so thankful for all you do for him! I know you know all this, but I wanted to say it anyway. Be encouraged!! Love, Shelley
CommentsBetsey, My goodness !! There you go again having a sinking spell. Please take heart. You are doing a wonderful job. There are lots of us that have that independent streak. It's something to be proud of. You shouldn't feel so bad about needing a break either. All of us out here understand. Please don't feel you have to defend that need. We all have to stand back and re-group. The beach---oh my !! What a great place to renew yourself. Connie and I use to set on the deck and sometimes not even talk. It's so peaceful even inside if the weather is not too good. I know Conner will miss you but you know John will keep him busy. As we know, he's such a good Daddy. Take care breath deeply and try to relax. You are loved. Miss Lucie
CommentsHi ya'll - Hope the beach renewed Mommy and I hope Daddy and Grandaddy had fun with Conner. I talked to Abby last night and I'm going to get her for a short visit on March 17. It will be very hard to take her back, but I have to concentrate on the fact that we will have some time with her. She sounds very homesick for her family. She said she wanted to see Lauren and everyone. She doesn't want to be "all alone". I'll keep praying that the time will come when we can have her again in a stable and happy atmosphere...not that she doesn't sound happy and cared for...she does. She's just a little girl and she doesn't really know what goes into taking care of a child. Oh well, I'm looking forward to the March 17 - it'll be a Happy St. Patrick's Day!
CommentsAh...nice little vacation. I really enjoyed my short beach visit. Conner's got something going on though. He must have had some kind of infection or something. He's not having a fever anymore but he is really draining out some pretty gross stuff and blood. He was doing okay and very happy to go to Daddy's Sat. afternoon. When we got Conner over there and set up in the den he was squealing and talking non-stop...so excited to be there! I was really missing him by last night. I taught him how to say he was two last night. I ask him how old he is and he moves his fingers twice. And we practiced moving them once for "no" and twice for "yes." He would get it then just keep doing it over and over. I think he did that because I would grab his hand and laugh at him when he would keep going instead of moving just once or twice. He's so funny and cute and has a silly little sense of humor. I can't wait for him wake up so I can go kiss all over his tummy and face.
CommentsHappy Belated Birthday Miss Lucie! I'm sorry I forgot to write it last week. I hope you had a good birthday. Thanks for all the encouragement.
CommentsBetsey- my heart hurts so much for ya'll! It just hurts. I'm just sitting here with tears running down my cheeks wishing that you didn't have to go through all you do and that Conner didn't have to struggle as much as he does. I see sick patients almost everyday and I feel for them.(sincerely- I do) But when I think of Conner, my heart just cries for him, I just wish that the State didn't put such a difficult track of hurdles for parents of special needs children to jump. Not that for one minute do I question or second guess the thought of Betsey Rigg's jumping them but I just wish they didn't make it so difficult. I have had so much on my plate this quarter that I have not had the time to come and hang with Conner like I wish I had. But I am off on Thursday and Friday. So let me know which afternoon or evening I can come over. I'll come as Meredith or I can come as Sparkles... and I'll just hang out. Call me or e-mail me. I cried when I read about Abby. I know how confusing all this adult stuff must be because my Madisyne is having a pretty tough time with all the adult stuff too. If we the adults could just live with a child's simplicity and innocence then the world would be so much better off. Bets- I'm here for anything I can do. Our Spring Break is coming up really soon and one week I have like four days in a row off. So please let me help you. love love me meredith
CommentsIt was so nice to have everyone over for supper last week. I feel so special when Conner can come to my house and hang out while we all visit. He is so special to me with his precious little smile and beautiful eyes- so sweet and innocent. He makes me want to just lay and snuggle with him while he talks "uhh-uhh-uhh". I can't imagine what it must be like to provide such care to him around the clock. I know it must be exhausting, but I admire you and John both so much for the care that you are able to give to Conner daily. I know you miss Abbey; I have missed Ryan so much since he has gone to live with his Daddy. It is just so hard to compete with the river, hunting, fishing, and four-wheelers (sounds like a dream to a 13-year-old). I miss seeing him with Conner and Abbey. It was so cute the way Abbey would throw a pillow at Ryan to get him to look at her. I haven't tried that, have you? He asks about them all of the time. He will always be my precious baby. I hope Conner can learn to express yes/no with moving his fingers or you may want to try the string switch again. But eye gaze is probably going to be the easiest for Conner. He certainly has the desire to communicate. Please call me if you need me. See you Sat. Love, Belinda
CommentsHey Betsey, I did not get your message until it was too late. Did you ask the grandmother about the nursing prof. shift nursing? So are we assured of 14 hours now? Im getting very confused! Is this through model or exceptional? Let me know what you find out. Did you hear from the lady this weekend? Love Deborah
CommentsDear Betsey, Thanks for the kind wishes. You're so sweet! We were out for snow Monday and just as the kids came in the room this morning they wanted to know how Conner was. They also ask about "Miss Betsey and Mr. John". I hope Conner is well and that his ears are clearing up. We may wait to send another box until the end of the month. The kids have already started drawing and talking about another "Conner's Day". We have these crazy state test coming up within the next week. I told the kids we will have a special day as soon as we have finished the test. So--be looking for an Easter Box real soon. I'm so glad you got to go to the beach. I hope you rested and re-grouped. You need these breaks from time to time. Please take care of yourself. Call if you need anything. Remember, you are loved. Miss Lucie
CommentsDeborah, I think the 14 hours is through the model waiver-so we still have to wait for the number of hours granted to the exceptional child thing-I think. I think the model waiver got 14 hours until the end of March. Great news but until he gets into the correct program, I will still be concerned. Kind of interesting though, isn't it? Miss Lucie, tell the kids that we took Conner to see the Harlem Globetrotters here in Statesboro tonight. It was kinda difficult but worth it. Conner didn't take a nap all day which made it hard for him to even make it from the car to the floor of the gym. We were able to plug his bipap back up when we found a spot on the floor but he fell asleep after the first quarter. BUT!!!He did get to see the Globetrotters and see them playing basketball. Sonny bought him a little ball and some of the players signed it before we left. We left in the fourth quarter and just ran Conner and the bipap up the stairs and out the door instead of going all the way out the way we came in. Hanner is a building that is not especially designed for handicapped people. If you are in a wheel chair, you are on the second floor and you want to go to the bathroom, you would have to go all the way outside through the front door, roll around to the right of the building, down the little hill-the length of the building, go in whichever door is unlocked and will pull open easy enough, find your way back around to the front where the restrooms are. Thank goodness the bathrooms have wheelchair accessible toilets and faucets, huh? Okay, don't forget when you go back, you have to go back outside and up a hill to the second floor and back through the doors, etc. By the way, it was cold tonight, too. And last, if there was another way-an easier way-to have gotten to the first floor tonight, then we were not made aware after asking several people. I don't really care about going around to the back. Conner liked the ride but they should have an elevator or something for people who can't get the stairs. If the building has one, somebody sure should know. I don't know but it seems like people who built things before all the political correctness stuff came about didn't know or didn't care that people with physical disabilities even got out of the house. Just have someone in your family with a disability and that'll change your perspective real quick. Anyway, I think Conner is doing pretty good. He enjoyed his night even though he slept through it. I am tired though and I still have more to do before I go to bed.
CommentsBetsey and Connor, I have been reading some of your journal entries and catching up. You have written to me in the past and I have visited your site but just never signed the guestbook as of yet. I am glad you all had a good time seeing the Globetrotters I think they are fun too. I am glad that Connor is doing good and you all are as always in my thoughts and prayers. Lily is doing great, sleeping on Bipap right now of course...just wanted you to know I "stopped by". Amy
CommentsDear Conner, Mr. John, and Miss Betsey, We are so glad Conner got to go see the basketball game the other night. We were out Monday for snow. We were already waiting on the bus and they called off school. Conner, you would have liked the snow flakes. They were big and fluffy. We are getting ready for test next week. We have been doing a lot of work. We have started making lots of pictures for you. Do you like rainbows and smiley faces? Miss Mckinney has a place for us to keep all your pictures until she mails them. It is time for Math. We hope you have a happy day and have lots of fun. Miss McKinney's Class
CommentsThanks Amy. I try to keep with Lily, too. I know you have a lot of experience with this disease. We think of you, too. And Miss Lucie's class-you all are so sweet. I forgot to tell you yesterday that we got a machine called a UPS-uninterrupted power supply-battery to run Conner's current bipap AWAY from a plug for about an hour and a half. I wish we had it the night of the game but I only found out about it the day of the basketball game. Needless to say, we bought it immediately for $170.00 of the money you all raised for Conner. We are still waiting for the new bipap (insurance company's approval). But the UPS will serve as a mini-generator even when we get the new bipap. It is actually a computer back-up battery. The grandma of the sma twins in a town nearby told us about it. It is not a great portability thing because its so heavy-its not real big but really heavy. BUT! It will suffice until we get the other bipap. By the way, Meredith, I forgot to tell you thank you for thinking of us. I know how much you think of Conner and Abby. You are so thoughtful-as are so many of you who check in on Conner. Thanks! I'm tired and going to bed NOW! Oh! before I go to bed-update on Conner-he is talking so much. He has been trying to say something with a "g" sound and I can't figure it out. For days, "ah-gah," I don't know. It seems like it will turn into a word. He seems to be doing okay. Today his OT asked him how old he was and he answered so appropriately with folding his hand only 2 times. Good job, Conner!
CommentsWell, I say he's trying to say "Grammy" with a G, but Sonny may think it's "Grandaddy". Either way, we can both pretend..."gaaa" will work just fine for me, how about you Sonny? Will you respond to "gaaa"? What a sweet little fellow. He gave me some good smiles Tuesday when I visited right before the Globetrotter trip. I thin he was very excited. Just the part about going for a ride with mommy and daddy seemed to get him a little giddy. Well, I'm off to work for the day. I'm planning to go to Columbia Sat. after work to see Uncle Harry and the folks over there. I'll be back home on Sun.
CommentsBetsy - I've been out of the office for over a week (out of town and sick baby) and just caught up reading Conner's journal. Do you think it would help to call Craig Lanier or Bob Lane to help on the nursing situtation (aren't these state funded programs?) You've probably already thought of that but if not, I would be happy to make those calls. I do need a little more info because I am (like most) lucky enough to not know alot about these programs. We still want Conner to come out and see the horses. Ashley June is getting over a nasty case of the flu but we should be "safe" by next week and it is getting so pretty outside. Maybe with Conner's new bi-pap battery he can make the trip -- just let me know.
CommentsYes, Laura. I think it would help to call them but everytime it gets right to the point of calling, something gets worked out temporarily. The long term plan to "fix the system" is actually in the process right now. The state is being pressured by a group called Families of Medically Fragile Children. I get updates from Ann Meguire who lives in Richmond Hill and is the sma twins grandmother (they are also responsible for the SMA Angels Charity). She and a very nice lady, Vivian, came to visit Conner last week and brought him books and diapers and were so sweet talking and visiting with him. Ms. Meguire asked us, on behalf of the charity, what we needed. She told us about the UPS thing of course but she also updated me on what was going on with the new program that is going to (I think) abolish the model waiver program and (I think) exceptional child and make eligibility or the qualifications for nursing and the number of hours more case specific. So, there are already people putting pressure on. We wouldn't be having all these problems if Conner had been put in the correct program in the beginning but he wasn't and nothing I have said or done until now has gotten him switched. We are just waiting on word that he has been switched. I was aggravated last week or whenever because it was like...right before-after ALL THIS WAITING for them to correct the mistake-they were going to cut the hours-right before we get him into the program where his hours would be stable. That was about to make me VERY, VERY angry. But for some reason, I don't know if someone did call or what, but they didn't cut the hours. But we still don't have confirmation that he is in the right program so they could still go back and review his case again at the end of March and try to cut the hours. But I hope not. Anyway. I appreciate your help though. I do want to get Conner out to see the horses. I don't know how to get that UPS thing to work right. I don't ever read directions. I just plugged it in and expected it to charge. I guess I better go find out how to get it working so we can get him out. He is trying so very hard to say words. I am so proud of him trying to say consonants. Before now we've mostly heard, "aaaaaa." He is really using his hand to say yes and no, too.
CommentsOH and I hope Ashley June is feeling better soon!! I know that wears you out, too.
CommentsDear Conner, you are a handsome, beautiful, prescious child. I have heard about you and just now I have come to your website. It is wonderful to see you and your family and all the obvious love around you! Betsey, your son reminds me a lot of my son, Ryan. When I get his site up, you'll see! We have never spoken but I've heard a lot about you through Debbie Freeman(payton's mom) here in Florida. Anyway, just dropping a note to say hello and wishing you only wonderful things. Take good care.
CommentsThanks Regina. A lot of the sma babies look like Conner to me. To me it seems like the eyes or something. Please let us know when you get Ryan's site up. I am hoping I can get down there for the fundraiser this year. It would make a nice little vacation. Conner is doing good today. He kind of had a snotty morning but he got better. My friend and I took him to the pond to feed the ducks earlier. Tonight we're visiting with family at Julie's. At the pond, a big,brown lab came up the van to get some of the duck food. Conner fed him bread. I asked if he was scared of the dog, "uh-huh..." You want mommy to get right next to you, "uh-huh.." We are actually supposed to leave in just a minute to go to Julie and Jim's but Conner just fell sound asleep. I hate to wake him but maybe that'll help him go to sleep earlier tonight. He's been staying up late and then waking up at about 5 am. We've gotten into a habit of mommy cuddling with him to get him to sleep. It works almost every time. Okay, talk later.
CommentsHi guys, I'm back from Uncle Harry's. Gary and I took Lauren with us and she really enjoyed the little girls and Craig. It was good to see everyone, but I was reminded of how much I enjoy my family and wish I could take more time to be with them. Harry is doing fine. He has a very nice "friend", who is helping make his divorce easier. Endings are always sad, even when the parties agree that it's best. It helps to be a survivor and someone who looks to the future. Harry is. Give my big boy kisses and keep some for yourself. Love you.
CommentsBetsey, What are your thoughts on the SMA conference this year? Do you or John plan on going? I'm trying to decide what's best for me. Gina
CommentsI would love to go to the conference. I hadn't even thought about it yet, though. I guess I need to. It would be good to meet everyone in person. Conner's doing good today. He is talking and yelling a lot. We snuggled early this morning for a while. He stayed real quiet and just stared at me while I slept. Everytime I'd peek at him, he'd be lookin' at me. What a sweetie. I was glad to see that the Swanson twins-Cassidy and Skyler- turned 5. That is OLD!!!!! Their family has done so good with them and with us, helping us to keep Conner healthy. We learn so much from the way they take care of the girls. Unfortunately, a lot of their trials paved a relatively easier path for Conner. They are precious big girls and I can't wait to get Conner over to see them. Gotta go, the man of the house is demanding my presence. I might just have to demand his presence in the den so I can get some work done.
CommentsI wish you could go to the Conference. I know it would be very helpful for you. I may not be able to help much financially, but I will contribute, if you can get the necessary help at home. Maybe I could talk to your grandparents. They might be able to contribute also. Let's try to get you there...if you can arrange your schedule. I'd love to go with you, but I know that would be way out of our reach. If Gina goes, it would be good for you to get a chance to meet her. Gina, I don't know you, but I feel as though I do. I have been thinking of you today. I can only imagine how sad some of your days may be. Today is a very rainy, overcast day here and it just feels the way those sad, sorrowful days tend to feel. Tomorrow the sun will shine and the saddness will lift. But on these days, it's just hard not to cry rivers. Just know you're not alone and even strangers can imagine what you go through. God Bless!
CommentsDear Betsey, John, and Sweet Conner, We have been out of school for a few days. I am glad that Conner has been having good days. The kids ask the first thing this morning after they got off the bus. They were so excited that he was making all those sounds. They are understanding more about his situation each time we talk. I listened to one tell our new student about Conner yesterday. I was totally amazed how everything was explained. The other student is now looking forward to being a part of "Conner's Day". As you can see, more lives are being touched by that sweet little boy. Take care of yourselves. You loved. Miss Lucie
CommentsThose kids are the sweetest!!! I can't wait to meet them. I guess its time to start planning before the school year ends. Conner has been a cutie of course. Last night we were watching 'A Bug's Life' and I can't help but talk along with the movie since we've seen it over 300 times. Conner was talking with the movie, too. It was funny. There's the part where Hopper says, "WHERE'S THE FOOD???!!!!" and Conner says, "UHHHH UH UHHHHHHHH?!!!" He talked and we laughed through the whole movie. I talked to Abby and she sung to Conner. We miss her. We are supposed to see her next week. I hope.
CommentsBetsey and Conner, I am a friend of Gina Fimbels, she told me about your site. I know that nothing I can say will help you or Conner but I just want to let you know that there are people, strangers, out here thinking about and praying for you both. I know it's not easy but the love that Conner shows you has got to be worth all you do for him. I wish I knew how to help every sick child feel better and every sick child’s parent to be at ease. I am very fortunate with my children’s health and that makes me strive harder to find ways to help those less fortunate. Gina said it best in one of her past journal entries that going through all of this made her less selfish; I am less selfish because of what she went through. I used to take everyday for granted with my children, that they will always be healthy and happy, but no more. There are too many uncertainties in life and I want to make sure I take advantage of every day I have with them. They also learn the benefit of caring for others and that it’s important to help others. No one understands why these things happen but that reason has to have something to do with love and the expression of love. I would have never given a second thought, before Booper’s life touched mine, about writing a note to a stranger and expressing my sadness at what her, her child, and his or her entire family go through when the child is sick, but now I encourage everyone to say what they are thinking because it matters. No matter how small of an act that someone makes, it makes a difference. I know I’m rambling on here, it’s because I’m not exactly sure what I’m trying to say. Betsey, my heart goes out to you and I praise you for taking such good care of Conner. Conner, you are a beautiful boy and I’m glad I know about you now. Much love to you both. I hope my posting makes sense to you. Paul
CommentsHi Betsey & Conner! It’s wonderful to “meet” you through your pictures and journals. I am a friend of Gina Fimbel. She sent an e-mail about you two and your site and I wanted to get to know you :-) I never got to meet little Andrew but I visited his site almost every day. I would love to add you to our company’s prayer list if it’s ok with you. I know that in a situation like this the more people you have praying for you the better. I wear the SMA pin I got from Gina every day on my lanyard here at work. I get a lot of comments & questions about it. I also added your site to my list of Favorites. As I was reading through some journal entries I saw that you were having some trouble with insurance (if I read it right). I work with a pharmaceutical company in Patient Assistance. I don’t know if I would be able to help or not but if you’d like to get in touch with me I could try to help you find some alternative resources. I do hope you get to go to the SMA conference. Keep up the good work, I’m sure it is trying at times but just remember that you’ve got a lot of people on your team and that God has a very special purpose for all of His SMA children even if it’s not always clear to us. Take care! Kelly
CommentsPaul and Kelly and others who read but I may not know: Your thoughts, prayers, actions do not go unappreciated. Maybe you have an idea of how proud I am of Conner. If he didn't fight so hard to live, I wouldn't have a son to write about. I am proud of Conner for smiling, laughing and trying so hard to talk even though his life is completely motionless, he can't eat, play on his own, hold a book, color a picture (on his own)...but he is happy???? Okay...that makes me feel like a big brat when I complain about anything-which I do. Anyway, I am proud of him for teaching others how to appreciate life. If Conner can appreciate his life, I suppose I can... I put up a tent over his bed this afternoon. We played under it until he fell asleep. He wanted me to tell him stories and then he wanted to tell me stories, "ahhh-uhhh-uhhh-aaaa." Very cute. I am so glad that you who are reading-are reading about Conner. I guess one of my reasons for writing about Conner is to let others know that you can have a severely ill child and still live. Life doesn't end at the diagnosis (or divorce). Conner really has a life and thanks to you he and I have so much support that we can't fail! Well, I am just trying to say thanks for thinking of us and offering your help, thoughts, etc. We do appreciate it and I am pleasantly surprised everytime I see that a new person is getting to know Conner.
CommentsBetsy - What are the dates of the SMA conference and what is the cost?
CommentsLaura, the dates are June 21-23 in Schaumburg, Illinois. I was telling Gina that the registration isn't that bad, its adding up $125 for reg., $200 hotel, and then a couple hundred for plane ticket and eating or spending. I am sure John's dad and/or my grandparents will help if I ask. I just really don't think about and plan these things until its too late. Anyway, if anyone is interested, you can get the info. off of www.fsma.org. Oh, Deborah I found out yesterday that the state is still planning on cutting Conner's nursing hours. What I don't understand is how do they think I am going to go to the necessary appt.'s to keep the resources we have if I have no help during the day? How do I get Conner to the doctor or out of the house, ever? How do I get to appt.'s-I can't take Conner with me? How do I work and try to be less dependent on the state? How do I leave the house during daylight hours and go to the store or the gym-ever-if I get only enough hours to sleep maybe 6 of the 8 hours granted upon us? When do I clean my car, when do I catch up on sleep when nurses don't show or get fired? When do I catch up on sleep and get the laundry done and the dishes-the bare minimum? If I am using all of Conner's nap time to sleep, like I used to, then my life consists of sleeping, doing Conner's treatments, reading and changing out videos, changing out face rags and laying back down by Conner and trying to catch up enough so I can get back up and wash more face rags. Not to mention that my self esteem, being totally dependent on other people to pay my bills, just gets crushed. I WANT TO WORK! If they cut my hours, I will have to quit the job that took so long to get. I had to get used to taking care of Conner and all of his "business" needs and be able to have enough time and mental and physical energy to do a job. I finally, through counseling and other routine and life re-structuring things, convinced myself that I was ready to take on something that will give me (and Conner) some independence. If they cut those hours, that's it! I am right back where I started. That terrifies me. I could feel my blood pressure rising last night. I had Conner to myself last night and I was up pretty much all night (but I got to sleep since the am nurse came in at 8-thank goodness). But the more tired I got and the more I thought about them cutting the hours, I got so, so mad-MAD, very mad. My blood just starts to boil when I think of the attitude that they need to keep people from taking advantage of "their services." I just wish I could throw my life on them or their sister or mother or daughter or son for about 2 full days. They would give us 24 hour nursing then. They don't take into consideration all that goes on in between changing out face rags. What about sitting next to Conner, watching tv with him and he starts making a funny breathing sound that I've never heard? I'm thinking it may be his weak heart finally giving out. "This is it." I start sweating and checking and asking if he's okay and then he gives me a big smile. Okay, he's okay. Then I go to feed him and I check his stomach and blood drains from his tube. What in the hell is that????!!!! What is that? Is he bleeding in his stomach? Is he swallowing blood? If I called the doctor, what would he do anyway? Is this actually worse than his more obvious condition of chronic respiratory failure? I'll wait it out to the next feeding and see if it happens again. Do the people who decide our hours understand the constant worry that my child is in the process of dying and can die from crazy little things at any moment- does that count for something? That is work, too!!! And it is DRAINING anaylyzing every breath that comes out of his mouth. And you can't tell me not to because as long as Conner breathes, I am his mother. That stuff was just typical stuff that happened yesterday. enough venting-time to go take advantage of the time I do have today. I saw a bed frame for Conner and Sonny said he'd get it for him, so I need to go get it and put it together. It'll clear up some clutter from his room.
CommentsBetsey, I don't know what to say tonight. I just wish there was something I could do to help. Being so far from you, the only thing I know to do is to keep praying that you will continue to have strength. Please try to rest when you can. Let your friends come by and watch Conner while you rest for an hour or so. That little boy makes other people happy just by being in his presence. I still remember the wonderful feeling of amazement as I talked to him. He is a remarkable child. Just know you are thought about and prayed about daily. You are loved. Miss Lucie
CommentsIts only 11:00 and I have Conner's bed and headboard put together. It only took me 7 hours! But Conner and I had fun so...he would not stop watching even though he was exhausted at about 5:30. I finally had to move him to my room because he wasn't sleeping. I figured out later his bowels were bothering him but he was acting preoccupied with "helping me like bob the builder". He'd hammer things for me and he really liked that. But its together and really cute and he squealed when he woke up from his late nap and I told him I was finished. I'm not quite done with the room yet so he hasn't seen it. I need to bolt his Babe mural thing up on his wall. So, I was going to get the drill when I thought I'd check my email and stuff. Thanks Lucie, I know if you, my mom, Connie or any "mom" like people were close-you'd help or something but its not that bad because I'm so used to living in an emergency like situation. Things are manageable now-I just hope they stay that way!
CommentsI'm very mentally exhausted from my trip to Kentucky and back. Gary and I left Sat. evening and drove to Murfreesboro, where we spend the night and went into Munfordville in the morning...trying to find Abby. With little cooperation on that end we tracked her down and she was sooo glad to see us. We were told that we couldn't take her for a visit because it was "too soon". Suzy refused to talk to me herself and had her relatives telling me why I couldn't have my granddaughter for a couple of weeks to visit her dad and his family and all her Georgia relatives. The fear seemed to be that Suzy would lose control of her. Control is a key word in Abby's handling right now. Everyone is controlling everyone else in that area and the only problem with the control is that it's keeping my sweet baby girl in an isolated area with people she barely knows. Suzy says Abby's afraid for her to get out of her sight. Maybe that's because there's no one else there that she feels comfortable with the way she does here. The people I met were all nice but very misguided by their need to feel like they are righting some wrong that was supposedly done to Suzy when she was a child. One of the people there, Suzy's boyfriend Jimmy, is not nice and is not a person who should even be in the same state with her, much less the same home. So, prayers are still needed for our baby girl. Conner, I'm coming to see you today. I can't wait to see your new bed and kiss you all around your face and neck. Love, Love
CommentsOh how we miss Abby. I can't even express my opinion of anything else or I will write a lot of cuss words on Conner's sweet little elmo page. So, call me and I'll tell you what I think. Conner had nice visits yesterday with granddaddy and Belinda and daddy. I went to Savannah Sat. night but by the time I got ready and got there everyone was going home. So, we turned around and went home! Last night I didn't have a nurse so I was up til 4. At 2, then 3 then 4 I was in bed with Conner with him staring at me going "aaaaaaaaauuuuuuuhhhhhh!!!!" Finally at like 3:30, I said, "Conner-please, I'm begging you to just please close your eyes." He wants to talk, talk, talk. Then he was back up and yelling in my face at 7 and when Irene came at 8 I thanked God and ran to my room. I can't help but laugh at him though because he is obviously trying very hard to tell me something and I have no idea what it is. Anyway, we hooked him arm to a sling yesterday and I taped a magic marker to the end of a stick and put it between the sling and his arm. AND he drew a picture-all by himself!!!!! It was the first play thing he has ever done all by himself. I'll have to get the picture on the website so you can see the circles he drew. Gotta go.
CommentsWell, I got to see my big boy moving his arm (in the sling). He was so cute, knocking over the blocks. We had a nice visit. Tonight Gary and I are going to go and visit Mammaw and Pop Pop. I know they want to hear about Conner and Abby and everyone. I haven't had time to see them lately and they get very lonely. They really miss Robert, as we all do. Take care, guys.
CommentsWell, I think Conner has some sort of bladder infection or something. I guess we can run some pee to the hospital lab. Gotta go and call the doctor!
CommentsDear Betsey, Oh my! Maybe this is something that can be fixed in a hurry. Conner, I hope you get to feeling much better. I had a visitor the other day and she commented about Conner's picture that is in the classroom. Again, I told Conner's story and showed the web site to her on the computer. Well, Conner has done it again. He has touched the heart of another person. The lady was from our local paper and today another article was written about Conner and the lives he has touched. If you have looked lately, surely you have noticed the increased hits this site has recieved. Give that little "Prince" a big hug from me, and lots of bunny nibbles. Please let him know that he is now known throughout the North Georgia, Fannin County area. He truly is a shining "STAR". Remember you are loved. Miss Lucie
CommentsBetsey, What's going on with Conner right now? Is he okay? Just a little worried since you haven't written since you said he might have a bladder infection. Also, have you had a chance to find a ticket? Love, Gina
CommentsThe pee pee is currently being inspected. So, I hope to find out something but either way I'm just trying to make the baby comfortable. I think he has a mixture of allergy issues, teething, pee pee, his mask is cutting into his nose, gas, constipation.......so I just try to treat each one and drug him a little for comfort. He slept all day yesterday. Miss Lucie, thanks again for sharing Conner. As I always say, I am so proud of him. Conner is an inspiration and seems to bring out the good in people. Gina, I haven't had a chance to check out tickets. But I can right now! I'll keep you updated on Conner. He is sleeping right now and I hope he will be comfortable when he wakes up. I'll do a wee wee inspection and see if it still looks irritated and check for bubbles in his lower tummy and put a bandage and medicine on his nose and see if his sinuses are still purple and THEN gives lots of hugs and kisses. Actually I do that first and last.
CommentsHi Conner, I talked to Abby last night. She loves you and Aunt Betsey and Daddy. She thinks she's going to get an "itty bitty kitty" as she said. Do you remember the kitty you played with at Grammy's house? We haven't had any new ones in a long time. I guess that's good. Hope you are feeling good today. It looks like a promising day...sunshiny. Grammy is feeling much better today. My chest seems to have cleared up over night, so I'm ready for a healthy, happy day at work. I love you my little guy. You too my sweet little girl. Shall I tell the world what your Daddy used to call you when you were a little girl, Betsey? OK. It was "motor mouth". It works for Abby, too. she must have inherited that from you...loves to talk and talk and talk.
CommentsHi Connor. We decided to come and take a look how big you are getting. And boy you have grown! I hope you are feeling better and if not---> Get well very soon. Come see Skys site if you'd like.. It is also on this angels site. Take care..Tracy adn Skylar
CommentsHello Conner and Betsey! Conner we hope you are feeling better and that the "pee pee" thing is getting better. I let Lily look at your pictures today and she enjoyed seeing you and we talked about how you have SMA like she does but you are alot bigger than she is. She is only 10 months old and didn't really have alot to say about it other than "ahhhhhhhhhhhhohhhhhhhhhhhhh". We think you are very handsome and sweet too! Your mommy does such a good job with you and I know you must love her so much! Betsey you are always in my prayers as well as Conner! I am emailing you tonight with a few questions and I hope you don't think they are to personal. Hugs to you all and as always you are in our prayers!!!
CommentsI'm so touched by all of you SMA moms out there taking the time to look in on Conner and Betsey. I'm going to go to your websites as soon as I get out of this one and check out all you beautiful children with your strong loving moms. God does his best work with you ladies and your very precious angels. We, also, pray for all the other sma families. We must let the world know about this terrible disease. I don't think anyone affected by it had ever heard of it until it struck their family. With knowledge will come a cure someday. I truly believe we are so close to a day when no one will have to fear sma. But in the meantime, we'll love our little pioneers.
CommentsSorry I haven't written-busy weekend! Tracy and Skylar, thanks for keeping up with us. I try to keep up with y'all,too. Conner got to get out a couple of times this weekend. On Friday, he went to a cookout with me up to the Presbyterian Church for my beginning my job. They hired me to direct the program they run for participants with Alzheimer's (or similar problems). I enjoy the ladies so much! They make me smile (and cry a little) but mostly smile at their spirits. Just like Conner, they make me want to make the most of what I've got. Anyway, back to Conner!!!! He went to the river yesterday and road on a boat! Brandon and I took him to Brandon's uncle's river house in Effingham Co. They were cooking out and everyone was so sweet to Conner. I was NOT excited about putting Conner and expensive equipment on a boat but I was talked into it and I am so glad he got to go. His eyes were so wide and he was checking out everything. I think he really likes the water. So, we have a lot to talk about today. He'll tell everyone who calls, "uhhhaaaaaa...uh...ah...daaaa...naaaa.uh-huh" I can't wait for him to wake up. In the meantime, I have stuff to do. Oh, his pee pee is all clear. I think the trick was mixing neosporin(sp?), vaseline and nystatin together and putting it all over his hiney and penis. I think he had diaper rash that was stubborn. That probably came from a day or two of frequent pees and poops for whatever reason. I don't know. He may have had something and now its gone. Whatever-its gone.
CommentsYeah Conner!!! I am sure you loved the boat, Lily got to go out on a boat this summer when she was just a newborn and all she did was fall asleep but it was nice. I look forward to her getting a little older and maybe getting her back on it again (although I would be scared with all the equiptment too). Glad your "pee pee" deal is over with too! Lily sends her love, and wet slobbery kisses!!!
CommentsErnest and Deborah Ward, Anna Billingslea,Christina and Stephen Hanawalt, Alyssa Banguilan, Joshua and Diana Blanton,Chris Eddy, Sara Jane Moya, Marc and Corey Debrody,Jason and Laura Strange, Stephen Fisher, and Kelly Rutherford-Yesterday I got a letter from Gina Fimbel with checks from each of these people. These are friends and family of Gina's who wanted to make sure I went to the conference. Um...is "thank you" nearly enough? I don't know what to say. Thank you so much for thinking of my interests. There is no way I can't go now. Gina, thanks for sharing your people! I know my friends and family will always have compassion for other sma families, too. I hope I can do for another mom what you do for me! Conner news-he talked all day. He called both Granddaddies and told them all about the boat ride and I forgot to tell he saw a horse and doggies, too. He saw the horse out in the field. We still need to go to your house and get closer, Laura. I'm still checking up on the new bipap. Its stuck between the equipment company and insurance. The equipment co. says its up to insurance. Insurance says they have no info. Okay, hmmmm. as each day passes and passes and passes. Send the info. again is what I say. Always something. Anyway, Conner is really trying to talk and say, "Guh,guh, guh" I think its, "Go away" for when people get in his way of the tv. Don't worry Lily, Conner's kisses are slobbery, too, but I wouldn't have it any other way.
CommentsThanks to all you wonderful people who want to help Betsey go to the conference. I'm always amazed at the generosity of loving people - I don't know why because I do believe that good triumphs over bad. I have a hard time accepting that there is evil in the world. I think of it as "misguided" until it's just thrown in your face. I got to hear about the boat ride first hand from Conner. What excitement in his voice! I love that he gets to have "adventures". Life is about our good adventures. I can't wait til he's ready for his visit to the mountains. It's getting pretty up there now with the spring blossoms. Get that machine so he can come up this way. I tried to call Abby last night but they have put a block on the phone to Not receive calls...more isolation for my precious little baby girl. I'm learning more disturbing things about Suzy's "boyfriend" and the way they were living in White County. I'm afraid history will repeat and no one will be able to get Abby away from such unhealthy behavior. I won't give up. Abby will be back.
CommentsDear Conner, We are so glad that you are doing better. We had Conner Day again and we have been busy with your Easter box. Today we are mailing it to you. There are cards for you and some for Abby also. You can send them to her or give them when she comes to visit next time. There are some surprises in the box also. We played with one this morning. Miss McKinney found it for you. We know you will like it. It will make you smile. It did us. We even laughed. We are going on Easter break and will be back in a week. We hope you have a wonderful time on Easter. Are you going to hunt eggs? We hope you find the prize egg. The pictures we sent you are pretty. We think so. Smile when you look at them. We hope you have sunshiney smily days. Miss McKinney's Class
CommentsYou all are so sweet! I wanted you to know now that Conner wouldn't have gotten to go on his boat ride without that battery that he got after you raised the money for him. He also wouldn't have gotten to go to the cookout with me. Remember that we love you and appreciate your thinking of and caring for Conner. He says, hi, and we are going to have to have a "Miss Lucie's Class" Day. love, love!
CommentsGood morning Sunshine! Mommy told me all about your little man three piece suit. I bet you were very handsome all dressed up for your pictures. I can't wait to see the finished product. You are always my little man. I talked to your cousin Abby last night. She has had a cold. She told me she misses you and Aunt Betsey and her Ariel computer game. We hope to have her with us soon. Love you guys
CommentsWhen Conner and I got home last night we noticed the package at the door. I took it in his room and asked if he wanted to open the package-"uh-huh." I put the dancing bunny on the floor and squeezed its hand and a huge smile came across Conner's face. "You like that, huh, Conner?" I pulled the pictures out and he made me show each and every one to him. We read all the poems and examined the drawings. If he didn't get a good look at one, he'd roll his eyes way up, meaning "PUT IT UP HIGHER!" He rolls his eyes in the direction he wants you to go. By the way, thanks for my pictures, kids, and I will send Abby's hers and the bunny and the book. I read him the article about the kids in your newspaper and he read along with me. I showed him all the books and eggs. He enjoyed it all and it gave him lots of smiles. I got one picture of him with his suit on with some of the Easter stuff. Then the battery on the camera went dead. Well, we are trying to plan a day to come see you all. I am thinking the end of April or first Fri. in May. We will get some Easter stuff to you all from Conner. He loves making stuff, too! I can finally get through a box of your stuff and through all the pictures without crying. I just appreciate you kids so much. Your effort to keep us happy is very encouraging. We have so much support around us that nothing can make me feel hopeless or alone no matter what we are facing. Thanks, thanks, thanks. Time for work-I love saying that.
CommentsHey Conner, Just wanted you to know I've been checking in on you! I pray for you, your mom and dad every day!! Have a happy, love filled day! Mrs.Shelley
CommentsHi Conner and Betsey, I hope everything is going good for you these days. How is the job going Betsey? Conner, are you being a good boy? I bet the Easter Bunny is going to bring you some fun things. I just wanted to say hi and make sure you guys are ok. Take care of yourselves and have a great weekend! Paul
CommentsHi Shelley-Thanks for writing us! And Paul, I appreciate your thinking of us, too (and your help to go to the conference). I love my job. It is so easy compared to taking care of the Conner "business." Not Conner's personal care but Conner's business care. Today was HELL!!!! The Dept. of Community Health is in charge of Medicaid, I guess, and the company that they contract with to do case management and send out notices of a DECREASE IN HOURS! isn't doing such a great job. So, again, I didn't get my notice that my hours were being cut (I heard but nothing in writing with a date) so I couldn't appeal. I can't appeal without any evidence of "adverse action." So, the nurses and the nursing agency and I were all at odds trying to reconcile the schedule for the next two weeks when I found out that the hours are cut on Mon. Well, finally, at the last minute on Good Friday, we got the attorney at the Dept. of Community of Health to call the nursing agency to not implement the 12 hours until we figure out more on Monday. The problems go further than just me missing out on two hours though-which is significant now that I am working. The day nurse gets benefits. If the hours mistakenly get cut for a week-she doesn't get to put in the hours to get the benefits and that causes problems. At the point the caseworker issued a letter to the nursing agency that my hours were cut-immediately before that-a notice should have come to me! My right to appeal was violated and they do that all the time! That is wrong and causes so many unnecessary problems. And on top of all this-he was disqualified from the program before they cut his hours. Once you kick someone out of a program, what right do you have to then amend their membership? Does that make sense? This is the kind of stupidity that Georgia citizens who have sick kids and overwhelming lives have to deal with. This makes my job feel like going to Club Med. I love working with the Alzheimer's ladies. They are all sweet and so appreciative and, oh, how I empathize with their caregivers. As far as Conner and his incredible cuteness...he knows all about Easter and that there is an Easter Bunny. He is very excited, I think. He is also definately in a "Daddy" stage. Tonight, John told Conner he was leaving and he'd see him tomorrow and Conner said, "uh-Awe..ah-awe.." Oh, and he cried last night when Daddy left. I suppose we didn't know he'd be around to notice our divorce and he sure is. Conner loves his Daddy. John sings with him the whole time he's here and Mommy is always doing stuff around the house and gives bits of time to the baby until bedtime. John gets to spend Easter with Conner though and I know Conner will love going to Daddy's. I have made a basket for him full of fun-looking candy that he can look at and Daddy can eat. Okay-I have stuff to do before tomorrow and I must sleep! I haven't had a nurse in two nights and I am tired!
CommentsDear Conner, I am wishing you a very "Hoppy" Happy Easter !!! Much Love, Miss Lucie
CommentsHi Betsey & Conner, Just wanted to wish you both a very Happy Easter! I hope Conner enjoyed his daddy time. You both are on our thoughts & prayers so often! I'm so glad you like your job Betsey. I hope things continue to go well there and and all of the other "Conner business" gets worked out without too much pain and aggrevation. You don't deserve to have to deal with that. Also, don't forget to send me the ticket info. I have another envelope I'll be mailing this week! I hope it helps. Did you hear anything from FSMA? Talk to you soon, Gina
CommentsHi Conner, See you soon. I'm bringing your cousins, Lauren and Drew, down to see you today. They are excited and I am, too. Wish Abby was with us, but maybe the next time. We all talked to her last night. She misses you and Aunt Betsey. Get rested us, because we're going to PLAAAAAAY!!!
CommentsAunt Betsey says:"The nursing stff(this comes straight out of her big mouth.she's telling me to write this)"The nursing stuff is getting resolved" (I don't know what she is talking about.)Anyway, (This is me.talking -or typing- that is.)Aunt betsey the motormouth also says"They cut the hours two weeks before they were supposed to so that caused confusion. I guess I have to just accept 12 hours with the new program." WHAT A MOTORMOUTH!!!!!!!!!!!!
CommentsConner is enjoying his cousins. He and Drew (Conner's age) played with Conner's race track yesterday. That was sweet. Lauren has been sweet reading to Conner and playing nurse.
CommentsGood Morning Conner and Betsey! How are you guys doing today? Conner you are so lucky to have cousins to play with that love you so much. Did you have fun with your race track yesterday? I bet you did. How are you Betsey? I got your letter yesterday, Thank you very much for taking time out of your exhausting day to write it. I sincerely hope that you both have a great day, I hope the weather there is as beautiful as it is here and you get to enjoy it. Take care, Paul |
