Name:

Laura

Email:

Date:

02 Dec 2000

Time:

15:47:38

Comments

Hi Conner, I'm just testing this thing out and make sure people will be able to write to you. Your family loves you very much!!

Name:

Mommy

Email:

Date:

03 Dec 2000

Time:

15:31:45

Comments

Laura, this is great! Thanks so much. I will continue to update you, friends and family, on this page about Conner's care and health. He is doing fine today. I dressed him in a cute red pajama outfit Grandmommy Connie got him yesterday. We are doing pictures later so I will post. He is sleeping so nicely right now to Christmas music. I am forcing myself to get into the spirit-for Conner. He has a right to have the best Christmas possible even if we are all a bunch of depressed crazies right now.

Name:

Stephanie McNeil Smith

Email:

stephaniejune@prodigy.net

Date:

04 Dec 2000

Time:

10:12:44

Comments

John and Betsy-

What a beautirul page. Stacye forwarded me the site. He is such a beautiful boy. Please know that you and your family are in Tim and mines prayers each and every night. May Gody Bless you.

Stephanie and Tim Smith Greenville, North Carolina

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

04 Dec 2000

Time:

13:42:32

Comments

I am so glad others have enjoyed the page. Conner is a special angel. But we all say that about our babies. We are praying he doesn't get sick this season. He hasn't had a respiratory infection before so we hope to keep them away this year, too. Sometimes you just can't do enough. We spent last Christmas in the hospital, so our goal is to stay home this year. Actually our goal is to always stay home, but...we're really trying hard.

Name:

Lea Batten

Email:

leabatten@aol.com

Date:

04 Dec 2000

Time:

16:04:23

Comments

What a neat webpage! My mother forwarded me the address, and she keeps me posted on how Conner is doing on a regular basis. Please know that you and your family are in our thoughts and prayers.

Name:

Stacye W. Johnson

Email:

stacyejohn@hotmail.com

Date:

05 Dec 2000

Time:

09:59:50

Comments

Good Morning Conner, Betsy, & John! I'm so glad I got this website. Betsy I wish I could say I enjoyed reading every entry, however, I cried...You are a wonderful mother who through your writing and sharing about Conner's illness makes me realize how much you are enduring. My thoughts are always with you and Conner. He is truly an angel and I hope this Christmas can be a joyous one for ALL of you. I hope Conner's pictures went well yesterday! I look forward to seeing them on the site. Give him a kiss from me and know that I will continue to pray for you, John, Mrs. Connie, and Conner! Warmly, Stacye

Name:

Email:

Date:

05 Dec 2000

Time:

10:09:32

Comments

Name:

jenn - brittany leigh's mommy

Email:

pm121597@aol.com

Date:

05 Dec 2000

Time:

18:12:14

Comments

you have a very nice site here for connor and your family - connor - you are a handsome boy with a wonderful family - i wish you all a wonderful holiday season - with love - jenn - brittany leighs mommy

Name:

Mommy

Email:

Date:

06 Dec 2000

Time:

00:05:34

Comments

Thanks for your comments. Conner is okay. He had kind of a strange day today. Something's not quite right but I just can't put my finger on it. I think he has or is just getting over some kind of infection-like a sinus infection or something. No fever just other various, nonspecific sypmtoms. Anyway, I hope its on the way out, not on the way in. He goes to the Orthopedist tomorrow. We're only going to offer suggestions to the therapists. I don't see that we will put him through too much with specialists and splints since scoliosis is inevitable. If we can get some info. about delaying it, that would be helpful. I'm interested to see if there is any onset. His joints are popping, too. I'd like to know about that. He doesn't act like he's in pain because of it. Well, I'll report what we find out. Thanks for caring.

Name:

Alison

Email:

ast1127@hotmail.com

Date:

06 Dec 2000

Time:

14:55:54

Comments

Betsey, That is such a great picture of Conner! I would love to have a copy for my fridge. The one I have is from a while ago. Thanks, Alison

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

06 Dec 2000

Time:

15:54:25

Comments

Whatever Alison. We'll see. (just kidding) Conner went to the doctor today and he does not have any signs of scoliosis. He had a hard time. He kept crying and clogging. He finally calmed down and the doctor looked at him. He said we were doing a good job with Conner. We need to work on stretching his ankles with his legs straight but that was the only tightness so far. His bones popping out in his butt is normal for his condition and not painful. He said because of the looseness due to no muscle being there it just seems to pop out but it goes back into place. It would be painful if it popped out and stuck. He will never have that problem because the muscle is not there to prevent the bones from going back into place. I was so happy that his spine was okay. We just need to keep doing what we're doing and hopefully we can delay any pain due to the bones growing faster than the muscle.

Name:

Grammy

Email:

sangar@mindspring.com

Date:

07 Dec 2000

Time:

07:28:07

Comments

Hi Conner, Betsey, John and all I miss you guys and wish I could be with you. My car is warming up and it's time to leave for work but I just wanted to pop in for a minute and say I love you think of you as I'm riding through the country side, stopping to talk to strangers, and listening to all the craziness on the radio...Boortz, Rush etc. What a life!

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

07 Dec 2000

Time:

13:57:14

Comments

I am SO frustrated with this nursing stuff!!!!Someone talked to the "model waiver analyst" and she said that it is a program that is designed to educate the parents and then pull the nurses back out. Also, since we haven't had nursing all this time then it shows that I am handling it BUT we haven't had it because of the long process!!!! I feel like telling everyone to keep it, keep IT-I don't need YOU!!!I will do it myself and with the help we have but the fact is I do need it and when Conner gets sick we would be able to keep him home if we had extra help. We canNOT afford to keep paying out of pocket for help and I shouldn't have to. I have worked since I was fifteen. I have paid so much money into the state and I deserve some help back. We are barely hanging on and someone in the state office is pronouncing that if we've done it this long it means we're handling it. And wher is HOSPICE???? There is not one pediatric hospice service in this area. There are right outside our county but they can't serve us without a certificate of need but the agency with the cert. doesn't do pediatrics! Is this right? We are left with nothing, no help and it is making me so angry. Okay, I vented. I hope something happens and soon. Thank goodness for Deborah Whitfield at Babies Can't Wait. She is helping so much.

Name:

Conner's Mommy, Betsey

Email:

Date:

08 Dec 2000

Time:

21:06:34

Comments

After last night, we are having a much better day. It took an entire hour of inexsufflating (CPT, albuterol, etc) last night to clear Conner and keep his O2 from dropping. I think this is left from whatever the "thing" was that was wrong with him-the feverless infection. He's fine now. He went white trying to get his bipap on today but we got him back. I am telling you what, when I have a "normal" child-IF I ever have the opportunity to have an undiseased child- I will be one hell of a mother. I'll be able to perform cpr like its nothin'. I'll be like, "Oh, hmmm...he's choking...let me handle it." Its funny, I'll clear a clogged lung but if Conner has a rash, I freak out and call the pediatrician after hours-"There are RED dots on his skin!!!" We put up the Christmas tree in before the clog last night and brought Conner back out on his breathing maching(bipap). He loved seeing the lights and watching me decorate. He watched the whole time. We have so few ornaments. Its all lights. It looks fine when the lights are on but looks funny during the day. But Conner Loves IT! He is watching a Bug's Life right now and he keeps glancing at the tree during his movie. He can't keep his eyes off the blinking tree. I am so glad he is enjoying Christmas. What a gift. It makes me so happy that we put a tree and tried. He knows its a special time. You can just tell he knows. He just looks at the stuff and looks at me and smiles. And when he smiles, it makes me so happy.

Name:

Conner's Mommy, Betsey

Email:

Date:

08 Dec 2000

Time:

21:09:51

Comments

After last night, we are having a much better day. It took an entire hour of inexsufflating (CPT, albuterol, etc) last night to clear Conner and keep his O2 from dropping. I think this is left from whatever the "thing" was that was wrong with him-the feverless infection. He's fine now. He went white trying to get his bipap on today but we got him back. I am telling you what, when I have a "normal" child-IF I ever have the opportunity to have an undiseased child- I will be one hell of a mother. I'll be able to perform cpr like its nothin'. I'll be like, "Oh, hmmm...he's choking...let me handle it." Its funny, I'll clear a clogged lung but if Conner has a rash, I freak out and call the pediatrician after hours-"There are RED dots on his skin!!!" We put up the Christmas tree in before the clog last night and brought Conner back out on his breathing maching(bipap). He loved seeing the lights and watching me decorate. He watched the whole time. We have so few ornaments. Its all lights. It looks fine when the lights are on but looks funny during the day. But Conner Loves IT! He is watching a Bug's Life right now and he keeps glancing at the tree during his movie. He can't keep his eyes off the blinking tree. I am so glad he is enjoying Christmas. What a gift. It makes me so happy that we put a tree and tried. He knows its a special time. You can just tell he knows. He just looks at the stuff and looks at me and smiles. And when he smiles, it makes me so happy.

Name:

Grammy

Email:

Date:

09 Dec 2000

Time:

07:58:18

Comments

I feel very happy to have Conner this Christmas..he's our special gift. Thank you God. Conner has truly taught us all about unconditional love, or at least it seems to be the message we are supposed to learn. Loving him is so easy and comes so naturally, but the pain of watching him struggle is a different kind of lesson. I'm not sure what pain is supposed to teach us...endurance, faith, I just don't know. I'm looking for positive things here...Conner's smile, his bright eyes, his love and acceptance...my daughter's unbelievable strength and love, determination. But in the end, I know that we will have to live without his presence here on earth at some point and that just plain hurts. Perhaps that will be softened by the knowledge that loving arms are waiting on the other side for the day that he is ready to go and be with them...loving mothers, fathers, grandparents, even those who will make him laugh and those who will teach. Enough of Grammy's rambling...love and happiness to my youngest grandchild on this Saturday morning.

Name:

Grammy

Email:

Date:

11 Dec 2000

Time:

06:23:13

Comments

Good morning Sunshine! Hope today will be a happy, healthy one for you and Mommy. You will be in my thoughts as always. Love you Grammy

Name:

Mommy

Email:

Date:

11 Dec 2000

Time:

14:25:00

Comments

Hi Grammy. I enjoyed seeing you even for a small amount of time. I got to get a small break this weekend by visiting all the other cousins. I hope I didn't bring their snotty noses back with me. Conner has something already anyway. I am shooting Zicam up his nose and my nose every few hours. It took a while but we got his lungs good and clear this morning. I'm giving him extra water and his nurse, Kelly, suggested an expectorant to loosen the junk even more. He specifically wanted to watch The Jungle Book this morning. When I'd put something on, he'd just keep making loud moaning noises. Finally, after a few tries of other things, I grabbed his three favorite videos and put them in his face and asked which one he wanted to watch and he just stared at Jungle Book, stared at me, jungle book, me. Oh....so now he is satisfied and quietly watching his movie and the Christmas tree in his Christmas pj's. Little does he know that bouncing Bob and dancing Larry are just in the other room. Its getting close and Conner is getting so snotty but we MUST keep him out of the hospital!!!! I will keep trying really hard to keep his lungs clear so no infection will develop. John is doing a good job, too. He took care Sat. and Sun. and Conner is happy and fine! He loves his daddy. Conner smiles so big when John walks in the room. You'd think he was Santa.

Name:

Mommy

Email:

Date:

12 Dec 2000

Time:

22:46:00

Comments

Conner did fine today. I had to do some work outside the house so John took care of Conner in the morning and in the evening. He did a good job. Conner calls. He is saying, "aaaaaahhhuuuuuh." I think that means, "Where are you mommy? I am tired."

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

14 Dec 2000

Time:

13:25:18

Comments

We celebrated Conner's 17 month birthday last night. Mrs. Laverne McBride made a cake and it was still hot when Sonny got it at the drug store. He brought it to our house, we lit it up and used it as the birthday cake. And ate it! Delicious! Conner was watching tv in the front room with his grandparents. We turned out the lights in the den and lit the candles on the cake and pulled Conner in on his wagon. His eyes were so big-even though we do this every month. We sang "happy birthday" and he smiled so brightly. However, when we blew out the candles and turned the lights on he went silent and about ten seconds later he managed to push out a loud squeal of a cry. We looked at each other during those ten seconds and asked, "Is he breathing?" Then we heard the cry and saw the tear he squeezed out. So, we turned the lights out and did it all over again. We go through the same drill every month-singing twice and blowing out the candles twice. I had to take him back and put his bipap on because he kept crying. We just couldn't capture the moment again that had made him smile so big right when we wheeled him in so he was unhappy. He was actually very tired. There should be new pictures on the photo page very soon. Check them out. They are from the day we took Christmas pictures, from Conner's birthday and there is a gross picture of the hole in Conner's stomach. John wanted to take that picture and then put it on the page. I was putting in a new g-tube and that was the hole when I took out the old one. It looks dark but it was actually nice and clean! Anyway, hope you enjoy viewing.

Name:

Auntie Reea

Email:

Ree-a@msn.com

Date:

14 Dec 2000

Time:

13:29:06

Comments

Hi Sweet Conner- I just wanted to wish you a Happy 17th month Birthday :o). "happy birthday to you, happy birthday to you"- ok, I know you really don't want to hear me sing. I hope that you are feeling well today. I wish I was closer so that I could visit you often. You are always in my heart and prayers. Give your Mommy lots of those sweet smiles :o)!!!!!

Lots of hugs and kisses xoxoxo

Name:

Mommy

Email:

Date:

15 Dec 2000

Time:

01:43:38

Comments

Okay, I read that glutemine reduces ketone levels and Conner has had some horrid bad breath lately since I stopped giving him the glutemine. I only stopped giving it to him because the manner in which I prepare his formula changed and I just didn't work the glutemine back in. So, I am going to work it back in and I will report the status of Conner's breath. I thought maybe it was cold symptoms but the ketone thing may be it. I know he is getting enough food because he is fed every four hours just after his body uses up the last meal. I'll report. I know you are hanging on the edge of your seat.

Name:

Mommy

Email:

Date:

16 Dec 2000

Time:

00:12:44

Comments

Conner is doing okay today. But we are getting very concerned with his deterioration. It is so noticeable and sad. We feel forced to think about the balance of comfort and suffering and our responsibility as loving parents to protect our child from anything that could hurt him-like this disease. We can't take the disease out of him but we can make decisions that would remove his spirit from the diseased body. I don't think there is any decision that we need to make at this time but a big decision is to not take Conner back to the hospital. We talk about it a lot and we just feel like we would rather have him for a shorter time than to see his longing to be free from the pain and aggravation of the hospital. It is not pleasant for him at all. The staff is caring and nice but the process is not. I don't know how we will react when the time comes but I know that I would like to promise him that he will not have to go back. He will be at peace from this point on. No more drama! I hate the hospital drama! It is not good. We aren't trying to save Conner's life but trying to make him as comfortable and peaceful as possible for as long as we can. I may change my mind tomorrow but John and I feel pretty strongly about this. And we are so scared that he may get sick soon. We just don't know. Conner will let us know when he's ready to give up. I just hope its not after he's suffered for a long time. Sorry to be so negative. Maybe things will get better in the next couple of days and we'll have a better outlook. Whatever that means...

Name:

Grammy

Email:

Date:

16 Dec 2000

Time:

10:50:08

Comments

abbyftujkkkkcomner That is Abby's message. We just looked at all the new pictures. I, personally could have done without the g-tube hole, but that's just me. It may hold some fascination to others. How are you guys doing today? Abby, Lauren and I plan to go see Mammaw today on her birthday. I know you all are going through some very hard realizations and have such difficult decisions to make. But I do believe that the decision will ultimatley be out of your hands and just a natural progression of what must be. Conner is a wise little man and he makes his needs and desires known. His spirit is strong and will live on long after it is released from his frail little body. I love you now and I'll love you always, little man.

Name:

Laura M.

Email:

lmarsh@frontiernet.net

Date:

17 Dec 2000

Time:

17:18:46

Comments

Thought of all of you this morning (as I do every day). In church, Dr. Adams spoke of how being one of God's chosen people doesn't promise us an easy life or a life free from pain. Among the many examples he gave, was Mary watching her son Jesus suffer and what she must have felt. John and Betsy, I thought of both of you as well as Miss Connie. All of you are some of the most wonderful people I know and your lives are about as far from easy (and I'm sure you feel from normal) as they can get right now. In my heart of hearts though, I believe that Conner was placed on this earth for a very special reason. He already means so much to so many and always will. However, none of that makes the suffering he (and you) are enduring fair. I hope you all take some comfort in knowing how many love you and are praying for you. We haven't forgotten to come by ... ashley june is germ infested (diagnosed with bronchitis, 2 ear infections and pink eye on Thursday). If we can ever all get better in our house, I want to get them together. I hate flu season! Much love and give special angel Conner a big kiss!!!

Name:

Mommy

Email:

Date:

17 Dec 2000

Time:

22:05:15

Comments

Thanks Laura. We really do appreciate the thoughts and prayers. We actually went out last night while Connie and Sonny watched the baby. Everything was fine. Conner just watched videos, talked and went to sleep. I know he enjoyed his grandparents. They give him extra, extra special love. By the way, his aweful breath has subsided for whatever reason. He also has teeth breaking through the top of his mouth. You can see the teeth on the top and the bottom stretching his gums in the form of the teeth but just not breaking through. We did intensive rubbing yesterday and when I just barely touched where there looked like a tooth popping through today they started bleeding. We numbed and gave some tylenol. I wish they'd just come on in. I know that bothers him so much. He'll look so cute with some teeth (like he doesn't already).

Name:

Mommy

Email:

Date:

18 Dec 2000

Time:

22:09:38

Comments

Conner had a really good day today. I had a hard night though. I couldn't sleep and when I finally would Conner would start to stir or wake. John came back home from work and helped me so I could sleep which was wonderful. Thank goodness he had a good day. He got a haircut today. I cut the curls. John made me! I would have let it grow and grow. His teeth continue to bug him though. We'll keep working on them.

Name:

Stacye W. Johnson

Email:

stacyejohn@hotmail.com

Date:

19 Dec 2000

Time:

09:18:21

Comments

Hello Betsy, John, and Conner! I hope this message posts! I keep trying to no avail! I love all of the new pictures of Conner! The Christmas pictures are beautiful. I have many wishes for your family this Christmas the most important is that I hope Conner stays in good health! Betsy I can tell through your entries how much you are enduring. I pray for God to give you strength daily. I wish you each a Merry Christmas and know that the Johnson's will continually keep you in our thoughts! Much love, Stacye

Name:

Rebecca K. Padfield

Email:

compuball56@hotmail.com

Date:

19 Dec 2000

Time:

11:35:13

Comments

Merry Christmas everyone! I pray each day for things to get better in your family and for Conner to stay in good health as much as possible for someone with SMA Type 1. I too, am suffering from a neuromuscular disease. Haven't gotten the diagnosis yet, but I am getting more major tests beginning at the start of January. I mainly have slowly progressive weakness that doesn't go away, nauseous feelings, painful joints, electric-shock like feelings, spasms in my limbs and trunk and a lot of panic attacks. But of course, my symptoms aren't as severe as Conner's and I feel very sorry that such a sweet, nice child is suffering so much. I don't know if you do what I do when I'm feeling stressed or sick, but when I think positive (everything is okay, nothing bad is going to happen, God, please help me and stuff like that), any panic attacks or feelings of nauseous go away after a little while or the suffering doesn't feel as bad. I suggest trying to think positive whenever you feel under stress, sick or helpless to help Conner feel better or whatever. I know things are very tough for all of you right now by reading the journal entries, but hang in there and know that God is with you, a lot of people are praying for all of you and things will get better.

Name:

Mommy

Email:

Date:

19 Dec 2000

Time:

21:29:25

Comments

Thanks Rebecca and Stayce, you help us stay positive. Conner has been communicating so well lately and that is just so exciting for us. He was calling last night, "NaaaNaaa, DaaaDaaa." So we went in there and he smiled so big. Then he slept. He has had such a good day. The therapist came today and he got a good workout. He told Ms. Billie (helps with the house and helps love Conner) he was one today. I told him to show her how old he is. "You're one,one,one." And he holds up a finger to show he is one. If I say, "TELL her how old..." he will pull his hand to his mouth because I said, "tell," instead of "show." He wants to talk and he thinks the way you talk is by using your fingers to move your lips since that is what I did with him when I'd say, "Say 'Momma'." He can "show" you he loves you by putting his thumb and middle finger together but if you say, "Say 'I love you.'" he'll pull his hand to his mouth. He'd rather SAY it but he can't do the words. He tries and that is so cute. Just when we were getting discouraged, he's pulled out something to amaze us. That's Conner! That's why we love him. He's our little angel-medium to God and the angels and heaven above. Love,love.

Name:

Grammy

Email:

sangar@mindspring.com

Date:

20 Dec 2000

Time:

07:56:01

Comments

Hi Conner, Betsey, John Wish you were here to enjoy the snow with us. Abby made snow angels yesterday. Today the snow looks kind of skimpy but the cold is penetrating. I have some deliveries to make to my customers today...I'm not working too hard this week, no one is really interested. It seems all the businesses are winding down. Conner, say "I love my Grrrrrammmmmyyyyy..." 'cause Grammy sure does love her Conner. Hope we can have a visit after Christmas. I love you all and know how positive you can be, Betsey. Even in the face of the worse possible circumstances, you have always had that little spark that can't be put out, it just keeps bubbling up to the surface and life just has to be GOOD and fun and meaningful. You are a true survivor...Welcome to the Club! Love you all

Name:

Mommy

Email:

Date:

20 Dec 2000

Time:

22:11:28

Comments

Hi GRRRAAAmmmeeeee-like Lauren used to say. I feel better mom. Since I had started worrying about Conner a couple of weeks ago I stopped going to the gym and consequently started getting more and more depressed. I managed to get out two days in a row which seems to be enough to get my energy back and my attitude adjusted for now. I have to keep going. It makes such a difference in my ability to care for Conner when I can get to the gym and get some energy. I suppose it is like my antidepressant drug-maybe a little cheaper. I don't feel like I'm dragging-like every chore is like climbing a mountain. I told John I WILL have a good day tomorrow, no matter what. Conner and I will do something fun. We'll make a picture! I'll post it on the page. We'll see....Conner started his day crying at the nurse. Something's up with him today. His pulse rate isn't normal and secretions thicker and colored. Maybe we'll handle it.

Name:

Lauren Carlisle

Email:

Date:

21 Dec 2000

Time:

21:40:59

Comments

Dear Cousin Conner, I wish you weren't so far away.I miss you very much.I love you so much.I will never forget you.I promise.

Name:

Lauren Carlisle

Email:

Date:

21 Dec 2000

Time:

21:41:04

Comments

Dear Cousin Conner, I wish you weren't so far away.I miss you very much.I love you so much.I will never forget you.I promise.

Name:

Grammy

Email:

sangar@mindspring.com

Date:

22 Dec 2000

Time:

07:49:44

Comments

Well, it's time for Grrrraaaaammmeee to get out in the icey weather again...last day of work for 10 whole days. I'm very excited. We'll spend some quality time together. Wish you could be here to greet Santa with Abby, but you'll have fun with Mommy and Daddy. Feel honored to get an e-mail message from Lauren...she's never e-mailed her old wrinkled gray haired grammy! Betsey, keep pushing iron and have a good day.

Name:

Kim Brannen

Email:

Date:

22 Dec 2000

Time:

10:08:02

Comments

The strength of your family is amazing. You have reminded me to appreciate every little thing and take nothing for granted. Thank you. I will continue to pray for each of you. Please know that God loves you very much. Knowing God takes faith, focus, and follow-through, and Jesus assures us that we will be rewarded. Continue to ask for more knowledge, patience, wisdom, love, and understanding. He will give them to you! Celebrate the birth of our wonderful Savior this Christmas with your little angel. Merry Christmas. Please call us if there is ever anything that we can do.

Name:

Brent, Tracy & Cole

Email:

brentandt@yahoo.com

Date:

22 Dec 2000

Time:

22:32:23

Comments

Betsey- Thank you so much for keeping us updated! We loved the new pictures! It looks like th

Name:

Betsey

Email:

Date:

23 Dec 2000

Time:

14:02:14

Comments

Thanks Tracy. Sorry if you're having problems posting. Keep trying! or email us. Conner has had a couple of good days. He has spent some good, quality time with his Grandmommy Connie and Granddaddy Sonny. They have endless amounts of love for their angel baby. He knows their specialness and that they are the ones that are supposed to let him get away with anything because of his piercing cuteness. That is pretty perceptive considering we all let him do anything he expresses a desire to do. He's got lots of presents from Santa on the way. Santa has actually visited several times already in the past few weeks and given us special permission to go ahead and play with the new toys. I hope you all enjoy your families this Christmas. Don't fight! Enjoy your babies and your nieces and nephews. If we can enjoy our Christmas, you have no excuse not to enjoy yours. No matter what. In fact, this may be our best Christmas for the next decade or so-so we better love each other real good, right?

Name:

Mommy

Email:

Date:

25 Dec 2000

Time:

01:16:25

Comments

Well, Conner is fast asleep and Santa has already set all his stuff out. He has lots of little friends waiting on him. Dancing Larry and Bob, Elmo, Buzz-all his favorite dudes. I can tell you that this Santa is tired but excited about tomorrow-smiles and good food. I am so thankful to be home.

Name:

Mommy

Email:

Date:

25 Dec 2000

Time:

23:50:42

Comments

Conner had a GREAT day. We woke up and rolled Conner into the den on his wagon and he saw his little friends and presents by the tree. He couldn't have cared less because we took him away from his video. But once we started opening cool presents he was happy. We all ate good food and enjoyed the day. Conner never took a nap and fell asleep in the middle of the floor with his bi-pap on in the late evening with everyone talking around him. He was so tired but insisted on staying awake as long as possible. It was so nice to have the family surrounding us. I hope I will have more surrounding us this week.

Name:

Mommy, Grammy and Conner

Email:

Date:

27 Dec 2000

Time:

14:53:04

Comments

Hey there, we are having a good time with Grammy here. Billy(my brother), Shannon, and cousins Lauren and Drew are on the way!!! Lauren is Conner's older 8 year old cousin and Drew is exactly one month older than Conner. We are so excited!!!

Name:

Mommy

Email:

Date:

28 Dec 2000

Time:

00:26:56

Comments

Conner had a nice day visiting with cousins Lauren and Drew and Uncle Billy. Drew came in Conner's room while Lauren was reading to him and he just couldn't take his eyes off Drew. He smiled and smiled at him. Drew was talking jibberish 1 1/2 year old speech and it was like Conner knew his language. Conner enjoyed his cousins so much-laughing and smiling-lots of activity...more than I am used to...I am used to an immobile,quiet 17 month old. But they are good kids and we are so very happy to have our cousins, uncle and grammy!!!John is probably a little overwhelmed. We are thinking of Grandmommy Connie and loving her and hoping everything will get better. Love, love.

Name:

Sheila Dupree

Email:

Date:

28 Dec 2000

Time:

17:55:35

Comments

Betsy, Thank you for sharing with us. One of the greatest gifts is knowing that Conner is enjoying Christmas. You have done a great job on this site and in taking care of your family.

Name:

Grammy

Email:

Date:

29 Dec 2000

Time:

19:43:24

Comments

Well, I miss you little man, but I enjoyed my short visit and all the smiles you bestowed upon me. They tell me that everything is fine in your little world. I need to know that. On my next visit, I want to spend more time with your Grandmommy. I hope she'll be feeling like a trip to the ocean for some old fashioned "girl talk" and just plain doting over our beautiful grand children, especially the one we have in common...YOU. Love you all, Grammy

Name:

Mommy

Email:

Date:

29 Dec 2000

Time:

23:38:42

Comments

Hi, we are sad that our company is gone but we enjoyed you while you were here. Conner loved laughing at Lauren and watching and listening to crazy, silly Drew. I had a fun time, too. Also, I wanted to make sure anyone who is interested in Conner's disease and a cure for Conner's disease should check out the fundraiser event on the front page at the bottom-click on believe-miracles and then go to "next" after you've read the page. It will be in Savannah on Feb. 10. We went last year and we had the best time. It was hard last year because we were just learning about the disease and we weren't sure what it would be like. We got to dress up and go spend the evening with hundreds of people who were there specifically to help fund a cure for my child's disease. It was fun dancing and eating and seeing the things to bid on for auction but it was so touching when they had a presentation on sma-Dana put a picture of Conner up with the other kids. While it was a fun night, I was so touched and cried at the efforts that are being made to help kids like Conner. Dana Swanson in Richmond Hill has twins with sma1 and she is responsible for this big and successful event. She, with the participation of friends and family like you, has raised so much money to find a cure. We will definately be going this year and if you are interested at all, please go!!! We would love to see you and have your support in this capacity but more you will have a good time and feel like you've made a difference in Conner's name. Thanks for loving Conner and helping us as much as you already have. To learn more about just how close researchers are to finding a cure, you can go to www.fsma.org. Thanks!

Name:

Grammy

Email:

Date:

31 Dec 2000

Time:

08:50:42

Comments

We're here at Frankies. It's beautiful here. I didn't sleep too well last night. I want my Abby. I hope we can get past this unfortunate time. How is Conner? I miss you all. I'll try to call when I can tell you things are great! I hate feeling empty. Love to you all.

Name:

FRANKIE lEATHER

Email:

lADYTATA@WEBTV.NET

Date:

31 Dec 2000

Time:

09:02:05

Comments

hI BETSEY, I AM TRYING TO FIGURE OUT THIS MACHINE..EEK. tHE PICTURES OF CONNOR BEAUTIFUL...WE WANT TO PRAY FOR YOUR NEW YEAR,AND CONNORS. WE WISH WE COULD B E CLOSER.happy new year !

love frankie

Name:

Betsey

Email:

Date:

31 Dec 2000

Time:

14:02:45

Comments

Mom, I hope you can relax and have a good time. Conner and I are going to party tonight! Just kidding. He'll probably be asleep so we'll celebrate early. I am not sure I can explain the concept of the new year to Conner. Christmas was easy since we had tangible things like presents to convey that something was happening. Maybe we can practict the countdown. He'll like that. I'm just glad I get to spend the time with him. Each event that passes is a gift considering we had no idea if he'd be alive this long. He's doing pretty good (sleeping and managing to keep from getting sick) right now and I am so proud of his strong will to stick around. Conner is a strong little boy and very tough. He bounces back from every difficult moment with a smile. Precious.

Name:

Mommy

Email:

Date:

01 Jan 2001

Time:

22:22:48

Comments

Hard day. I don't even feel like reciting it. For whatever reason poor baby couldn't sleep, it was making him and me miserable. PLEASE sleep. please stay asleep. please rest. If he can just get a good night's rest he'll be fine tomorrow. His chest is clear, I don't know WHAT it is. Poor babe.

Name:

Mommy

Email:

Date:

02 Jan 2001

Time:

14:21:47

Comments

Please check out "Conner's story" if you are interested in our thoughts and feelings and facts about Conner's diagnosis. I posted this so that other mothers, especially newly diagnosed mothers, would have some information about how we handled Conner's diagnosis. It helped me and still does to read the other families' stories. Conner is doing better today but still had a difficult night and morning. Lots of stuff to clear from his chest this morning. I thought his chest was clear but it wasn't this morning. I hope he isn't getting a cold. Oh, I hope. He seems fine now though. So, we'll see.... The nurse had to give him the pnuemonia shot today but he didn't seem to even care. I put some emla on to numb the skin, then the massager over it after the shot and he cried for about 1 minute, maybe. He just kept laughing at Bob the tomato.

Name:

Mommy

Email:

Date:

03 Jan 2001

Time:

23:31:25

Comments

Conner did okay today. His therapist came and gave him a good workout. We are planning to go the fundraiser in Sav. but need to find a babysitter for the night. We guess we'll be needing a nurse. We have until Feb. to find one so I won't worry. We just have to hope Conner is well anyway. You never know. Can't plan anything, not even a week or couple of days. You just don't know. I guess its that way for any parent though. I don't know... Things are going okay for now. I went and visited cousin baby Jim for a little bit tonight and I just stared at his cuteness while he slept. Precious babies everywhere.

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

04 Jan 2001

Time:

08:18:15

Comments

Betsey, Just wanted to let you know what a beautiful site you have created. I really enjoyed all the photos. You are all in my thoughts and prayers EVERY day. Love to you all, Mandy

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

04 Jan 2001

Time:

08:41:58

Comments

Betsey, when I wrote awhile ago, I hadn't taken the time to read through all the entries. Yes, I too cried. I am so amazed at your family's strength and encouragement. Yes, I realize you have your days where you just need to vent and I hope you realize that that is FINE. If you didn't I would REALLY worry. I seem to get frustrated with Colby's frequent colds, cough, etc. because I don't know what to do, but then I realize that you do that every day. Maybe soon we'll be well enough to come visit. I do pray each day for you, John, Conner, Connie, Sonny, and the whole family. Hope Connie's pain is subsiding. Give her my love also and well as John and that precious Conner. Thanks for being an inspiration to me. Love to you all, Mandy

Name:

Mommy

Email:

Date:

04 Jan 2001

Time:

23:57:50

Comments

Thanks Mandy for reading everything and thinking of us. I know how much you care about this family. We appreciate you very much. Today was one of those days that went moment to moment as opposed to a good or bad day or even hour to hour. One moment Conner would be happy and fine and the next he'd be giving me all the signs that something was really wrong even beyond the regular stuff I'm used to fixing fast. I went and worked for a while and John watched him. I got back and I was alone with him later this evening he started choking and turning blue and all my efforts were not helping. I needed someone to help me fast and I got on the cordless phone and started calling around (I had practically forced John to go eat at ElSombrero with his older brother) but Daniel came on from his parents but I was scared. I usually don't panic and I didn't then but I was really scared. I don't want to lose him like that. By the time Daniel got here, I had him making noises and got Daniel to help me get all the other stuff that we needed that was still in the other room. I had the oxygen in one room and his other de-clogging things in his bedroom and needed someone to go get it all while I was working on him. Anyway, no need to keep talking about it. It is over and he fast asleep and his numbers are perfect. He will have a good night and we will have an Elmo movie marathon tomorrow if he so chooses.

Name:

Betsey

Email:

Date:

05 Jan 2001

Time:

12:46:22

Comments

It is an ear infection. The drainage started today. Gave medicine. He is fine.

Name:

Cousin Lauren

Email:

Date:

05 Jan 2001

Time:

22:07:08

Comments

Dear Conner, How are you my sweet baby?I love you!You still wathin' A Bugs Life?I miss you!!!!!!!!!!!!!!!!!!!

Love, Lauren

Name:

Shannon Carlisle (aunt shannon)

Email:

socarlisle@yahoo.com

Date:

05 Jan 2001

Time:

22:43:06

Comments

Dear Conner,

This is the first time I have visited your website. I am not sure why. The pictures of you are so beautiful. I am so sorry I didn't make it down this past visit. Drew really enjoyed looking at all the pictures. I know that he and Lauren had a great time visiting with you.

I hope that you are feeling well and I can't wait to see you. Please know that your Uncle Billy, Aunt Shannon and your cousins Lauren and Drew love and miss you!!!!!!!

Please give your mom and dad a hug and kiss for us and tell them we said hello.

Name:

Mommy Betsey

Email:

Date:

06 Jan 2001

Time:

12:37:02

Comments

Hey cousins and aunts (and friends and strangers)! We have another big cousin coming today and are we excited or what? Abby Baby is on the way! Conner seems to be doing okay. I overreacted to him last night. John was "on duty" and I heard Conner at about 4 (everything happens about 4 in the morning) and I could not go back to sleep until I knew he was asleep. Any other time I know he's well and he'll fall back asleep eventually but knowing he isn't feeling good made it very difficult to go lay down even knowing that John had an eye on him. I am his MOMMY and I must know that he completely comfortable-I think he was- now that I am awake and sane-but I couldn't be convinced this morning until he was asleep. He communicates best with his eyes so I just laid there on his bed and stared at his eyes to see if he was trying to tell me anything. But he was saying, "If you just go away I might get some rest." He's making Furby(sp?) sounds right now. Purring furby sounds with the stuff in his throat. Okay, gotta clean up. love,love

Name:

Betsey

Email:

Date:

07 Jan 2001

Time:

14:58:33

Comments

Company's gone. Poor Abby had a fever all of the sudden last night. We were playing having a good time then she was lying down and started burning up. It was under control when they left but poor baby. I was washing my hands like crazy and spraying down everything with Lysol over and over. I hope she feels better quickly. Nothing worse than a sick baby although Abby never acts like she is sick. She has an incredible ability to continue to play no matter what. I am giving the Zimac to Conner and myself. Hopefully we won't get whatever it is.

Name:

Email:

Date:

07 Jan 2001

Time:

15:00:53

Comments

Zicam-i always get that wrong-it's to help keep the cold virus from attaching to the little things that the virus attaches to in your nose

Name:

Auntie Lisa

Email:

Date:

07 Jan 2001

Time:

16:29:22

Comments

Hello Dear Conner! I just wanted to let you & your mommy know we will be down there next month for the fundraiser. I am looking forward to it, we really enjoyed last years fundraiser it was a wonderful evening. It is so nice to see there are so many caring & supportive people out there. I keep you in my prayers daily. Tell your mommy I said hello & we will see you very soon!

Miss you!!!!!!!!!!

Name:

Mommy

Email:

Date:

08 Jan 2001

Time:

13:40:14

Comments

The new nurse is here!!! Hooray! Hope Godbee is a friend and now Conner's nurse. She has been wonderful today learning all of his machines and how to handle his delicate little floppy body. He's a little cranky but I think he'll have a good day. When he's not fussy his color looks good.

Lisa, I am so glad you are coming. It will definately be fun now! I hope others will go. It is such a fun time and bidding on that auction stuff is fun because once you sign on the sheet for something you want then you start getting competitive if others start bidding on the same items. Last year, Lorie C. got me this basket with hair products and stuff in it and I felt like it was Christmas-it was so nice. Anyway, they had a puppy up for auction last year. They have real expensive stuff and little things too. John's dad got a signed picture of Dolly Parton. No one wanted to put it in his house so it has ended up at Sonny's drugstore. Julie ended up paying a ridiculous amount for a bulldog picture. But she REALLY wanted it. I need to find something nice to wear. Since I have a nurse now, I can go shopping! Okay, talk later, Betsey

Name:

Grammy

Email:

Date:

09 Jan 2001

Time:

09:03:47

Comments

Dear Conner, Grammy is missing you today. Abby is feeling better. I hear her upstairs "going to the potty". We looked at pictures of you and her last night. I think she misses her little buddy as much as the rest of us. I'm glad you are in your nice cozy warm house today with a nice cozy warm mommy to love you and play with you. I'm looking out the window and it is NOT nice and cozy out there where I'm going today. I have my trusty Zicam in my purse ready to squirt at the first sign of discomfort. I look forward to the fundraiser next month. Should we try to coordinate getting tickets so we can all be together?

Name:

Mommy

Email:

Date:

09 Jan 2001

Time:

14:05:30

Comments

We should definately sit at the same table mom.I hated that we didn't last year. I must do that NOW. I sent some new pictures to be put on the photo page and they are there now but the last one was a mistake. I meant to send another one. So, it should be fixed soon. It doesn't make sense. I knew I'd do that! Conner went out in the snow today! He hasn't been out in a while because it is cold but I bundled him good and got him out to see the snow and have it fall on his eyelashes. I got him on video. John wants so badly to get home from work before the snow stops so he can take him out and see Conner's reaction. Conner said, "huhhhh, uhhhhh." You may not know it but that means, "I think the snow is cool, mommy."

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

10 Jan 2001

Time:

10:36:23

Comments

Hey Conner! Just wanted to check in on you today. (Well, I check on you each day, but I decided to write today.) Hello Betsey and John. I know you were excited and relieved to get the nurse the other day. Hope she's working out well. Love to you all, Mandy

Name:

Mommy

Email:

Date:

10 Jan 2001

Time:

15:37:33

Comments

Conner has had a good day so far. He's is napping so nicely right now. The nurse came this morning and he was being super cranky and crying. Once we got him some tylenol3 and mylanta he calmed right down and enjoyed the rest of his morning. If he sleeps well everything else usually goes well. Wednesday we will have a respiratory therapist student come and learn how to care for Conner so she can help "specialize" babysit for John and me. Oh baby is crying-talk later, Betsey

Name:

Mommy

Email:

Date:

10 Jan 2001

Time:

23:28:39

Comments

Conner is definately not feeling well. We are really trying to keep the lungs clear despite whatever this is whether it is ear infection mess or something a little more. It felt so good having help today. My days just go so different when I can just go in and out of Conner's room just to kiss on him and not have to do the yucky stuff. I am so much more positive when I have help-although John is help, too. But I get really scared when Conner is sick because we do not want to go to the hospital and we know what that means if he gets any mess stuck in his lungs. My reasoning is that if we take Conner to the hospital, we are deciding we want them to save his life above anything else. We want comfort first, life second. That is a difficult commitment and we just don't know until we get there whether we will be strong enough to put Conner's comfort above our inability to lose him. It is a gamble because the suffering could buy him a year more but we don't know the quality of that year and if it will be a year of suffering- we not only would have broken our commitment but prolonged his discomfort. I just don't know. I wish Conner could tell me what he wants. But as a child he would want his mommy and daddy. Ultimately, I know we'll do the right thing-for Conner. Others may not agree but I know we'll have Conner's welfare, as we see it, at the forefront and how can you go wrong with that? I am just rambling but maybe by me being such a big mouth about my pain and feelings you will understand others who are going through pain that is equivalent to mine-or maybe just know what we are going through and how to approach us. All I know is that I am not ready to lose Conner but I will never be and this isn't going to be easy. Nothing anyone can say will make me feel any different. I do appreciate him now and we will have a good day tomorrow no matter what. Thanks for caring about us. We appreciate it dearly and don't know what we would do without the love we have received. It makes a difference. Thanks Mandy... talk later, Betsey

Name:

Lucie McKinney

Email:

lucimck@yahoo.com

Date:

11 Jan 2001

Time:

08:33:15

Comments

Dear Betsey and John, I love the pictures of all of you at Christmas. Mandi, Mark and I pray daily for you, John, Conner and Connie. You are such wonderful parents. Although we are up here in the mountains we still miss your wonderful family. I always call Connie and give her a weather report. I heard it snowed down there the other day. I hope Conner enjoyed it. Please know how much we love you. Miss Lucie

Name:

Mommy

Email:

Date:

12 Jan 2001

Time:

01:00:09

Comments

Thanks for thinking of us....Conner is doing better this evening. Hope had a time with him this morning but we got him cleared and he really had a pretty good evening. No more fever and pulse rate decreased and o2 is high. He just has a bunch mucous which can be so hard on Conner's throat and nose(sinuses) because of suctioning so much. He seemed happy tonight and laughed at Mommy when I acted silly and smiled big as Daddy kissed his cheeks and talked sweet to him. So, we did have a good day no matter what!

Name:

Stacye Johnson

Email:

stacyejohn@hotmail.com

Date:

12 Jan 2001

Time:

08:57:08

Comments

Good Morning Conner, Betsey, & John! The new pictures are great! I haven't visited the site since before Chirstmas because my internet want work at home! I love reading all of the journal entries Betsey! It sounds like Conner is doing pretty well! I continue to pray for you and your family on a daily basis. It was good to see you at Sandra's! Next time I am home I would love to come by and spend some time with you and Conner if that would be o.k.! The dance in February sounds fun. I will contact them today and see if any tickets are left! Maybe Wendye can come home and go with me! I will tell daddy about it, too. We will see. Anyway....stay strong and know that many people are praying for you and your family. You make me realize how precious life is through your entries. Thanks. Much Love, Stacye

Name:

Mommy

Email:

Date:

12 Jan 2001

Time:

21:48:10

Comments

Conner had a pretty good day today. He had a hard morning but got straight as the day went on. The physical therapist spent 50 of her minutes watching Conner get his treatment and he at least got 10 min. of therapy. But that is how it happens sometimes. Bad news is that we are all sick now but the good news is that Conner went swimming in the bathtub with his new life vest with a head piece. He has increasingly come to hate the water since he began choking with each bath no matter how tailored it was to his needs. We have to get him to like the water again somehow since it has the potential to be a good therapeutic tool for his joints and muscles and can be fun for him. So, the vest was a success tonight after initial crying. I just "talked it up" until he finally, after only one choking episode, started smiling and saying, "uh-huhhhh, uh-huhhh." I am so glad he liked it. We have now re-expanded the number of activities he can participate in. I am looking into really sensitive switches and other devices to make life a little more "exciting" for Conner. We have to prove to him that life extends beyond videos. He doesn't believe us.

Name:

Robyn Petty

Email:

steele815195@aol.com

Date:

13 Jan 2001

Time:

16:45:59

Comments

Betsy conner's story is so precious and so sweet. I wish there was something - anything I could do to make life just a little bit easier for you. I just pray for you, for John and for Conner. I agree with you - life is so unfair sometimes. I know God is hurting for you as much as you are hurting. Conner is beautiful and I am sad that I don't know him and don't get the opportunity to see him. I wish I could give him a big hug and a big kiss. Please give him one for me. I can't imagine what you are going through or how hard a day in your life must be. Please just know there are so many people who care so much about you, John and Conner. I feel so privileged to know you. I don't think in my life I have ever known anyone as brave and courageous as you are. I am so proud of you, you are a very special person and Conner is so lucky to have you as a mom. I know, it is obvious in the things you say about him, you feel equally as lucky to have him as a son. He is so precious and not a day goes by that I do not pray for him and think about him. He is an angel here on earth. We love you all and think about you all the time. Robyn

Name:

Mommy

Email:

Date:

13 Jan 2001

Time:

19:02:20

Comments

We are sick. Yuck!

Name:

Mommy and Daddy

Email:

Date:

13 Jan 2001

Time:

19:04:25

Comments

Happy B-day to Conner! We have to skip this one. We'll just sing to him and light a candler in a cookie that Mr. Green sent down. Conner is 1 1/2 today.

Name:

Email:

Date:

13 Jan 2001

Time:

19:05:35

Comments

candle-the decongestant is getting to me, can you tell?

Name:

Mommy

Email:

Date:

14 Jan 2001

Time:

02:14:18

Comments

Sorry Robyn, I didn't see your message. Thank you for thinking of us. Thanks so much for yours and everyone's encouraging words and thoughts and prayers. Robyn, you've done so much! Just by checking this site-not writing or anything-but just by reading, you are helping. You are showing that you care about what happens to Conner. What if someone cared that much about your child to take his or her time out to call or check on him? Wouldn't that touch you? I feel the same way. I don't ever take it for granted. I am just amazed at how cared for Conner is and I am so proud of him for living up to the angelic standard that deserves all the love and attention he gets. Just by caring, thinking, praying people have done so much for Conner and us. This web page is for you to get to know Conner. So many of you can't get to us and we can't get to you. So, this was a way to get Conner to you. Thanks. By the way, Conner did good today. He had the evaluation with the speech or communication therapist-I think that's correct. I am excited about finding new ways to communicate. Conner was so sweet today. He did so good and he took care of us since we were sick-he was especially easy to take care of today despite the fact that he is sick, too. What a sweetie pie.

Name:

Belinda DeLoach

Email:

belinda2@frontiernet.net

Date:

14 Jan 2001

Time:

18:58:29

Comments

Dear Betsy and John: Thanks for allowing me to come to your home and evaluate Conner's communication skills. He is a precious child who seems so eager to communicate. Thanks for sharing Conner's web page with me. Your family is in my prayers. I will be getting in touch with you soon. Belinda

Name:

Bessie Whitlock

Email:

bessie_w@yahoo.com

Date:

15 Jan 2001

Time:

10:53:51

Comments

Betsey, I just read your story and am bawling my eyes out. I really don't know what to say. I'm thinking about Conner; and you and John in your care for him. I love you three very much! I enjoyed seeing your photos-- especially your christmas ones. Thank you for sharing the story of Conners life. I will be by to see you soon. Give Conner a big kiss for me!

Name:

Grammy

Email:

sangar@mindspring.com

Date:

15 Jan 2001

Time:

13:29:03

Comments

Hi Riggs Family, Hope the cold bugs are leaving your house. It's hard to all be sick at once. Wish I were closer and could help you. I'm never much help when I'm there, but I could at least fetch and feed. I think of you all and will come down soon and celebrate that big 30, Betsey. MY BABY IS GROWING UP! Gosh, if you're my baby is going to be 30, how old am I? I guess about 46? Does that sound decent? Yeah, sure. Conner, say Mommy is OLD.

Name:

Grammy

Email:

Date:

15 Jan 2001

Time:

13:30:40

Comments

I'm obviously in a hurry and didn't edit....see ya. Mom

Name:

Mommy

Email:

Date:

15 Jan 2001

Time:

14:16:23

Comments

Hi there. We're getting better. The cold medicine has been making me sort of active so I have been doing things around the house. So, now I want to go to Lowe's but Conner is acting funny and I am having a hard time getting out the door. I am sure he'll be fine. I just get a little paranoid that something bad or difficult to manage will happen if I leave. I try not to feel that way but I can't help it sometimes. Okay,I'm going. He's on his bipap and John is a good caretaker so I shall leave. I'll give him big mommy kisses and hugs and tell him they are from you.

Name:

Robyn Petty

Email:

steele815195@aol.com

Date:

15 Jan 2001

Time:

22:31:20

Comments

Hi Riggs Family! I must confess that since I have finally evolved into the 21st century and gotten on-line I have only visited this web-site. I have been reading all about the other SMA Angels and I am so touched by what I read. What an impact these children have made on the lives of so many. I feel honored to know Conner and your family. You are all amazing. Jeff and I will be in Georgia at the end of January and would love to see you guys. I read that you have all been sick - hope you are all better. Please give Conner a big hug and kiss from his friends here in Flower Mound Texas! We love you guys and hope to see you very soon. You remain in our hearts and prayers. The Petty's

Name:

Mommy

Email:

Date:

16 Jan 2001

Time:

13:37:11

Comments

Conner is doing so well today. He is actually sitting at an incline watching Elmo. The therapist thought he was doing well enough to put him up. He looks so good right now. His granddaddy is visiting right now but its hard to compete with Elmo.

Name:

Deborah Whitfield

Email:

dmwhit@frontiernet.net

Date:

16 Jan 2001

Time:

15:47:31

Comments

Hey Betsy, Your site is incredible! Yall are such special people and Conner is so lucky to be blessed with parents like you!!! You are so together. I have never been so impressed as I was that day at the clinic when you worked so hard on Conner and never seemed ruffled. You are one terrific mom. Call me if you need anything. Love, Deborah

Name:

Grammy

Email:

sangar@mindspring.com

Date:

17 Jan 2001

Time:

13:04:34

Comments

Hi Conner, Grammy is goofing off today and pretending to "work at home". It's very hard with Abby wanting to play. I'm looking forward to seeing you all soon. The fundraiser sounds like lots of fun. Betsey, have you sent info to Uncle Harry? It would be nice if some of the Columbia folks could come. I wish I had Tom Albright's e-mail and Jim Stein's. Maybe I could call them and get them, if not for this event, for future use. Give Conner some of those good sweet kisses from Grammy...and take a few for yourself. Love ya,

Name:

Betsey

Email:

Date:

17 Jan 2001

Time:

13:28:26

Comments

We are getting nursing soon because of Deborah. We started getting nursing as respite last year because of Deborah. I am finally getting the SSI stuff done with Deborah's help. Appointments, follow-up, physical and occupational therapy in the home...Deborah. The communication evaluation is the result of Deborah. Deborah may say it is her job but I know that she does far more than her job outlines. She is persistent-relentless in getting Conner what he needs. She is Conner's advocate and my counselor at times. I know that goes beyond her job. Since Conner's illness was discovered I have been in contact with professionals (doctors,nurses,lab technicians,secretaries,social workers, caseworkers, program coordinators, etc.) who have just done the bare minimum of their jobs and others who have gone so far beyond. Deborah Whitfield, Holly Eckles and Jill Burnett, Terri Bland, Dr. Deal and Kelly Deal(nurse Kelly) have all helped Conner in ways that just extend so far from what your job calls for you to do. What would we do if you all just did your job? We'd be lost. A lot of other people have helped us in other ways but lately these are the people that have been such advocates and gotten a lot done for Conner to make his life more comfortable. I learned something when John and his parents and I took Conner to the Dr.'s at John Hopkins in Maryland and Univ. of Med. in Newark, NJ. Both of those Dr.'s are at the top of their fields, one a pulmonologist and the other a neurologist. I learned that it doesn't matter how important or overloaded the professional may be, he or she can and should treat his patients with respect and the utmost concern to resolve the reason for the visit-not cure but resolve the issue at hand. Finding out the true issue is one trick and being smart enough to convince the patient that there is a resolution is the other. That is what those two doctors did for us and ironically they stood at opposite ends of the spectrum on their resolutions. However, they were smart and compassionate enough to make us feel like we were their only patients on those days. We left not feeling like Conner would be cured but that we had all the info. that they could share with us and we resolved that loving Conner and doing what we were doing was our answer. My simple point among all these words is that these doctors were very busy and have a lot to do. But they care so deeply about sma and finding out about kids like Conner that they made us feel like we were the important ones. That is what the professionals like Deborah do. That is how I know that I am dealing with a professional-when they make us feel like we are the special ones and they are there to help us-not to just do their jobs. Quite simple but you'd never believe the "professionals" we've come in contact with who act like their workload is too big to give us the treatment that Conner needs. Or they want to throw info. at us and not listen to what we want. Or like the er doctor told us, Conner is going to die, did we know that? and children shouldn't be brought in for fevers. What does that have to do with the price of tea in China? You have gotten earfull today, huh? Deborah-I appreciate you! Did you know how much? Now you know!

Name:

Betsey

Email:

Date:

17 Jan 2001

Time:

13:33:43

Comments

Deborah, I hope I didn't embarrass you by making you the focus of my long entry! I just think you and some of the others need to know that you do a great job and we like it!!!!

Name:

Mommy

Email:

Date:

17 Jan 2001

Time:

23:59:29

Comments

Conner had another good day. I am pretty sure that Conner had a cold before we did. I couldn't know that though until he didn't get sick this week. I think he has had colds before but I didn't know because I just thought it would have been a lot worse. I think one reason he managed well was because his tonsils and adenoids were out- so that avoided the opportunity for those infections. Anyway, whatever, he made it through fine and with no suctioning down the nose-just a little bit into the nose with saline and inexsufflating. Conner had his first bath in his Rifton bath chair tonight and it was like heaven! After initial crying, I (and John-that was funny) started singing to him and he got distracted. After he stopped crying he was fine and was trying to look down at the chairwith his eyes-which is hard when his head is lying flat against it. We sprayed foam on the tile and in his hands and he liked that. It was great for me to have both hands free to wash him. And he was perfectly stable and flat-no choking!! I think after a few chokeless baths, he will really enjoy the water again. I just put Conner to bed and he was staring at his black light reflecting the glow-in -the-dark dolphins on his wall. He had the biggest smile on his face from up under his bipap. I don't often get to see him go to sleep with a smile on his face. Very nice. I cried.

Name:

Alison

Email:

ast1127@hotmail.com

Date:

18 Jan 2001

Time:

07:59:04

Comments

Thank you to Deborah and all the others Betsey mentioned. You are appreciated more than you can imagine by Betsey's friends and family who are far away and can't be by her side. It is a comfort to me to know Betsey has such a wonderful people to help her get what she and her family need. Betsey - Your courage, strength and compassion are an inspiration to everyone who knows you. I am a better person because you are my friend. I think about you every day...

Name:

Robyn Petty

Email:

Steele815195@aol.com

Date:

18 Jan 2001

Time:

15:33:13

Comments

Hi Riggs Family! Hope you are all well and over your colds today. It is freezing in Texas, raining and yuck. We expect ice and maybe snow. I am so glad Conner is enjoying his bathtub again. It sounds like he is so happy despite his medical obstacles. He has such a loving Mom and Dad and that makes for a happy baby. I love the pictures of him -- he is adorable. I told my neighbor about the website and she read all about you guys and ask me all the time how everyone is doing. It is funny because we talk about you guys like we have both known you forever. She tells me that they are praying for you. Give Conner a big hug and kiss from us. Hope to see you soon. You all remain in our thoughts and prayers! Love, Jeff, Robyn, Keith, Madison and Steele

Name:

Beth

Email:

wdsands@bulloch.net

Date:

18 Jan 2001

Time:

16:37:51

Comments

Betsy, My name is Beth and although I have never met you face to face, I feel as though I know you well. My aunt, Diane, keeps me up to date on you, John, Connor and Ms. Connie. Your son is beautiful and the web page looks great. Know that your family is in my thoughts and prayers. God Bless, Beth

Name:

Deborah Whitfield

Email:

dmwhit@frontiernet.net

Date:

18 Jan 2001

Time:

17:26:13

Comments

Hello again Betsey, Thank you for your sweet comments, but believe me I receive more from you and your precious family!!! You are an inspiration to me!!!!! I talked to PSA today and they were supposed to call you. Please tell me they did! Evidently we are in the phase where they determine amount of nursing time. Let me know. You know I'm praying!!! Let me know if you need anything. Love bunches, Deborah

Name:

Mommy

Email:

Date:

18 Jan 2001

Time:

18:47:50

Comments

Thanks for your thoughts and prayers. It reminds us we aren't alone. Conner's had a pretty good day. Hate to say it but he has had stomach issues today. Its probably coming off that antibiotic. He woke up very late-about 11:20, got his treatment while watching videos, occupational therapy, visit with granddaddy, hook up to bipap but no nap. John felt too bad to turn the tv off while I was gone because he said Conner would "cry uncontrollably" when he tried to turn the tv off. John, you have to just turn him over and kiss him and turn everything off. So, he didn't nap until about 4:30 when I got home and turned him over, kissed him and turned everything off. He'd watch tv all day long and never sleep if you left it on. But he has been in a good mood today and feeling fine despite his "stomach issues." Thanks for caring.

Name:

Jill Burnett

Email:

ljillburnett@hotmail.com

Date:

18 Jan 2001

Time:

20:08:08

Comments

Betsey,

I have so enjoyed coming to this site ever since John finally got my email right and started emailing me!! Just kidding! But seriously, those stories are so heartwrenching, but at the same time so wonderful. They make us all realize how fortunate we are just to celebrate life and to be able to be loved and to love someone. I think in the big scheme of things that is what it is all about and some of us just get to "get it" much sooner than others. That may not make it easier, but I think that it's true. Anyway, thank you for sharing your life with all of us. You are all loved and thought about sooo much. I continue to pray for you, Conner, John, and Miss Connie (as well as the entire family) daily as I have done for so long. I pray for all of the doctors, nurses, researches, etc. out there who are working on this thing called SMA and trying to find a cure. Keep up the good work. You are a phenomenal person.

I emailed you the other day by clicking on the part that says "email our family". I don't think you received it, because I was letting you know what I had found out about the mirror. Hollie later told me that she had talked to you about it and John picked up the catalogs when he picked up the bathchair. I hope that you like the one we picked. I regret that it is not just like the one you found at superduper. Let us know what you think. I am so glad that the bathchair worked. I hope you guys figured out how to work it. Hollie said that she didn't get to show John. Take care and give Conner kisses from all of us at CMS. Love, Jill

Name:

Betsey

Email:

Date:

19 Jan 2001

Time:

00:39:31

Comments

Thought you might be interested to see what a jerk Bill Mahar is. I emailed them just to shame and embarrass whoever had to respond. I don't know why I even responded except that there are others who would be so hurt by his comments and don't have easy access to a computer. He didn't hurt me or Conner's dignity, he only scarred his own character. This is an excerpt from the transcript on the show "Politically Incorrect" from last Thursday.

Bill: But I've often said that if I had -- I have two dogs -- if I had two retarded children, I'd be a hero. And yet the dogs, which are pretty much the same thing -- [ Laughter ] What? They're sweet. They're loving. They're kind, but they don't mentally advance at all. Cynthia: I'm going to throw my shoe at you for that one -- oh! Bill: What? Dogs are like retarded children. Jay: The show is living up to its name. [ Scattered boos] Sarah: Boo. Cynthia: My 9-year-old nephew is retarded. I've never thought of him like a little dog. Bill: Well, maybe you should. [ Scattered boos ] Sarah: But I don't think you ought to use the word retarded. I don't think that's right. Bill: Don't use the word "retarded"? Well, what word should we use? Sarah: Just a regular person. Bill: But they're not a regular person. Sarah: Well, they are regular people. They have a heart and a soul. Cynthia: Limitations. Bill: They have a heart and a soul and a brain that's retarded. That's a fact, people! Excuse me! Sarah: No, because you can't say that. Do you know their brain is retarded -- this word retarded? They could just be lacking in the ability. Bill: That's what we call retarded. [ Laughter ] I mean, people, are you all retarded? I mean -- [ Laughter ] That's a fact. Martin: I'm not gonna comment. You're a hideous, cold person. Bill: I'm a truthful person. We've gotta take a break. We'll be right back. [ Applause ]

To: ABC Audience Relations Subject: comment on a show Dear Bill, I heard about the show regarding retardation. My only intention is to share with you my physically retarded son. He has golden brown hair and green eyes. Conner came into our lives physically perfect but his muscles have deteriorated over the past year and a half. He will die soon completely physically "retarded." But he will have been loved more than a family dog. He has touched more people in this community than any hound ever has. Conner is perfect to us though some may only see what he lacks. Thanks for listening, Betsey Riggs

This is what was emailed back to me from audience relations. In response to viewer concerns about the January 11th "Politically Incorrect" show, Stu Bloomberg, Co-chairman of the ABC Entertainment Television Group, has issued this statement: "We feel Bill went significantly over the line of 'political incorrectness', and we apologize profusely for the insensitivity of his remarks."

Name:

Lucie McKinney

Email:

Date:

19 Jan 2001

Time:

07:36:35

Comments

Dear Betsey, Good job. People like Bill M. will have to face a harsh reality. You and John are being wonderful parents. You are one spunky girl. We love you and pray for all of you daily. Love, Miss Lucie

Name:

Robyn Petty

Email:

steele815195@aol.com

Date:

19 Jan 2001

Time:

10:20:57

Comments

Hey Betsy! I just read you entry about Bill Mahr. First of all, we won't even watch him because he is so crude. I am amazed he is still on the air. I am going to e-mail them as well that was the most insensitive thing I have ever heard someone say. It is a shame that you should have to take time out of your busy day to respond to something that hideous. Conner is so fortunate to have you as a Mom. Keep up the great work. Give him a kiss. You are all always in our thoughts and prayers! Robyn

Name:

Mommy

Email:

Date:

19 Jan 2001

Time:

18:07:44

Comments

Conner is getting ready to go around the corner to his Grandmommy and Granddaddy's. We know Grandmommy doesn't feel good sometimes and Conner doesn't feel good a lot so we are going to merge them since Conner is doing okay for now. Yay! He gets to stay the whole weekend (since we have to take EVERYTHING). Its so close John and I can go back and forth if we want to and spend the night there. Conner just got his bath which is now so easy. I don't dread it anymore. I think we may even go out to eat tonight while Conner is hooked up to his bipap and getting ready for bed.

We heard about the nursing. This is weird but we'll take what we can get. Because of the program he fell under its this way but we won't complain. We will get 24 hour/day nursing at first then it will go to 20 then 16 then eventually 8. So, I will be overloaded with training a bunch of nurses then as time goes on it will get easier because whoever is left will be used to everything by then, I hope. The man I spoke to said I wouldn't have to really train them but so many nurses aren't familiar with the inexsufflator or the bipap or the dangers specific to Conner. A lot of these babies die from choking on thick spit or mucous plugs in the chest. I don't want to find out that someone didn't know how to work through a tough mucous plug when Conner has been blue and unconscious for 5 minutes. Can you tell I-who has wanted relief forever-am actually scared of getting relief? I sound ungrateful but I am not and I will get used to this. It will just take a little bit of time. I am very weary of having a bunch of new people take care of Conner. It'll be fine, I'm sure. Talk soon. Thanks for reading and caring.

Name:

Deborah Whitfield

Email:

dmwhit@frontiernet.net

Date:

20 Jan 2001

Time:

09:48:58

Comments

Betsey, I can't believe they actually did what they said and called. Don't worry about the decrease in nursing. We will fight it!!! Typically the reductions are few and far between anyway. Call if you need me. I will call after your meeting on the 21st. I pray for you everytime you cross my mind during the day and at night. You are sooo strong. I'm glad Conner is visiting his grandmommy that is great for all. Love tons, Deborah

Name:

Mommy

Email:

Date:

20 Jan 2001

Time:

18:35:16

Comments

Well, when we took Conner into the house last night, he smiled so BIG! Connie had made a place for him on his fold out foam chair and we put him down and he just smiled and smiled and smiled at his grandparents. He was so happy to be there. Months go by that we don't get Conner over there and they live within walking distance. We got him all fixed and ready for bed then John and I went out to eat. When Conner is clear and well we feel comfortable leaving him on his bipap with Connie and Sonny for a couple of hours, especially if he is going to sleep. We go places very close by-literally just around the corner from our house or their house. So every once in a while-if the time is just right-we get to have a little time out together. We thought Conner had an ear infection because his ear had been draining for about three days then the other ear started draining. But he has no signs of pain or fever. The doctor said to put the antibiotic drops in his ears and lets see if he continues to feel okay. I dreaded having to use the augmentin again since it upsets his stomach. But Conner seems to be doing just fine and really enjoying his time-his big vacation-at his grandparents. Thanks for thoughts,prayers, comments, support.

Name:

Kathy Kelley

Email:

kkelley@mindspringcom

Date:

20 Jan 2001

Time:

23:58:47

Comments

Hi Betsey, It's Lisa's Bennett's mom. I just got off the phone with Lisa and she gave me your website. Conner is absolutely the most adorable child I have ever seen! I have wanted to see a picture for a long time. I especially like the picture of the three of you.

I am very proud-but not surprised- at the courage you have shown through all of this. Conner is such a lucky little boy to have such a brave and strong mother to share whatever time God wants to lend him to you and John. He is truly an angel on loan. I would love to come with Lisa to the fundraiser and get to visit with you. I have retired from teaching- thank goodness!! After 23 years.

I will continue to visit the site to hear of Conner's progress and pictures. It is obvious that he has a wonderful extended family to support him. I will keep all three of you in my prayers. Love, Kathy Kelley

Name:

Aunt Shannon

Email:

socarlisle@yahoo.com

Date:

21 Jan 2001

Time:

23:53:28

Comments

Hi my sweet baby!!!!! I just wanted to visit and see the new pictures!! They don't make them cuter than you.

We cant wait to see you in February. Lauren and Drew are very excited. We love you!

Hugs and kisses from us to you and mommy and daddy

Name:

Marsha Hagan

Email:

Marshagan@hotmail.com

Date:

22 Jan 2001

Time:

10:54:59

Comments

I am very impressed with Mr. Conners webpage. I haven't been here in a while. His pictures are great and I love that you have this outlet to share it with all of us. Thank you so much for sharing Conner and your thoughts with me. He is beautiful and I think you are all doing a great job with him. I am coming to see you all very soon. Hope today is one of those really good days and Conner is feeling great and gives out lots of smiles and kisses to his Mommy and Daddy.

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

22 Jan 2001

Time:

12:35:31

Comments

Hi Betsey, John and Conner! Just checked in at your website for today and decided to write a little. (Haven't checked in awhile since things have been WILD here at school and I don't have a computer at home--what a teacher without a computer at home...yes, well some things are more important) Anyway, wanted to let you know that Ken and Larraine had their baby Thurs. Feb 18th (Mama's birthday and Colby's was the next day-19th) Tell Sonny and Connie for me. I'm glad that ya'll are going to get the relief you've been waiting for and yes, Betsey, I understand you kinda not wanting the relief due to fear that something might happen because they didn't "know". It will all work out though. I, along with everyone else I know, keep praying EVERY day (sometimes two or three times) for you and your family. I love you all so much. Take care. Love, Mandy

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

22 Jan 2001

Time:

12:36:36

Comments

Hi Betsey, John and Conner! Just checked in at your website for today and decided to write a little. (Haven't checked in awhile since things have been WILD here at school and I don't have a computer at home--what a teacher without a computer at home...yes, well some things are more important) Anyway, wanted to let you know that Ken and Larraine had their baby Thurs. Feb 18th (Mama's birthday and Colby's was the next day-19th) Tell Sonny and Connie for me. I'm glad that ya'll are going to get the relief you've been waiting for and yes, Betsey, I understand you kinda not wanting the relief due to fear that something might happen because they didn't "know". It will all work out though. I, along with everyone else I know, keep praying EVERY day (sometimes two or three times) for you and your family. I love you all so much. Take care. Love, Mandy

Name:

Mommy

Email:

Date:

22 Jan 2001

Time:

13:32:27

Comments

Hi! Thanks for writing and thinking of us. Mandy that's great about the baby! I will email you after I talk to John's parents. Conner is doing good today. His daddy had to come home from work to care for him while Mommy went to the Medicaid appt. Soc. Security is wed. then we are certified for a while. I hope he gets SSI. That will help supplement some lost income. Conner is talking right now and it is so funny. He is just practicing his sounds. Thank goodness John got the Video camera running to catch it. Did you see Conner's big boy pictures? Grammy bought that little suit for him a while back and he was finally clear and well enough to go through all the movement to put it on. I had to share his cuteness. A nurse is starting tonight. A full night's sleep? We'll see. Talk soon, Betsey

Name:

Betsey

Email:

Date:

22 Jan 2001

Time:

15:45:44

Comments

Can you hear the music playing on the front page? It is a very pretty song. Celine Dion chose to sing it when her niece died of cystic fibrosis. Here are the words:

Fly, fly little wing Fly beyond imagining The softest cloud, the whitest dove Upon the wind of heaven's love Past the planets and the stars Leave this lonely world of ours Escape the sorrow and the pain And fly again

Fly, fly precious one Your endless journey has begun Take your gentle happiness Far too beautiful for this Cross over to the other shore There is peace forever more But hold this mem'ry bittersweet Until we meet

Fly, fly do not fear Don't waste a breath, don't shed a tear Your heart is pure, your soul is free Be on your way, don't wait for me Above the universe you'll climb On beyond the hands of time The moon will rise, the sun will set But I won't forget

Fly, fly little wing Fly where only angels sing Fly away, the time is right Go now, find the light

I say that it reminds me of the freedom that waits for Conner (despite the pain it will cause).

Name:

Grammy

Email:

Date:

22 Jan 2001

Time:

17:22:25

Comments

Name:

Grammy

Email:

Date:

22 Jan 2001

Time:

17:27:06

Comments

I am having major problems trying to communicate, but I'll try again...My little Man looks soooooo cute! I love his "lawyer look". Abby just pitched a total fit because I took some Junior Mints from her so they wouldn't spill. What a drama queen! I'd like to think that's the worst thing that would ever happen to her, unfortunately, life isn't that kind. Give my Conner baby some big kisses. Love, Love

Name:

Mommy

Email:

Date:

22 Jan 2001

Time:

23:34:06

Comments

Our second new nurse came (Hope was the first) and she is doing a great job. She will be here until 7 am. The elmos are so cute. Thank you Laura Stants for doing such a great job on Conner's website! Everything is turning out very neat-more like Conner's website with the elmos. Conner has done okay tonight. He got a clog right before his treatment and it took some work but we got it. It gave Elaine a good training session, unfortunately for Conner. Hope all is going well with our friends and family. Talk soon. We love you Abby, Lauren, and Drew!!! Conner says he misses you!

Name:

Terri Bland

Email:

Date:

22 Jan 2001

Time:

23:54:41

Comments

Dear Betsey I told John and Debra Whitfield the other day that I tried this and went on and on for a while with my entry and then hit submit and it wouldn't do. This time I won't write so much and hopefully it will work, if not, I'll get your E-mail address. It was so nice of you to mention me in your journal. You know I have loved you for a long time, and I truly believe that God put us together way back at Candler DFACS, for a reason. I believe I know part of the reason. I looked at all the cute pictures tonight, wonder where he got that beautiful curly hair. He is truly so precious Betsey. I read inthe journal today that you go to Soc. Sec. Office on Wed. please make a copy of application for me so I can send it along with other things to the person who I know is going to make all this a smooth transaction. I will mail it along with all the other stuff just as soon as I get it. I;ll be in Candler office tomorrow and I may have to work in Liberty Co. on Wed. and Thurs I have to be there, so I'll get in touch with you hopefully tomorrow. This computer is in Jordan's bedroom and he is fussing because of the light from the computer screen, so I'll leave for now. You know I love you and want to help anyway I can. My family prays for Conner, you and John every night, and every Sunday, ya'll are prayed for by the prayer team at our church, Metter United Methodist. So many people are concerned and care. You truly are a remarkable person, Betsey, so strong and so determined. I admire you courage. I'll be in contact with you soon. Take care of you all. Give Mr. Conner a big ole kiss for me. Oh one more thing, when I read the part about you E-mailing that looser Bill or Bob or whoever he is, that sounded just like something Terri Bland would do. Remember, if you need any backup with things like that, call me. Mark says I'm the best at being out spoken about everything, to whoever. Sometimes it's a good thing. Glad you poured it to him ol' gal. See ya.

Name:

Lucie McKinney

Email:

lucimck@yahoo.com

Date:

23 Jan 2001

Time:

10:39:58

Comments

Betsey, Conner is sooooo cute all dolled up. All the teachers on my hall came to see the new photos. We think he's the Top Cat. Hang in there with the new nursing schedule. Take care. Miss Lucie

Name:

Mommy

Email:

Date:

23 Jan 2001

Time:

12:32:43

Comments

Conner did just fine through the night with his new caretaker! I am about to go give him his treatment before the therapist arrives. He wouldn't let me take his bipap mask off earlier. He pitched a fit when I tried to remove it so I left it on and let him watch videos. But time to clear his lungs! I have to tell you that those of you who check this site whether you write or not have made one of my dreams about having a precious child come true. This may sound shallow but one the things that I was sad about as we discovered how sick Conner was-was the fact that I had no way to take him to the store or to our friends houses or to the mall or wherever to brag about my precious baby and show him off. This website was my way of doing it since he can't easily leave the house. I am just as proud of him-even more so-even though he can't move. It doesn't make him any less cute and show-off-able. So, by you caring enough and checking his new pictures and showing your friends(thanks Miss Lucie) and family, you have made that dream possible for me and I am so proud! Thank you so much for caring and loving. You have made Conner's life that much more valuable-if it could be anymore...

Name:

Anne Britt

Email:

abritt@evans.k12.ga.us

Date:

23 Jan 2001

Time:

16:56:20

Comments

John and Betsey, Just wanted you to know I'm praying for you and Conner daily. I just love the pictures. He is so cute. I'm so glad John told me about them. I'm still trying to learn about the computer!!! I told the Guidos about Conner and the staff prays for him every morning at 8:00. Remember I love all of you. Miss Anne

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:00

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:06

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:13

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:19

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:25

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Doris & Gene Crump

Email:

dcrump2@hotmail.com

Date:

23 Jan 2001

Time:

18:43:31

Comments

Dear Betsey, John & Conner, What a beautiful boy. He is such an angel Betsey. Lisa just sent me this website and I have been crying while reading all your notes and seeing the pictures. Betsey, our prayers and thoughts are with you everyday. We LOVE you so much. You are such a good mommy. May God Bless you each day is our prayer. Doris

Name:

Laura M.

Email:

lmarsh@frontiernet.net

Date:

24 Jan 2001

Time:

00:11:42

Comments

I was SO glad to read about the nurses! Betsy & John, I simply do not know how you have done it for the last 18 months without a single full night's sleep. We put Ashley June in the hospital Friday for pneumonia (she's fine now) and we spent three nights at Memorial. I'd forgotten what it was like to be woken up every hour or two and yet that is what you have to do every night!! If I can do anything at all, you know you better call me (you promised last time I visited that you would and my phone still isn't ringing!) Once we're "germ free" again, I'll bring you lunch later this week or weekend.

Being in the hospital brought back so many memories - and I can't say that many were pleasant. As we were waiting for an echocardiogram to make sure Ashley June wasn't in heart failure (she WASN'T!), I thought of you, John and angel Conner. Having a child with a chronic condition makes you love them all the more fiercely as you are all too aware that there are no promises for tomorrow. While we are one of the very lucky ones as Ashley June's prognosis is good, I've had to learn, as you have, to put her life in God's hands and just love her as much as we can. You are truly an inspiration to me and to our entire community. I'm so glad Conner has this web site so that we can keep up with all of you even when my contagious child keeps us from visiting. You are all loved more than you will ever know. Hugs & kisses from the Marshes - we love and are constantly praying for you!

Name:

Mommy

Email:

Date:

24 Jan 2001

Time:

12:12:24

Comments

Laura- I will call to see how the baby's doing-I had no idea! We know that unpleasantness. I am so glad she is getting better-very scary. Conner is okay today-feverish last night-ear infections I'm sure from the cold. He'll be fine though. Hope is here now so I am going to lunch with a friend!!!! I have a social life now!!! My ride is here so I am off. I will update you on Conner later. Laura its payback time with the prayers, so know we are pulling for Ashley June's smooth recovery. See you soon, Thanks all for caring and your prayers. They are helping us to stay afloat but probably doing more than we are able to know now.

Name:

Deborah Whitfield

Email:

dmwhit@frontiernet.net

Date:

24 Jan 2001

Time:

15:51:09

Comments

Hey Betsey, Just wanted to give you a quick update. I just talked to Belinda and told her about the switches. She will be in contact with you and we will add speech next week. Love, Deborah

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

24 Jan 2001

Time:

19:29:34

Comments

I am sorry if you are having problems posting messages. If you are-you can go to the home page (the elmo page and look to the right) and click on "email us" and I'll post the email you send me if you tell me to. Please do that if you can't post using this page.

Conner is doing good today but he has so much ear drainage that he has got to have an infection or something. But no fever today so.... He just held me captive for 30 minutes playing the xylophone. I taped the thing you hit the bells with to his hand and he banged and banged on the bells with me holding his arm and he would go slow and he would go fast and he go real slow so he could watch the ball at the end of stick and pull way back and pull back just a little. He hit that xylophone every which way, every combination of ways you could hit it. One bell at a time, zip the stick down the bells...we played row row row your boat and mary had a little lamb. He held me captive with his "red-eyed squeal." I better make his hand go fast or he will squeal till his eyes are red. I better not put the bells back on the floor or I get the squeal. I finally transitioned with some berry flavored chap stick. He like to hold it to his lips and smell it.

No nurse tonight but Hope will be back in the morning. I think we have the other nights covered. The agency is still trying to cover all the hours. We're fine. Update you after Conner's appt. tomorrow. He's supposed to get shots. yuck.

Name:

The Walshes

Email:

Date:

25 Jan 2001

Time:

17:05:30

Comments

Hi Conner, Betsey, and John,

Just a quick note to let y'all know we're still thinking of you! Glad to see all of the support!

Take Care,

Howey, Amy, Ronni, and Heather

Name:

Mommy

Email:

Date:

25 Jan 2001

Time:

21:06:05

Comments

Hi Walshes! We miss you and we need to meet Heather. Thanks for checking on us. Conner went to the doctor today. Got shots, antibiotic, check up. He has done despite the ears being really bad. We can take care of that and he isn't acting irritable. Okay, talk later.

Name:

Email:

Date:

25 Jan 2001

Time:

21:21:46

Comments

He has done______ well is the missing word! He has done well despite his ears looking very bad. Thanks for caring about us.

Name:

Mommy

Email:

Date:

27 Jan 2001

Time:

17:14:09

Comments

Hello, Conner is at home with the nurse and John and Mommy is at her Mommy's. Conner is doing fine with ears. I hope to have fun this weekend and celebrate my 30th birthday (its not till next week). I am sure Conner is in good hands. John is very well "trained" as a nurse now.

Name:

Mommy

Email:

Date:

29 Jan 2001

Time:

20:40:36

Comments

I am home with my baby. We had a nursing disaster this weekend that I hope does not forshadow our future. The nurse that was suppose to come Sat. and Sun. nights didn't make it. I called Sun. night from my brother's when I found out no one had shown up. John had to keep Conner Sat. night, Sunday day and Sun night alone and miss work today which really made me upset. I would NOT have left town had I known John would not have help. I don't ever leave town without arranging nurse help for John-even if its in the day so he can get some sleep. It can't be taken back but trust is lost. Conner is doing fine. I was SO GLAD to see him, I woke him up when I got home. I read new books to him that I had gotten and we talked and we watched Jungle Book. Then grandmommy Connie and granddaddy Sonny came to visit. A nurse will be here at 9, so I will be relieved. I am tired and the medicines are making me even more tired. If anyone knows of an LPN in Statesboro or closeby that wants to do in-home care...send that person my way. Hope is working out wonderfully so far. But I am looking for more. Thanks for thinking of us.

Name:

Mommy

Email:

Date:

29 Jan 2001

Time:

23:09:01

Comments

The nursing service has sent us an extra good nurse tonight. What a night to send in the troops. She is excellent. Good night.

Name:

Laura marsh

Email:

lmarsh@frontiernet.net

Date:

30 Jan 2001

Time:

10:32:34

Comments

Betsy, I tried to send an e-mail to jcr104@hotmail.com but couldn't get it to go through so I'm contacting you publicly!

Thank you so much for the adorable card that Conner sent Ashley June. We LOVED it and its one the refrigerator. with all you have going on in your lives that was so sweet for y'all to take time to think of her. We all love you very much.

Betsy, I am sick that the nurses didn't show up for you. PLEASE tell John to call if that every happens again. I could at least entertain Conner while John gets some sleep and wake John up if we needed him (it's not that easy i realize, but i'll do anything i can!)

We pray for all of you every night and you are in my thoughts every day. Thank you for your friendship.

Name:

Auntie Lisa

Email:

lisa__crump@hotmail.com

Date:

30 Jan 2001

Time:

10:47:27

Comments

Dear Conner,

I hope you are feeling well today, I miss you very much! I look forward to seeing you next weekend. Take good care of your mommy today since it is her special day, happy 30th Betsey!!!!

Love,

Lisa

Name:

Peanuts

Email:

jnpao@hotmail.com

Date:

30 Jan 2001

Time:

22:25:10

Comments

Name:

Peanuts

Email:

jnpao@hotmail.com

Date:

30 Jan 2001

Time:

22:29:42

Comments

Hi Conner! Ms. Betsey and Mr. John! I'm just testing this out and hopefully someone I get it right. Anyway, I loved the web site now that I finally got in after several failed attempts. I WANT MORE PICTURES!!! Please?

Name:

Peanuts

Email:

jnpao@hotmail.com

Date:

30 Jan 2001

Time:

22:33:15

Comments

Hello! Ok, this is my last and hopefully successful attempt. How hard can this be! Well, I loved the web site and hope there'll be more pictures.

Name:

Betsey

Email:

jcr104@hotmail.com

Date:

31 Jan 2001

Time:

12:48:32

Comments

Little did you know you got it right twice, Peanuts! We all do it. I don't know why posting is giving people problems but you can always email me the message and I'll post it if it just irritates you to death. I'll get more pictures up this week. There are always new and cute pictures to post! Conner is doing fine. He's taking medicine for the ears still but he is doing good. Hope said he did fine through his treatment and he seems fine now. He has been talking talking talking. Last night mom was on the phone with him and he was signing, "I love you." I asked her if she was telling him she loved him and she said she was telling him to tell ME he loved me. He was and it was very cute. When he got the bipap on he was trying so hard to say, "I....I....luuuu..." That was all he could get out but that was enough. He's giving big smiles and loud talk. Oh, how we love him so....

Name:

Miss Lucie

Email:

Date:

31 Jan 2001

Time:

15:48:22

Comments

Betsey and John, The teachers took another look at Conner's pictures today and did the ""Oh, He's sooooo cute"". We want you to know that we talk about you and Conner on a daily basis. At our "Moment of Silence" every morning you can bet he's mentioned in our private moments.Hang in there. We love you three. Miss Lucie

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

01 Feb 2001

Time:

10:21:10

Comments

Conner is doing okay. Poor babe gets his RSV shots today. He has to have two since the amount of stuff doesn't fit into one syringe. So we will lather up his legs with Emla and get ready to put the massager on his legs. He's a good sport. Conner just looks at me like, "Now what? Who is that new person? What is that you are going to poke at me?" If you can get elmo in front of him, he may not even pay attention to what your doing. He makes me feel like a big baby for complaining about a cough. I feel lucky that that is all I have to complain about. Okay, thanks for keeping up. I am so glad that others appreciate how cute Conner is!!! Thanks Lucie!

Name:

Mommy

Email:

Date:

02 Feb 2001

Time:

20:52:38

Comments

Conner's doing okay. He took a long time to get clear this morning. I didn't know it but Hope was stuck with him in the back working on him and had no way to get my attention to go help her. I just happen to walk back and she said she needed me to help her and that she'd been working on him for about 30 minutes to get him clear. It took a little while a longer and I got him clear. He had a lot of loose stuff in his lungs that just wouldn't come up. Hope didn't act like it but I know she must have been a little nervous. She knows the drill and couldn't have reacted any different. I feel very secure with her here with Conner. She is right on top of things. That's how you have to be with Conner.

Josh Aubrey came over today to get some film of Conner. He's going to put something on the local channel about the fundraiser-Mon. or Tues. I can't stand seeing myself and hearing my voice on TV. I sound so bad and look pale. But I hope someone gets something out of it. They were nice for thinking of us. Talk later, Betsey

Name:

Grammy

Email:

sangar@mindspring.com

Date:

03 Feb 2001

Time:

08:54:32

Comments

Good Morning Conner, Betsey and John and all you folks in Statesboro. We look forward to next week and spending time with you for the "cause". I hope it won't be as cold as it was last year. It's supposed to be warm in Savannah, but somehow the weather seems to get just as cold as New England when something special is planned. Well, hope you have a good, fun day. We love you and want to see you! Grammy

Name:

Betsey

Email:

Date:

04 Feb 2001

Time:

16:57:30

Comments

Conner is sort of having a hard time. He is real calm right now because we gave him some lortab. He's got thick spit which is a real problem. I hope its not a sign of a cold. Not sure. I don't feel as intuitive since I have relinquished so much of the time that I am hovering over Conner with every pulse of his. I just don't have a lot of information to draw any conclusions since I haven't been observing everything. I'll just keep a closer eye. John and I were able to go to a movie last night. Sonny, Connie and a nurse were here. We enjoyed ourselves. Talk later.

Name:

Mommy

Email:

Date:

05 Feb 2001

Time:

14:16:08

Comments

Conner did fine went he awoke from his nap yesterday which was such a relief. His treatment went just fine this morning. He is happy and watching Toy Story 2 right now.

I have to use this forum to vent what I (and other parents in my situation) have to put up with when trying to manage with Medicaid. It was my understanding that if our hours of nursing decreased, we would be informed with a letter that would allow us the opportunity to appeal. I think we may be under a different program but I was calling to find out. After calling over 45 minutes, 40-50 times, I finally got someone to speak to-which was great. Then I ask the lady my very specific questions. I get a no on the first, which is fine-there is no argument-just need the info. Then I explain that my son's nursing care has been decreased twice and we didn't receive a letter explaining the appeal process. I am at the number of hours I want to keep and would like to know the process of appeal to keep our current nursing hours. She asks me how many hours of nursing I get. Fair question, I think-she must have experience with this question. Next question she asks, "Wait a minute. You get 24 hours of nursing care-that's 24 hours A DAY? What's wrong with your child?!" She asked very surprised. At that moment I knew that all 40-50 calls and the hour I'd been working on getting someone on the phone was A BIG WASTE OF MY TIME!!!!!! Ugh! After telling her that he has a fatal disease that has left him immobile and at risk of respiratory distress or death-at any moment-and that he requires attention every 3 to 5 minutes-she was no better equipped to answer my question. What did she think my answer would be to such an inane question? Did she think that no situation was dire enough to require 24 hour a day nursing? I am certain that she was empathetic after I explained but I just get so aggravated at people like that. She eventually told me to contact my local DFCS. WHATEVER!!!! I contacted another mom-my consummate, reliable alternative to every problem. Anyway, I know everyone has to deal with worse stuff than this-believe me-this is NOTHING! But still, PEOPLE!!!!!!! This lady just hit me the wrong way today. I just had expectations of speaking to someone with a little sense. What was I thinking? That's enough. Talk later, Betsey

Name:

Mother to Conner

Email:

Date:

05 Feb 2001

Time:

23:04:57

Comments

What a wonderful thing Deborah brought today. Conner got a switch that he can work all on his own. He, and only he, turned on the Panda playing the noisy drums and cymbals-over and over. For the first time today Conner played with another child. Cousin Mattie was here and she was messing with the panda and I would say, Conner-make it play and he'd make it play. Then Mattie copied me and said, "Make it play" and he'd make it play-and they did it over and over. It was a milestone!!!! He played with another child! He is usually only watching the other children play. We can hook his switch up to anything that turns on and off and has batteries. That means a whole new world of toys that HE can play with himself. And the possibilities of communication with this switch are endless. He is understanding english better and now he can let us know what he understands-loudly and clearly with no guessing. Also, something cute he's been doing in the past two or three weeks is singing with his videos. He is really reacting to his videos lately. Last night we were listening to the radio-Conner and me-and I was silly dancing to the music to make him smile and he was singing, "uh,uh,uh.....uh,uh,uh....." It was incredibly cute. He is calling now. Talk soon. I will post some pictures soon. Oh, Conner is going to be on the local news tomorrow-on channel 2 all day. I think its :24 and :54 past the hour but I may be wrong. It just makes me cringe to see me but I'll be proud of Conner!

Name:

Betsey

Email:

Date:

05 Feb 2001

Time:

23:11:24

Comments

I forgot to thank Carolyn-local DFCS worker-for finding out nursing hours appeal info. for me. Thanks Carolyn for all of your help! We're making progress.

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

06 Feb 2001

Time:

12:18:16

Comments

Hey Riggs crew! Haven't checked with ya'll in a while but you haven't written since Jan. 24... everything okay? Or can I not see it for some reason? Take care. Love ya'll, Mandy

Name:

Auntie Reea

Email:

Ree-a@msn.com

Date:

06 Feb 2001

Time:

14:00:34

Comments

Hi Conner, Mommy, & Daddy- I hope all are well today. I am thinking about you all the time and I'm really looking forward to the fundraiser this weekend. Lots of hugs and kisses to all!!!!!

Name:

Betsey

Email:

Date:

06 Feb 2001

Time:

20:59:02

Comments

Hey, we're getting excited about this weekend, too. Conner is doing well. The doctor thinks Conner's ear bacteria may be resisting the medicines so they are going to do a culture to find out what'll work. Ah...very smart!

Okay, I found this entry on one of the other parent's journals and I thought it was very important and offers a solutions to the EMG(needles in the muscles that I think is STUPID and unnecessarily painful!!!!!). While he still may have needed it,though I would have satisfied without it, there ARE things to alleviate the pain. Now, I am not blaming our doctor-he is and was VERY compassionate!!! I am only pointing this out for children in the future to not have to go through the pain. Here is the neurologist's entry:

Kathryn Swoboda

Date: 05 Dec 2000

Time: 20:35:51

Comments

Dear Kim, As the neurologist who diagnosed your son, and performed that first dreadful EMG, I want other parents to know that things are happening slowly but surely in the research arena that will translate to better therapies for this disorder. We must be optimistic in the face of coping with all the things that SMA means to a family and the affected child. But first,to address your heartbreaking account of Nikolas'initial diagnosis: I no longer do EMG testing without sedation in young children except in rare circumstances when anesthesia or sedation is too risky for the child. For the most part, an initial EMG is not usually necessary for diagnosis since we now have genetic testing available (except in rare children who have a gene deletion and a point mutation). In children who are a year or older, sometimes other neuromuscular conditions can mimic SMA, and EMG can be helpful.With the help of a nurse to moniter sedation or an anesthesiologist, we can make the kids more comfortable during the testing process. This is extremely important for children with chronic conditions, so that going to the doctor does not become a traumatic experience. At Primary Children's Medical Center, we are working on using an EMG technique called motor unit counting to help monitor the children's progress so that in the future we will be able to offer treatment in the form of medication or genetic therapies to halt the progress of this heartbreaking condition. Prenatal testing is available for this disorder. I do not advocate termination of affected pregnancies for SMA, but strongly believe that it should be the family's choice as to what to do with the information they receive from prenatal testing. Often, knowing that the child is going to be affected prior to delivery allows the family that very important grieving process that any family experiences when they know their child is going to have a disability. Thank you for allowing me to be a part of your lives. I applaud your courage and strength in the face of this heartbreaking disorder, and in helping reach out to other families with this condition. These are amazing kids, and they accomplish great things in spite of their difficulties. Our goal is to keep them as healthy and happy as possible. Best wishes, Kathy Swoboda MD

Name:

Mommy

Email:

Date:

07 Feb 2001

Time:

13:30:50

Comments

On top of the ear infection Conner has a cold. I am sure I gave it to him because I was all stuffed up last weekend. It would have been impossible for me not to give it to him if it was me. So, it doesn't surprise me but we will get him through it. The bad thing is that his inexsufflator just stopped functioning correctly which is life threatening during a cold. That is his CPR machine and declogger and he gets clogged a lot. Someone should be out very soon. He is stabilized on his bipap at the moment. I am confident that he will get through all this just fine. We've made it through worse situations than this. He's happy and smiling despite his ailments.

I made a wish to the Make-a-wish foundation! Conner wished to meet the Wiggles! His cousins got to go see them last week and we were sad that Conner couldn't ever be able to do anything like that. It probably can't come true but its worth asking for Conner's sake. I think he has to be 2 1/2 anyway and that is almost a year away. Wouldn't that be neat if they could come to his 2 year birthday?!!! That would be really cool. But....these guys are VERY popular-they are the Britney Spears of the toddler world. If they knew how special Conner was...they'd come! They'd come all the way from Australia!

Name:

Me again

Email:

Date:

08 Feb 2001

Time:

00:36:01

Comments

Conner was in good spirits today despite his cold. We didn't move him from his room all day so he didn't risk turning blue. Mom, I bought a lot of viewmaster things so we could watch them on the wall. And thanks to Penny and Josh for the Veggietales viewmaster things-I don't know what you call them...small square pieces of film that fit around and between two hard pieces of paper with holes in it.??? Okay, anyway, I found this little Toy Story set thing that had books and a tape and a CD. When it was time to go to bed last night I faced Conner toward the wall and turned on the taped story of Toy Story and turned out the light. I covered his mirror(that Hope brought over) with a white towel and we watched all the new pieces of film in the two hard pieces of paper with holes in it. We got Toy Story, A Bug's Life, Dinosaurs, Winnie the Pooh, VeggieTales....I think that's it. By the time we got to Dinosaurs, Conner was asleep. I enjoyed the rest of my presentation anyway.

I'm excited about this weekend. We will have fun and dress up and dance like fools and eat good little finger foods and bid on silly stuff and compete to have it and see people who care so much about a disease even when their own family is not afflicted by it. That amazes me. Am I that way or was I? I don't think so. I can't remember how I was before Conner. If I wasn't that compassionate before, I guess I am now-towards parents of dying children and children of dying parents (not that Connie is in that category). Love, love

Name:

Miss Lucie

Email:

Date:

08 Feb 2001

Time:

07:29:42

Comments

John AND Betsey, Have a wonderful time. I know it will be a truly successful event. We love you. Miss Lucie

Name:

Mommy

Email:

Date:

09 Feb 2001

Time:

03:23:25

Comments

Conner is still filled with stuff. For the parents of sma kids who are reading this...Conner has a simple cold and we have the suction, the inexsufflator, the neb, etc. and we are getting green gook deep out of his lungs. But we are right on top of it. You know though, it doesn't matter how hard you try, you can't do it all. We work on comfort and clearing. We do the best we can and we hope we get enough to keep him here for a little while longer.

Name:

Mommy

Email:

Date:

09 Feb 2001

Time:

14:52:12

Comments

Conner is supposed to be on channel 11, WTOC between 5 and 5:15. He said that may change. But, if you can, check out the cutie pie and forgive my heavy country accent. Talk later!

Name:

Mommy

Email:

Date:

10 Feb 2001

Time:

00:05:14

Comments

Conner is well. We made it through the cold and he is back to normal. What a relief. We just stayed on top of it. It is so much better to have help. I didn't realize it but I was actually suctioning Conner's bile because I stuck the catheter down too far. I know better than that. I don't ever stick the cath down his throat that far but I thought I was getting something out of his lungs but it was HIS STOMACH. Conner didn't care he just watched his video. Anyway, just when I think I'm a pro at Conner's care I do something stupid! Alright, we'll post pictures of the fundraiser on Sun. Talk later.

If you haven't already experienced the devastation of this disease through us, if you read the fsma.org message board(which I learn so much from) it makes me realize that it is truly a miracle that Conner is still alive. Every month or sometimes by the week, another baby is lost or a parent is sharing about his/her loss. Just recently I have found out that two of my friends know people who have children with SMA. It is not as rare as one would think. Bye!

Name:

Shelley

Email:

Date:

10 Feb 2001

Time:

17:48:54

Comments

Hi Betsey! Just spent the afternoon reading through Conner's website. I so appreciate the opportunity to hear what is going on in your lives. As everyone has already stated you, your sweet boy and John are inspirational. You make me want to work harder to be a better mother and make each moment count. Blessings to you and your family, Shelley Autry

Name:

Me

Email:

Date:

12 Feb 2001

Time:

00:39:52

Comments

We had SO MUCH FUN. Well, I had so much fun this weekend. Wild night of dancing after the fundraiser. I have pictures that are on the way to being posted so check it out. I cannot tell my friends and family how thankful I am that they came. It was nice to look around and see all my supporters there. Thanks Lisa for my necklace! Thanks for those who drove up from S. Florida, Maria and Lorie. Thanks Alison and Lisa B. for coming, Cousin Lisa and Aunt Elaine, Mommy and bro's and wives and kids. Doc Deal and nurse Deal, thanks for coming. Granddaddy, Grandmommy Connie and MaMa and uncles Daniel, Jim and Aunt Julie. Jess and Ed, thanks for coming. Thanks to the late night crew. That was fun.

Conner is doing great. He had a great night, Lisa and Ruth took very good care of him. He was so calm tonight, just wanting to watch his videos. He fussed earlier and wanted his bipap back on. He did fine getting down to Sav. and back. We kept him on his bipap the whole time and he enjoyed looking out the window.

Name:

Kelly Deal  (Nurse Kelly)

Email:

Date:

12 Feb 2001

Time:

18:47:13

Comments

Hey Betsey, I've been reading on the site for some time now but have never written until now. When I started coming to see Conner, he was just another pediatric patient that hopefully I could help in some way with my nursing experience. I have been coming every week for about a year now and find myself looking forward to pulling in your driveway and making my way down the hall to see that precious child that has become such an important part of my life. Not just my life, but Michael's too. We talk about ya'll a lot and how brave all three of you are. Becoming a doctor and a nurse was what we both always wanted because we wanted to help others, especially kids. We have worked together for about 8 years but never have we been able to connect so much from a patient until Conner. I am so glad that Michael is his doctor. Sometimes I don't feel that I really do that much to help you out as far as my weekly visits through the agency. I guess that's why I'm glad I can keep you on the inside track with Michael because sometimes I feel like that has helped you more than anything. I truly believe that God brought Conner into our lives for a reason. He has touched my heart in more ways than you can imagine, just as I know he has so many others. It's amazing that such a small fragile child can have such an impact on so many people. He truly is amazing and a blessing from above. Also, we had a great time at the fund-raiser. Thanks so much for inviting us. See you later this week for my weekly visit.

Kelly

Name:

Mommy

Email:

Date:

12 Feb 2001

Time:

19:34:29

Comments

I was having a depressing day until now. Thanks Kelly. A little fuel to get me to the next day. I really appreciate everyone's support. Its days like today when I need to know we aren't alone. I don't know what it is today but the weather and just all around gloom!!! Conner's been on his bipap all day. Every time I try to take it off, he can't breathe on his own. He grunts and takes way too much energy with each breath. I'm not real worried, I think he's just tired today but its a little depressing to be reminded that he's so sick. However, he is talking loud right now so I need to go love on him and talk back to him. We're lucky to have you Kelly and Dr. Deal!

Name:

Betsey

Email:

Date:

12 Feb 2001

Time:

20:09:03

Comments

Thanks Laura Stants for making Conner's web page so cute!

Name:

Dee Dee

Email:

baney@peachnet.campuscwix.net

Date:

12 Feb 2001

Time:

22:48:19

Comments

Betsy, I see you already have pictures from this past weekend in Savannah. I hope you found some shoes you liked, or could at least tolerate. I can't tell you how much I enjoyed looking at the pictures. (It was also good to see Jim and his family) I have forwarded this page on to several people I know that know and love you from your days at OPTIONS. I've bookmarked this page and will visit it often. Love, Dee Dee

Name:

Dee Dee

Email:

baney@peachnet.campuscwix.net

Date:

12 Feb 2001

Time:

22:48:53

Comments

Betsy, I see you already have pictures from this past weekend in Savannah. I hope you found some shoes you liked, or could at least tolerate. I can't tell you how much I enjoyed looking at the pictures. (It was also good to see Jim and his family) I have forwarded this page on to several people I know that know and love you from your days at OPTIONS. I've bookmarked this page and will visit it often. Love, Dee Dee

Name:

Betsey

Email:

Date:

13 Feb 2001

Time:

09:05:08

Comments

Thanks Dee Dee. I am feeling much better today. It is a relief to have a relatively positive attitude again. We really do go day by day, sometimes minute by minute. Up one day and down the next. Anyway, I hope Conner has a good day or at least a happy one. Lots of videos and books and tapes. Thanks Robyn for Conner's light and his tape we got in the mail yesterday. We put the light you gave him out in the front room so he has one up there in the evening. He fell asleep watching it the other night in the den. Conner talked and talked last night. I said, "Are you calling me?" and he said,"UH HUH." After he talked to Grammy on the phone last night, I asked him if he was talking to Grammy...."UH HUH." He always gets us to laugh when he responds appropriately.

Name:

Ashley Hines

Email:

ashleyhines

Date:

13 Feb 2001

Time:

16:15:26

Comments

HAPPY VALENTINES, CONNER!!! I feel very special to know you because you have your own website and everything!! I think Valentine's Day is special because it is a day to remind everyone,(not just your one special one) but all the special people in your life that you love them and are grateful to have them in your life. I wanted to get an early start before tomorrow and say, "I love you" and I hope you have a great day tomorrow. I'm coming to see you soon. I think you really liked me alot when I saw you last. With all my silly faces, you probably just thought I was silly. (I am!) Happy Valentines Day to you, your mommy and your daddy. By the way, do you know how lucky you are to have such wonderful, wonderful parents??? I'm kinda biased about your Grandparents too. You see, we are all like family so that makes you extra, extra special to me. Miss Ashley loves you bunches!!!

Name:

Mandy

Email:

addeal@bulloch.k12.ga.us

Date:

14 Feb 2001

Time:

10:37:45

Comments

Hey Conner! Just wanted to wish you a Happy Valentine's Day. I love to check on you each day-when I can- and see how you're doing. I also love to check in on Mom and Dad. Your dad has been a VERY SPECIAL person in my life-since way back in preschool and your grandparents have been just as special. Especially since I don't have my own personal "doctor" (pharmacist) anymore I have had to really rely on your granddaddy. He's been wonderful though. Also, I have grown so much respect for your mommy-she is such a strong and loving person. Your daddy is also. You are truly blessed to have such a wonderful, loving family. And I know that they are equally blessed to have you in their lives. Just take today to be especially thankful. I know you all are each day. I love you all so much. Hope to visit soon. Colby has been well now. Love, Mandy

Name:

Mad Mommy

Email:

Date:

14 Feb 2001

Time:

12:03:35

Comments

Thanks Ashley and Mandy...Conner says Happy Valentine's Day to of you! We celebrated his 19 month birthday last night. He got mad because we turned his head from the Wiggles, so he cried while we sang to him. When we turned his head back, he stopped crying. I think he's taking these monthly birthdays for granted now.

Well, I started Paxil yesterday. I suppose it was inevitable. You'd think I'd be more private about being on an antidepressant but I don't know if I know too many people that aren't taking something. So who cares? Anyway, I tried to manange on my own but I am just not bouncing back to my usual baseline, so I'll have to keep you informed on its effectiveness. I got off the phone with the person at the state who initially approved Conner's nursing care and she says he shouldn't continue to get the care because it is not what the program is about, etc. "Other families do not have the luxury of the care that we have to give Conner. Other families have kids with 24 vents and g-tubes." Am I missing something? I asked her and I wonder who would like to come spend 24 hours with me. I need it, how to do I keep it. That was all I wanted to know. If not that program, what program. That is all the info. I need. I shouldn't have spoken with her when she called but I didn't realize that until the conversation was ending. Honestly,I realize that she is doing her job but I don't think she understands the seriousness of this issue and I get the feeling that she thinks I am a spoiled, pampered mother who will make it sound worse than it is. That's rather frustrating. I need a cup of coffee! Talk later.

Name:

Miss Lucie

Email:

Date:

14 Feb 2001

Time:

13:23:16

Comments

Happy Valentines Day. John, Betsey and Conner, I hope you have a wonderful day filled with lots of hugs and kisses.

Name:

Auntie Lisa (one of the many)

Email:

Date:

14 Feb 2001

Time:

14:44:52

Comments

HAPPY VALENTINES DAY!!!! Conner it was so good to see you this past weekend. You are such a big & beautiful boy! I hope you & your mommy & daddy have a wonderful day today.

Betsey, hang in there. Just remember all the ones out here who are praying for you & your family. I can't even imagine the frustration you must go thru. After this weekend & seeing all the people at the fundraiser just reasures you you're not alone! Take care!!

Name:

Auntie Lisa (one of the many)

Email:

Date:

14 Feb 2001

Time:

14:45:24

Comments

HAPPY VALENTINES DAY!!!! Conner it was so good to see you this past weekend. You are such a big & beautiful boy! I hope you & your mommy & daddy have a wonderful day today.

Betsey, hang in there. Just remember all the ones out here who are praying for you & your family. I can't even imagine the frustration you must go thru. After this weekend & seeing all the people at the fundraiser just reasures you you're not alone! Take care!!

Name:

Belinda DeLoach

Email:

belinda2@frontiernet.net

Date:

14 Feb 2001

Time:

21:39:31

Comments

Dear Betsey, John, & Conner: Happy Valentine's Day! It was so great to see Conner use his switch on Saturday. He seemed so proud of himself. I am glad everyone had a great time this past week-end. I was told that Tools of Life is no longer operating so I will get some adapters and switch operated toys from BCW if I can. Thanks for including me in Conner's life. He is so adorable. Love, Belinda

Name:

Mommy

Email:

Date:

14 Feb 2001

Time:

22:51:07

Comments

Thanks Lisa and Belinda. When you come back Belinda it'll be much less crazy! Sorry... but you were so flexible and we appreciated it. Okay, I am not going to bed tonight without gaining and stating a new perspective on this aggravating process we are dealing with. I will say with humility that I am wrong about the lady in Atlanta I spoke to today about the nursing hours. I am sure that she cares about our family and she cares that we receive what we need. I must assume that when she submits a report that it reflects our true needs. I must assume that people I am dealing with at any level care about how their actions affect us. If I am proven wrong, then I will get angry! For now, I must assume I am only wrong about the intentions of those who are pissing me off. How's that?

Name:

mommy

Email:

Date:

15 Feb 2001

Time:

15:00:28

Comments

Conner is having a good day. He had a busy morning-therapist, lots of nurses, mommy trying to make him do things-but he managed fine. He has been talking all morning. We sang, "quack, quack, quack, quack-Cockadoodle-do!" Rewind, sing it again. And if you think I'm exaggerating, you should come listen. He really sings the song! So cute! He is trying so hard. Hope trained another nurse today. We'll see how that goes. He is resting nicely now.

Ashley, thanks for coming by and bringing us our basket. We appreciate it very much and we also got the sweetest Valentine from the 3 year old Sunday School Class at First Baptist. I am trying to get it posted on the web page. I have to email it to Laura S. and she posts it, usually very quickly. The problem is when I don't email it right, so we'll see if I can get it up there on the photo page. Conner loved it. He touched it and looked at it and smiled. I cried of course. That was such a sweet gesture.

Name:

Mommy

Email:

Date:

17 Feb 2001

Time:

11:49:22

Comments

Conner is being so precious. We are so thankful that he is trying so hard to communicate. It aggravates him a little when he can't form the words but he is trying. Over all things are going okay. Despite my petty aggravations, life is okay. We are always thinking about grandmommy Connie. We love her and want her to feel better. Conner loves all his grandparents very much. He talks to Grammy on the phone a lot, so she is familiar when they do see each other. He loves his Granddaddies because he wants to be like them. He loves his Grandmommy Connie when she talks so sweetly to him and does everything he wants her to do. Conner is sleeping so peacefully right now. That is the best feeling-knowing he is comfortable enough to sleep soundly.

Name:

Mommy

Email:

Date:

17 Feb 2001

Time:

23:04:04

Comments

Another baby died today at 3:33p.m., like so many...His name was Andrew Fimbel and he was almost 6 months old. His website is http://www.caringbridge.com/va/andrew.richard if you want to visit and see who he was. We are thinking of his family and friends. Extra kisses for Conner.

We are glad Grammy and Abby are here visiting with us.

Name:

Laura Marsh

Email:

lmarsh@frontiernet.net

Date:

19 Feb 2001

Time:

01:29:43

Comments

Happy Belated Valentine's Day Sweet Conner and Wonderful Riggs family. I'm running a little behind - sorry! Just wanted to let you know that I've been thinking of you. More prayers that GOD will continue to watch over all of you (and especially Conner, Betsy, John and Miss Connie) and that the researchers will soon find a cure for this dreadful disease. much love :)

Name:

Mommy

Email:

Date:

19 Feb 2001

Time:

21:26:28

Comments

Hi. We are doing okay here. Conner went for a ride today in the van. We put him up high so he could see out the window. He enjoyed it.

Name:

Mommy

Email:

Date:

23 Feb 2001

Time:

01:04:32

Comments

Yay! I think the journal is working for me again! I am not sure what went wrong. I tried it from a different computer and still couldn't through so I shed the blame. Conner has been okay, not great but not too bad. I think his ears are still bugging him. Conner kicked his legs in the water the other night. We have it on video. He was so cute. Considering he has cried the past few months everytime water touches him he has done so well. He smiled and talked and kicked. He just kept looking at his daddy like, "look at me!look, I'm moving!" We have done that with him before but we weren't sure he could still do it. I am sure he doesn't remember going in the water last summer. Today he started telling us no when we put on the robin hood video. We were asking, Is he saying no? "Conner, do you not want to watch this?" UH-UH. what? uh-uh! Oh my gosh! He's telling us no! He is moving into the terrible twos, huh? Also, tonight, our nurse Ruth came and Conner adores her. Everytime she would go out of the room he would call her back, "AAAhhuhh!". When she would go into the room he'd be quiet. I said, Ruth, Conner's calling you! He is really growing up! Just in the past few weeks he has really started showing us he knows what we're saying.

Name:

Mommy

Email:

Date:

23 Feb 2001

Time:

23:26:05

Comments

Well, things are okay. Conner is okay-as long as he is on his bipap. I can't seem to get him off it for too long or he starts having a hard time. I don't know. As long as he has the air, he's fine. So, on it goes and stays. But it hinders. He absolutely cannot do anything with that on. We can't go outside, can't ride in the wagon, baths have to be quick. Maybe we'll get it straightened out or maybe it is just part of the deterioration. I really do not know.At least he doesn't have pneumonia. At least we are not at the hospital. We are home and that is good. Thank goodness we have a wonderful doctor that will be able to look at him tomorrow and let us know if he is okay.

Name:

Grammy

Email:

sangar@mindspring.com

Date:

24 Feb 2001

Time:

18:45:13

Comments

Hi my sweet little guy. I sure am sorry you haven't been feeling well. I know Mommy and Daddy are doing everything they can to keep you comfortable and entertained. I wish you could see Abby and Lauren dancing and playing dress up...that would put a smile on your face. Drew is not here with us, just the girls. We miss you and Drew. Abby and Lauren went to see little Emma Marie Autry today. They both held her. She's a little tyke...much smaller than you were when you were first born. I got back the pictures I took of you last weekend...you are really a big boy. Your little "tenny-pumps" look so cute on you. You really look like your Daddy in these pictures...very handsome!

Name:

Mommy

Email:

Date:

24 Feb 2001

Time:

20:55:07

Comments

Well, Conner MAY-not for sure-but MAY have pneumonia. Dr. Deal is keeping a close eye on him so... more treatments and medicine and stuff. We'll get through it. Conner had a great time with Belinda today (thanks Belinda!). She had him laughing, talking and playing. Belinda we played with the farm animal thing more when you left and he loved it. Talk soon...

Name:

Mommy

Email:

Date:

25 Feb 2001

Time:

14:07:09

Comments

Conner is doing fine today. He has great care. Ruth did a great job last night keeping him clear and I know Hope will do the same when she returns. He is sleeping peacefully now with his Bipap cranked up high. His oxygen sat. is staying high which is real good to see. I feel like he will be fine. If he isn't, we'll deal with that when the time comes. love, love to all who care so much about our earthly angel

Name:

Lucie McKinney

Email:

lucimck@yahoo

Date:

26 Feb 2001

Time:

07:36:13

Comments

Dear John, Betsey, and "Sweet Conner", We love you. We pray daily for your strenght. Miss Lucie

Name:

me

Email:

Date:

26 Feb 2001

Time:

14:01:02

Comments

Conner is having a routine day. Stayed off bipap for about an hour. If you look on the photo page you'll see him in his tent. He "wore" it for about 20 min. then started calling me. When I looked at him he'd look at me then the tent, me then tent. You want it OFF? "uh-huh." So cute! Even though somthing's up with him, he is still remaining comfortable and entertained. Thank goodness (answered prayers!) Thanks Miss Lucie and everyone else!

Name:

Miss Lucie

Email:

Date:

27 Feb 2001

Time:

09:45:55

Comments

Dear Betsey, Everyone came down the hall to see Conner's little house. More pictures, please. Sorry about strength. Either way-- I know the Lord knows what we are needing. Hope the sun is shining is your life today. Much Love, Miss Lucie

Name:

MOMMY

Email:

Date:

27 Feb 2001

Time:

15:50:23

Comments

Things are looking okay as far as any pneumonia. That is good news but either way I don't like there to be no reason other than deterioration for Conner not being able to breathe. It wouldn't be a surprise but its not pleasant when it stares you in the face. We'll see...there are lots of surprises with this disease. Thanks for caring.

Name:

Belinda DeLoach

Email:

belinda2@frontiernet.net

Date:

27 Feb 2001

Time:

20:11:35

Comments

Dear Betsey, John, and Conner Just a note to let you know that BCW is sending some battery adapters for Conner to use his switch with battery-operated toys. We will use a different adapter for different batteries (AAA, C, etc). We are also trying to locate an adapter for his TV. I was excited and surprised at how long Conner participated in speech. He is so precious. I am sorry to hear that he needs his bi-pap more; I hope it is temporary. Conner is so fortunate to have such strong, loving parents. Love, Belinda

Name:

Mommy

Email:

Date:

28 Feb 2001

Time:

14:12:14

Comments

Thanks Belinda...Conner is having an okay day. His ear was draining and he has a lot of snot today. But he is acting sweet, cute and happy. Hope does a good job with him, too, so that helps. Talk soon.

Name:

me

Email:

Date:

28 Feb 2001

Time:

23:29:36

Comments

Conner has had a pretty good day. He is yelling right now. "aaaaaaaa!!!!!" Conner is the king of fighting sleep. He fights it and talks and talks. We've read and listened to stories and rubbed arms and head and talked sweet but he is continuing the fight. He stops yelling when someone goes in the room. He smiles real big. "I did it!" What a cutie. I love him so much. He looked so handsome today just laying there watching tv. He looked so grown up. ...and his cute curvy nose and bright greenish, bluish, brownish eyes with those long lashes and curly, shiny (matted) hair...I just want to save that sight forever. I guess everyone has to say good-bye to their babies.

Name:

Deborah

Email:

Date:

01 Mar 2001

Time:

17:35:39

Comments

Name:

Conner's mother

Email:

Date:

02 Mar 2001

Time:

17:25:43

Comments

Conner is doing good today. He continues to need his bipap more but everything else seems real normal. His chest remains clear. We put Conner in his kid cart (purple stroller) and strolled him into the kitchen and gave him an orientation to all the stuff. I showed him the washer and dryer-how you put stuff into the washer and take his stuff out of the dryer. He smiled real big at this. He liked it when I turned the dryer on and opened the door real quick so he could see his blankets still going around. We opened and shut and opened and shut the dishwasher and he liked that. He beat on pots and pans with me holding his arms and hands to do it. He really liked the oven and putting pots in and out and in and out, open shut open shut. Turn the lights on and off and on and off. I guess one and half year olds do like that kind of stuff. Then I rolled him up to the computer and he was amused for a while with a computer program I got for him that is for babies. Its a rabbit with a bunch of colorful pictures and he sings and talks and stuff. He liked that for a little while but then he wanted bipap and a video. His cheeks were getting real red and he was grunting. So he is watching a video now and about to have company. I don't think he wants to watch Toy Story right now though because he's making "negative" noises, so I guess I'll go find a better one. I'll have to ask him, "you want this one? this one?"

Name:

Grammy

Email:

sangar@mindspring.com

Date:

03 Mar 2001

Time:

08:41:27

Comments

So Conner is another sleep fighter, huh? Remember how Lauren used to hold her eyelids open with her fingers to keep from going to sleep? Guess is runs in that generation. Abby is pretty good about sleeping and Drew doesn't really get upset about anything...anyway, Conner and Lauren have it in common. I think they're afraid they'll miss something...life is just such a blast. Maybe, we could all learn something from them. I know that Conner's life is as wonderful as it can possibly be because of you and John and all your love and devotion (and he knows that, too) Of course, the rest of us adore the little munchkin, too, and wish we could be there to see that big grin and those oh-so-expressive eyes when he's all lit up with wonder. I love you and miss you so much - even though we talk every day, it's not the same as being there.

Name:

Betsey

Email:

Date:

04 Mar 2001

Time:

01:20:08

Comments

Well, Conner is super bratty. We have created a monster. Just kidding but not really. He orchestrates situations with his "whine." And what a powerful, authoritarian whine into which it has developed. Anyone would have laughed at me as I jumped through hoops today setting up his light, turn on tv, not that video-another, move tv to the right a little, put on bipap, turn on side, don't turn the overhead light on-turn it back off!, the ball of light can't be seen, put it on the tv so I can see it and the tv and keep the other light off, where are my other lights you've been putting up in my wagon?!-aren't you going to turn those on?-where is my daddy-"dadadadadada!!!!!!", John, he's calling for you!!!! For a child that doesn't say but one or two illegible words, he communicates his "needs" pretty well. What a smarty. I am such a sucker! It is difficult to be his arms and legs and his disciplinarian. Doesn't that make for a conflict of interest?

Name:

Conner's mommy

Email:

Date:

05 Mar 2001

Time:

00:17:57

Comments

Conner has done fine this weekend. His ear continues to drain and he has done okay off the bipap for a little bit longer than lately and everything else is the same-normal. He is enjoying pushing us around with his manipulative ploys. He is a precious little thing. My life is so wrapped up in Conner. It doesn't matter what I focus on outside of my house, I still wrap my world around Conner. I will be lost without him. But for now I get to enjoy him, so I will-and I do.

Name:

Mommy

Email:

Date:

06 Mar 2001

Time:

09:46:56

Comments

Conner is so funny. He woke up early this morning when the first nurse left and before the other arrived. I sucked out his nose and throat so he could breathe better and he started talking in this real high voice and laughing. He was saying, "nanana" real high and smiled and I laughed then he'd laugh then do it again. He is so silly. When John came in the room Conner started waving at him and doing his I love you sign. He loves his daddy so much. It is so sweet to see his eyes light up when daddy comes in.

Name:

Grammy

Email:

sangar@mindspring.com

Date:

06 Mar 2001

Time:

14:15:13

Comments

I love to talk to Conner on the phone...he really does react to what he hears. He tries to tell me everything he knows all at once. He wants to do all the talking - I feel like he's telling me to shut up and listen. So I just try to assure him that I hear what he's saying and I UNDERSTAND (eventhough I don't) We don't want to frustrate Conner. CONNER IS KING!!!! Love you little man.

Name:

Mommy

Email:

Date:

06 Mar 2001

Time:

23:59:53

Comments

Conner has had such a good day with the exception of having to give him CPR out of nowhere. It was just isolated. He was off his bipap for a little while and everything was fine and he was watching tv and all of the sudden he started turning blue so I called for John to go get the bag and oxygen and pinched his nose and gave him a little "puff." And he was fine. Nothing major before that and nothing after. You have to be on guard all the time. I guess all parents do. Anyway, he's fine and has been in a good mood all day. He got mad at cousin Mattie earlier when she was looking at his favorite book. He kept eyeing her and when she didn't put Rolie Polie Olie down he started fussing at her. It was very funny. I don't often see him get possessive.

Name:

kelly rushing

Email:

krushing@bulloch.k12.ga.us

Date:

07 Mar 2001

Time:

11:45:05

Comments

hey betsy and john-just checking in with you. give connor a kiss from me.

Name:

kelly rushing

Email:

krushing@bulloch.k12.ga.us

Date:

07 Mar 2001

Time:

11:54:50

Comments

Betsy-I hope this is getting to you. Let me know if you can, I'm not to good with these new things!! haha-I think about ya'll almost every day-the pictures are great-much love to you all-kelly

Name:

Mommy

Email:

Date:

08 Mar 2001

Time:

08:16:54

Comments

Thanks Kelly...we appreciate you thinking of us. Conner did fine yesterday. He is getting funnier everyday. I will post lots of pictures very soon! Gotta go. I will try to get them up by tomorrow sometime. I send them to Laura Stants, who set up this page, and she usually posts them pretty fast. Laura has done a great job with this page and I really appreciate it. The elmos are so cute. gotta go!

Name:

Email:

Date:

09 Mar 2001

Time:

13:04:02

Comments

check out the new pictures! more are on the way!

Name:

Miss Lucie

Email:

Date:

10 Mar 2001

Time:

12:06:11

Comments

Oh Betsey!!! The pictures are precious. Tears came when I saw John with Conner in his arms. WE LOVE seeing Conner and "Jim Riggs" together. Cousins are so much fun. I can't wait till Monday to show all the teachers on my hall these new photos. We are staying late everyday to make up for the days we missed for snow. So I will always check for more pictures of that little "cutie pie" to "show off" to my friends. We love you and John, and good looking Conner. Keep all the girls away from him. He'll steal their hearts. Love, Miss Lucie

Name:

Mommy

Email:

Date:

10 Mar 2001

Time:

14:24:19

Comments

Thanks Miss Lucie! I cried when I was taking those pictures of John and Conner. Conner was just enjoying being held by Daddy. He kept staring right into John's eyes and smiling so big. Conner had a great time today with Miss Belinda (speech therapist). I learned more ways to play with Conner to encourage his speech. I underestimate him when I have him alone. He was really warmed up and wanting to say the things that were being showed to him. I am going to Monroe today. John will have Conner with the nurses until I get back. I know he will be in good hands. He's kind of feeling bad but his oxygen is remaining high so maybe that will buy some time until he can get seen Mon. or Tues. Talk soon!

Name:

Mommy

Email:

Date:

13 Mar 2001

Time:

23:22:57

Comments

I will try to get some more pictures up soon. I have been out of town. I got back today. Conner did okay, not great, but okay. We're holding off on calling the doctor because he has no fever. He probably just has a cold but as we know that can be tough. I don't think its a cold though. I think he's like me-we're just sneezing a lot, probably because of all that pollen. My nose just keeps itching and its not like I go out a lot-maybe straight to the car and back inside. But I never have had allergies bad until this year. ANYWAY........we'll wait it out. I can do that since we have nursing help. I am not as afraid to just work through things and if things start to turn respiratory, I have experienced ears listening out for me. Well, I love Conner. He is my little angel baby and sure did miss him while I was gone. I could feel that he needed me. He was taken care of but he needed mommy kisses. You know, if you really think about Conner dying, you shouldn't feel sorry after all of his suffering is over. It is us-those left behind- we will for sorry for then. He will beat us to a place that is so much more peaceful. We'll still be on earth where we have to work so hard to be happy (and I will). But Conner, he won't have to work so hard. He will have the advantage over us then. He deserves that added 70 or 80 or 90 years more of peaceful, painless eternity, don't you think? I know you think I've gone off the deep end but I haven't. I just have to rationalize the loss. Things are getting kind of serious. But I am going to appreciate my family while I have one. love them all, love, love, love

Name:

Auntie Reea

Email:

Ree-a@msn.com

Date:

14 Mar 2001

Time:

14:45:47

Comments

Hi Riggs Family :o). I hope you are all having a good day today. I love all the new pictures. Conner just gets sweeter everyday ;o). I wanted to let you know that the FSMA Benefit down here is going to be June 2. We are hoping to have 500+ people attend as well as many others make donations. It should be a big success. Debbie is posting more information. I miss you all very much and can't wait until I can see you again. Kisses & hugs for all.

Happy 20th month birthday Conner!!!

Name:

Betsey

Email:

Date:

14 Mar 2001

Time:

20:40:28

Comments

Maria, that is so great that you all are doing the benefit. Debbie is so lucky to have you. I am too! Conner is too. We just celebrated his 20 month birthday-a day late. We actually forgot until about 11:30 last night and I went running in his room and told him. I knew we were close but I wasn't sure what day yesterday was until late. But he was in his bipap tonight, sitting up in his feeder seat looking all around the room with a birthday hat on-we have pictures! He looked so cute. The air blowing out of the bipap was able to blow out the candles for him and we acted like he blew them out with his mouth. He was looking in the mirror and laughing at himself. Oh, he was happy. Uncle Daniel and Granddaddy Sonny were able to catch him during his birthday! Talk soon, Betsey

Name:

Shelley Autry

Email:

Date:

14 Mar 2001

Time:

20:42:18

Comments

Hi Betsey and Family! I check in with you guys every couple of days to see how you all are. I was looking at Conner's pictures again and I love the one of you and Conner sleeping together...just precious! He is such a sweet thing. I showed Joey his picture this evening and the first thing he said was what a good-looking boy Conner is! We are going to be coming to town the weekend of March 24th. I'd like to come by and see Conner. Maybe sometime that weekend would be good for you guys. I'd love to bring Price...he LOVES coming to Conner's website, looking at his pictures and especially seeing Elmo. He loves Elmo too! If Price is healthy, I'll talk to you about that when we get there. See you soon, Shelley

Name:

Mommy

Email:

Date:

16 Mar 2001

Time:

14:19:13

Comments

Check out the new pictures...Shelley, please come by anytime. Just give us a call when you get in town. We would love to see Price. Conner has had such a good day today-with the exception of getting his RSV shot.

Connie, we love you so much. Thanks for being such a loving grandmommy. love, love, love always

Name:

Grammy

Email:

sangar@mindspring.com

Date:

16 Mar 2001

Time:

15:04:11

Comments

Conner, you handsome little devil you! I just looked at your new pictures and you are the "prettiest" thing imaginable. I can't wait to see you tomorrow. We'll try real hard to make Mommy and Grandmommy laugh a little bit. They deserve a few laughs, don't they, buddy? I love you all and look forward to seeing you.

Name:

Mommy

Email:

Date:

16 Mar 2001

Time:

22:26:17

Comments

Conner had a really big day. He woke up real early. He watched videos and talked and talked to Miss Hope. Then two of his therapists came and nurse Kelly. I triple booked-oops. My memory's not too great right now. He had his RSV shot (its actually two shots) and then had double therapy. Conner did so well up in his feeder seat-with the bipap on-that's the catch. He can do more with his ventilator on. Then Conner went outside in his wagon and then played on the computer! Big day!

I am trying to get a portable ventilator so Conner can go places. We have an appointment on March 28, hopefully, if we can all the right people here on the same day and time. If the one we want works well then we can take Conner places without worrying about him getting tired or not breathing or choking. We can't go hiking or anything but we may be able to take him out to a restaurant with us or go over to Connie's and Sonny's or maybe go to Savannah. John and I want to badly to stroll him down river street and see the boats. But we just can't do it right now. So, hopefully this will work out. The second hurdle is whether or not the insurance company will cover the machine. I really feel like they will. We save them lots of money by not going to the hospital or emergency room and medicaid pays for nursing. I am rambling because I really want this to work and when I say it does you'll share my excitement.

Well, thanks anyone who is reading this and caring for Conner and Connie. I know we all have our moments of heartache and tragedy-John's family went through it when Sonny was shot and us when my dad and mom were shot but here we go again. I hate it! Later maybe things can be put into perspective but it is...well...impossible to put anything into perspective right now. Everyday seems like a waiting game with everyone. We don't know when ANYONE is going to get into an accident or get cancer or be born with a fatal disease. It could happen to anyone at anytime. So, I know we have to deal with this just like anyone else would if it were anyone else. But when tragedies pile up, one on top of the other, it makes you feel like it will always be this way and it is hard to imagine a life without heartache. I know one day we will be able to go on vacation-a real vacation or have a job or sit around with the family members who are left and really laugh a real and sincere, relieving laugh. It just seems so far away. I am not feeling sorry because I know that others who are reading this have gone through tragedies too. I am not so special that my tragedy is any more important or painful than anyone else's. It just is painful and I state it here.

Name:

Auntie Lisa

Email:

lisa__crump@hotmail.com

Date:

17 Mar 2001

Time:

13:22:43

Comments

Conner I love the pictures!!!! You are sooooooo handsome & big! I hate that I don't get to see you more but thanks to your mommy I can keep up with you thru this website.

Betsey, just remember we all love and support you very much. You're right we all have tragedies in our lives but thats why having so many friends is important. Conner is so blessed to have such a wonderful & caring family. I admire your strength, you are such a beautiful person & I am so thankful to have you & your family in my life. Give Conner a big kiss for me!! I miss you all!!!

Name:

Miss Lucie

Email:

Date:

17 Mar 2001

Time:

16:19:38

Comments

Dear Betsey,John and Conner, What can I say--The pictures are truly great!!!I wish I wasn't so far away. I would love to see Conner using his computer skills. I feel he's a lot more advanced than I at that machine. As far as the laundry--you have really accomplished a lot by getting a MALE interested in just being in the laundry room. HA HA. Betsey, keep your chin up. I am so very proud of you and John. Each of you are in my prayers daily. By the way- I think Conner is on his way to having his picture placed on the cover of G Q --Such a handsome fellow!!! Love, Miss Lucie

Name:

Mommy

Email:

Date:

19 Mar 2001

Time:

01:00:52

Comments

Thanks for being here for us. As you can tell, we need a little encouraging, huh? Well, we took Conner to Connie and Sonny's today. Grammy visited with Conner, too! We liked visiting with Grammy-drinkin' coffee, eatin' fudge, watchin' movies. Conner got to watch Dinosaur. I rented it before we decide on whether or not to buy it. That is the safest thing since Conner is rather picky. He enjoyed his visit with grandparents today. When Connie left the room to go "nigh, nigh" (as Conner says) he started crying. He was amazed for a long time with this silly little sticky belly button flashing light thing. He was super sad when he had to leave his grandparents house but we'll take him back real soon. It is just hard because we have to pack up so much stuff whether we are going 3 hours away or just around the corner. It all has to go. But it was a nice visit. And there was so much food! Everyone has been so nice taking food by Connie's. The banana pudding was SO GOOD. It means so much to not feel alone. Others are not so fortunate. Thanks. I'll be getting more pictures up soon. We still have to show you the 20 month birthday.

Name:

Mommy

Email:

jcr104@hotmail.com

Date:

20 Mar 2001

Time:

00:27:13

Comments

Well, Conner had a pretty good day today. He showed Miss Hope how he swims in the tub. Later he watched the tube under his tent with mirrors all around to see that he was under a tent. We played with farm animals and practiced sounds. I can't keep his intererst like you do Belinda! I try. But Conner was sleepy and so was I, so we both fell asleep after I sang Old MacDonald and rubbed his face, back and arms. When he went to sleep tonight, Conner said his prayers with his little hands together. I read about twenty prayers before he started looking for his ball of light and we both said, "AAHHH-men." He liked that. He couldn't get out the "men" part, but he did a good job with "AAAAHHHH."

Well, we have the day set up to meet about the LTV1000. That is the vent. The doctor, the ped. ICU nurse, the respiratory therapist, and the sales rep are meeting here next Wed. That is the day after the hearing for nursing care. The judge is coming to our house. While I am nervous, I know that whatever is fair and just will happen. There is nothing better than having the situation itself right in front of the judge. If the policy coincides with our situation then we are okay, if not, then not. I will either be educated about the policy or granted what we need. So, stressful week next week, huh? Like it isn't already. If it all goes well, then I can take small sigh and move on with the other things that need to be done. Thanks for caring!

We are thinking of Conner's great-grandmommy tonight. She fell and hurt her head and is in the hospital tonight. We love you Mammaw, very much. I hope you aren't lonely and hurting. We are here thinking about you and loving you. love, love

Name:

Mommy

Email:

Date:

21 Mar 2001

Time:

08:57:01

Comments

Well, Conner had a full day yesterday. After his treatment, he managed to stay off his bipap long enough to do his physical therapy with his bath chair in the tub. We had to promise him that he would not have to have his hair washed or be scrubbed. It was strictly a bath for moving and fun. He did such a good job and kicked, kicked his legs! Conner was pretty tired after therapy so we put his bipap on and got him ready for his nap. But he got to visit with Robyn and Jeff Petty right before he fell asleep. After his nap Conner got out in his stroller for a little walk to the neighbor's for a short visit on the driveway. Then he played on the computer with Reader Rabbit. Then back on the bipap after a huge "mess" on the futon. Whoa...that was an incredible mess. I am still cleaning it up. But Conner watched his movies then had a treatment and we both laid down together. He is such a sweetie. This was a day of fun in between suctioning and bagging all day...Conner was whining when I put him down but when I asked if he wanted Mommy to lie down with him he smiled real big. I can do that-I don't have anything better to do. Then he just purrs, hmmmmmm, as I rub his arms and face. Sweeeet baby. love, love

Name:

"NaaaNaaa" as Conner says.

Email:

Date:

22 Mar 2001

Time:

13:30:46

Comments

Conner is having a good day today. Hope thinks (and I agree) that he has a tummy virus of some sort. Nothing seems to be wrong or different with the exception of him pooping EVERYWHERE!!!!!! We'll give him extra water and treat his tummy ache and hopefully he'll get past it in a day or so. He is in a good mood and talking up a storm. I read a book to him and then put the flavored stick in his mouth and that did it. He started talking. I don't know what he is saying but...it sounds like he is saying Conner. He says, "ah-rrr.....auh-errr" Anyway, I just do Conner cheers for him anytime he tries so hard.."way to go, Con-ner...way to go! Yay!!!! GO CONNER!!!"

Name:

Auntie Reea

Email:

Ree-a@msn.com

Date:

23 Mar 2001

Time:

16:49:03

Comments

Wow Conner- you are getting to be such a big boy!! I love all the new pictures of you. Especially the one of you sitting in your chair looking in the mirror and laughing. I know you put a smile on your Mommy & Daddy's face everyday. You are such a little angel. The strength and courage of your entire family is an inspiration to us all. I love and miss you all. Have a wonderful weekend :o)!

Name:

Grammy

Email:

sangar@mindspring.com

Date:

23 Mar 2001

Time:

17:53:39

Comments

Hi my little sweet pumpkin, I love your pictures, but where is one of the new haircut, Mommy? I want to see that little boy, professional haircut. I hope you have a good guiet uneventful night tonight so you can all rest up. The weather is so pretty, maybe you can take advantage of it tomorrow and go for a little stroll. All my love and kisses, and it's all right to give Grandmommy and Granddaddy Sonny lots of sweet kisses too. There's enough to go around. Love you all...

Name:

Mommy

Email:

Date:

23 Mar 2001

Time:

23:46:00

Comments

Today was hard and I am tired so I will report a good day tomorrow, I hope. Conner's fine and cute as always. Aren't his pictures absolutely precious? Of course I think so. We'll get his new haircut up soon Grammy!

Name:

Mommy

Email:

Date:

25 Mar 2001

Time:

12:03:53

Comments

Amy (Joseph's mom from Swainsboro) came by to visit yesterday. Conner was sleeping but he woke up just as she was leaving. We had a nice visit and managed to get Joseph's picture up on the site before she left. I was so glad. Joseph looked just like Conner when I went to visit him a month or so before he passed. He had his bipap on and he was looking around and gave me a big smile. He had curly black hair. Hopefully we'll get a picture up of him when he was a little older so you can see how cute he was. Amy is doing okay. She is keeping busy and just became a manager at her store recently.

I took Conner out later yesterday and got to swing. But we are both paying for it now because of all the pollen that was out back. Last night before he went to bed, I found a harmonica and put it up to his mouth. The breath from the bipap allowed him to play the harmonica! It is so funny!!! Every once in a while he will get a big breath out and it just plays so loud. We are in the process of getting his room looking more like a boy's room and less like a hospital room. I am trying to move all the supplies into the room connected to his bathroom. I put a desk in there so the nurses could be close by and write up their notes. When he woke from his nap he had toys everywhere and his eyes were so big. It was like Christmas for him. Elmos and veggietales and stuffed animals EVERYWHERE! Thanks to Hope. She inspired me to use the shelf that I had bought "for hospital stuff" for TOYS and lights and fun stuff. Wow, why didn't I think of that?

Name:

AMY

Email:

Date:

25 Mar 2001

Time:

21:08:07

Comments

I enjoyed my visit to you alls house yesterday. Next time you will have to be awake, Conner. I hope to come visit again soon. I loved seeing all the beautiful pictures. Thank you for being such wonderful caring friends.

Name:

Deborah Whitfield

Email:

Date:

26 Mar 2001

Time:

14:47:50

Comments

Hey Betsey, Are we still off for tomorrow? If it is back on just leave me a message at the house and I will be there. Let me know what I can do. Love, Deborah

Name:

Mom

Email:

Date:

26 Mar 2001

Time:

23:21:46

Comments

We are not meeting with the judge tomorrow because my brother was able to work it out with the Department of Community Health, for now. So, until June we will receive 14 hours in a 24 hour period of nursing. That is a relief for now. Now we have got to work on the vent. Then other things. Conner had a decent day. He likes his newly rearranged room. Its pretty neat. He is so silly. love, love

Name:

Mother

Email:

Date:

27 Mar 2001

Time:

23:33:16

Comments

Tomorrow is the day we try the vent. I hope it works. The insurance company is very willing to collect information about it and consider it. I am sure a convincing argument can be made for the vent if it works.

ANYWAY-enough about that. Conner got to go out today for a little bit. He rode in his wagon. I love it when he is clear enough to make it out for a little bit. He went so long without being able to even go out of his room without ALL the equipment. I hope he has another good day tomorrow. He is such a sweetie. Before he went to bed he talked, played his harmonica(with his breathing machine on), sang with his happy music, cried a little, then passed out.

Name:

MOMMY

Email:

Date:

28 Mar 2001

Time:

16:24:47

Comments

The vent works!!! Now it is time to try and get it paid for. Conner sure didn't seem to mind all those people standing in his room. I was shocked. As long as he had a clear shot to the tv, he was fine. Charlene got in his way one time and he yelled, "Naaaaa!" Whoops, sar-ree Conner.

Connie's not feeling good today. Think of her with happy, good, positive energy. We all wish we could make things okay. Maybe relief is somewhere close by. Thanks for thinking of us. Love, Betsey

Name:

Laura Marsh

Email:

lmarsh@frontiernet.net

Date:

29 Mar 2001

Time:

13:26:12

Comments

I had to stop and leave a comment today on the journal about the good-looking Riggs boys' ability to choose such remarkable women to marry. Betsy, I've known Mrs. Connie since I was in fourth grade and the whole gang was at julia p. bryant. She was ALWAYS without fail, a positive, sweet and kind person. Truly the type of woman that is a "GREAT LADY" and that you aspire to be. Because she was blessed with three sons, she "adopted" Robyn, me, Ashley and so many others as her daughters and was always so good to us. I will never forget my second week in college at Florida State when I received a card from Mrs. Connie just to say "hi" and tell me she was thinking of me. That was such a kind and unexpected gesture and it has stayed with me all this time. Like so many others in town, it hurts me so much to hear that she is in such pain. Please tell her how much we love her and how hard we are praying for her.

Betsy, you too are a Great Lady in the history of wonderful Riggs women. Although your situation is something you certainly wouldn't choose and that we would all wish away for you and Conner if we could, I do want you to know what a source of inspiration and strength you've been for me and for so many others. You absolutely amaze me. I have no doubt that when God was choosing Conner's mother, he especially chose you because he knew how much you'd love and care for that special little angel.

Name:

Mommy

Email:

Date:

30 Mar 2001

Time:

21:09:00

Comments

Laura, thanks so much for your encouragement. We are so appreciative to have friends like you!

We had a tough day today. I woke up this morning because Conner's pulse ox monitor was going off and I heard Kathi using his inexsufflator (blows and sucks air in his lungs) on him. When I walked in his room he was blue. I didn't know how long the nurse, Kathi, had been working on him but he didn't look good. I immediately grabbed the inex. tube and mask and put it back to his mouth myself. I tried and tried but his eyes were rolling back in his head and he was turning blue then purplish grey. I gave up and told Kathi he was gone, but she kept trying. After switching from mouth to mouth to the inexsufflator, Conner's eyes started to flutter. She kept trying and he opened his eyes again. It took about an hour before his color started to come back. After we got him stabilized, his mood recovered and he started talking again and smiling. I didn't think I would see him smile again. I thought today was the day that I was going to have to call John, my mom, his mom and dad, my brothers and tell them he was gone. I can't believe I still have him. He is fine and back in his room with his granddaddy watching his videos. What happened was the same thing that always happens when he gets a plug but it just was so hard to get him clear. The risk is always there. I just don't want him to go like that. It was so ugly and I will never forget the gruesome sight of death. Right after this, John got a call that Connie had fallen and hit her face and knee on the driveway. I haven't asked Connie if I can report about how she is doing-on Conner's site-but she is okay, she has scratches and a bruise on her mouth and eye and will probably be sore. Frankly, nothing is okay but I am glad we have their bodies and spirits here with us today.

Name:

Mommy

Email:

Date:

02 Apr 2001

Time:

23:21:12

Comments

Conner is better today. He actually woke up laughing. What a cutie. Conner got to visit with cousin Lauren, cousin Drew, Aunt Shannon, Uncle Billy, Uncle Jeff, Aunt Suzy, Cousin Abby, Grammy and Granddaddy Gary all this weekend. Well, from Thursday to Sun. Yay, lots of family. Conner is doing fine but I feel strange still from the incident on Friday. It really messed with my head. I can't get Conner dead out of my brain. Sorry to be so --honest-- but I am cursed with sharing the good and the bad. Thank goodness I go to counseling. I need it. I actually need to make an appointment. I hope I can report fun things Conner did this week. We'll see....

Name:

Grammy

Email:

sangar@mindspring.com

Date:

03 Apr 2001

Time:

07:56:23

Comments

Conner, we had such fun this weekend. You were really trying to communicate with us. I loved your big smiles and na na na, uh huh's. You even let me get between you and the TV so we could play "this little piggy" and "peekaboo". I hope your week will be happy and healthy and I'll see you again Saturday for little Jim's birthday and Easter Sunday. Save a few kisses for me. Take care of Mommy and Daddy. They need lots of TLC. Only you can put those smiles on their faces right now.

Name:

Bonnie Grist

Email:

bgrist@g-net.net

Date:

03 Apr 2001

Time:

08:53:17

Comments

Today I was told that you had this web sight,and after spending 2 hours reading your journal and laughing,crying,loving and a number of other emotions with you as I read, I came to realize even more what a special family you are. Your journal is so wonderful, and what a great way to keep your days with Conner with you always. I admire you so much, and can feel the undescribable love that you have for your family. You all have been in our thoughts and prayers daily, and especially when we go on our walks through the neighborhood do we lift you up. We loved seeing you all riding to Grandmommy's and Granddaddy's house the other day, and appreciated your stopping and sharing your little angel with us. He really let us know when he wanted the van to move again, didn't he? Thanks for your journal that you share with all of us. Please know how much you all are loved. Bonnie and Fred Grist P.S. We were so sorry to hear about Connie's Fall.

Name:

Miss Lucie

Email:

Date:

03 Apr 2001

Time:

17:33:29

Comments

Betsey and John, Please know we are praying for sunshine, blue skies and happy thoughts for everyone. Thanks for sharing all your ups and downs with us. You are very brave and I do agree that you have strength of the Riggs ladies. You must know how much Connie and Sonny have told me how proud they are you are in their family. I hope Conner has had a good day. We love the new pictures. I think he has grown over a foot. Those long legs seem to be getting longer. It also seems that you may have to form your own band since Conner is getting so good on the harmonica. Take care. WE love you. Miss Lucie

Name:

Belinda

Email:

belinda2@frontiernet.net

Date:

03 Apr 2001

Time:

19:52:24

Comments

Hi Betsy John, and Conner, I hope you are having a great day. I am sorry to hear about the scare you had recently with Conner. I can't imagine the fear you must live with each day that this could happen at any time. He is such a trooper. I think of you all often and admire the strength that you have. Conner worked so hard the last time I was there. I am glad that he is playing with his instruments. I still can't believe how he managed to blow the pinwheel last time and how he said 'bye' so clearly when his lips were pressed together. He amazes me so much. Hang in there! See you soon. Love, Belinda

Name:

Mommy

Email:

Date:

03 Apr 2001

Time:

20:50:59

Comments

Conner has had a pretty good day. He started out kinda grumpy for Miss Hope but came around a little later-sort of! He got visits from granddaddy and Miss Meredith and Brenda. Meredith and Brenda were Conner's teachers at Pittman Park (Brenda was actually the director but Conner didn't know).

Conner just had another choke scare (not as bad as Friday) but he's okay. You are right Belinda, you just never know. John was giving him his treatment while I was up here typing. I am shaking but it was relatively minor. UUUUUHHHHHH! Anyway, thanks for all your support. I feel like a crybaby always telling how bad everything is. I wish I could be more positive. I try to do positive things-play with Conner, exercise, work....but some days just are impossible. Anyway, I will be more positive tomorrow. I have to be, right? I have to report to you who are supporting us that we are getting along better! Conner is a sweetie. Oh, Robyn-Conner loves his animal video! He was watching it a little while ago and cried when it ended so we put it in again. He loves it. The babymugs broke in the mail. We'll have to look for another. Thanks for supporting us and thinking of us. It makes the bad days a little more bearable. What is really difficult is to know that there are so many other families who have kids in Conner's condition (or two kids like Conner) and are going through the exact same things. But he is our angel and we love every second with him. Talk soon, thanks for thinking of us.

Name:

Mommy

Email:

Date:

04 Apr 2001

Time:

22:52:36

Comments

Conner had a good day. No clogs. He's been pretty clear today. I couldn't get out of bed. Good thing he was so good and napped well and enjoyed a couple of good movies! I finally took a shower tonight at 10. I guess this is how depression goes. I had help today between Hope, Conner sleeping and John getting home from work-thank goodness...I stayed up with Conner last night but that's not why I am tired. I am just having a hard time pepping up. Well, okay tomorrow will be better right? It will. I can't feel sorry for myself when so many others are in the same position I am in. I have to do my job...be here for Conner and make his life happy...deep breath....here I go......

thanks for supporting us, we know you're out there.

Name:

Meredith

Email:

mereday@hotmail.com

Date:

04 Apr 2001

Time:

23:09:25

Comments

Hey Riggs' Family! I had a GRAND time playing with you yesterday, Conner!! I do believe we could enter you into the Guiness Book of World Records for the World's Youngest Truly Talented Harmonica Player, John Conner Riggs, Jr.

I am truly thankful for your Mommy and Daddy letting me have the chance to come and play and spend time with their very special big boy. God ONLY picks VERY SPECIAL parents to take care of one of His special needs ANGELS. Betsy and John- I am turly inspired by ya'lls strength and eagerness to share and be open. I know in my heart that God chose the two of you just for Conner because of your strength and dedication and ability to give Conner your UNCONDITIONAL LOVE and ATTENTION. Ya'll are THE BEST!! Conner is the BEST!!! MUCH LOVE! p.s. I'm here if I can ever do ANYTHING I would more than love to.

Name:

Mommy

Email:

Date:

05 Apr 2001

Time:

12:39:38

Comments

Well today is a much better day. MUCH more manageable. It helps to have so much support-spoiled with support and thoughts and prayers-for Conner and us. I don't know what is different except some days you just wake up and can feel the difference. Today just feels better.

Conner is being funny. He was liking Barney on tv(he never has before) and it went off and he started saying, no...no.. Cute. He's frowning at the teletubbies. We'll have to put his new Veggietales video in now. Thanks so much for sending this to Conner with all his balloons-he was very surprised to get a bundle of balloons and new video this morning-thanks to the Grist's, Sylvia and Bob Brannen, Mari and Patrick Hopkins, and Ashley and Jamie Brannen. We owe a special thanks to you. Well, we are going to have a good day today. Big smiles and looking forward to cousin Jim's birthday party and another visit from Grammy (and Granddaddy Gary and Grandmommy Connie and granddaddy Sonny). Conner calls-change the teletubbies, mommy!

Name:

me again

Email:

Date:

05 Apr 2001

Time:

22:17:54

Comments

Okay, I am feeling sort of normal again. Conner had a real normal day, too. Connie will hopefully feel a little better in the next few days. Her last radiation treatment and chemo (for a couple of weeks) was today. So, hopefully the nausea will lighten up. We just got to keep going along. If so many others can, I can too! Why should I be a big baby? We all have bad days, weeks, months, years but I gotta pull me up, right???!!! Okay, Conner is so sweet and funny. He just has such a funny little personality with all kinds of preferences and moods-just like other two year olds. But I guess he's pretty good for a "terrible two." At least he has a sense of humor. Everytime he is pouting and I can't help but start laughing at him, he starts smiling too. I can usually get him to smile. Grammy we are waiting for your visit. I think Conner is trying to say, "Granddaddy." It is very cute. It comes out, "nndada." You can just barely hear the "nn." But I can because I am his mom. Talk soon, Betsey

Name:

Mommy

Email:

Date:

07 Apr 2001

Time:

00:09:27

Comments

Much better day. Conner did great today. Hope wasn't feeling good though, so she needed a break. She is pregnant so she needs more breaks than she takes (she never takes a break!) I enjoyed my day with Conner and I even got out and did yard work when John got home. Conner said "banana" today! "NaNa" He always says that but I knew he said banana today. The therapist even heard him when the Wiggles were singing it on the video and Conner said, "NaNA." 3 times. Oh, he's been singing and talking---loudly. Well, he's done great the past couple of days so we are hoping he will do great at the birthday party tomorrow. Report later, Betsey

Name:

Mommy

Email:

Date:

08 Apr 2001

Time:

13:04:44

Comments

Conner did great at the birthday party. We hauled all his equipment to Aunt Julie's and Uncle Jim's and cousin Jim's. Carly pulled Conner around in his wagon. Tara, you better watch out...I think Conner was flirting with Carly a little. He is a lady's man. He just watched everybody and he'd get a little fussy but then he'd start talking. I don't think he quite knew what to do around all those people. He had the perfect day, though. Conner woke up early with his pulse rate and O2 looking perfect. He took an early nap so he was all rested for the party. Then he crashed about 8 or 9 pm. He enjoyed his visit with grammy and granddaddy (and grandmommy Connie and GDDY Sonny too). Lots of love this weekend. Talk soon, Betsey.

Name:

Mommy

Email:

Date:

09 Apr 2001

Time:

22:04:02

Comments

Conner had a pretty good day. He started out kinda fussy and had an attitude with the nurse, Kathi. I read to him a little to try to get him to come around. He got better and then.....Belinda came!!! He loves playing with Miss Belinda. They played with play dough and Easter toys and made an Easter Bunny picture with cotton ball ears! Conner did such a great job and worked so hard to have been so tired. I didn't know he could do all those things. Belinda, later Conner blew the whistle that was in the Easter packet you gave him. He can do it on his bipap. He put his lips all the way around that whistle. Can you believe that? Conner got to visit with Tara today, too. Tara, he couldn't go to sleep for hours after you left. I think he thought if he called long enough, you'd come back.

He hasn't been out of his room in two days now but he's not complaining yet-and he's had lots of company. Conner has done pretty good but we can't get his naps timed quite right and he wastes so much time falling asleep that we just can't get him hardly any time away from the bipap. Maybe tomorrow will be a little better structured and have more appropriate timing. That sounds kind of stupid but we are sort of at his weird little frail diseased body's mercy. I just do what Conner's sma tells me to do-which can be unpredictable and highly frustrating (not necessarily for me but for Conner) at times.

Connie feeling a bit better but you know...chemo can't make you feel great, so "better" is a relative term. Connie and Conner did get to visit a little this evening. It was great to have his grandmommy-Nana..as he can say..back over for a visit. Just like the old days...love, love

Name:

Mommy

Email:

Date:

10 Apr 2001

Time:

22:09:32

Comments

Today was okay. Nothing spectacular. People are kinda down. Ups and down. I have been working out in the yard to soothe my downs and bring me up. I can take care of me but it is sad to see others down and not be able to do anything about it.

Conner is such a sweetie. He likes the movie, Babe, now. We tried it when he was younger and he didn't like it but he does now. He is finally asleep. It seems he has been awake for two days. He has hardly napped at all and gone to bed late and gotten up early for two days-for some reason. But tonight he went on to sleep by 9:30 during his movie. Thank goodness! He is my precious baby...precious, sweet baby who gives me lots of laughs and love.

Name:

Miss Lucie

Email:

Date:

11 Apr 2001

Time:

15:52:48

Comments

Betsey, I hope Conner and all your family will have a very "hoppy" Easter. I know the Easter Bunny will visit Conner. Be sure to take more pictures. The teachers on my hall are anxious to see how much he has grown. Betsey, you are doing a great job. Here is a big huuuuuuuuuuggggggggggg for all of you to let you know how much we love you. Happy Easter!!! Miss Lucie

Name:

Mommy

Email:

Date:

11 Apr 2001

Time:

23:53:25

Comments

I will try to send some pictures to be posted tonight! Conner had his picture taken today by Bonnie Grist Johnson. Thank you Bonnie. We enjoyed visiting with you and your momma today. You are welcome anytime. Today was a good day. Despite the fact that Conner woke up with a bloody dripping nose and thick yuck stuff in his throat, he turned around quick. I didn't use the humidifier last night because of the rash on his face from the moisture. I think we paid for it this morning. That heated humidifier connected to his bipap has been good for keeping his nose moist and those secretions thinned out and we've found a solution to the rash. That is good....So he had a good nap and woke up a little cranky for his nice guests but came around when we put on an Elmo video. Baby Jim was over and I think Conner got a little agitated when I gave him Conner's bells on a stick.

Conner is getting real cute with his usage of the word, "no." If something's continuously going on he doesn't like, he'll do a continuous, "UH-uh-UH-uh-UH-uh....." If you do some kind of isolated act in particular that he didn't like, he'll do, "NAAAAA!" His two favorite and best things he says are "DAdaDAdaDAda" and "NAAAA" NAA is mommy and NO probably because he often wants to tell me no. He is a super cutie. Anyway, Connie got to get over and visit while our guests were here, too. Very nice. Also, Hope made it back today after a little break from us (her daughter wasn't feeling well). Conner was so happy to see her. She gave him a bath and took him outside before his nap. Conner loves Miss Hope. She does a great job with him. But her baby's coming soon!!!! Okay, I can't think of anything else for now. We haven't heard anything about the vent. We'll see...

Name:

Betsey

Email:

Date:

12 Apr 2001

Time:

11:12:13

Comments

In November I was reading the families of sma page message board, as I do every day and have done for a year and a half now, and I came across the poem, To My Child. Someone had repeated it on the board saying a friend had sent it to her. Well I know why the friend sent her those words of how to adequately appreciate your child. I know that I can't do any of those things with Conner and if I have a single message to anyone it is just what that poem says. Sometimes you have to forget the anger and make way for easy going, special things that make life worth living. I have received so many compliments on this poem that I found in the most likely place, from a message board of hope and encouragement. There was an unlikely, unfortunate mistake made however. I thought the best way to correct it was to post the email I received here.

Hello, This poem that you have on your site is a poem that I wrote,I have no idea where you found this and who the person is that you are claiming wrote it. this was published in a newsletter, and also in a book a friend of mine wrote. Please contact me immediately, as I am very upset about the fact that not only is MY poem on your site, but that you are also claiming it as someone elses. I have printed out this page, for my own information, and for evidence of your breach of copyright. Please contact me asap. Sally Meyer jsmeyer@pop.slkc.qwest.net

Needless to say, that is why it is being removed from this page. I will find a replacement. Talk soon, Betsey

Name:

Alison

Email:

Date:

12 Apr 2001

Time:

14:02:29

Comments

Betsey - I just wanted you to see the email I sent Sally Meyer after I read your most recent entry.

Dear Sally Meyer,

It is hard to believe someone who wrote such a beautiful poem inspiring such hope and encouragement could be so callous. The "breach of copyright" that you refer to was obviously an unintentional error. The person you're acusing of "breach of copyright" found your poem to be a source of comfort and inspiration in the most horrifying of circumstances. You obviously did not take the time to notice her child is slowly dying of a fatal illness of which there is no cure.

It is certainly understandable that you would like to to receive credit for your poem. However, under the circumstances, we feel you could have handled the situation better. What happened to the compassion so elequently expressed in your poem?

In closing, we want to say we are glad to have had the opportunity to read your poem. Unfortunately, it's meaning is now diminished by your insensitive message to Betsey regarding the posting of your poem on her website.

Sincerely, Alison Teems & Christa Huggins

Name:

Laura Marsh

Email:

lmarsh@frontiernet.net

Date:

12 Apr 2001

Time:

17:13:01

Comments

Good for Alison and Christa! I personally can't send her an e-mail at the moment because I am so incensed that she would send that to you that my e-mail would likely contain language violating numerous FCC laws. People never cease to amaze me!

On a brighter note, I hope the Easter Bunny is good to Conner on Sunday! It sounds like he's been very good and deserves a very special Easter.

Much, much love, Laura

Name:

Grammy

Email:

sangar@mindspring.com

Date:

12 Apr 2001

Time:

19:09:24

Comments

Well, Betsey, my girl, I'm now going to give Ms. Meyer my two cents worth and I won't bother to even tell you what I say...you can guess. Happy Easter to my little honey bunny! Love you Mom

Name:

Mommy

Email:

Date:

12 Apr 2001

Time:

19:55:00

Comments

Conner is doing fine today. He may have some kind of urinary infection from his behavior today and the last couple of days but hopefully we can find out tomorrow with a test. You never know with Conner. He told me his pp hurt when I asked him. But,?????

Sorry to upset my friends and family like that. It is only fair to post her apology that I appreciate. I actually wasn't mad but just disappointed that the words had lost meaning. But thanks to you who explained the situation to her and here is what she wrote:

Dear Betsey, First I must apologize, I did not read your website, I found out from someone who just sent me an angry email, that your child is ill and dying. I am sorry that I was insensitive to this, I would not do anything to cause anyone any needless heartache. Let me tell you a bit about my poem, I wrote it for my son Dhylan, who I lost.. to autism. Yes, he is still here, but not the little boy we once had. I wrote that poem for him, after a trying day, of screaming and crying, and not being able to reach him. I had put him to bed and was feeling very guilty. Anyway, I had the poem on a website and since then it has been sent all over the web with author unknown, or with someone else claiming copyright, I had put in a search late last night and found more sites with it on. I was upset, then when I read yours and it had that someone else had written it, well I just got too upset and sent off my email to you, in anger. I should have taken a break and thought it through. Another reason is that someone, (I do not know who,) has added to the poem, the last verse, which deals with the issues of mothers who have lost their children in death or due to other horrible things, I did NOT write that part, someone added it and plagiarized my original text. If you would still like to use it, I will send you the original text, it's not the same, and may not have the same meaning to you, as it was written to a child with autism, but you are welcome to use it, with my permission. also a link to my other poetry. Betsey, I can't imagine your pain, and I am terribly sorry for it, I lost two c hildren to miscarriage, and then our 8th child Dhylan became autistic at age two. He is now doing better than we ever imagined, after four long years of intensive therapy. My heart goes out to you for your suffering, and if there is anything I could do to ease it, then I would. please forgive my foolishness. God bless, Sally http://trainland.tripod.com/poems1.htm

Just For This Day

Just for this morning I am going to smile when I see your face, and laugh when I feel like crying.

Just for this morning I will let you wake up softly in your flannel p.j.'s and hold you until you are ready to stir.

Just for this morning, I will let you choose what you want to wear, and I will say how beautiful you are.

Just for this morning I will step over the laundry to pick you up, and take you to the park to play

Just for this morning I will leave the dishes in the sink, and let you teach me how to put your puzzle together.

Just for this afternoon I will unplug the telephone and keep the computer off, and sit with you in the garden blowing bubbles.

Just for this afternoon I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck and I will buy you one, if he comes by.

Just for this afternoon I wont worry about what you are going to be when you grow up, I will simply love you, for the joy you bring me

Just for this afternoon, I will let you help me make cookies, and I wont stand over you. . . trying to 'fix things.

Just for this afternoon, I will take you to McDonalds and buy us both a 'Happy Meal' So you can have two toys.

Just for this evening, I will hold you in my arms and tell you the story of how you were born, and how much we love you

Just for this evening, I will let you splash in the bathtub, and I wont get angry when you pour water over your sisters head.

Just for this evening I will let you stay up late, while we sit on the porch swing

and count all the stars.

Just for this evening I will bring you glasses of water, and snuggle beside you for hours, and miss my favorite t.v. show.

Just for this evening when I kneel down to pray, I will simply be grateful for all that I have, and not ask for anything,

Except Just one more day.

c. 1999 Sally Meyer.

(for Dhylan)

Name:

Email:

Date:

12 Apr 2001

Time:

21:44:20

Comments

It made me so sad to know that anyone would misunderstand your intentions, even though she didn't know your circumstances.You certainly didn't deserve or need that. I'm so glad that she realized what she had done and wrote you a letter of apology. We loved seeing you and your precious family yesterday. We marvel at your courage and strength.Please know you all are in our hearts.You are soooooo special!!!! Miss Bonnie

Name:

Mommy

Email:

Date:

13 Apr 2001

Time:

13:41:47

Comments

Happy Birthday to Conner! 21 months, right? Wow that's a lot of candles. We'll we're baggin' Conner's pp-if he'll ever go! I put his hand in warm water-but that didn't work. Time and his finishing his food will do the deed. I am really sure you all want to hear this. Conner's doing pretty good today. We'll see how he does the rest of the day. He's back in his room talking very loudly right now. Well, talk soon. Hope you all have a happy (hoppy-Miss Lucie) Easter. I would like to cook on Sun. Maybe I can get a crowd over.

Name:

Belinda

Email:

belinda2@frontiernet.net

Date:

14 Apr 2001

Time:

08:58:04

Comments

Hi Conner, Betsey, & John: Just a note to say "Happy Easter". I look forward to seeing you next week. So glad to hear that Conner is using his speech. Love, Belinda

Name:

Auntie Lisa

Email:

lisa__crump@hotmail.com

Date:

15 Apr 2001

Time:

07:26:08

Comments

HAPPY EASTER!!!! Conner, I hope you have a wonderful day & the Easter bunny brings you lots of goodies.

I miss you all, thanks for keeping us all updated through this webpage. Betsey, I look forward to your daily entries to see how everyone is doing. Please give Ms. Connie a big hug for me & tell her she is in my prayers. Have a wonderful day!!!

Name:

Grammy

Email:

sangar@mindspring.com

Date:

15 Apr 2001

Time:

17:48:22

Comments

Happy Easter Riggs family, Wish I could be with you all. I was so very sorry to hear about Connie's setback. I only wish I could absorb some of her pain. She has had entirely too much to endure in these recent weeks...months...years. I hope there is a time in the near future when all will be good with her and with Conner and we can have some happy time together. I'm sure your dinner was a real success Betsey...you're a natural "chef" like your Daddy. I had to learn everything I know and I still screw it up pretty good (haven't burned anything lately, though) Love you all, Mom

Name:

Mommy

Email:

Date:

15 Apr 2001

Time:

19:46:14

Comments

Well, I got all the food done and eggs dyed. We got up pretty late this morning and I finished cooking. Julie, Jim, and baby Jim came and brought lots of good food. Daniel and Connie and Sonny came. We all ate but with a reminder of the difficulties that Connie must go through. She accidentally hurt herself again due to the medication affecting her sense of balance. I put a little pretty umbrella in everyone's drink to try to add a little pizazz to the party. Maybe it helped, right? You know so many other people are going through things equally or worse than us and that is bad. Really bad. So, how to get through the day... Other people do it. What do they do? Oh, let's see...while Connie is getting stitches, we are sleeping, taking care of Conner, eating more...nothing much-I guess just pushing through until its over. Maybe tomorrow will be better. The lights are out in the house. Maybe turning the lights on will ease the somber mood. I tried playing with Conner but he wanted me to leave him alone-Babe is on and he is cranky and a little tired. I got him all situated and now I have been instructed by his facial expressions to me to leave him be. Hmmm...sounds familiar, like another male in this household. Well, I am rambling. I am off to turn on lights in the house and see if John will tend to Conner while I watch a movie or something or I don't know-do nothing. Oh, a break in the clouds, that is a good sign. I haven't gone nuts, I am just bored. Sorry, bye. We're fine-just UHHHHH-wish the mood were a little lighter, a little more hopeful-not just for us but for everyone in bad situations. I am fine and I am coping and if it weren't this, it'd probably be something else. So, just keep living. I guess this is what it is all about. love, love

Name:

Mommy

Email:

Date:

16 Apr 2001

Time:

13:37:34

Comments

We found this letter that Conner wrote to his Grandmommy and GDDY for Christmas last year and put it on the site. Conner is so sweet and precious. He was fussing at the nurse a second ago because his video went off and he started yelling, "NAAAAAA! NAAAAAA!" over and over. She started fussing back at him which was really funny. They were having a fight! It was hilarious. Anyway, he's doing fine. His pulse rate is a bit high but the nurse gave him some motrin and robitussin so maybe he'll have a good nap. He was up from about 5 until 9 this morning. Something may be bugging him. We'll see...otherwise he's doing okay and acting like his normal feisty self.

Name:

Grammy

Email:

sangar@mindspring.com

Date:

17 Apr 2001

Time:

17:51:57

Comments

The nurse that Betsey is refering to is Kathy. She is a pretty special lady. I have had the pleasure of visiting with her a couple of times when she arrived early in the morning and Betsey was still sleeping. Being a morning person, I enjoy having my coffee and conversing with someone. Kathy is a very caring and capable lady. Conner may "fuss" at her, but I'm sure he has come to love and appreciate her and will miss her, as we all will, when she leaves to go north and care for her own family. We will try to stay in touch with her because quality people are not to be forgotten in our lives...no matter how far away they may go.

Name:

Mommy

Email:

Date:

18 Apr 2001

Time:

00:27:54

Comments

We will miss Kathi...and Hope when she goes to have her sweet baby. We enjoyed Mrs. Godbee, Hope and Laura's visit today and Hope and Laura yesterday. Conner and Laura just kinda glance at each other but have their own agendas going on. Today was a good day. Sunny (but cool). Sunny days just end up better. We got Conner good and clear and hopefully we'll see his pulse rate stay down tomorrow.

Conner was so cute tonight. He knows that after his treatment whenever the tv goes off anytime after that-it doesn't come back on. He also knows that the blue screen means he is at a crucial moment of either another video or off for good. During the day, he cries when the blue screen is on because he KNOWS we will put on a video and he demands it immediately but tonight he knew there was a good chance I would turn it off. He sat there very quiet and patiently waiting for about ten minutes just staring at the blue screen. The blue screen to Conner was great at that point because it meant hope. The tv was actually still on, therefore there was hope. I went to rewind his video and sat for a minute in the den and John came in and told me how patiently Conner was waiting in the room. I thought for sure he'd be crying for a video. John and I peeked in and watched him. He was so funny just sitting there thinking, "Please mommy, I'm being good. She hasn't actually turned off the tv so there is still hope. What's it going to be? please, please, please-just one more" So, we put in one more and then tv off and he went right to sleep. When I turned him over I kissed his cheek and said, "night, night" and he said, "nigh, nigh." Oh, it was so cute and perfect. He is such a smartie. love, love.

Name:

Meredith Brown

Email:

mereday@hotmail.com

Date:

18 Apr 2001

Time:

12:31:51

Comments

Conner- I am so glad to hear that the Easter Bunny hopped by your house. I'm coming to visit next week and I'd like to hear you play your harmonica. I'll call Mommy and make sure it is ok if I stop by! Love- Meredith

Name:

Mommy

Email:

Date:

18 Apr 2001

Time:

12:59:29

Comments

Meredith, just let me know right before you want to come and I'll tell you if he's awake or not. I forgot to mention all of Conner's visitors he had on Sat. Belinda (speech therapist) brought her son and her doggy over for Conner to meet. Then Conner's cousins, aunts and grandparents came over. He had a nice time outside for a little bit but I think that is where these tough mornings are coming from. It'll wear off, it just takes a little time. Belinda, thanks for all the Easter surprises. Conner played with the finger paints the day before yesterday and made you and Ryan a picture. Conner is being taken care of by Kathi right now and he is doing okay. His sleep is a bit off but he did just fine through the night-turning, feeding, adjusting, changing diaper!-that was what woke him up at 6:30 and he never went back to sleep-then you have to change his face rags every few minutes when he is awake. Anyway, no big deal-its not too hard when he is not sick, just tedious. And what a funny little thing he is. If he is awake and his tv is not on, he will yell until someone comes in the room with hopes that that person will ease him from his torture of no tv.

Name:

Mommy

Email:

Date:

19 Apr 2001

Time:

22:48:35

Comments

Conner did good today. Woke up talking and gave him his treatment. He watched the tv and visited with MaMa until his nap a couple of hours later. He talked and talked until I patted his hiney for a few minutes, then he passed out. Belinda came later and Conner cried at the play dough. That was funny! But he was enjoying the other activities and didn't like the transitions. He likes his brown bear book and song (that Ryan and Belinda gave him). He watched Babe and Elmo-then treatment and put to bed. Blue's Clues and lights off! Yay. I hope he will fall asleep soon so he'll have another good day tomorrow. Good night.

Name:

Mommy

Email:

Date:

21 Apr 2001

Time:

00:33:36

Comments

Something has been up with Conner the past few weeks or couple of months and I have noticed his black ear. Anyway, the nurse today suggested thrush with a yeast infection in the ear and I think I agree and I think the Dr. and nurse do too so we now have some medicine for it. We'll recheck it soon and see if it has cleared. I knew something was up. Things just weren't quite right. I should've asked about that ear but I was lookin' for another sign-like fever or something. I KNEW I SHOULD'VE asked about that left ear-I saw the stuff that was there!!!! If I have ever learned anything, it is to trust my intuition. The trick is that if your intuition is wrong half of the time, you have to pursue it so you don't won't miss out on that other half. I suppose that is case with any mother with the exception that my mistake may cost Conner his life 2,3,4,5 or more months sooner than necessary. I don't know. Talk soon, Betsey.

Name:

Mommy

Email:

Date:

22 Apr 2001

Time:

00:50:27

Comments

What a day. Conner almost died at 10:00 am and was standing up at 3:30 pm. He had another "episode." That happens and it definately scared the nurse and me and grammy and daddy. But Conner is fine now. His secretions were like glue this morning-not good! When he woke from his nap, he'd had Robitussin and other necessary medicines to help. With his bipap still on I started picking him up and singing "Ring around the Rosy" and when I got to the "all fall down" part, I'd drop him(put him down fast) to the bed and he'd laugh and laugh. If I didn't do it again fast enough, he'd pout and cry. Then I started sitting him up, holding his chin and the back of his head and neck- and he loved it! Then John came in and put his feet on the floor and held his hiney and I held his shoulders and his head-he was leaning against the bed. HE WAS STANDING!!!!! It was so cute. He is tall, you know? So, Conner has done pretty well the rest of the day. We are letting him stay up and watch videos tonight. And he is milking that all he can. Conner didn't know we were letting him continue to stay up and he'd get nervous every time we turned him, thinking "oh gosh, this is it. They're putting me to bed now. Tv off." But nope. He is staying up as long as that tv is on and it is late and he was so tired. What a cutie. Talk later.

Name:

Mommy

Email:

Date:

22 Apr 2001

Time:

21:49:33

Comments

I thought Conner was opera singing but then I figured out his video was off. I got him two more Baby Einstein videos-Baby Shakespeare and Baby Bach. He loves them. They are his night-night videos. Actually, he watches them anytime but they are good to wind him down at night. He had a good day-not too much to worry about. We are just trying to keep him comfortable-like always. I have enjoyed him so much lately. Conner just learns more and more everyday and he is such a little cutie with an attitude. He spent the first have of the day not talking or smiling. Every once in a while, he gives the nurses attitude. I think he wants Mommy or Daddy sometimes and if I'm not there, he will pout. The good thing about me is that I feel like I can read his mind somtimes about what he wants and I think he expects everyone else to "just know." Soon, he will have his yes and no completely understood and it will be much easier. Time to go tell baby nigh-nigh. He sounds like he is breathing pretty restfully.

We enjoyed Grammy and Granddaddy's visit this weekend. We went and ate at El Sombrero and then played pool. I had a great time. I love to play pool! Talk later, thanks for caring!

Name:

Shelley

Email:

Date:

23 Apr 2001

Time:

17:12:36

Comments

Betsey, I'm so glad Conner is better and survived this last episode! AND I'm especially glad you are getting to enjoy your sweet boy...playing with him! He is so precious! I am coming to the 'boro this weekend. I'll call when I get to town. Maybe if things are going well with him, I can come by and visit. I want to bring Conner something...I'm thinking maybe some movies, or does he already have to many? What am I saying! If he's like my kids you can never have TOO many movies! Haha See you soon, Shelley

Name:

Grammy

Email:

sangar@mindspring.com

Date:

24 Apr 2001

Time:

08:33:49

Comments

Conner boy, I sure do miss you after our visit last Friday and Sat. morning. Mommy is right, you did give us a scare. I feel so helpless when you need help and everyone is rushing around knowing what to do and I just stand there with my teeth clenched not knowing which way to turn or what to do...just praying that you will come back around and not leave us like that. And then ten minutes later you are smiling and trying to let everyone know that it's all right. You're here and you're happy and we had better enjoy you as much as we can for now. You are here with us for whatever time God allows and we must accept that and cherish the time. I'm going to look for Babe II for you. You enjoy Babe so much...La La La. I wish I had seen you "standing up" for mommy and daddy. Yes, you are a big tall boy and so very handsome. I showed your pictures to all the Charleston folks and they couldn't get over what a cutie you are. I assured them you are just as smart as you are cute. Hope you and Mommy have a good happy day today. You must try to keep her cheered up as much as you can. Grammy will try to see you soon and do all the silly wiggles dances for you.

Name:

Mommy

Email:

Date:

24 Apr 2001

Time:

23:57:26

Comments

Shelley, please give us a call. We should be around. I will probably be working in the yard. I am obsessed now with getting the stuff right around the back of the house cleaned up so that we can get Conner out back and enjoy sitting out there. That is easier when there are flowers and nice landscaping (and citronella). I have been wanting to do that since I moved in this house. When we bought this house it was the yard that convinced me it was "our" house. Then I got pregnant and Conner was sick and our entire house and yard just got left behind. It is so nice to do the things that I thought I wouldn't be able to do. It is nice to do things that I thought I WOULD be able to have done. I don't care if I have to do it myself. I get exercise, sun and a sense of accomplishment. The back is going to be so nice when I finish. I can't wait to get it done and get Conner out there in his "pool." We got a life vest for him that has a head piece to keep his neck and head stable and above water while his body is in the water. I spent all last summer unsuccessful at finding anything to assist him and so he developed a dislike to the water-- until this winter when we got his bath chair that is very stable in the tub. He no longer cries when we put him in the tub! So, hopefully he is ready to enter his jacuzzi this summer. That jacuzzi, by the way, was purchased by the wonderful people of Statesboro who had fundraisers for us. We did pay bills with that money but, for Conner, we got a "swimming pool" for water therapy. I'll have to report on the progress he makes this summer having worked his muscles in the water(with the direction of his therapists)!

Also, I am going to talk to a college class tomorrow about sma. It is a special education class at Georgia Southern. I hope I give accurate info. about SMA. I hate to be inaccurate and the details of sma are kind of hard to understand. I have done it before and enjoyed passing along the info.

ALSO----Tara, Conner said he is proud of you and thanks you for talking so sweetly about him. We are all proud of what a wonderful young lady you are.

Love, love- Betsey

Name:

Mommy

Email:

Date:

27 Apr 2001

Time:

17:32:25

Comments

Conner is doing okay today. He has an ear thing. Stinky ear. I hope you aren't eating. Connie's not been feeling well. Oh, I don't know what to say. I had Conner to myself last night and he did pretty well but had equipment failure which caused some potentially serious problems but we're fixed now. Conner got to swing and ride in his wagon last evening but all he cares about right now is Babe. Over and Over and he cries if you put anything else in. I am shocked that he just watched a Veggietales video. Okay, I am off to tend to Conner since his video just finished. He whining to me because I am typing and it is so funny. He's giving me the evil eye-here I come sweetie!!!!! Talk later.

Name:

Betsey

Email:

Date:

27 Apr 2001

Time:

23:37:08

Comments

Connie's not doing well tonight. I will write more when we know more. I really don't know what to say about it. To ask for thoughts and prayers is a waste of breath since I know you already have Connie right where she needs to be. I am afraid to cry because if I start I may not stop. I haven't cried, really cried, in weeks. Conner needs so much attention-I can't go change videos and kiss on him and give him treatments sobbing all over him. But my heart breaks for the pain I see my son and my mother-in-law in. Our bodies are so fragile-we forget sometimes. I don't. My heart is just broken for John, Sonny, Jim, Daniel, MaMa and of course all of Connie's friends who have loved her all of these years. If she could read this-she'd think I am being too dramatic, maybe. But I am reacting to what I see in my healthy body. And it doesn't look very good. It looks very hard. And she shouldn't be going through this.

Name:

Betsey

Email:

Date:

29 Apr 2001

Time:

09:17:09

Comments

Conner is doing fine. His ear looked much better this morning and his pulse rate is continuing to stay low. So, good. Connie is slipping away from us. But I don't know how this is going to happen. I don't know how long Connie will stay in the hospital with the morphine. I don't know if there will be a time when she will be moved home. I don't know anything except she was in pain and she went to the hospital and she is being given morphine. I am sorry to have to report such sad news. Family and friends are constantly with her. We were able to say very important things to one another yesterday. And she said she had so many other things she wanted to do. Our hearts are broken and, if you know Connie, yours is, too.

Name:

Betsey

Email:

Date:

29 Apr 2001

Time:

17:10:31

Comments

Connie has been asking about Conner all day long. We called the house and she spoke to him and heard his voice. She is afraid that he is not doing well and we haven't told her. She very much wants to be waiting for him when he passes. We showed her video of him and baby Jim today too. She really like that. Later Connie began asking about Conner again and we assured her that he is perfectly fine. It is very difficult for her to have people coming by though because, if you know Connie, she wants to acknowledge you and it is very hard for her. It wears her out to speak. But it is nice for the family to see familiar faces and pass along the message to her who has come by or who is asking for her. I love her so much, so much...I want her back-the unsick Connie. She's been gone for a little while but I want her! I need to go because I am starting to grieve and I need to wait. Thanks for your support.

Name:

Betsey

Email:

Date:

30 Apr 2001

Time:

14:35:48

Comments

There is no change right now with Connie. Sonny is trying to get her home. I was concerned about a bed but hospice will take care of all those details. Sonny just wants it done as painlessly as possible. The doctor explained to us yesterday that what they do is give her a shot of morphine about ten minutes before she makes a move. He said that if she was moved and it hurt her, it would take hours for the pain to subside. He said that once the cancer gets into the bones it is very, very painful and the pain moves. Well, Conner has thick spit and his suction was working good this morning. Hope got all that settled though and I slept. I slept until 2 pm. I was dreaming about coffee and food right before I woke up.

Name:

Betsey

Email:

Date:

30 Apr 2001

Time:

14:45:39

Comments

There is no change right now with Connie. Sonny is trying to get her home. I was concerned about a bed but hospice will take care of all those details. Sonny just wants it done as painlessly as possible. The doctor explained to us yesterday that what they do is give her a shot of morphine about ten minutes before she makes a move. He said that if she was moved and it hurt her, it would take hours for the pain to subside. He said that once the cancer gets into the bones it is very, very painful and the pain moves. Well, Conner has thick spit and his suction wasn't working good this morning. Hope got all that settled though and I slept. I slept until 2 pm. I was dreaming about coffee and food right before I woke up. OOps I think I have entered this message twice. Anyway, Conner is doing okay but he knows something is up. He wouldn't let me go out of his room last night. I had stuff to do and everytime I'd go out for a second he'd whine until I got back and sat right with him. Then his pulse rate would settle and he'd be fine again. He's sleeping nicely now. He is so sweet.

Name:

Auntie Reea

Email:

Ree-a@msn.com

Date:

30 Apr 2001

Time:

16:14:00

Comments

Betsey- my thoughts and prayers are with you and your whole family right now. Especially for Mrs. Connie that her pain won't be so bad. Kisses and hugs for you all. I'll be thinking of you!

Name:

Auntie Reea

Email:

Ree-a@msn.com

Date:

30 Apr 2001

Time:

16:14:12

Comments

Betsey- my thoughts and prayers are with you and your whole family right now. Especially for Mrs. Connie that her pain won't be so bad. Kisses and hugs for you all. I'll be thinking of you!

Name:

amanda

Email:

Date:

01 May 2001

Time:

13:00:56

Comments

Name:

Amanda Cartee

Email:

acartee@bulloch.k12.ga.us

Date:

01 May 2001

Time:

13:03:04

Comments

Hey Conner!!

I hope you are having a good day. Tell mama and daddy that I am thinking about them today and that I hope your grandmamma Connie is resting well today. Please tell them to call me when they need another meal. I think about ya'll all of the time.

Bye for now! Amanda Cartee

Name:

Amanda Cartee

Email:

acartee@bulloch.k12.ga.us

Date:

01 May 2001

Time:

13:03:12

Comments

Hey Conner!!

I hope you are having a good day. Tell mama and daddy that I am thinking about them today and that I hope your grandmamma Connie is resting well today. Please tell them to call me when they need another meal. I think about ya'll all of the time.

Bye for now! Amanda Cartee

Name:

Miss Lucie

Email:

lucimck@yahoo.com

Date:

01 May 2001

Time:

15:59:03

Comments

Betsey, Please, please, please know Mandi, Mark and I are praying for you, John, and Conner. Please kiss Connie, my dear friend, for me. I wish so I lived closer so I could help in some way. All my energy is given to prayer for no pain and peace of mind. We love you so very much. Please give hugs to Sonny, Jim, John, and Daniel. Miss Lucie

Name:

Meredith

Email:

mereday@hotmail.com

Date:

01 May 2001

Time:

21:28:08

Comments

Betsey- Hey! This past week has been crazy. I'm so sorry I haven't been by to see Conner. I wonder if he likes to get mail??? Anyway ... I'm going to come by real soon.(I know you wish I'd stop saying it and do it.) I'm so sorry to hear of Mrs. Connie and the state that she is in. I know the feelings of wanting her pain free and yet wanting her here. I know it is so hard to watch someone so strong yet so weak. I can remember the girls' mother, it was just a year ago when we were in the same postion. Hospice is a WONDERFUL program. I'd love to bring a meal by next week... is there a certain day or should I call? Let me know if you have a hankerin' for something specific. <>< Meredith

Name:

Me

Email:

Date:

01 May 2001

Time:

23:52:49

Comments

Thanks Meredith, Amanda, Miss Lucie, Maria and all of our other loving and caring friends out there who have been thinking of us. I must tell you that getting good food is wonderful. I think though we never know when we are going to use "let's go get something to eat" as a way to take a break from the tension of the hospital or the whole situation. It seems when Conner was in the hospital, our days began to revolve around when and where we would eat. But that is usually during the day, not supper. We appreciate all the food people have brought. Now we just need to know how to get all the dishes back to the correct people! I am getting fat with all this good food, by the way. The desserts that have been sent are getting me super fat.

Well, Connie's day yesterday was not too good and she spent most of the day unresponsive until the medication was lightened up. Today she spoke and even made sense in a lot ways and joked a bit. Later we took Conner up to the hospital (I was a little nervous about that with the icky germs and all) but I am glad we did because Connie talked to Conner and she touched him and stared at him. We were all there at the same time today-John, me, Conner, Baby Jim, Jim and Julie, Sonny, Daniel, MaMa-and Jane O'Donnell, of course, who has been with us this whole time. Jane took a picture of us with John's camera. He told Connie we'd use it as the Christmas picture next year as a joke since she used to always MAKE us go somewhere we didn't want to go and take too much time and effort to take a thousand pictures and she'd say "that'll be our Christmas picture." I think she got the joke. I see pieces of her but really its not her. The Real Connie didn't have puffy fingers or pale skin. She always has a nice tan on her arms and hands-her eyes always are sparkly blue and she is the one who is doing the comforting. I haven't seen her since last Tuesday. I caught a glimpse of her today but I don't know if I will tomorrow.

Name:

Betsey

Email:

Date:

02 May 2001

Time:

23:59:52

Comments

Conner's doing fine. Connie is kind of the same. I will report more later. No change.

Name:

DEborah

Email:

Date:

03 May 2001

Time:

15:54:05

Comments

Betsey, The respite is available immediately. I'll bring the forms when it is convenient. Love, Deborah

Name:

Betsey

Email:

Date:

03 May 2001

Time:

19:56:21

Comments

Thanks Deborah. I think I got some extra weekend help for that respite assistance. I hope. Connie's hanging in there but of course we know she is progressively getting worse. I am so tired of this life (this kind of life). I know things will get better one day but I am so tired of so much sadness and misery-I don't know what else to do. I try to find fun things to do with Conner but I am mentally exhausted and so unmotivated. I have to force myself to be "fun" and happy for him. My mouth hurts; my stomach hurts-I am stressed out! So, I am glad my mommy is here because she knows just what to do to destress me. She mommy's me good so I can mommy Conner good. Okay, now that I have complained, I have to be thankful. I am so glad Conner is doing well (relatively) right now. I am glad I have supportive friends and family. I am glad that I have an entire lifetime ahead of me to make great things happen to make up for the hard times. I am glad that I will survive whatever comes up (with a lotta help from earth and the angels and the heavens above!) Thanks for listening-

Name:

Amanda Cartee

Email:

acartee@bulloch.k12.ga.us

Date:

04 May 2001

Time:

08:14:03

Comments

Betsy,

I am sure the days seem long and exhausting. I am glad that your mom is here with you. Just remember if you need anything at all, I will do anything that I can to help. I have not gone to the hospital because I am sure it continues to be swamped, but just remember that we are thinking about you and your whole family and praying for you. I am glad that you can somehow manage to have a vision of your future. Just hang in there and remember we are here if you need us. I will call you Sunday night and plan on bringing some food over next week.

Amanda

Name:

Laura M.

Email:

lmarsh@ftrsm.com

Date:

04 May 2001

Time:

09:49:35

Comments

I'm sending special prayers and happy thoughts your way right now. There is NOTHING more exhausting than sitting in a hospital (it is physically, mentally and emotionally draining) when you go home, I know it must be tough to get yourself "UP" for Connor again. Try and hang in there. For what it's worth, there are so many people out here who love all of you and are praying for your family every day. I'm glad your mom is with you -- there's nothing better than a mommy in a time of need! (That's why Conner loves you so much) CALL ME IF I CAN DO ANTHING!!!! AT ALL!

Name:

Laura M.

Email:

lmarsh@ftrsm.com

Date:

04 May 2001

Time:

10:20:01

Comments

Betsy, this is a little long but it touched me. I found it on the PDHeart website that Ashley June belongs to. There are many critically ill children on that site too and it asks the question "How can God do this?"

"Tomorrow morning," the surgeon began, "I'll open your heart..."

"You'll find Jesus there," the boy interrupted.

The surgeon looked up, annoyed. "I'll cut your heart open," he continued, "to see how much damage has been done..."

"But when you open up my heart, you'll find Jesus in there."

The surgeon looked to the parents who sat quietly. "When I see how much damage has been done, I'll sew your heart and chest back up and I'll plan what to do next."

"But you'll find Jesus in my heart. The Bible says he lives there. The hymns all say He lives there. You'll find Him in my heart."

The surgeon had had enough. "I'll tell you what I'll find in your heart. I'll find damaged muscle, low blood supply, and weakened vessels. And I'll find out if I can make you well."

"You'll find Jesus there too. He lives there."

The surgeon left. The surgeon sat in his office, recording his notes from the surgery, "...damaged aorta, damaged pulmonary vein, widespread muscle degeneration. No hope for transplant, no hope for cure. Therapy: pain killers and bed rest. Prognosis: here he paused, "death within one year." He stopped the recorder, but there was more to be said. "Why?" he asked aloud. "Why did you do this? You've put him here; You've put him in this pain; and You've cursed him to an early death. Why?"

The Lord answered and said, "The boy, My lamb, was not meant for your flock for long, for he is a part of My flock, and will forever be. Here, in My flock, he will feel no pain, and he will be comforted as you cannot imagine. His parents will one day join him here, and they will know peace, and My flock will continue to grow."

The surgeon's tears were hot, but his anger was hotter. "You created that boy, and You created that heart. He'll be dead in months. Why? The Lord answered, "The boy, My lamb, shall return to My flock, for he has done his duty: I did not put My lamb with your flock to lose him, but to retrieve another lost lamb."

The surgeon wept. Then he went to sit across from the boy and next to the boy's parents.

The boy awoke and whispered, "Did you cut open my heart?"

"Yes," said the surgeon.

"What did you find?" asked the boy.

"I found Jesus there," said the surgeon.

-Author unknown