Prayers for Karson

Karson is not doing well . We would really appreciate it if you all would pray that he will be at peace and feel comfort. Thanks for all your support the comments have helped so much!

Update on Karson

Hadley and Karson love Books

I love the way Karson looks at Hadley. You can see in his eye's how much he loves her.

This is Whit (Jonas's dad), Dr. Swoboda, and Abby

Sorry it's taken so long to do this, our little family has been through a lot lately. My past post I had mentioned that Karson had two respiratory arrests. Well, he has never been the same ever since then. His disease took a big hit, not only on his respiratory system but his facial muscles too. He hasn't been talking as much and it's hard to laugh, he try's though. I don't know why I didn't notice this sooner but Karson was struggling to breathe (with bi-pap on) it's described as a drowning feeling. It makes me sick to think he feels that way! Talking with another mom that had that problem said that morphine helped a lot with that feeling. I had talked to Abby before about morphine but it was more for pain at that time and now we wanted it for his breathing. Dr. Swoboda and her two nurses ( Abby and Whit) offered to come to our house to do a visit (which I loved) and we decided to get him Morphine. She asked me to consider getting Hospice because they could help us with different things. She also asked me what we would do if Karson got sick. Would we take him to primary's or keep him home? After talking it over with Darren, we decided that it would be best if we put him on Hospice. I already knew deep down what I wanted to do if he got sick and Darren felt the same. We have decided to keep him home . I know if he's intubated, he won't come off the vent and I don't want him to pass away at the hospital, we want him home with us. These decision's have been very hard for us . No parent should have to put their 2 year old on Hospice. It's not fair. Today, I went to a little boy's funeral (sweet Jonas) and I felt that Heavenly Father was helping me prepare for Karson's. I know it won't be long before he's with his little buddies. I know this post is a downer already but It helps to write about it .Tonight, when I was driving home I got a call from my dad saying that Darren wanted him to call me to hurry home Karson had another respiratory arrest. There's no reason he should be here, Darren and my dad were doing all they could do and he wasn't coming back then all of the sudden he started to breathe again. If you don't believe in Angels just talk to me. I'm so thankful for all the special spirits that watch over him. It truly is a miracle that I'm sitting here watching my son sleep! Going through the experiences that we have not only are hard for Darren and I but especially my sweet little girl. She is so special. I couldn't live without her. She's had to witness all of these near death experiences and let me just say she has a high pitched scream. She called me crying saying "my brother almost died" saying she freaks out is an understatement. She loves her brother so much and she is so tender hearted. We pray for her everyday. I know that our beliefs and our savior comforts her. She's such a sweet girl, when Ryan White passed away she said "mom I want to draw them a picture" (we are still going to send it) then this morning she knew I was going to Jonas's funeral and she wanted me to take them a picture but didn't have a lot of time, she said,"mom, can you draw the picture for me?" So we have another picture to send in the mail. We always tell her about all the people that will be waiting for Karson in Heaven and she asked Darren if Jonas would be waiting for him. I'm sure he will.

We have had exciting news, Make a Wish has contacted us and were planning to go to Disney Land. We just have to decide if Karson would be able to handle it. I don't know if I have the courage to take him especially after tonight. What would any of you do?

P.S. please continue to read the post below this one about Jonas and his family.

Jonas M. Coleman 12/2/07-11/18/10

Today was the funeral of a sweet little boy named Jonas Coleman and I have to say my heart aches. The day Karson was diagnosed our world came crashing down and I didn't know if I would ever be happy again. Abby (Dr. Swoboda's nurse) asked if we would like to talk to someone that had a child with SMA so we would be able to ask questions to see what was in store for us. That day, Whit (Jonas's dad) came to talk to us, it was such a blessing more than he know's. It comforted us and gave us hope that we could have a normal life, well a "new" normal. Ever since then, we have had a special bond with this family . I always had a feeling that we new them in the pre existence and I know that these two little boy's were good buddies and do missionary work on the other side. This has been so tough for me! I knew that not only would we lose our son but also all those other little special kids. I do have to say that it give's me comfort knowing that Jonas and Ryan will be there waiting for Karson. We love you Jonas and family!! Below is Jonas' sweet obituary.

Our dear sweet little boy, Jonas, was welcomed home into the loving arms of our Savior on Nov. 18, 2010. For almost three years Jonas quietly but bravely endured the progression of Spinal Muscular Atrophy Type I, a progressive neuromuscular disorder.
Jonas was born Dec. 2, 2007, to loving parents Whit and Lindsey. Jonas had the most expressive, blue eyes that could speak more eloquently than any words ever could. Jonas was a happy, peaceful and calm little boy who enjoyed nothing more than the simple things in life. Family vacations to Disneyland and St. George were some of his favorite times as he was able to be surrounded by the people he loved and the things he loved to do. He had a deep love of music especially anything Disney and would always smile when he heard his favorite songs. Some of his other loves were being read to, lights, stars, swimming, watching Disney movies, exploring outside, looking at trees and listening to birds. With the odds against him, Jonas held on to see his baby sister Maggie born and loved lying beside her while she snuggled up to his side. Jonas had the greatest gift of inspiring and influencing everyone he met. He changed lives forever. Jonas taught us more in his short life than we could ever have taught him in ten life times.
Jonas is survived by his parents Whit and Lindsey and sister Maggie, grandparents Mark and Becky Mathie, Mike and Merri Coleman, and great grandpa Frank Coleman, as well as many aunts, uncles, cousins and many other family members.
The family would like to express gratitude to Dr. Kathryn Swoboda and the Pediatric Motor Disorders Research Group, Dr. Paul Ferreira and staff at Holladay Clinic, IHC home health, Peterson Medical (Orem) and Make-A-Wish for granting Jonas’ wish to visit Disneyland one last time. It was his happy place.
A celebration of Jonas’ life will begin at 12 Noon on Tuesday, Nov. 23 at the Wilford Stake Center, 3080 S Kenwood St (1765 E). There will be a viewing held at Larkin Sunset Lawn, 2350 E 1300 S, on Monday evening from 6 - 8 pm. as well as Tuesday morning at the ward from 10:30 -11:45 am. Jonas was a true blessing and we miss him already. We love you little buddy OFF TO NEVERLAND!