Conner Jones Story

I would like to share with you the story of Conner Jones. He was 7 years old and had prune belly syndrome and Cystic Fibrosis. Conner lost his fight a couple of weeks ago. I cannot tell you how the loss of this little boy has hit home for Dave and I. We spent the week following the loss of Conner crying, reflecting on how this could someday be our son. As much as you don't want to think that way, when you lose someone so young to the same disease, you cant help but think about it. Conner was a fighter. He fought for 7 years. He was a brave, special little boy who's live and story has touched so many in the CF Community and out of it as well. All across the country and other countries as well there was a balloon release in celebration of Conner's life on the day he was laid to rest. Our family honored Conner as well. I would like to think that if the same fate happened to Morgan, the CF community would do the same for him. I know they would. I found out, with the passing of Conner how tight and loving the CF family is. I think I have found over 25 new CF friends on Facebook. One even in my old hometown, Albert Lea. It is a small world. Conner's mother, Sarah, has got to be one of the strongest women I have ever known. I don't know how she did all that she did after losing her son. She is an inspiration to me. I have learned so much from reading her posts on Facebook and from her blog. She lets all her feelings out. Good or bad. She has gone on telling Conner's story and has done so much for the CF community and continuing to fight for a cure for CF.

On most days, I try not to worry what the future has in store for Morgan. But, again, I have to say that this has made me stop and think. What will happen? Will my son grow up and do all the things other little boys do? Will he get married? Will he have a family. Once I had a horrible dream that my mother was here. (She passed when I was 7) and she was holding Morgan and I remember thinking "oh Mom, you are here and you get to hold your grandson" and she looked at me and said " Honey, I have to take Morgan with me now" and my heart dropped. How would I deal with that? How would Dave deal with that? And his sister, Jac and brother, Bubby? Who love Morgan more than I can possibly tell you. This little boy had touched everyone he comes in contact with. I know that when and if that time comes, he will be with God, and my mom, his papa and Auntie Kris. And be loved by all that have gone to Heaven before him. He will be in good hands. But, being selfish, I dont want anyone to have him but Dave and I. We tried for so long to have him. 5 years of trying and we finally got pregnant the week of my mother's birthday. And when he was born, I got to pick the day. It was right around my mom & dad's anniversary and my grandparents. I figured it was fate, that was the day I picked. He was coming on that day like it or not! It was special to me. And he was.

Life is not all sunshine and roses with CF. Its hard. Its hard seeing your little boy having to do treatments. To know that there are things he cannot do. He cant be outside if its too hot and humid. In the winter, we are in, for fear of infection floating around the air if we go out. But, we managed to keep him out of the hospital for his 1st winter. When his CF team told me, that most likely he will be hospitalized. Not on my watch! It meant errands had to be done after the kids got home from school and could watch Morgan. Or when Dave got home. It was all worth it! And we have a wonderful support system. His Auntie J who lives next door and her 2 girls who love Morgan more than life itself. The sun rises and sets on that little boy in their eyes. And Dave's mom, who stayed with Morgan after getting a very "crash course" on all his medications and feeding schedule, while I was in the hospital for over a month this winter (HA we managed to keep Morgan out of the hospital but Mommy was not so lucky). And my kids, who help me out so much! They learned all about Morgan's treatments, medications, what he can eat, what he SHOULD eat. They are always on the lookout for those high calorie, high fat meals! And his god mother, Auntie Pam and Uncle Josh! I cannot begin to thank Josh for pulling together a benefit for Morgan in March. It was amazing! And done all out of love for this little boy.

I think I am done going on and on for now. Some of these might just be me getting what is in my head out. But I did want to share Conner's story and let you know how much that little boy has touched my heart and made me cherish each moment I have with my little boy. I know that Conner is looking out for Morgan and all the CF kids out there. He is waiting and watching...with LOVE LOVE LOVE! ALWAYS ALWAYS ALWAYS. As Sarah would say.....