A rough week

This has been a particularly difficult week for those of us in the "SMA community". Two precious children have died this week. Over the years we have become somewhat accustomed to seeing these precious children die too soon. Many that have type 1 (the most severe form of the disease) don't make it to their first birthday. As parents are learning more about this diease and how to care for these children, they are living longer. But, most will not live into adulthood. Ryan has SMA type 2. And although he is quite a bit stronger than the type 1 children, he too has been on death's doorstep more times than I can even count. There have been many, many times over the years where I thought we had lost him; only to have him come back to us. So many hospitalizations that I have literally lost count. Mostly due to pneumonia or lung collapse brought on from something even as minor as a common cold. I imagine that he looks somewhat "normal" to most people who see him sitting in his wheelchair. But, they have no idea the damage this disease has done to his body and how weak he actually is. His body is already so deformed from this dreadful disease. His little feet are turned in, his legs are severley contracted and his back has been fused with a titanium rod from the base of his neck all the way to the top of his bottom. He doesn't have the strength to lift his hands to his head to scratch an itch, he cannot blow his nose, he cannot brush his teeth and if he's lying in bed; he is able to move little more than moving his hands and feet or wiggling his toes. He is essentially paralyzed while still having the ability to feel. We have found that as Ryan has gotten older, although we are beyond blessed to have him still here with us, in some ways his disease has gotten more difficult. The hospitalizations are less frequent for sure. But, his body is bigger and more awkward to carry around. He is much more limited in what activites he is able to do. In the past, if Ryan wanted to play in a park or go down a slide or even go innertubing in the snow, we would simply pick him up and do these activites with him on our laps. Now that he's older and bigger, these are things that Ryan is only able to watch his siblings do or he is left at home unable to participate at all. We are also now dealing with the teenage years. For MOST teens, this is a difficult stage in life. But, for a child so dependant on others for simple daily tasks, this makes it even tougher. We have noticed that Ryan has pulled away from his peers over the past couple of years. I know it is because he feels different from them and doesn't quite know how to relate to them. Although we are completely understanding of this fact, it hurts us to see him not have a group of close friends that he can hang out with. But, on the positive side, he has an incredible attitude and it really doesn't seem to bother him. I think it bothers us as his parents more than it bothers him. I think the other thing that makes this time of life so difficult is that while his peers are getting more and more independant of their parents, Ryan is actually becoming more and more dependant on his. While other kids are walking to school or dropped off at a movie theater or the mall, Ryan really cannot go to any of these places without an adult with him that knows how to care for him. A cure for this terrible disease cannot come soon enough. We need that cure so that no more children will have to suffer the effects from this dreadful disease.