Our journey with SMA

Along the road of this SMA journey, there have been many different heartbreaking moments. Little moments where I am reminded of what my child cannot do. As hard as I try to ignore those moments, they are there and are sometimes impossible to ignore. When he was little, it was recess. I can still remember like it was yesterday, trying to come up with other options for Ryan while the other kids ran outside to play. He would usually stay inside to avoid the cold (even 60's was cold for Ryan) and play board games with a chosen friend who would usually volunteer to stay inside with him. As the years passed, finding that one kid to volunteer to give up their outside recess became more and more difficult. Until eventually, Ryan would spend that time alone.

As he got older, it was sports. All the boys his age seemed to be involved in some sort of sport. When it comes to sports, Ryan can play them on a video game or watch them on TV. We are thankful that technology of today allows him to do this. But, it still stings a little that he can't be outside playing the sports he so LOVES to watch others play.

I would have to stay the most recent reminder of the reality of my son's disease would be the "driver's ed" brochures that are sent to us in the mail over and over again. I am sure they send them to every 15 or 16 year old kid in the school. But, when we receive ours in the mail, I can't help but feel a twinge of sadness for my son who will likely never drive. Or at least not anything larger than his power chair.

I remember there was a time when the kids Ryan's age were first beginning to be independent. I would comment to Steve when I would see them. "Look, they are riding their bikes without their parents!" or "they are at the swimming pool and they are with friends, not their parents!" I remember how odd that seemed to me. Even more so, because at the time, Ryan was maybe 11 or 12 which meant that Jorie was only 4 or 5. Having an independent child seemed so foreign to me. I couldn't imagine having them do anything independent of me or Steve. Now that Jorie is older, I am getting that first taste of what it's like. But, it still seems so strange to have her help prepare a meal or want to be alone with a friend in a store! It does seem to take some of that sting away having 2 children who are not completely and totally dependent on me. I am thankful for each and every ability they are able to do. Because I know that each and every thing they are able to do is a miracle and a blessing not to ever take for granted. I have said it many times before, I am thankful for so many things that I never would have even thought about if Ryan had not come into my life. I can safely say that Steve feels the same.