The trials of SMA

From the time Ryan was diagnosed with this disease at just 11 months old; we knew the road ahead would be filled with challenges. At the time, I couldn't even imagine looking that far ahead into the future. It was all I could do just to get through each day after that diagnosis. Here we are now 14 years later and each time we hear of a new burden our son has to bear, it never gets any easier. Currently, Ryan is dealing with pain in his hips. To understand just what this is like for us and for Ryan, I will walk you through a typical morning in our home. Usually Steve is the one that gets Ryan up each morning. This is because I can no longer shower Ryan who now weighs nearly 90 pounds. (Something that we hope to remedy soon with our new roll-in shower!) Anyway, Steve gets Ryan up and showers and dresses him. Ryan lays on his bed while we dress him and just the act of pulling up his jeans causes him pain. Pulling up a 90 pound person's jeans while they are laying flat on their back and unable to help in any way to even lift their bottom up is next to impossible anyway. But, add on to that the pain he is experiencing, it's really difficult to say the least! We don't ever want to hurt Ryan, but he has to get dressed. Putting on his socks and shoes also causes him a fair amount of pain. His feet are so contracted from the disease that they are now turned inward. This makes putting socks and shoes on him very difficult. It also causes Ryan quite a bit of pain if we turn his foot even 1/2 an inch in the wrong direction. Steve then lifts Ryan into his chair and leaves for work. It is then up to me to fix Ryan breakfast, brush his teeth, wash his face, put a jacket on him and get all of his school supplies together including his suction machine. During this time, I am also making lunches and getting Jorie (sometimes Josh) out the door to school as well. Needless to say, mornings around here can be difficult. And challenging enough without the pain Ryan is now experiencing. Yesterday, we took Ryan in to have his hips Xrayed. The results showed what we already knew. Both hips are dislocated (and have been since the age of 3). But, somehow during the past couple of weeks, one of us probably moved his leg in the wrong way or too fast and it is now causing him pain. The doctor offered to have Ryan take Aleve as needed and for all of us to be extremely careful when caring for him. I can't imagine being any more careful than we are already! But, we will try. As Ryan has gotten older things have changed. His strength has gotten weaker and we are doing more for him than we used to. We try our best to take things one day at a time and count our blessings. Some days that is easier said than done. I have always felt that dealing with this disease is so much more difficult when it causes Ryan sadness or pain. But, the fact that he can still joke around and be mostly happy means the world to me. He is an amazing boy and he has taught us all a lot. I hope and pray we have many more years with our son. But, I also know that when the Lord calls Ryan home to be with Him, I will rejoice that my son has no more pain and a working body. Even though the pain of his loss will be more than anyone should ever have to bear.