Last night when I was tucking Ryan into bed; he shocked me with a strange question. I was doing all of our normal adjustments; being extremely careful not to nudge his right leg (the one he broke back in July) while tending to his needs. Then he asked, "Mom, why don't we just have my legs amputated?" "All they do is cause me pain." It took me by surprise and I was a bit speechless for a few minutes. Over the years, I have learned that in order to get through each day with this disease, SMA. Sometimes, you have to put on a smile for your child even when you feel like running into your room and pulling the covers over your head and sobbing uncontrollably. Sometimes, there really is no good thing to respond with other than an "I love you". I believe his dad was in the room with us at the time and the two of them began joking around that Ryan could certainly do fine without his legs. My hubby always has a way of lightening the mood. I then began my positioning of Ryan's headgear that goes to his bipap. Ryan asked if I could lift his right hand to his left ear. Puzzled, I moved his hand. I realized just how weak his left hand has gotten. He then said, "Mom, my left hand is basically useless to me now." So, not only can my child NOT lift his hand to scratch an itch without my assistance. But, now he can't even lift his left hand to scratch his left ear?!? I held his small, 14 year old hand in mine and just told him that I loved him and I was so sorry. He was basically the one comforting ME! He knows that one day his body will be whole and that he will have no more pain or suffering. He is truely an amazing boy. That night, in bed, I was finally able to release my emotions. There are days where his disease, SMA, just gets the better of me. And after I have a good cry, I am okay again. Please always be thankful for every ability your child has. Even if that means, the ability just to reach up to scratch an itch. Or to position themselves in bed. My child can't do either. I often wonder how many times a night he lays there with an uncomfortable itch that he can't scratch. I can't wait for the day where I will see my child standing and walking, healthy and free of this awful disease that is destroying his body little by little.
