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.
My prayers and thoughts are with you and your family for your incredible, strong little fighter that you got there, your precious son. I admire you and look up to you for your courage and strength.
ReplyDeleteI whine about the smallest things that my kids do and never stop to think that i should be thanking God that they are above all healthy and dont need my assistance in their every day activities.
I think i have mentioned this to you before but i will say it again. My religion is Greek Orthodox. What we have been taught is that when a child with any sort of disability is born in the family, that means that God himself has sent an angel in your arms for you to hold and protect, thus be rewarded when you go to heaven. You are very blessed!
Keep strong and congratulations for your son...
Thank you so much for your comment! Life with my son's disease can be incredibly difficult at times. But, we make it through with our incredible family support and with the hope we have in the Lord that one day Ryan will be free from this disease in heaven.
ReplyDeleteYou are a strong woman with alot of faith! God Bless you and your family, and i send you all my wishes from the bottom of my heart!
ReplyDeleteI can truly say that I understand how you feel. I feel sad when I notice the further weakening in Joseph's facial muscles and in his hands. But when I read about the passing of another child who's much younger than our boys, then I have renewed hope and appreciation of the fact that I can still hug and kiss my little boy. And so I am sending you hugs right now.
ReplyDeleteHi Ryan and His Mom,
ReplyDeleteMy name is Jenna and I came across your blog. Ryan is an inspiration and hero. I myself was born with a terminal disease, it is a rare bone disease. I am in pain everday in my legs and jaw. I sometimes wish I could amputate my legs so that I won't be in pain. I am on severe pain meds, that make me sick to my stomache and get severe migranes. I am not even supposed to be here right now, or make it to my next bday which is in March, but I know I will if I fight, but I know someday I won't be able to fight anymore, and I will be free of my disease and my pain.
My sites are: www.smilenfighter.blogspot.com
or:www.caringbridge.org/visit/champ291