Great souls
I have a little nephew (5) and niece (2) who have been diagnosed with SMA, Spinal Muscular Atrophy. What it means in English is that they never develop any muscle mass or tone, of any kind. Eventually as they grow out of babyhood, their own bodies are too heavy for their muscles to hold up and they become completely helpless. Fortunately or unfortunately, depending on how you look at it, their mental acuity is unimpaired. They are bright, sociable and sunny children.
Parenting special needs children on a daily basis is heartbreaking, but when a health crisis is encountered it becomes even harder to bear. My sister-in law sent this note about my nephew's spinal development that has me in tears, and I had to share it with you.
Those two little bodies shelter such bright souls. My own "problems" fade to nothing when I hear about their trials.
From Karen:
----------------------------------
Yesterday was a hard day. I hate all the medical aspects to Ishan and Shanaya's diagnosis of SMA. We had what I thought would be a routine appointment, turned out to be yet another blatant reminder of what SMA is.
Ishan has had what we call a turtle shell to make it a little more inviting. It is is a hard foam vest that he is suppose to wear all day everyday. It is because he has scoliosis, and it is to buy time for delaying back surgery. I have hardly had it on him, because he feels very unstable in it, and it limits him in what he can do. Also, breathing is practically not an option in this thing. I felt justified in choosing what I felt the lesser of two evils, freedom to play and function as normally as possible or, keep his back straight.
Well I got read the riot act yesterday. I was informed that surgery is usually done around 40 degree curvature, and Ishan is at 44. I was also told that if it goes much further it is hard to correct. His rib cage is rotated, and is growing funny. Because he is still quite young he still has some flexibility in his spine, and lots more growth time, causing the doctor to want to wait as long as possible.
The doctor was pretty hard nosed about wearing the vest, and explaining what is going on in Ishan's body, and what could happen. It is not pretty. The doctor left the room for a few minutes, and I saw that Ishan was holding back tears. I asked him what was wrong, and he started to cry and said he was too young. I agree! He just turned 5! It is not fair that some children have to go through so much physical
suffering. I told him that he would be OK, and that I know some kids who have had back surgery and they are doing great. One even younger that Ishan. But we should try to hold it off as long as possible by wearing the turtle shell. He just wanted to be held, and I couldn't hold myself together , seeing him in
emotional pain. We just cuddled and cried together.
Ishan told me that he doesn't like the idea of wearing the turtle shell, but he will do it to help his back. I feel so bad, that I might have been able to delay this surgery by getting him to wear the vest all the time, but am so proud of Ishan in his maturity to do something that he doesn't like for the better.
Don't we all have those dragons that we face? Eating more vegetables, exercising, studying, working, etc. Ishan's maturity humbles me. Ishan is crazy about
pretending he is a knight lately, and I think he is truly a dragon slayer.
Parenting special needs children on a daily basis is heartbreaking, but when a health crisis is encountered it becomes even harder to bear. My sister-in law sent this note about my nephew's spinal development that has me in tears, and I had to share it with you.
Those two little bodies shelter such bright souls. My own "problems" fade to nothing when I hear about their trials.
From Karen:
----------------------------------
Yesterday was a hard day. I hate all the medical aspects to Ishan and Shanaya's diagnosis of SMA. We had what I thought would be a routine appointment, turned out to be yet another blatant reminder of what SMA is.
Ishan has had what we call a turtle shell to make it a little more inviting. It is is a hard foam vest that he is suppose to wear all day everyday. It is because he has scoliosis, and it is to buy time for delaying back surgery. I have hardly had it on him, because he feels very unstable in it, and it limits him in what he can do. Also, breathing is practically not an option in this thing. I felt justified in choosing what I felt the lesser of two evils, freedom to play and function as normally as possible or, keep his back straight.
Well I got read the riot act yesterday. I was informed that surgery is usually done around 40 degree curvature, and Ishan is at 44. I was also told that if it goes much further it is hard to correct. His rib cage is rotated, and is growing funny. Because he is still quite young he still has some flexibility in his spine, and lots more growth time, causing the doctor to want to wait as long as possible.
The doctor was pretty hard nosed about wearing the vest, and explaining what is going on in Ishan's body, and what could happen. It is not pretty. The doctor left the room for a few minutes, and I saw that Ishan was holding back tears. I asked him what was wrong, and he started to cry and said he was too young. I agree! He just turned 5! It is not fair that some children have to go through so much physical
suffering. I told him that he would be OK, and that I know some kids who have had back surgery and they are doing great. One even younger that Ishan. But we should try to hold it off as long as possible by wearing the turtle shell. He just wanted to be held, and I couldn't hold myself together , seeing him in
emotional pain. We just cuddled and cried together.
Ishan told me that he doesn't like the idea of wearing the turtle shell, but he will do it to help his back. I feel so bad, that I might have been able to delay this surgery by getting him to wear the vest all the time, but am so proud of Ishan in his maturity to do something that he doesn't like for the better.
Don't we all have those dragons that we face? Eating more vegetables, exercising, studying, working, etc. Ishan's maturity humbles me. Ishan is crazy about
pretending he is a knight lately, and I think he is truly a dragon slayer.
posted by zouzou at 11:41 a.m.
3 Comments:
Very touching words, thank you for sharing. This post puts into perspective a great number of the gifts we all take for granted. You, Karen, Shanaya and Ishan are in my thoughts and prayers. Great souls, absolutely.
I can not fully understand what these two great kids are going through... but I think I have a bit of an idea as I also have a form of the neuromuscular disorders. Courage is an unquenchable thing... and pity is a useless one. I can say that not to have control of the body is very frustrating...but having control of your mind is something that can never be taken.
I think your family has given support and care and that is one of the best things ...well, along with unending love... the soul is everlasting so they tell me.
Your pretty much leave me speechless... and sad.
The strength of the human spirit never ceases to amaze me... and members of your family have it in abundance.
Hugs and warm energy to you and yours.
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