I don't know why I hang onto hope, knowing that if my son, Nicholas, wakes up from his coma, he's never going to get any better.
This is Faye Emerson, Nicholas's mother. I have been here at the hospital, by the bedside of my little boy, who continues to battle valiantly for life. My son is the reason I must stay; he's my light, my world.
My son is disabled. He was born with a neurodegenrative disease, Canavan's, which has left him without sight, without a voice, and an inability to walk, even eat or go to the potty on his own. My son has been rendered completely helpless by a defective gene that I carried, passed on to him. In a way I feel responsible, and I must do everything I possibly can to try to make it up to him.
Now, my other two children, Ellen and Renate, feel as bad as I do regarding Nicholas' sad condition. They get mad at me because I gave birth to him, and yet they love him, love to play with him, tickle him, try to help me out in any way they can. They're good children, and I couldn't be more proud of them!
I feel bad in knowing that their little brother will never see, talk, walk again. If anything, he will only end up getting worse (if such a thing were possible; he's already pretty bad off now), and his disease will only end up killing him.
Doctors don't think he will live beyond the age of eight, ten at the most. That's only four to six years now; he's only four.
Last week he had severe stomach pains, which, ultimately, revealed appendicitis. During surgery, he had a seizure, then his heart stopped. Thank God doctors were able to revive him within moments, but it may have further damaged his brain; to what extent won't be known until he emerges from the current comatose state he's in.
He's over the initial crisis; yet I see very little reason to celebrate. Nicholas just lies there in his bed, hooked up to a whole array of tubes, wires, and monitors; the only sounds that tell me he's even alive are the hiss from the ventilator that breathes for him, and the beeps from the heart (and other) monitors. It is very upsetting to see our son looking like this; I wonder how much more pain he (or we) can take!
More than anything, I want Nicholas to open up his eyes, or announce, "Mama, I'm all better! I want to go play now!", or get up from his wheelchair and walk. I know that's being unrealistic, but at least I have a sense of hope for him. It is my dream, my passion, my dearest wish.
Reality tells me that this will never happen. Nicholas will always require twenty-four hour medical care, and he will continue to have crisis after crisis until, ultimately, his body will finally succumb to his disease, and he will then die.
That's what's most upsetting. Knowing you birthed a child, and don't get to see him grow up. Parents are expected to outlive their children; you don't expect to outlive your child, no matter how old (or in this case, young) they happen to be!
Ever since we got the diagnosis of Canavan's, I've been busy learning about the illness, learning as much as I can. I do this so I can help our boy, and be informed in knowing what may lie ahead in this journey that we didn't ask to take. I've learned a lot, and it's given me more passion to help my son have somewhat of a normal life (or as normal as possible for him).
Well, the doctor is here; guess he wants to examine Nicholas, to see how he's doing, so I will go for now. I will write in here again; hopefully next time I will have better news or know what will happen once he awakens from the coma.
Take care and God bless; keep us in your prayers! Thanks!