Where are the changes? I ask myself that a lot now. Do I see anything different that Noah is doing today that he couldn't do yesterday. I anxiously wait, for this continued miracle to come to me. Most days I feel like someone rips out my heart and shoves it back in and starts all over the next day. Noah is my soft spot, he probably always will be. He is the one topic that can bring me to my knees in instant tears and fill me with immeasurable happiness. Life is bittersweet.
There is a quote from my favorite book, The Thorn Birds, that I frequently think about:
"There's a story... a legend, about a bird that sings just once in its life. From the moment it leaves its nest, it searches for a thorn tree... and never rests until it's found one. And then it sings... more sweetly than any other creature on the face of the earth. And singing, it impales itself on the longest, sharpest thorn. But, as it dies, it rises above its own agony, to out sing the lark and the nightingale. The thorn bird pays its life for just one song, but the whole world stills to listen, and God in his heaven smiles."
Does it mean that without great suffering there is no beauty to this life? Do we search out our whole lives for things only in the end to die a with a sweet song?
The book says the meaning of that story is "That the best... is bought only at the cost of great pain."
I think Chris and I have enough pain already to last us a lifetime. I sit frustrated writing this, that I can cannot find a cure for Noah. Many parents tell me they wouldn't want to change their child or find a cure if one existed, that they're happy with their child's disability as is. I however, am in the category that would jump on the chance to fix Noah's neurological damage if I could. Recovery is beyond slow. I worry about our future, maybe prematurely, maybe not. I never imagined that I would have a child that would be wheelchair bound, or non-verbal. I still want to believe that he'll find a way to accomplish things no one thinks he can. But is it all just false hope? Do I cling to all this faith for nothing?
I tried to color today with Noah, tried to get him to hold a crayon and scribble in a book. He drops it instantly or arches backwards in protest. I tried to feed him a meltable wafer cookie today without success, something he can do occasionally but not everyday. I tried to assist him to sit only to watch him flop forward like floppy rag doll. They say this life isn't the sprint it's a marathon. But this marathon could take Noah's whole entire childhood. Years of therapy, days of trying, minutes of worry, seconds of sadness and celebrations. And where will we be five years from now? Where we are now? Will he be any better then than he is today?
My mom keeps telling me it's just Noah time. I want to speed him up. Maybe that sounds selfish, but it's terribly hard watching him struggle all day to do things, he can't even play with a toy or cuddle with a stuffed animal. There is nothing there a child his age should be doing. I want him to be playing in the fall leaves and babbling to me about what he wants to be for Halloween. I long to participate in ways with him that I cannot. I'm confined to holding him while he watches Elmo, Super Why, or Blues Clues. We cannot play cars together or play games like hide and go seek. Maybe Noah doesn't miss it, because he doesn't know otherwise. But I do miss it. I miss all fun things we should be doing together all day long. I know how I want things to be, and I cannot make them so. All I have are my continued prayers, but will they be enough? Will they all be answered? Will even some of them be answered?
"Waiting for the spark from heaven to fall"
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.