I wrote some lyrics today. I tried to envision some of the things that Brynn suffers with daily, and put down some of the pain in words. I felt guilty about it. It’s not the first time I’ve felt guilty writing something like this.
When I was a teenager, I wrote a lot of “dark” poetry. Looking back, I think part of the reason I did it was to gain attention, but I never showed much of that work to anyone, so that couldn’t have been all of my motivation. Now that I’m more mature, and have invested myself into a relationship with Christ, I find it more difficult to express whatever negative emotions I have because I am truly blessed. I’m happy. I have a good life, and I don’t suffer any more than anyone else, and a lot less than some. Yet I, like anyone else, do have problems. It seems ungrateful to pine away over problems when so many things are right about my life.
I suppose in this case I feel like Brynn is different. I feel like reflecting her emotions is something of a responsibility for me, because she can’t do it herself. Despite a serious inability to communicate, I know her very well. In fact, I think I know her better than I know my other 2 kids, despite having never had a conversation with her. I know that she is a happy kid. I know that some of the things I wrote today are too mature for her, and that she doesn’t focus on those things like I do. I know that despite her handicap, she still understands that she is handicapped, and not able to do any of the things that her siblings do. Beyond that, it’s hard to tell what she thinks about it. That being said, she is certainly the happiest, most content child I know. I don’t know why, or how, I just know that she is, and I am extremely proud of her for it.
Maybe some of the things I wrote will be harder for her in the future. Maybe she has moments even now that are struggles for her. Perhaps in the middle of the night, when her toes feel like ice cubes because she’s inadvertently kicked her blanket off and can’t put it back on, she feels sad. Maybe it’s when her fingers get tangled in her hair, and she pulls on it so hard that a lock of her hair gets pulled out, that she cries as much from the sadness as she does from the pain. Maybe it’s when she scratches her face, or gets her foot caught in her wheelchair, or bends her fingers back and can’t stop, or when she falls out of her bed. It could be at it’s worst when she’s sees her brother and sister, or her classmates, drawing or painting or playing hide and seek.
But no matter when it is, when someone, anyone, walks in to the room and speaks to her, this incredible smile explodes on to her face, and you would never know there was anything wrong in the world. No matter what I wrote this morning, that smile defines who she is. That is my Brynn, not what follows.
My body is twisted
And I can’t straighten it
It’s like living in a maze
That constantly moves and changes shape
I’m always lost and in the dark
So where’s my light? Where’s my life?
I want to sleep with out pain
I want to see without strain
I want to stand without falling
But it’s all so far away, so far away
My muscles ache
My head is so heavy
My tongue is too thick
And I have so much to say
I’m sure if I could crawl
I could find my way
So where’s my path? Where’s my life?
I want to sleep with out pain
I want to see without strain
I want to stand without falling
But it’s all so far away, so far away
Tuesday, July 27, 2010
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