Friday, May 16, 2008


As I made abundantly clear, yesterday wasn't one of those days where I was taking life in stride. I think that as far as the big picture goes, however, I have handled the barrage of life changes pretty well.

Sometimes I worry about my husband a little. He just goes along, loving our son, and never talking about anything. You can say what you want about me--I don't hold things in for long. After Charlie's birth I was numb; then I was depressed. Sometimes I would hold him in my arms and the tears would flow over both of us. Some nights I would scream into my pillow. How could this have happened to my beautiful child? I ached with his easy, sweet manner. He is so perfect--how could he be damaged? I remember holding him once during an EEG, singing him to sleep, and just wishing that I could be a normal mother holding her normal baby in a dark room. I hated that our life together was one of machines, and beeps (oh, the freakin' beeps), and tubes and wires.

I don't let myself wallow too much these days. There's no point. Make no mistake, I am an ace at feeling sorry for myself. I have had relationships end, and have felt as if my life were ending. I've had people slight me at work and I've talked about it for months. I can hold a grudge for years.

The Charlie thing is so big, though. So very, very big. It has opened me up and stretched me out; it has enabled me to see the beauty in the tiniest things. If you read enough of the writings of disabled parents, then one thing rings true--we appreciate the little things. Nothing is taken for granted--not a bite of food, a smile, a glance, a step, a breath, or a heartbeat. These are not guaranteed. There are times when I'll see some long-legged teen ambling through a parking lot and I think to myself, "her parents take it for granted that she can walk."

Maybe they do and maybe they don't. I don't know their story. Maybe they were infertile for years before the birth of their miracle girl. Maybe she's already lost a parent or a sibling. Maybe I need to stop worrying about what everyone else has.

My husband is still suffering with the idea of normal. He's angry or sad or something about people who have "normal" births. He's still sorting it out and that's OK. I think I'm a little further along. These days I question the concept of normal--what is it and who do we think has it?

I feel so very good about what God has given me. I stay home everyday; I snuggle with my baby every morning. I have a big front porch that I can sit on and enjoy the breezes. I could walk to church (if I got up in time). I eat a lot of really good food. My life may not be perfect, but I could suffer a whole lot more. I don't' even have the right to feel sorry for myself--this is Charlie's battle, not mine. I am his cheerleader--I need to get out the pompoms and stop with the pity party.

There is so much good in this place--in this world. I have so very much to be grateful for.