CP

Up and down, up and down, up and down. All day long. All night long. Every thing I do is interrupted. Cooking, cleaning, talking, thinking, sleeping.

They always need something. They always want something. Of course they do. I would in their place.

I'm not mad at them. I just really hate CP sometimes. My kids are 18, 14, and 11. We should be at a place in life where our kids are more independent. But I just put a pacifier in the mouth of a 14 year old. I turned her on her side and started a lullaby cd.

CP is so frustrating. I read other blogs and hear the news every day. There are terrible things out there. Cancer. Fatal genetic diseases. Heart defects. SIDS. Scary, awful, fatal diseases. But they have something I don't. They have research. They are fighting. They hold fundraisers, races, bake sales, and lemonade stands. They focus on saving their babies, and if they can't save them, they work to save others. They fight for their kids because somewhere out there in the big land of all that's medical, there are people working for a cure.

Cerebral Palsy isn't like that. We fight for quality of life. We work night and day to prove the Dr. who diagnosis our child wrong. We are told there is no way to fix this from the first day. We celebrate every single accomplishment knowing it's never enough. All that work will never bring them back. All I can pray for is grace and strength to accept what is. I have to be thankful for the parts of who them that I DO have. Some days, that is so much harder to do that than others.

Some days caring for my daughters like newborns for 14 years catches up. Today, all that needing me only represents all that's wrong. Every cry, each call, feels like flares going up in the dark. Distress calls signaling the need for help. I alone respond to them and wish for a single day that I didn't need to. I it wish for them as much as I do for myself.

I shouldn't do it, I know I shouldn't. I should not be laying in bed wondering what they would be like. I shouldn't mentally fill in the holes in my daughters' heads where brain has died. It doesn't help any of us to visualize the dark places that silently went without oxygen suddenly spark to life. It only hurts more to wonder if they would play soccer or be interested in boys. Would they go on church mission trips like Hannah did? Would they be good students or hide progress reports until I asked for them? Would they be best friends and keep each others secrets? I'm sure they would sleep in on Saturdays and complain about homework. I mean, they are 14.

The precious glimpses I do get of their personalities and sense of humor makes me miss them even more. I miss the children I've never known, and still hold two I couldn't possibly love more.

It never gets easier, but there are better days than this one. Maybe tomorrow is one.

-Andrea