Big Lie

We all lie to our kids. Anyone who says they don’t, well, they’re lying. Sometimes, though, we tell a lie that we don’t mean. Sometimes, we don’t even know we’re lying until it’s too late.

I was feeding Evelyn today, and she was nodding off while she was eating. To those who don’t know, my daughter fights sleep. She will startle awake and practically jump out of the chair sometimes. She will sleep for some arbitrary number of hours at night, then her feet hit the floor, and there is no getting her to go back to bed.

I laughed at her and said, “You can go to sleep Evelyn, I’m not going to let…..,” but the words died on my lips.

I was going to say, “I’m not going to let anything hurt you.”

But that’s a lie.

Something has been hurting her in her sleep for years. Something I can barely control, let alone stop. When I held her after she was born, I told her the same thing. I told her I’d keep her safe. I wouldn’t let anything bad happen to her. I didn’t know then, you see. I didn’t know I was lying. As I started to say it today, I realized. I realized something was hurting her, and I am powerless to stop it.

Seizures.

She has them mostly in her sleep now. They scare and confuse her. She had two in a row a couple of days ago and sobbed for fifteen minutes after, presumably because she was scared and felt so bad. They’ve gotten better, god knows, but they are far from over. They are still hurting her.

I wonder if, as a special needs parent, that’s the hardest thing. The thing that eats us, that sickens our hearts and discourages us, especially at night when you’re tired and low and can’t do much besides feel sorry for yourself. I wonder if it’s that we can’t do anything to change the outcome of our child’s illness. We have no control. We can’t stop the bully. We can’t fix it.

We can’t stop it from hurting them.

So here’s my message to you: hang in there, (not so) special parents. I’ve never felt so (not so) special in my life. But I know we’ll keep fighting. We’ll try to keep our promise.

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