another vintage ad
The social worker from the other day called today. Let's call her Z.
Z: Hello, this is Z. I have couple of questions for you.
Me: Sure, what do you need to know?
Z: How does girl communicate with her brothers?
Me: She doesn't speak at all.
Z: Does she use words?
Me: She's non-verbal. She can't talk.
Z: Does she use sign language?
Me: No. She uses augmentative speech devices but in a very simple way.
Z: How do you know what she need?
Me: I just do, I guess.
We hang up the phone. It rings a couple of seconds later.
Z: This is Z, again. I have another question.
Me: No problem.
Z: The box checked on application says that the girl need 24-hour monitoring. Why?
Me: Oh. I guess I checked that because either her father or I have to sleep with her because of seizures.
Z: Oh. She hurt herself in night then?
Me: Well, no. But we want to be near her if she has a seizure.
Z: Well, usually this box checked if girl might kill herself in the night.
Me: Oh, no, no, no! Her seizures make it necessary that we sleep with her so that we can hear her.
When I checked the box, I just figured that yes, Sophie basically needs 24-hour monitoring. The Husband and I resigned ourselves long ago to the fact that one of us has to sleep with her. We know many, many parents who sleep with their children who have epilepsy. There is the natural fear that she will be alone, seizing, while we sleep and perhaps frightened. There is the fear that she will get out of bed before a seizure and fall down and hurt herself. Above all, there is the fear of SUDEP (sudden unexplained death in epilepsy patients) -- a terrifying possibility that is, sadly, little talked about in the epilepsy world.
There, I talked about it.