Yesterday, in an email to the Boss, I used the phrase: “I’m an educated woman.” I felt I had to say it. I was asking him to recommend a text regarding brain damage in infants. I have never used that phrase before in any capacity.
In my normal life, as a writer and teacher, it goes without saying. In the world of disability, however, I feel like even I, the parent, am somehow tainted with the presumption of being less able.
For months, I’ve been trying to get a hold of a book, or text of any kind. I want to know all kinds of things. For example, how is it possible that May would have sub-clinical seizures in her sleep? And, if they occur during her sleep is that somehow better or worse, or completely different than if she was awake? And does it matter?
Also, would someone finally explain to me what a sub-clinical seizure is?
I have far more questions than just that.
I’ve asked doctors and therapists for a recommendation and received no suggestions. Sometimes, the person tries to pawn me off with general leaflets on cerebral palsy (it’s brain damage – I get it) or tells me that there will be many professionals supporting me that I can ask all kinds of questions to later. But, the thing is, there aren’t. The people dealing with May, deal with her immediate needs. They either do not have the time or the inclination to answer these questions. Or, perhaps they don’t even have the knowledge.
The other day I spoke to the neurological nurse at the hospital. I was trying – as I had been for over a week – to reach the Boss. She seemed nice enough, so I posed a question. “May,” I said, “is trying very hard to suck her own thumb. But, as she brings it to her mouth, she jerks it away from her face. Why would she do that? It is so frustrating for her.”
She sighed mournfully, “Ah, bless. The poor thing is trying to suck her thumb.”
I don’t need soothing. I need answers so I can better understand my daughter.
I am an educated woman. I can learn.