Maggie suffered a brain injury either before she was born or shortly after or both. It’s never been entirely clear because there was always so much going on that her delayed development was attributed to her medical issues unrelated to her brain. Eventually it became clear there was more going on and we started checking things out. That meant visits with neurologists.
A consultation with a neurologist first happened when Maggie was about two months old and still in the Newborn Intensive Care Unit. That doctor told me a a thick European accent, that “yore babee eez floppy.” What did that even mean? I could feel panic rising. The nurse told me she says that about every baby and Maggie had all these medical problems so of course she was floppy. Not wanting anymore problems, I ignored that doctor. Of course she was right. Maggie was floppy and her medical problems were not enough of an explanation. But I had to deal with things we could DO something about.
I think we next saw a neurologist when Maggie was a year old because that is when we got the spastic quadriplegia diagnosis (a form of cerebral palsy). By the time we heard those words, though, we were already quite aware of her problems. It was confirming what we already knew. Maggie did not and does not have any seizures. Her neurological problems are what they are and other than constant therapy and occasional monitoring, we don’t need to see neurologists very often. And that is A-OK with me. We’ve probably only seen one five times in her life. Now I go every three years and have a nice chat with the neurologist.
As is their very difficult job, the neurologist tells you all the things your child will not be able to do and the limitations she will face. When Maggie was little, I would listen to the parade of horrible and wish I was somewhere else. It’s never fun. In fact I read an excellent blog post describing what it can be like for many families, especially those looking for answers.Check out Annoyed at the Neurologist
We, of course, are not like many families. I actually have a neurologist story that makes me laugh to remember. When Maggie was about three we had an especially entertaining visit. Well, entertaining for us anyway. The attending neurologist was preening a bit for his residents and going on at length about what Maggie would never be able to achieve. I sat there like a punching bag largely ignoring him, because it wasn’t being said for my benefit. Don’t’ get me wrong, he was correct in his assessments, but just kind of coldly listing them off.
I interrupted him at one point and said, “Yes, she does have physical limitations, but she is cognitively intact.”
There was a long silence until the neurologist said to me in a rather patronizing way,
“And just HOW do YOU know THAT?”
I looked at the several doctors and said with a grin, “she laughs at my jokes. She MUST be smart”
Silence again, except for my snickers (and probably Maggie’s). The doctor just looked at me and made a notation in the chart. That was the end of that visit. I don’t know what he wrote that day, but I presume it’s something like “Mother delusional.” Again, he may have hit the nail on the head there, but I was right about Maggie’s intellect.
Maybe I should publish a study.