The B6 vitamin came, and not a day too soon. We had a house full of guests for lunch today, and I have to admit I was a little worried about Simon's behavior. Like most little kids, he finds sharing his stuff to be a bit, um, challenging, but with his quick temper it has become more than a minor sharing lesson. Fortunately, though, it wasn't an issue. He has had 2 doses of the B6 so far, given in conjunction with the anti-seizure meds, and he definitely seems more mellow. Right now, in the peace and quiet of the late afternoon, he is cuddling with his sister while watching her play Mario-Kart on her Nintendo DS.
If I am honest, my worries about his behavior in front of guests goes deeper than concern over an afternoon of sharing toys. For the past couple years, since his cognitive differences have become more apparent with his growth and the subsequent comparisons to other same age children, be they strangers, friends, or relatives, we've had a lot of 'splainin' to do (use your Ricky Ricardo voice for that last line.)
Why isn't he potty trained? Why can't he answer my questions? Why doesn't he want to interact with the other kids? Why does he keep repeating the same phrases? Why does he stare off into space so much? What is he wearing on his leg -- did he hurt himself? Why?
How best to answer is the bigger question. When the diagnosis of the C.P. was still fresh, and the cognitive problems still emerging as more than a simple "delay," there were a lot of questions and a fair amount of friction -- from within our own little family. Turns out, Brian and I handle this sort of thing very differently. I tackle any emerging issue head on with the ferocity of the Momma Bear I am. Hours of reading and research, pushing the difficult questions forward in appointments with doctors and chasing the specialists out into the hallway if they haven't adequately answered my questions, or if I simply want them to explain the brain scans to me AND the resident they are teaching.
I've surprise a lot of doctors with my tenacity and my knowledge (I am only a graphic designer, after all -- thank God I took Latin in High School or I'd never have figured out what the Neurosurgeon meant by "sequella"...). I drive my husband crazy. Brian prefers a wait-and-see approach. He would rather wait for solid proof of a problem then look for symptoms and self-diagnosis. He'd also rather not discuss the problem with others, but keep things in our circle to be dealt with as needed.
Things changed a couple of months ago, after the “Big One.” The week before Simon's status epilepticus seizure we were in the ER due to an unexplained weakness on Simon's left side (more so than usual). After a chat with a Neurology resident, I was pretty sure it had been a nocturnal seizure. I'd long suspected seizure activity (the absence kind), but Brian had not seen it himself, and so thought that maybe I was going a bit too far. I'm sure you can imagine the sort of contention this caused.
To our credit, however, we did manage to have a really good conversation (after a little yelling and crying). We were able to talk about the feelings that led us each to process these complex issues in such different ways, and we agreed to try harder to support each other. Good thing, because in the week that followed we needed every bit of strength and resolve we could muster as a couple to get through the difficult hours ahead -- many in the darkness of not knowing if our little boy would ever wake.
But he did, and we got though it, and here we are on the other side. It is New Year's Eve and I think that if I am going to take anything with me out of 2010, to carry into the new year, it is going to be the resolution to care a lot less about the answers to the questions. Well, maybe not the answers -- I'm still going to doggedly track down any lead I can find that might help my little guy. The reactions of others to the truth of our sitation is what I am going to stop worrying about.
Over the course of the last year, I've been told by potential babysitters that Simon's issues were too much to handle. I've been told both, that I should be doing more, and that I should be doing less. I've been told that Simon is ready for things I think he isn't, and not ready for things I think he is. Once, when explaining his level of cognitive disability, I was told that we would "love him anyway."
Well, there is no ANYWAY. And there is no right, and no wrong, and it IS a lot to deal with, but -- to quote a favorite nurse -- "It Is What It Is ( IIWII, pronounced eewee)".
So this year, when I argue with my husband about how to handle something, when a stranger or a well-meaning loved-one says something hurtful, when I feel defeated or overwhelmed, I'm going to resolve to remember that it IS what it IS and that IS okay.
Even if it isn't.
I'm also going to remember that for every troublesome encounter, there are twice as many blessings. Simon isn't in pain and is happy. Olivia is incredibly compassionate and wise for a child of 8. My husband and I can walk through fire and darkness and still hold hands in the light. And there's you -- family, friends, dedicated sitters, therapists and teachers, acquaintances and maybe even people I don't know, who care enough to follow the progress of one little boy.
Blessing to all in 2011, it is going to be our best year yet.