Monday, February 13, 2006

Monday Musings

I compose great posts in my head in the shower, but when it comes time to type them up, I can never remember what I wanted to say.

I'll tell you what makes me crazy. I look at my son -- who, by the way, will now be known as D. -- and I don't see his face so much as I analyze him for signs of this syndrome that he might or might not have. (By the way, the only reason I'm not naming this syndrome is because, for now, I don't want my family to Google it and wind up here. If it turns out that D. has it, I'll name it and put up a disclaimer for people who think they know me.) Every time my kid has a tantrum -- and remember, he's 2, so we're talking fairly regularly here -- I think, "Is this a normal tantrum? Or is this a syndrome-related tantrum?"

I consider the worst-case scenarios all the time. Part of the problem is that I'm a snob. I come from a family of smart people. The kind of people who correct your grammar while you're telling a story. So to me, the thought that maybe my kid isn't -- can't be -- smart is terrifying. To think that I can't share literature with him, that I'll drop an obscure reference and he won't get it, it hurts me so much that it causes physical pain in my body. Yes, I know, he's my son, and I love him and he is who he is and I love him unconditionally, but it scares me speechless when I read about kids with this syndrome who are 16 but remain forever 10-12 intellectually.

I'm exhausted from having to confront the worst parts of myself. The part of me that is an intellectual snob. The part of me that focuses on my suffering in all of this, instead of focusing on, oh, say, HELPING MY KID. The part of me that blames my husband's family for this. His parents are FIRST COUSINS, for God's sake. I found this out an hour before my wedding. To this day, my husband insists there is nothing at all abnormal about this. It's so freaking abnormal I actually CANNOT think about it because it makes me so insane. HIS GRANDMOTHERS ARE SISTERS. And two of his brothers tested positive for a genetic disorder that is directly related to the fact that their parents are, well, RELATED.

I'm angry with my former pediatrician. Not so much for not catching the potential for this diagnosis, but for not answering the email I sent two weeks ago detailing where we are now. He's the one who asked me to keep him updated about D. It would kill him to reply? And the neurologist we saw when D. was 6 months, the one who said he would be "better than normal." I emailed her before I met with this neurologist to ask if there were any records she had that I should be taking to the appointment. Not a peep back from her. People suck, they really do. Yes, I know that not everyone sits around waiting for my email, but, you know, frankly, maybe they should. (That was tongue-in-cheek, we all got that, right?)

I'm just plain tired. And I'm annoyed with myself for feeling like this. So, how was your weekend?


Meow said...

Don't be so hard on yourself. You are entitled to be disappointed at what may not be in your son's future. But the bottom line is ... he is here, he is yours, you love him unconditionally, no matter what syndrome he has. You will do what is necessary, and will get on with your lives, making any adjustments that may be necessary. It's a fact of life that that is what mothers do. There are plenty of people out here who are there for you, for a shoulder to cry on, or whatever. We may not know you personally, and we may never meet physically, but this medium (blogging) is the perfect outlet for our feelings. Just go for it. Oh yeah, you are not a snob ... just honest. Nothing wrong with that.
Anyway, I had a great weekend (which I know you read on my blog), and hope that yours was too (apart from the feelings you wrote about). Look after yourself, take care ... Many hugs, Meow