I'm not sure how to even begin this without sounding ridiculous and self-indulgent. But I think I will, and if you feel your eyes starting to roll, then skip ahead to a post with pictures or something . . . I won't be offended. But sometimes I learn a lot from reading the blogs of people who are in tough situations, and maybe a look into my processing will help someone else. Or, maybe you're just nosy and like the voyeurism of reading someone's innermost struggles :)
Maya still has no diagnosis for the source of her global developmental delays . . . and I don't like the be dramatic, or feel sorry for myself. Those two things combined have left me in an interesting place over the last year-ish. I haven't had a mental framework for how to interpret her . . . will she grow up to be a "normal" kid with delays, who will just need a little time to catch up . . . maybe start school a year late, or not even that? Or will she be a kid who will need to ride a special bus, go to a special school, and need assistive living when she's older? And I know that everyone wonders what the future will hold for their child, but our situation is, well, a little different.
The not knowing is killer. I hate it. In the beginning, I would go into every dr's appointment (and there were a lot of them) with a swirly mixture of dread and nervous excitement----"Maybe this is when they'll figure out what is wrong----I don't want something big to be wrong----but if you can't tell me that everything is normal, and least tell me what the something wrong is----please don't give me more of the not knowing." But we just gathered more and more handfuls of the not knowing, as tests (cardiac tests, karyotype, genetic screening, MRI) came back normal. And each test that came back normal was rightfully a cause for big celebration (!!!) but a little, teeny tiny, grey voice deep in my head would say "oh, come on already."
I realized a week or so ago that I've been pinballing (that's when you shoot back and forth like the ball in a pinball machine) around through Kubler-Ross's stages of grief (even though I wouldn't necessarily call my thinking grieving, maybe it fits). In any given week, and sometimes on any given day, I would spend time in anger (at the world, at the system, at the doctors, sometimes at Maya), denial (she's just taking her time), depression ( ), and acceptance. And as quickly as I wrapped some sort of acceptance around me, it would slip away a little bit and denial would swoop back in. Although the ratios of time-spent-in-each-place have changed, I've been pinballing for a long time now.
Like 15 months.
At times I've wished for something with a name. At least "Down syndrome" would be a label that people could understand. It's hard to go to music class, or the pool, or anywhere where we often see the same groups of parents, and not have a way to clear the air. 12 and 13 month olds are running around the room in circles, and Maya (21 months) bounces in the middle and laughs, but she doesn't move (unless the door is left open, and then she crawls with lightening speed). I'm sure people wonder. But I have no words to break the ice with . . . at least no easy ones. And I'm not going to launch into a whole "Oh she has delays" speech. I just need a soundbite, something that shows that she's different, I know it, we're able to laugh at ourselves and take things in stride and with grace, and let's move on to chat about something more fun. I'm bite-less.
Anyway, I've realized that some people might feel like they've missed the announcement. Like, wait, I heard Maya is getting a trillion therapies a week---what's wrong with her? Did Dana ever tell you? But there's just been nothing to tell.
Suddenly, now, I can't do the pinballing. I'm so tired of it. So I'm owning the label "special needs" which I really didn't feel comfortable with until last week. I thought that label should be saved for kids who really had special needs, not silly Maya, and then Dave said "Um, she gets like 12 therapies a week, that's special needs". Yeah, I guess so----it doesn't bum me out, I just didn't want to take the label and use it in a "oh, so sad for me, my kid has special needs" kind of way.
So I'm boxing up as much denial as I can, and putting it on a high shelf somewhere, hopefully next to my box of not knowing. I know that I'll still end up looking through both of them from time to time, but they need to be further away. The ambiguity has got to go for now, I need to be in a making-peace-and-moving-on place. And I think I'm getting really close to there.
So the goal of all of this, besides clearing my own head, was to clear the air about where Maya is, and also to let people in a little. I tend to be fairly dry most of the time (in case you haven't noticed), but maybe it's helpful to come clean once in a while.