Every blogger worth a gram of anything including crack knows and reads Dooce. Sure, some will do that whole derision thing like “tsk, that’s a mummy blog”, as if it’s a substandard manifestation of this craze called blogging in the same way they call low-fat ice confection, ice-cream, in some warped marketing attempt to convince us it tastes the same as the real stuff.
Anyway, I’m addicted to it because she writes the way I think, she parents the way I do (with that ability to combine ‘only from my cold dead hands will you do anything to my child’ and ‘really, our kid, their behaviour, not so much’), she takes happy pills like I did, she knows the land that is PND as I do, she has a loving, funny husband and has a penchant for television.
Her post today is about her daughter and how the occupational therapist has given the whole family the big tick of ‘you don’t need to see me anymore’. I know what a monumentally wonderfully exhilerating feeling that must draw from any parent getting that kind of statement from any medical professional in regards to their child. Awesome. I am completely and utterly stoked for the Armstrong clan.
But I’m also, sad in a self-pitying, my turn to wallow in mud for a minute kind of way. *When I first posted this I said jealous but it didn’t sit well with me then and the discomfort just grew over the last couple of hours. I’m rarely jealous of anyone, occasionally envious but that soon passes as I am very aware that each of us get our load and bounty in life, just in different ways and times.
I’m also keenly aware of the most warped competition imagineable that comes when something is wrong with your kid. It’s called “my child’s disability is worse than yours”. It is some weird sick manifestation that normal people just endure in terms of how long was your labour (don’t tell me it was 48 hours because I’m betting a good 36 of those were technically pre-labour and you’re just a pussy when it comes to pain. See that. See what I did just there.), how little your child slept in the first few years of its life, how much they cried, how big the fish you caught was, blah blah blah.
I have actually heard someone say to a mother, “you’re so lucky she’s got Downs Syndrome, there’s so much support and money for people with that.” This wasn’t from some stupid nutbag, this was from the mother of a child who also had special needs, just not the obvious lottery winning Downs. That was the day I decided that hanging out pretty much solely with other families touched by the ‘special needs’ (otherwise known as really really suckful statistic our number was up needs) fairy was a poisonous place to be.
Sure, sometimes it’s really nice to talk to other people who simply ‘get it’ rather than looking at you with pity (bleuch) or saying something really enlighteningly stupid (like “I’ll fix him”, or “if he hadn’t been tested you never would have known there was something wrong. He’ll be fine.”, or “do you think he will ever talk properly”, or “you must really worry about his future”, or “what will you do when he finishes school”(someone asked me this when he was about two) blah blah BLAH), but for some sick desperate reason it will soon descend into who has the most heart crushing story with everyone ending up on the verge of suicide or at least a really really REALLY significant dependence on vodka. Although red wine also seems popular.
So I’ve come back to edit the post because I was pretty pissed off at myself that I felt the need to rain on the parade of someone else who has felt that heart dagger moment of something possibly being wrong with their child, and that I felt the need to rain on their parade when it turned out there wasn’t.
It made me as bad as the nutbags who say stupid things to me about Oscar all the time. It made me as bad as the educators who think they know best for a child they’ve never met because doing what is right and non-discriminatory moves them out of their comfort zone, can be hard and a lot of work. It makes me as bad as someone saying to the parent of a child with special needs, “at least he can walk” as if the ability to get from A to B is so much more important than being able to say “I love you”.
So it still hurts because you see, we won’t ever get that tick. Ever. Oscar will never hit the ‘normal’ button for anything. OH sure, his ability to eat his bodyweight in chocolate, ice blocks, popcorn or chips is bang on the mark for any child, but GOD how I dream of what his world would be if dodgy chromosome 4 hadn’t happened.
This time of year is always a lot harder and I always go a bit nutty about it all. I figure it’s sort of linked to the fact this is building to the time he was born.
Jasper looks so much like Oscar did as a baby that the “I wonder if this is what Oscar would have been like” thought keeps percolating to the forefront of my mind. I know this is stupid as they never would have been alike because Oscar was the first so he was destined to inherit all manner of neurosis and anxieties as is the mantle bestowed to all first borns. But it’s still there.
And all I can say is that the ache for a miracle for Oscar, for a magical night to happen where he wakes up talking and just being a regular kid sometimes runs so raw I can barely draw a breath.
So yey for Leta, go forth and take over the world and massive hugs to Heather and Jon for all their hard work and determination at helping their daughter climb this first big mountain.
It just hurts somtimes. That’s all.