40+5

A quiet day.
Acupuncture this morning, pure bliss.
Then a quick trip to Felix’s school to see his class perform a dance at 11.30. We got there at right on 11.30 (as we were instructed) and they were just finishing. Sigh.
Anyway, am at home now and taking it very easy.
Jasper is (finally) asleep, mum is picking the boys up from school and is in the process of making her chop casserole for dinner.
Those vanilla biscuits may be a little project for me and Oscar this afternoon while Felix is at art class.
I’m watching Cinderella Man and I hate boxing movies but I’ve decided that Craig Bierko is quite the spunk and as much as it pains me to admit it, Russell Crowe really can act. Renee Zellweger still shits me.

and just so you guys can be assured I am not exagerating about the trotters…
and

. . . oink oink oink.

*****
On Wednesday we had Auskick training and I got to talking with one of the other mums. She knew us, correction, she remembered Oscar as her eldest son had gone to preschool with him. I can’t tell you how many people ‘know’ us from this time that come back into our lives at various events or activities.

Once we got talking I had vague recollections of her as one of those parents who do the overley friendly thing when you have a kid with special needs. You know the ones, they talk a bit louder, are particularly effusive, gush with how lovely your child is and so on and so forth. The type who, because of the particular time it is in your journey with your child with special needs – the time of most doubt, most anxiety, most intervention/testing/decision making – you just want to poke them in the eye with a stick and tell them to fuck off. You’ll be relieved to know that some years later you recognise that yes, they are a particular personality type and that is OK.

Anyway, we eventually got on to talking about her son, who is experiencing the tightening of tendons in his toes. This, it turns out, can be the first sign of juevenile rheumatoid arthritis.

We talked a lot about Oscar and his feet issues, botox and using it in the treatment of cerebral palsy (and possible applications with other syndromes), the shock of hearing your child needs surgery or could have something very life impacting, the use of alternative therapies etc etc etc.

And I haven’t really been able to get the whole conversation and situation out of my head. You see, many years ago, a friend in my mother’s group said to me that we were lucky with Oscar. That we knew about his condition from birth whereas there were those in the group whose child may have an illness or disability that wouldn’t present until the child was at school or even later in life. Granted, it was a weird thing to say to someone but she did have a point.

Here was a mother who was suddenly trying to get her head around the fact her child could have a condition that could be incredibly debilitating and life-altering for her child. And, as those of us with kids who have special needs know with a keeness you wouldn’t wish on your worst enemy, she can not make it go away.

I guess it just rang home for me that feeling I had when Oscar was 10 days old and the neonatal intensivist told us about Oscar’s dodgy chromosome four. I was holding Oscar a the time, all 4 pounds of him. He was in his first outfit, a pale blue polkadot pinnie that had been made by one of the hospital volunteers. There was a big splint on his right arm holding his drip in place, a big bit of tape going across his cheek keeping his gastro tube in check and the oxygen/CO2 monitor thingy illuminating his foot so it resembles ET’s finger. That feeling of looking down at him, knowing that in every cell, in every part of his body was this dodgy chromosome and there was nothing I could do about it. Nothing I could do to make it go away, nothing I could do to make it better. Feeling so fucking angry at God, at the world, at science, that it/they picked Oscar for this little experiment. But more than any of that, feeling that this child was perfect. Through tears, I said to the doctor, “But he’s perfect”, he replied to me “of course he is, he is your son”. And so, as a parent, there is no greater truth.