Sunday, May 27, 2007


Two nights ago, I dreamt that B2 was being a pain in the arse and poking my face, or whatever, and that I threatened, jokingly, as I occasionally do, to bite his fingers off. He teased me once more, and I did bite his fingers off. It was remarkably easy, not as hard a Snickers bar, more like a Milky Way.
Anyway, I was suitably horrified, picked up the two fingers from the floor (although i don't remember spitting them out), and raced him to the Emergency Room.
At the hospital, he was whisked away, and inexplicably I did not go with him. When they returned to send him home, I noticed that his hand was bandaged, but the dressings were far too short to have fingers reattached.
I screamed - "Why aren't his fingers back on???!!"
Apparently they didn't know I'd brought the fingers.
A full all-hands search revealed the missing fingers, one of which looked like it was speckled with black mold, on a chair tucked under another patient's bed.
The nurses raced him into surgery and the missing digits were reinstated.
How screwed up am I? What does this mean?

Saturday, May 26, 2007

Letting down my guard... (March 2007)

Too good to be true.
Touch wood.
Wouldn’t want to jinx anything.
I have to whisper it.

Last week, I bragged that B2, my four year old son, had been well, healthy, strong as an ox, not even a sniffle, for ten whole weeks.
For most four year olds, ten weeks without a cold, while it might be unusual, certainly wouldn’t be cause for celebration.
Not in this house. No, I more than let down my guard. I bragged. I bragged to my Mum, I bragged to the lawyer, I bragged to my friends and my family. I even sent an email to our pediatrician punching my fists in the air in victory.
The last ten weeks were the first ten weeks of B2’s life without illness. The first ten weeks in four and half years that he hasn’t needed a nebuliser, antibiotics, steroids, numerous doctor and hospital visits. I mean, the kid hasn’t even needed a tissue!
After a month of being well I was cautiously optimistic. It looked like our move overseas did land us in greener grass. At six weeks, I was thinking about planning ahead, and at eight weeks I was ready to shout it out to the world, but, I held off for another two weeks. I didn’t want to celebrate prematurely. There's enough prematurity in his life. I didn’t want to jinx his good health.
Like a pregnancy after a miscarriage, I needed to be sure everything was OK before I started crowing. At ten weeks of stunning good health, of trips to the beach, of going to kindy each day, of swimming lessons and gymnastics, and playdates with friends, I was getting cocky.
Parenting a kid with a lousy immune system sucks. When you see a kid with snail trails hanging down to their upper lips, or coughing a spray of filth, we parents of “fragile” kids run away. When a toddler comes up to us in a waiting room with goopy eyes or a sniffle, we pick up our kids and face them the other way. We keep alcohol based hand wash in our handbags, and wipes in our car. We *never* let our kids play with communal toys at the dentist, or the library. And waiting rooms, well, B2’s not even allowed to touch the door handle or the plastic chair frames, let alone the books or legos that have just spent time in the cess pit mouth of some germ infested infant.
Other parents look at me strangely. When their kids offer mine a slightly drooled on toy, I say a polite “No thank you”. If I say, “My son has a poor immune system”, I know they’re thinking one of three things. It’s either “You know that kids who aren’t exposed to germs don’t build up healthy immune systems”, or “Just because her kid gets a few colds, she says he has a poor immune system”, or maybe “Ewwww, that kid has AIDS or something”.
The truth is that my son doesn’t have any recognized immune disorder. He doesn’t have a Primary Immune Disease, or HIV or anything. His labwork does show that his immune system is functioning below normal, but not by all that much. Living with him dances another tango. Since he first came home from hospital, some five months after my waters first broke, every four weeks, he’d get sick. Not just a cold, but a cold, followed by breath-leeching asthma, a pneumonia, or sinus infection, or double ear infection, or some combination of infections. One round of antibiotics rarely cures him, and by the time the antibiotics do start working, the tentacles of another infection have slithered in. That’s not really true, as we do often get about five days at the end of a course of antibiotics before the next virus sneaks in and turns nasty. But I’m in the mood for a slight exaggeration.
I try to do the right things. Nobody smokes. We eat well, mostly organically grown produce and whole foods. I bought a super-duper expensive vacuum cleaner with enough filters to stop anthrax in its tracks. We wash our hands, and we do have a big dog in the house. I even use my own homemade household cleaners without chlorine and other evil chemicals. It doesn’t seem to make much difference, although if you’d spoken to me one week ago, I would have sworn that all of my hard work was finally paying off.
But no, on Saturday, he had a sniffle, and by Sunday night we were in an ambulance, with him struggling to breathe, as a simple cold took hold of his airways and started shutting them down.
So, now, instead of planning a vacation, I’m worrying about how I’m going to get insurance for a trip. Instead of thinking about going back to work, I’m resigned that no sane employer would hire me. Instead of doing some reading for my classes, I’m Googling “Immune boosters”. Instead of inviting friends over for dinner, I’m calling a friend with another little boy with a crappy immune system. Instead of going to bed early at home after four nights of barely any sleep on a fold-up bed in a ward of fevered grommits, I’m sitting here, writing up this whinging and whining piece.
I’m never letting my guard down again. Never. Not ever. Nope.

Friday, May 25, 2007

Mulching Sensei

“Your son is a retard. He doesn’t do shit, he’s messing up my class and I can’t waste my time teaching him anymore. You need to leave,” said Sensei as he pulled me to one side at the start of B1’s third Karate class tonight.
The actual words were probably closer to “I’ve spoken to my master, Jungle Jim, and we just can’t teach B1 here. This is not one-to-one, and he’s taking up my time, he’s taking it away from the other kids. It’s not going to work”
I walked back into the school hall, and as the other parents watched I put B1’s braces and shoes back on, and walked out while a four letter song escaped me.
Black rot is creeping in.
B1’s stumpy little digits rattled my hand in the night air. My seven year old pleaded up at me. “Stay Mummy, Stay Karate. I behave Mummy. I behave.” His younger brother asked “Why are we going Mummy? What happened?”
I’m the idiot around here. I said “They don’t want you anymore B1”.
There was a time when I didn’t want B1 either. But that was seven years past. Seven years of a growing strawberry blonde rose who has changed my world.
It’s all roses, the Down syndrome thing. Sweet smelling, thorny, black rot, brilliant colour and life sucking aphids. I've gardened through it all.
I composted the gymnastics instructor who told me that B1 would need to wear a nappy in class after he spilled diarrhea on the gym mats.
I green binned the school psychologist who said B1 would never have any typical peers as friends.
I dethorned the woman who called him “Cute, for a retard” in front of the hospital.
I’m not settled enough right now to know how to manage the Karate instructor.
Should he be fertilised? Absolutely not.
Maybe pruned? That sounds attractive.
Or maybe he needs a graft. Yes, that’s it.
He needs a graft from that guy who said “We judge a society on how it treats it aged, infirm and disabled” or some such corny stuff.
I’d like to mulch Sensei and put him in the dog poo pile, but that wouldn’t achieve anything really. I guess I just need to head to the nursery and find a new Sensei. One that thrives on a challenge with gentle encouragement.