Monday, April 17, 2006

The Note Pinned to my Son's Back

Remember in kindergarten when the teacher would pin notes to your back so your parents would be sure to get them? This poem was inspired by a walk around the lake with Marilyn.

The Note Pinned To My Son’s Back

In case of emergency, please take me with you. I am almost two years old. I can’t have calcium. The vein on my right arm looks like a great one, but really it’s a roller. Please inform the phlebotomist.

I love my Cookie Monster. I like to lay on him and make him laugh. I like to bite his fur off. I like to shake him and knock his eyes against my forehead. I like to have my arms around him when I sleep.

I still put things in my mouth. I like to lick noses. When I’m angry, sing David Bowie songs to me and dance a little bit. Maybe I will laugh.

I need five doses of medicine a day. I will brush my own teeth. I love things that spin. I always keep my eyes open during prayer. I can clap my hands. I can snort. I think that’s how people communicate.

I can crawl. I wear corrective booties to keep my bones aligned. I can’t talk. I can’t walk. I can’t run.

So in case of emergency, please take me with you.

Ghosts of the Past and Present

Niko and I went home to see the family for a few weeks. I saw people that I haven't seen in years, some who read this blog (hi, Em and Sue!) and others that didn't know anything was up with my son, or that I had a son, or even that I was married. It's always so strange to go home, and see the places that I grew up. I have changed so much since then! I see the old back trails where I used to ride my bike, or the Coal Haul Road where my inseparable friend, '80, and I used to walk and talk. She died a few years ago, quite suddenly, and it always especially hurts to see the things that remind me of her, which is pretty much everything. I thought of all the jokes that nobody else would ever get, because they were between '80 and I. Has it ever occurred to you that when you keep a joke between just two people, when one of them leaves, that hilarious and witty thing that you used to giggle about just decays into a rotted powder. It's never funny again. Much better to have a third person in on it, so that there will be somebody who can keep it alive with you. Thank goodness Feathers was in on so many...they still glitter whenever I talk to him.

Anyway, time for a little Niko progress report! He is doing really, really well, maybe better than I ever thought I'd see. He'll be three soon, and transfer out of his birth to three program into preschool. It's a challenge finding one that works, really. I find that I have to fight for every little thing. I see the risk of a school taking a child with such a extensive medical history, but he is a little boy and deserves to be accepted and taught just like everybody else. We put the new pattibobs (shoe inserts) into his shoes, and his left leg stopped turning out almost immediately. I think it will really help him. He's very vocal! No words, yet, but definite growls, buzzes, sounds for "yes", etc. Even without words, he manages to make most of his wishes known. His meds are down to two 2ml doses of propranol a day, and 1.8 ml of Ferrus Sulfate. No Zantac! He's been off of that for two or three months now. He drinks three bottles of cow's milk a day, and we're working on Sippy Cups. He'll take a quick sip or two now, instead of rejecting them immediately. He still prefers purees for dinner, but will eat off of our plates. He loves to play on the piano, carefully with only one finger instead of banging with his hands like most kids. He can work an accordian. He knows that if he hands us a flute, recorder, or a harmonica, something magical will happen, but he won't blow on them himself. (I finally tossed the kazoos. Who honestly wants to be handed a kazoo a million times a day?!) Niko's getting really tall, much taller than the average William's kid. Ha ha! Those are MY genes coming into play, I think. He's still very affectionate. He still sleeps with his arm around Cookie. He's (mostly) stopped biting people. He is pulling his "I'm in charge here!" Tsar Nikolai persona more and more often. That always makes me smile.