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The Little (Ear) Drummer Girl

Apr 15 2013

The trouble with having a child with an astounding threshold for pain is…they have an astounding threshold for pain. Sure, there are times like during vaccinations or minor scrapes and bumps when it comes in handy, but mostly it’s just scary. If my daughter should ever cry out in pain, we know it’s serious.* Take the time she sidled up to the gas fireplace. Though it had been turned off for some time, the glass was still very hot and she burned a loonie sized section of her calf. Even a tiny burn is agony for most, but she didn’t even feel it. A few days ago Avery seemed slightly under the weather — unusually tired and very pale. She had a low grade fever and not much of an appetite, but she didn’t complain. When she woke up the other morning, weeping, I knew something was wrong. She told me her neck hurt (I’m sure she meant her throat), and her tummy, and her ankle too. Who knew “the ankle bone was connected to the ear bone” because an hour later, her ear drum burst. Our doctor confirmed the yellow liquid oozing from her ear was the result of[…]

Ladders and Dadders and Bros

Apr 14 2013

As I sit here at my desk, gazing out the window deciding what to tackle next—update my resume, answer emails, work on our taxes—my eyes fall upon my neighbour who is perched high upon a ladder; clearly taking advantage of the mild weather, he’s taking down his Christmas lights. Naturally this reminds me of the battle my dad fought and lost with an unruly ladder. Forget the taxes, I’m going to share this story instead. My parents live near by and I pop over often. On this particular day I had stopped in without the kids for whatever reason. I was in the kitchen putting on the kettle for tea when I happened to glance out the bay window. It was at this exact moment that I witnessed my father riding a ladder from the crest of the roof, down to the pavement. Wearing slippers instead of sturdy shoes was his first mistake. The second was neglecting to ask someone to hold the ladder securely on the sloped driveway while he strung the Christmas lights. The bottom of the ladder slid away from the house on the slippery pavement and my dad plummeted face first to the ground. He[…]

Apr 09 2013

Twenty-twenty-twenty four hours to go I wanna be sedated. Nothin’ to do and no where to go-o-oh I wanna be sedated… To clarify, The Ramones want to be sedated. I do not. At all. In fact, the idea of being sedated seriously freaks me out. I’m not talking about urban legend scenarios where you’re put under at the dentist and wake up with your shirt on backwards. I’m talking about the real fear of being unconscious while somebody else monitors your breathing and heart rate. That’s some kind of scary. The only thing scarier is having to sedate your child. Especially when your child has underlying medical conditions that make anesthesia more risky. In order to perform an EEG on our daughter last week she needed to be asleep. Not fully knocked out, but soundly asleep. She also needed to be sufficiently sleep deprived to elicit the disorganized brain chaos necessary to reveal any abnormal brain waves lurking about. Our neurologist suggested using Chloral Hydrate the morning of the procedure to sedate. We’ve used this drug before without any problems. However, after doing some research into Long QT Syndrome (a potentially serious heart condition our daughter is being monitored[…]

Apr 08 2013

Have you ever looked at your child and asked, “What is going inside that head of yours?” Apparently there’s a way to find out. Just hook up them to tangle of rainbow coloured wires and take a gander at their brain waves… Avery has been having seizures since she was three years old. This is attributed in some way to her genetic disorder. Luckily for us, we have found the perfect balance of medications and outside of a few minor absence seizures, she has been seizure free for nearly two years. She was tested a few years ago and the results showed “moderate seizure activity” despite having relatively few physical symptoms. So now it’s time again; the neurologist scheduled another peek via EEG. If no seizure activity is present, he will wean her off the anti seizure meds. This is both thrilling and terrifying… “But, what if her seizures come back?!” I protested. “She’s fine on the meds. Can’t we just wait a little longer?” “We need to give her a chance,” he told me. “You don’t keep someone on medication if they don’t need it.” He’s right. I may not like it, but this is what happens now.[…]

I Don’t Care If You Stare

Mar 27 2013

Pretending to be a puppy at the pet food store… The moment I stopped caring so much about how strangers perceive my child, is the moment I was set free. I can’t pinpoint when it happened exactly, but somewhere along the road from resentment to contentment, I rediscovered the joy of parenting my unique child. I don’t mind a curious glance my way if it’s brought on by my own behaviour. If I pull out some experimental moves on the dance floor and turn over on my ankle and squeal like a pig, (hypothetically of course) an eye-roll in my direction is justified. When strangers stare disapprovingly at my innocent child however, my mama lion mane stands on end. Though my daughter appears “normal,” her developmental delays cause some decidedly odd behaviours. Errands are always eventful. Common grocery store scenario: As she furiously stuffs checkout aisle candy into her pocket, her attention suddenly turns to the man behind us in line. While tugging relentlessly on his sleeve, she announces to all within earshot that he’s her daddy (I never met the guy, I swear!). When she tires of him, she darts behind the counter to give[…]

The Little (Ear) Drummer Girl

Ladders and Dadders and Bros

Warning: This Post May Put You To Sleep….

A Peek Inside Her Head

I Don’t Care If You Stare