Archive - March 2013

1
The Night Watch
2
Doctors, Deadlines and Drama…
3
I Don’t Care If You Stare
4
Online Medical Research: A Blessing And A Curse
5
Blood Bath?

The Night Watch

Ask any new parent and they’ll likely admit to having slept in their baby’s nursery, with tired eyes trained on the rise and fall of baby’s chest, ears pricked listening for each breath. We make our baby’s rooms cozy, soft and inviting, not only for them, but for us; for the hours spent there nursing, playing, changing, cuddling and vigilantly keeping watch. When my daughter was younger her seizures, some life threatening, rendered me afraid to leave her side. Many nights were spent in her room—her nestled in her crib, me curled up on the fuzzy carpet on the floor below. There is nothing quite as lonely and still as those quiet hours while everyone else in the world (it seems) is fast asleep. Avery woke often for comfort and midnight tube feedings (I wish I had thought to take a photo of the feeding contraption we MacGyvered for her with medical tape and tubing, it was like a pediatric beer bong.) This weekend while doing a spring clean, we donated several bags of the kids’ old toys and baby gear. The play pen, an old stroller, a baby gate, and the Fisher-Price Ocean Wonders Aquarium that once provided comfort[…]

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I Don’t Care If You Stare

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[…]

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Online Medical Research: A Blessing And A Curse

  With so much medical and genetics related information accessible online, many parents regularly turn to the internet to research everything. If you’re the parent of a child with special needs or specific medical issues, it’s crucial to understand as much as possible about current challenges, potential problems, and helpful therapies.   This knowledge is both a blessing and a curse. Our daughter has a chromosomal deletion/duplication disorder. This damaged DNA makes her susceptible to certain diseases. Incredibly, scientists have identified a number of specific faulty genes as the cause of certain diseases. We have a comprehensive list of which of our daughter’s genes are affected and after delving into the online world of genetic gene cards, we’re aware of which diseases may be looming. I don’t have to tell you how frightening this is. It’s like knowing your child will likely be in a horrible car accident in the future, without knowing when or where or how severe, yet you’re powerless to stop it. There’s nothing you can do, but being armed with information and a solid understanding of your child’s diagnosis or prognosis is essential in terms of being able to ask the right questions.  Most doctors do not appreciate Dr.[…]

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Blood Bath?

Bath time is sweet and peaceful at our house. Honestly, it’s one of the most treasured parts of the day. It’s also the time when my husband takes over. That’s right, he bathes our daughter while I surf the web, chat on the phone, paint my nails, help myself to seconds of dessert and cue up Blooper clips on You Tube. Yes, it’s a truly magical time. The other night as Avery splashed and I sloshed (my wine), my husband called me into the bathroom. “Lis, you have to come see this!” So I put my online Scrabble game on hold and put in an appearance. It was the least I could do. I did after all just eat the last ice cream bar. My husband’s ice cream bar. It was delicious. Aw… Avery was happily drawing on the tiled walls in the tub. It’s okay, she was using the soap crayons Santa brought her. Seriously fun for kids by the way. Those, and the spongy ABC letters that stick to the wall are fantastic. If you have an emergent speller, get some. They’re great. Just look at how hard she’s working. She even spelled her name. Amazing.  Good, clean[…]

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