Category - Health

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Dear Parent Of A Newly Diagnosed Child…
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Dealing With Conflict—The Story Of An Empath
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Why mindful? And what does that even mean anyway?
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Waiting Room Worries
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Small Kids, Big Worries
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When Doctors Make Mistakes
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Carcinophopia—Fear of Cancer
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I Had No Idea THIS Was An Aging Thing!
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Little Cough, Big Scare
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Decisions—Growing Pains Update

Dear Parent Of A Newly Diagnosed Child…

The early days when you suspect something might be wrong with your child completely suck. Literally—the fear and worry sucks the life out of you to the point where you wonder if you have the strength to actually go on. But the day you hear the words, the actual diagnosis, is the worst day. It’s indescribably (though I’ll try) horrendous.  When we got the phone call that confirmed our daughter has a chromosomal disorder I was dumbstruck. I couldn’t make sense of  what was happening. There was a loud ringing in my ears that made it hard to think. I fled outside and gasped for air. I couldn’t breathe. I eventually came back in and sat quietly on the couch beside my husband and we cried.  A few months later our daughter ended up in hospital which is a despicable story in itself (doctors are wonderful people, but they don’t always see what you see. When a medical professional tells you that it’s all in your head, listen to your gut and do what needs to be done.) This is when further genetic testing revealed the extent of our child’s chromosomal deletion/duplication. The first few weeks with this new knowledge[…]

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Dealing With Conflict—The Story Of An Empath

Conflict turns my stomach. It makes my chest tight and uncomfortable. I feel legitimately sickened by it.  I avoid arguments, and negativity, and pot stirring, and drama as best I can—not because I’m a high road walker. It’s more about self-preservation. I wasn’t kidding when I said conflict makes me sick.  As a sensitive, over thinking, soft-hearted, earnestly reflective, people pleasing, peace making empath, it’s a struggle for me to let it go. Why can’t I be more like Elsa?! I take hurtful words or actions to heart. I absorb them and replay them in my mind. That’s the tricky part about being a “highly sensitive empath“. It eats me up.  When friends in my life are in a bad place, I absorb it like a mushy sponge. Instead of spitting an insult back at the insulter, I swallow it. This is not to say I swallow people’s spit. Only my own.  Somebody told me once that this makes me weak. So I slapped her hard across the cheek and kicked her squarely in the crotch. Okay, not really. But I really gave it to her… but only in my head. Don’t get me wrong, if you mess with one of[…]

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Why mindful? And what does that even mean anyway?

I like to hang onto things—to cling to past experiences and their corresponding feelings (good and bad) like some kind of memory hoarder.  At the same time, I enjoy time travel into the future. If only I had a functional crystal ball, then I wouldn’t need to spend so much time guessing and imagining what lies ahead. I like to know how things are going to play out so I create possible scenarios in my head. It’s a crap shoot. About 90% of my predictions are wrong. Or more often, by the time the future becomes the now, I’ve forgotten what outcome I was trying to orchestrate in the first place.  My husband started actively learning about mindfulness years ago, long before it became a trend. And man has it ever become a trendy. These days you can’t swing a yoga mat without hitting a meditating millennial or a #mindful hashtag.  Wherever You Go, There You Are by Jon Kabat-Zinn is the first book on the subject of mindfulness that my husband read. In fact, it’s the first book he’s read from cover to cover in our entire marriage! Clearly it captured his attention.  I’m reading it now. It’s no ‘Girl[…]

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Waiting Room Worries

My husband and I have sat in many waiting rooms over the past few years, anxiously awaiting news. It’s scary, and nerve wracking, and lonely—your basic trifecta of darkness.  But thankfully and luckily and gratefully (your basic trifecta of good fortune) our children’s surgeries have gone well. Yes, I said children.  I rarely write about our developmentally typical boy child. He’s a full-on teen now and his stories are his stories to tell. But recently he had to have surgery. He’s the kid we don’t have to worry about or fill out complicated medical waivers for. I actually said something to that effect not long ago so apparently I jinxed it. Anyway, it was fine. He is fine. I asked him if I can share a bit about it at some point because we learned some things from this experience that I know other parents can benefit from. He said, “Sure,” with a shrug. So I’ll get to it one of these days.  But back to the undisputed star of this blog—our developmentally atypical girl child. She has several surgeries under her belt—none as serious as some of the ones friends’ children have gone through. But, there have been risks and[…]

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Small Kids, Big Worries

Anxiety is a pain. Whether we come by it genetically or situationally, it hits all of us at various times in our lives. I’ve written about my struggle with worry—as a parent of a child with a variety of medical issues, I worried about our girl a lot. I looked too far ahead and fretted about the what ifs. I couldn’t stop the catastrophizing.  When you live in the past or in the future, you miss the present, and that’s where all good stuff happens. So I did the cognitive behavioural therapy exercises and it made a world of difference. Don’t get me wrong, I still have moments where I freak the hell out, but I know how to reign it in. This whole being mindful thing is a work in progress.  Adults coping with anxiety is one thing, but what about children with anxiety? Watching your child worry is like being poked in the stomach with a sharp stick.  I’ll unabashedly tell you about my battle with my worry monster, but sharing someone else’s story is offside. But I can say that having a sibling with disabilities can create fear and anxiety for good reason. Watching your sibling choke and[…]

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When Doctors Make Mistakes

A question in a Facebook group and the memory of that doctor and what she did, or more accurately—did not do—came flooding back. And now I’m raging. Unlike another doctor in our past whose negligence also put our daughter’s life in jeopardy, I never got closure with this doctor. Let me back up. When our daughter was a few months old we knew something was wrong. In addition to her missing key developmental milestones, she stopped feeding. This photo was taken around the time Avery started refusing to nurse. These babies are the same age. Avery is the one in pink. Obviously. She was so tiny in comparison. Little peanut. This picture makes me so sad. But also, it makes me laugh. Hello, Andrew on the right? Breastfeeding was a struggle from day one. Poor suck, tongue tied, persistent thrush—these were the reasons given at the breastfeeding clinic. We eventually switched to bottle feeding hoping it would help. It didn’t. Babies are supposed to grow and thrive. Avery was neither growing nor thriving. She was fading away and we begged for help. Our family doctor who was on our side from the beginning sent us to see a well respected[…]

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Carcinophopia—Fear of Cancer

Did you know today is World Cancer Day? I wasn’t familiar with this event until I saw it on Twitter this morning. Or maybe I did know but chose to stuff it deep down into that place where I keep all my fears about it. And I should tell you, the place is full. It’s busting at the seams because talk of ‘it’ is everywhere.   You can probably name at least ten people in your life who’ve been diagnosed. And like me, you may have lost somebody close to you because of it. (I try to not directly refer to ‘it’ by name if I can help it. It’s easier to ignore when it’s unacknowledged.) I’m obviously afraid of it. Unlike a fear of sharks or getting swallowed by a sink hole, this disease is a more statistically plausible threat. We’re a pretty Cancer Phobic society—focused on a killer that may or may not ever come for us. Realistically we’re more likely to die of heart disease in North America than from cancer and yet we hyperfixate on the Big C. Is it any wonder so many of us suffer from Carcinophobia?   Cancer is in the news every[…]

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I Had No Idea THIS Was An Aging Thing!

Well into fall, the ride has come to a full and complete stop. This weekend our favourite theme park closes its doors, slamming them shut on thrill-seeking fun until next year. No more Tiny Toms or over-priced pizza slices or exhilarating coasters rides until next year. My son and I LOVE thrill rides. It’s something special we share. Every year we ride the rides from opening until dark. My husband doesn’t do rides. My daughter loves them and would happily plummet and spin and hang upside down, though she’s big on courage, she’s little in body. So in the spring, we take her to a family theme park called Centreville where she can experience rides just perfect for her. The only thing I don’t enjoy about some parks is the line-ups. Patience is not one of my virtues. The fast-pass ticket system at Disney is the way to go—for no extra charge you can print a ticket for your favourite ride and avoid lining up. At Wonderland, a park near us just north of Toronto, you have to pay extra for a fast-pass. No thank you. Instead, we attempt to avoid the lines by visiting the park in June when[…]

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Little Cough, Big Scare

  It started as a simple cough. Then simple turned into complicated. And we took one giant step backwards. “We’ve come so far,” I sobbed to my husband. “It’s unfair,” I cried into his shoulder. It took me years to quiet the fears after our daughter suffered her first and nearly fatal seizure. It took time and hard work to get back on track after that. But, eventually the PTSD faded into fleeting worries, and those worries began to quiet. Mostly. We finally had a taste of what family life is like without the fear. So this summer we ventured far and wide and high. We traveled by plane—up in the air for hours away from the possibility of medical assistance. We enjoyed a cabin high up in the mountains. We frolicked in lakes, camped, and canoed, paddling farther and farther away from access to help if we should need it. But guess what? I wasn’t worried. At all. Life was sweet—the sweetest and most fun it’s ever been for our family. Then the cough.  Our son got it first. Just a dry hacking cough, no other symptoms. A month later, near the very end of our family vacation in[…]

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Decisions—Growing Pains Update

When I wrote about recent Growing Pains with our daughter so many of you jumped in to offer support, compassion and some kick ass advice. We all know it takes a village to raise a child, but it takes that same village to support a family who’s spinning in circles, not knowing what to do. Thank you village. Sincerely. We’ve stopped spinning. For now at least. We met with a wonderful pediatric endocrinologist yesterday at Sick Kids. I can’t say often enough how lucky we are to live just a short drive away from this world class children’s hospital. With the support of a wonderful doctor and her team, we have decided to put off Avery’s impending human growth hormone treatment for at least six months. Pheeeeeee-ew. We learned the injections are nothing to fear. After the learning curve, they will become just another part of our daily routine. I can live with this. It’s the fear of the C word that has temporarily stopped us in our tracks. Avery’s pituitary does not produce enough HGH. The answer to why is hidden somewhere deep within her unique genetic make-up. But also lurking there in the shadows are other unthinkable possibilities.[…]

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