Tuesday, August 24, 2010

Worlds apart

I just attended my sister-in-law's annual backyard bash. Her husband's an advertising executive who's also an accomplished blues singer. Each year the family hosts a garden party featuring his band.

There's always a theme and people dress in costume. This year it was the 'dirty 30s' and people came as hobos or high-falluting fashion icons. My nieces are gracious, brilliant, multi-talented young women who always perform at these soirees. Tonight we sat mesmerized as they sang gospel songs in perfect pitch.

We don't normally dress in costume, but this time we broke with tradition. My hubby wore suspenders and slicked his hair back, my younger son wore overalls and a cowboy hat and my older son -- the one with disabilities -- wore a big straw hat. One of my daughters was MIA at a Justin Bieber concert and the other didn't feel like dressing up.

I have alopecia, a rare auto-immune disorder that only affects the hair: all of it fell out eight years ago. I typically adorn my head with bright crocheted skull-caps -- "happy hats," I call them -- or go bald. But tonight I wore my human-hair wig, the one I haven't donned in eight years. It was dress-up, after all. And on top of that I placed a lovely woven raffia hat with a black ribbon. I wore a plaid vest and jeans and black, patent-leather shoes. Without my usually-conspicuous head, I blended in with the other party-goers, many who came from the neighborhood. I could pass as one of the 'normal' people, I thought, with a small measure of glee. I could pretend.

The night started off okay. We wheeled Ben in and greeted the relatives. Ben was recently discharged from hospital, where he's been an inpatient since April, following major hip and knee surgery. He's still not walking independently, which is a surprise because we had no idea going in how rough rehab would be.

Ben -- who is non-verbal and so typically on the periphery of these social events -- astounded me by signing "You look beautiful" to his cousin.

We had a few snacks and then my hubby took Ben inside and downstairs to the widescreen TV so he could watch a Star Wars movie. Ben, 16, has a rare genetic disorder that causes bone problems, low-muscle tone, unusual craniofacial features, hearing loss and short stature. Oh yes, and "cognitive impairment" as it noted on his profile at the sailing program he attended last week. I don't use the term, so it was a surprise to see it there. He's about the size of a six-year old and a physician once aptly noted that he looked 'elfin-like' (I've always been partial to story book elves and dwarves).

Because it's challenging for Ben to interact at noisy parties, we often "default" to taking him down to the basement to watch a show he likes. In this case, our other kids, 11 and 13, joined him.

I chatted with relatives outside and my hubby and younger son came to dance with me. At one point I went downstairs, hoisted Ben on my back and brought him up and out to boogie, piggyback-style. He laughed hysterically. I could only do this for about 10 minutes because my knees are bad.

Then my hubby stood him up and we held his hands and swayed side to side.

A family friend noted how terrible it was that Ben's first hip surgery backfired (the hardware dislodged, pulling out a piece of bone with it, necessitating the same procedure a second time two weeks later). "Given everything he has to go through on a daily basis as is!" she said.

I nodded, and thought: You have NO IDEA. You have no idea what pain this kid has gone through.

I was about to tell her he'd been in hospital for three-and-a-half months, and then I thought: What's the point? She couldn't understand.

Ben won't follow his cousins -- or this woman's strapping young son -- to university, or to travel abroad or even just to stand at the mike at the annual party, captivating the audience with a song or joke.

But when he eats a carrot and signs, with a grin: "What's up doc?" or kisses a fish he caught at camp before throwing it back, or makes a preposterously long gasp at the scary part in the movie -- just to make sure I get it -- my life feels rich and immense and whole.

I don't understand her world, I thought, feeling sorry for myself, and she can never understand mine.

I sat down on the deck atop the garden and looked down on the dancing revellers, twinkling lights and bopping band. I finished my glass of wine, and had another. And soon it seemed the entire glittering party was floating away from me. I was an island, and they were moving out to sea. I watched these healthy, untouched young bodies swing and sway and I thought about the thick, long, bumpy red scar on my son's thigh -- the same one worn by so many kids on the orthopedic unit. In my mind it was a foot long, but when I checked today, on his teeny-tiny body, it only measured six inches.

I began to cry.

"What's wrong?" my husband said, and I shook my head, mute.

We left early, before the kids got their cake. We stopped at Starbucks, but they were out of frosted cupcakes, my daughter's favorite. "What about Sobey's?" I asked, suddenly willing to mount any road trip for the right dessert. "Aren't they open all night?"

I took slow, deliberate bites of my Starbucks lemon loaf -- the one with white icing and a thread of raspberry -- hoping it would soothe the ache in my chest, soak up the tears that continued to fall. And without a peep, my hubby drove us to Sobey's.

Louise is communications manager at Holland Bloorview Kids Rehabilitation Hospital in Toronto. She produces BLOOM, a magazine on parenting kids with disabilities that combines firsthand parent voices and professional advice. You can follow her on the BLOOM blog or get on the list to receive BLOOM magazine by e-mailing her at lkinross@hollandbloorview.ca. She's thrilled to be posting here on the 24th of each month. In addition to her son Ben, Louise has three other children, two adopted from Haiti five years ago.


  1. You wrote this beautifully. I felt like I was there with you for the entire evening. The fact that you brought Ben up and danced with him on your back? Well, that part just knocked me out. What we will not do to give our kids a slice of fun, eh? You are a wonderful Mama and advocate. Thank you!

  2. Thanks for sharing this, it was beautiful. I hope Ben's rehab goes better.

  3. Beautiful.
    Welcome to the HP writer's, nice to have another Canadian in the ranks.

  4. This was my favorite part:
    I don't understand her world, I thought, feeling sorry for myself, and she can never understand mine.
    Thank you for your insightful words and raw emotions. I am still processing all of this. I think I am making progress and exploring a lot of new feelings/emotions/truths, but it is still a daily struggle for me.

  5. Thank you everyone for this warm welcome! It is lovely to be among kindred spirits. I look forward to getting to know more about all of you and your children!

  6. Yes, Louise. So beautifully said. I knew just what you meant.
    I figure the rehab has to go better than the surgery, right?!

  7. Louise: What a beautiful post. I love how this is what we do here: take our pain (and our triumphs and fears and joys) and make something beautiful from them. How nice to see you here, and get to know you a bit more..

  8. Louise, this might be my most favorite post you've written -- it's so searingly honest and well-understood by those of us who -- well, those of us who understand. And I do -- I really do. Your ability to take this small slice of life, this party, and within just so many words convey a WORLD -- it's magnificent.
    Thank you.

  9. So glad to read you here Louise.
    This is so powerful. I feel that same sadness and wonder if I can convince myself the scar is only six inches, or if I have another issue altogether.
    this is hard. so much harder than I could have imagined.

  10. Hi Lisa -- Are you Lisa B from Toronto?
    I hope you will write something for BLOOM or Hopeful Parents because I want to hear your story!

  11. what a powerful, poignant, human piece of writing... sharing of your life. thank you. do you know that the (vanilla) frosted cupcakes at starbucks in bern are what i go for when needing to fill the sweet spot? sending love

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