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(TARYN GEE FOR THE GLOBE AND MAIL)
(TARYN GEE FOR THE GLOBE AND MAIL)

Fragile X syndrome has delayed my son’s development. Will he ever have a friend who isn’t made of wood? Add to ...

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With one hand I grasp the grocery bags while my free hand fumbles for the keys. I hurry to open the front door and get inside.

The sound of cartoons blares from the family room where our five-year-old son Will is watching TV. The house smells of the stew my husband has prepared for our Sunday dinner. Oliver, our seven-year-old, who is highly attuned to the comings and goings of the house, has heard me come in.

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“I here, Mom, I here!” he shouts.

I can’t see him from where I stand in the foyer, but I can picture him sitting at the table with his bingo cards laid out in front of him, flanked by a wooden snowman on one side and a two-foot-high Christmas-tree angel on the other. These are his bird bingo partners.

His playing partners go by the names of Frosty and Peacock Angel (due to the sparkly blue peacock clipped to her arm). When I saw the game in the art gallery gift shop, with its detailed pictures of exotic birds with names like “splendid fairy wren,” “Bohemian waxwing” and “lilac breasted roller,” I had to buy it because it combined two of Oliver’s great passions: birds and bingo.

“Mom, I here! Do you see me?” Oliver yells.

Hearing my son call out, I think about him and his brother and wonder, not for the first time, what the future holds for them. What should success look like for my sons? There is the radiant, bingo-playing Oliver, and our plucky, Lego-obsessed Will.

Watching them grow over these past few years has been fascinating – not just in the way that all children are fascinating when they are small, but in another way as well. In the past few years I have watched my youngest not just catch up to his elder brother developmentally, but in some ways surpass him.

Oliver, you see, was born with Fragile X syndrome, a genetic condition that causes learning disabilities and cognitive delay, and has features of autism. Behaviours such as intense focusing on one subject (such as birds), poor eye contact, attention problems, anxiety and hyperactivity may also occur.

As a mom of a special-needs child, I try not to dwell on the future too much. Going too far down that road is unsettling, especially at 3:14 a.m. when the rest of the house is slumbering. That is the hour when dark thoughts surface.

As I lie in bed, my mind spews out questions. Will Oliver ever have a friend who is not made of wood or isn’t designed to sit atop a Christmas tree? When he gets to high school will the kids be kind to him or will he be bullied? How can we turn his amazing knowledge of birds into an actual job? Will he ever eat a green vegetable without coercion? And, of course, there is the scariest question of all – the Lord Voldemort of questions for all parents of special-needs kids – who will love him as much as his dad and I do when we are gone?

I reflect on how our society defines success, at least as I first understood it: making enough money to be able to call oneself middle class, or preferably upper-middle class, having a solid marriage or partnership, raising a couple of kids, maybe owning a new car in the driveway of a detached home and taking a yearly vacation.

If this is truly success then I don’t know if Oliver will make it. But then I think about some recent events. How Will draws pictures of birds on the steamy bathroom mirror since he knows how much Ollie gets a kick out of it. How a boy in Oliver’s class coloured an entire “angry birds” series for him and another classmate brought a pencil to school for him as she thought he might like it.

I think of how Ollie’s schoolteachers support him daily and gently push his boundaries year after year and how the young woman who comes to our home to take him out into the community brings him to her house to meet her family and dog, then takes him bowling and sends “selfies” of the two of them grinning like maniacs.

These thoughts are my arsenal, my reminders that there are caring people in our lives. These are what I bring out in those early hours of the morning when the fear-based ticker tape in my head starts gaining momentum.

“Mom, I here, I here! You see me?”

I set the grocery bags down and hang up my coat. Listening to these words that I have heard time and time again, I suddenly realize that Ollie is not talking about sight. This is his way of asking: “Mom, do you love me? Do I matter to you?”

It is at that moment that I know with certainty what success looks like for my boys: not that they attend Harvard or play in the NHL or make a fortune with an Internet startup. My dream for them as adults is that they will both have a chance to love and be loved, that they will feel connected to others and have a sense of belonging – just as they do now.

I walk through the kitchen to where Oliver is standing alongside his silent bingo partners. As I approach him, he jumps around a bit, excited that I am home, and then smiles his beaming, gap- toothed smile.

“Hi Mom, I here! You see me?”

I smile back.

“Yes I see you, Oliver. I certainly do.”

 

Elizabeth Turner lives in Surrey, B.C.

 

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