1000 families project one moms fight to raise awareness of Williams Syndrome

1,000 Families Project: One Mom’s Quest to Raise Awareness of Williams Syndrome

Having a daughter with extraordinary needs calls for a family that’s extraordinary, too. One mom shares on how she’s broadened her definition of family since learning her daughter has a rare condition.

I come from a small family. Those big extended “everyone and their cousin” (who is also your cousin) gatherings make me a little uncomfortable.

I used to be all about the tight knit crew, the inside-jokes kind of family.

Uh-huh. Until we learned, when my daughter Alma was just five months old, that she had a rare genetic condition called Williams Syndrome.

At moments like that everything changes. The life that you imagined for you, your other child and your spouse simply doesn’t look like it did before. When you think of the future you see uncertainty, unfamiliar territory and a few extra people joining the “family” to help you do right by your child.

For us it started with a pediatrician. Then genetics. Then occupational therapy, feeding occupational therapy, physical therapy and speech therapy. There’s the dietician that we see for her slow weight gain, who is not the same dietician we see for her calcium issues. Our family has grown larger with each day.

Of course, we’re still at the core of it—my husband, Chris, our son, Shane, Alma (who we often call Allie) and me. But I quickly learned that having a child with extraordinary needs means needing an extraordinary family. And if you come from a small clan and want to keep some semblance of normal life intact, you need to pull others in.

It’s not just the 22 doctors and therapists assigned to help Allie reach her potential that have joined our ranks. There are the school friends who pop over a little more. The go-to friends we lean on for early morning babysitting before school so we can make a critical appointment. Or who’ll watch our son later than would be expected because we have so many appointments and sometimes have to make up the time at work.

There are the friendly strangers who nod and smile in the midst of a Class A meltdown. And of course, the network of families who have raised their kids with Williams Syndrome before you, and the ones who are in the thick of it with you.

We’ve all heard the phrase “it takes a village to raise a child.” For Alma, that is certainly true. I have always thought of my family as the people you can count on to pull you through the tough times, celebrate the good, root for you when you’re going for gold and inspire you to be your best self. Two and a half years ago, I thought all of that had to come from under our own roof. But I’ve learned since that, at least for us, the opposite is true. There are countless people—caregivers, therapists, teachers, volunteers, cheerleaders, supporters, deliverers of unexpected kindness, peers and more—in our family now, and for that I am so very grateful. Some come in and out of our home. Some we see at places like Sick Kids and Holland Bloorview. Others we just see on the street. Our family keeps on growing. And although it’s Alma that’s drawn everyone in, we’re all better for it.

This is #1000families post number 101. Do you have a family story of your own to contribute to the 1,000 Families Project? Or do you know a family that might want to do so? Learn more about how the series got started and how to get involved here. You can find all of the #1000families posts here.

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Melanie Cote

About

Melanie is a copywriter and Mom living in Toronto. When she learned her second child was born with Williams Syndrome, she made a commitment to advocate for her daughter and all individuals living with WS to ensure they have the chance to live their best lives. When she has the time, she blogs at mommydo.ca. Auctionforalma.com is an online silent auction supporting all families with Williams Syndrome in Canada. Melanie has a two-year goal of raising $40,000 to support an International gathering of WS researchers in Toronto (a first in Canada) as part of the 2017 National Williams Syndrome Convention.


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