The Quiet Before the Storm as My Son With Down Syndrome Grows Up


A typical week for me may seem like a hurricane to others. It includes 24-hour care of my three kids under 5-years-old, at least three private therapy sessions for my son with Down syndrome, typically one medical appointment, swim lessons, preparing three square meals a day, and keeping house –whatever that entails in 2017!
I do this with no family support system (the closest lives 500 miles away), and my husband works 80+ hours a week as an Emergency Medicine Resident — although he’s amazingly helpful even with his schedule.

Looking at our life, one would not imagine these days are the sunniest. But in many ways, this is the quiet before the storm!

My twin boys are in their third and final year of preschool, I realize this is the last year our young family will enjoy the safety of naivety. I have one more year to bask in the glory of unasked questions, the freedom of play and power of a small circle of family and friends who accept us for who we are: perfectly imperfect!

 

Troy (back left) enjoying life with his typical twin, Hunter.

That’s one more year of easy-peasy IEP meetings, no homework or standardized tests. One more year of kids playing with Troy on the playground without asking why he’s so little or can’t talk like them. One more birthday where the boys want a party with the same friends, same theme and same gifts. One more year where my boys think of themselves as they are: twins.

 

Next year, my first born sons will start “real school,” and boy has it changed a lot in the generation since I attended kindergarten. You’ve likely heard the news: kindergarten is the new first, or is it 2nd grade? As we peacefully go through life in the safety of our home, I often worry if Troy will be ready.

Of course he will, whether I’m ready or not. I also worry his typical twin, Hunter, will struggle with the confirmed knowledge that Troy is indeed different. The words ,“Down syndrome,” come up a lot in our house, and even though Hunter uses these words freely in conversation, he has yet to assign them to his twin brother.

As a parent of a child with a disability, I’ve practiced in my mind how I might explain this revelation of difference to my typical children. Will I choke when the time comes to pass on this sage advice?


Troy’s sister, Cora.

My 2-year-old typical daughter, Cora, is the perfect playmate and foe to Troy. Theirs is a love-hate relationship. But I’ve noticed lately she’s been innately mastering milestones that Troy is just starting to find easy: jumping, verbalizing complete sentences, dressing independently. How will I navigate the rough seas of a younger child surpassing an older one? Still, these intimate family dynamics will likely not be what causes the biggest waves a year from now.

Instead, it may be the storm outside our doors.

It may be the teachers or school administrators who deny equitable education to my son with Down syndrome.

The older students who ask Hunter why his twin can’t do the same things he can.

The sports coaches who can’t find a spot for Troy to play on a peewee team.

The parents who remark about how “cute” Troy is, while quietly worrying about the impact of his presence in their typical child’s class.

They say meteorology is the only profession where you can be wrong 50 percent of the time. So, here’s hoping my predictions for the storm to come are unfounded!

Even if my predictions do come true, I realize it will be OK. We’ve been through a lot as a family, even before our kids were born. Even through rough times, we’ve held tight to each other knowing we’d see brighter days.

And what I’ve learned and hope to instill in my children is: the sunniest path isn’t always the prettiest; sometimes the storm helps you put life into perspective.

Sure, if I we could have it all, I’d wish my kids easy, fun-filled lives, full of lots of interesting friends, successful careers, heaps of money and perfect marriages. But if we can’t have it all — If I can only choose a few — easy wouldn’t make it on my wish list.

Instead, I’d rather my children live an authentic life, where they feel compelled to stand up for what is right and good in this one life we’re given. This is the rainbow after the storm in a life connected to Down syndrome. We are the lucky few!

Follow Troy’s journey of inclusion at www.inclusionevolution.com.

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