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When You and Your Husband Are on Separate Special Needs Journeys

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October is Down Syndrome Awareness Month, and all across the country there are large organized walks to raise awareness and funds. In my home state of Massachusetts, the largest walk draws thousands around a local lake, and on the best years, the weather is warm and sunny, against a backdrop of New England autumn leaves — just like it was yesterday.

I know this because I’ve seen the photos. Dozens of friends have posted photos of their families to celebrate the day and capture the fun they’ve had connecting with the community. It can be especially encouraging to new families still unsure of where they’ve landed and how they move forward.

The photos, ironically, make me sad — because although this is a family event, I didn’t marry that guy. I didn’t marry the joiner, the guy who loves a good conversation, the man who has rallied around the family’s challenges in a public way, who can walk among the families in our Down syndrome community and be recognized. I married the guy who has kept putting one foot in front of the other, steady as he goes, not stepping off the course of traditional parenting. I’ve participated in hundreds of Down syndrome events, compared to his half-dozen. And those he attended for my sake.

This has made the journey with Down syndrome a bit lonelier for me. Although I’m wise enough to know I have no idea what’s going on behind those beautiful family photos at events like the Buddy Walk, my heart wishes for the entire family that’s rallied together, the one that can encourage new moms and new dads to say, “It’s all right, you got this.”

When my son, Davis, was born with Down syndrome, one of the most frightening numbers I heard — perhaps whispered to me — was the high number of divorce rates for families who have children with special needs. Among all of my other worries at the time — Davis was very sick — was that this thing called Down syndrome could ruin my marriage, that it caused divorces.

Now I realize that Down syndrome does not cause divorce. Marriage is in the best of circumstances a delicate balance. It’s not two individuals joined on a single journey. It’s two individuals who can walk side by side on their unique journeys. My journey with Down syndrome has been social — I need my community. My husband’s journey with Down syndrome is something different. You’d have to ask him about it to understand what it means to him.

So on we go. I’ll try to remember as I look at these family photos that every family is different. For as many families who attended the Buddy Walk yesterday, there are others not there — for whom Down syndrome is not a single rally cry, but different marches within the family in response to a single drum beat. That’s not a bad thing; it’s just hard to photograph.

Lead photo source: Thinkstock Images

Originally published: October 14, 2015
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