Our Daughter Was Born With A Rare Genetic Difference. Here’s The Secret To Keeping Our Marriage Strong As Caregivers.

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Our Daughter Was Born With A Rare Genetic Difference. Here’s The Secret To Keeping Our Marriage Strong As Caregivers.
MarriageAutism Spectrum DisorderRare Disease
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Emma Nadler is a psychotherapist and the author of “The Unlikely Village of Eden: A Memoir.” She is working on a book of essays. Follow her at @emmanadlerwrites.

Before we became caregivers, my husband, Cedar, and I had sun-kissed skin and lazed around on a Saturday in our pajamas until noon . I remember waking up next to him with the whole weekend in front of us like a vacation. Back then, we didn’t have a dishwasher or a television. Or children. And we didn’t yet have a daughter who requires round-the-clock care.

Our daughter looks at Cedar and bobs her head. He grins and says, “High-five for Lady Gaga.” I’m not sure why this warrants a high-five, but if something isn’t terrible, we are likely cheering for it. Of course, we had no idea. How could we? How could anyone? Most of us plan for the future; it is rarely how life turns out. But the real questions are: Can we love each other through it? Can we love who we become?

If you’ve ever watched a beloved suffer from something that you could not control, that has no cure or end in sight — and you’ve tried almost everything — you know what I mean. As I grapple to accept the daily grind as a caregiver, my husband — who has generally been better at accepting what life brings, including pop music — accepts that about me. Which means we are freer. Even though we aren’t free to leave the house unless we find respite care..” I turn on the feeding tube and screw it into a port in my daughter’s stomach. Although it is routine, it’s still heart-wrenching. But when she turns to me, in her honeyed voice that hits every note, she belts out the line.

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