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

Before we became caregivers, my husband, Cedar, and I had sun-kissed skin and lazed around on a Saturday in our pajamas until noon ( if we even wore pajamas). 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 9-year-old was born with a genetic deletion so rare it has no name, has severe autism spectrum disorder and survives through a feeding tube.

Now one early Saturday morning, Cedar and I are standing in the kitchen, and I am wrapped in his arms. I read that a 20-second hug can lower blood pressure , and we need all the lowering we can get. The high-pitched beep of a feeding tube jolts us apart. I glance over to the family room. Our child is in her adaptive swing, squealing.

“Be right back,” Cedar says as he jogs toward her. He won’t be right back. We both know this.

When we were first together, Cedar and I made challah French toast for breakfast and sauntered over to the Kingfield farmer’s market. We knew how to have long conversations about our pasts, our futures. We always knew how to make each other laugh.

We still laugh, although the things that we laugh about now are heavier. Now we trade short updates throughout the day and do shifts of diapers and tube feedings, and clean up vomit. Sometimes we barely interact because our daughter’s autism escalates when the attention is not focused on her. The weekend is the hardest part of the week.

The room smells like waffles. Cedar is now crouched next to the swing — it sits in the middle of our family room. This is not the interior design I’d envisioned, but it calms her.

Cedar swiftly