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 turns off the feeding pump as he has done thousands of times before. My husband is a musician. He cut his teeth on Charlie Parker, toured with the Glenn Miller Orchestra and shared a stage with Delfeayo Marsalis. He wasn’t a pop fan. But now he sings along with the song “Just Dance” on our daughter’s iPad. 

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. 

I already miss the feeling of being in my husband’s arms. With our bodies tucked together next to the stack of syringes, my breathing slowed, my heart rate settled. I love that as I padded into the kitchen in sweats, he asked, “How did you sleep, Emma?” and my name sounded like home. 

I replied, “The usual.” 

Cedar said, “Oh, that bad?” with his cool blue eyes smiling up at me. Then he handed me a mug with my preferred ratio of milk to coffee, the shade of a muddy river.

Sometimes describing my slumber includes a sentence like, “And then the man running at my car tried to kill me.” My dreams can be so extreme that recalling them is almost, but not quite, funny. You don’t have to be a therapist to see that I’m grappling with a loss of control, although I happen to be one.

Back when Cedar and I were young and well-rested, we had clear skin and clear expectations of what lay ahead for us. Someday we would have a baby ― probably two. We would keep our life in the city; the children would fold in. How much impact could a few kids have?

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?

Cedar and I did not know how to work a nebulizer, an oxygen compressor, place a G-tube, soothe a volatile outburst — especially using Beyoncé references (another one of my daughter’s heroes).

We also did not know that we would plunge into pop music. Our daughter is enthralled by nearly every diva, pop song and high note. How could we predict that because of our daughter’s ASD-fueled passion, we would learn the lyrics of most Top 40 hits? 

At first, my husband was cautious, dabbling in Bieber. Over the years, he began to initiate his own games of Name That Tune focused on megastars. One July morning, he knew the words to Same Old Loveby Selena Gomez. But when Cedar blasted Taylor Swift while pushing our daughter’s wheelchair down the street of our tree-lined neighbourhood, unfazed, I knew he was hooked.

In this way, I did not change; I was never above (or below) pop music. I dance to anything, pretty much anywhere. When I was younger, I found love songs instantly relatable, and now I relate to the ones about heartbreak and grief more than ever.

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.

We did not know that we would meet this exhaustion, that we would wrestle with the powerlessness of our daughter’s irremediable challenges. On gutting days and nights, we did not know if our child would survive. This would lead both of us to question everything — including if we could even go on.

We always went on, together. Mostly. It hasn’t been a perfect marriage, just like it hasn’t been a perfect life. 

As I see my husband across the room and miss him, I realisejust how much our relationship has changed since we first were together 14 years ago. Yet his warm devotion to our family is deeper than the limerence that once lit me up.

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.

On the days we are homebound, we blast throwback Lady Gaga, like the song Paparazzi. 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 loving you is cherry pie. Her gleaming eyes meet mine, and I see her smile crack open. I scan the room for my husband because I want him to hear it, too. Our life, our song, our daughter.

Loving these people isn’t the type of pie that I expected; cherry feels too cheery and predictable. Cedar isn’t there within sight, which isn’t surprising. My family, my marriage — it is not what I imagined. Which links me to countless other people who also face an unexpected path. I sit with people in pain for a living; our story is unique, and not unique at all.

Later, as I snuggle with my girl at bedtime, when everything slows down and her body becomes heavy, she asks, “What is cherry pie?” My stomach turns. My child doesn’t know what cherry pie is because she doesn’t eat. And that’s where grief hides, in a mundane question.

Again, Cedar wasn’t there, but still, I feel him with me. Surrounded by syringes for our one beautiful daughter, as Gaga sings, we’re far from the shallow now. We are definitely, permanently off the deep end. Although it is equally true that somehow — through love and the steady cadence of pop music, we made it to this moment. And now, we keep moving, keep singing. What else is there to do together? 

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.

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