When imagination fails

You have an eight-year-old daughter with severe disabilities. You and your partner have just brought her to the operating room for major surgery. But instead of setting up camp in the waiting room, the two of you leave the building:

"Laura and I crossed half the street to the grass-fuzzy median in front of the hospital. We lay next to each other, the lanes on either side of us quiet, trickling riverbeds."

This is a scene from a short story called Poppyseed in A Guide to Being Born by Ramona Ausebel.

I'd read Ausebel's first novel No One Is Here Except All of Us—a fantastical account of a village of Jewish families in Romania who reinvent their history to save themselves from the Holocaust.

I loved that book, and the way Ausebel creates such strikingly vivid and unconventional ways of seeing and feeling things. But by the end, some of the storylines had become a bit too over the top for me. 

I really wanted to like A Guide to Being Born, and I was captivated by her first story, about a group of grandmothers who find themselves on a ship at sea, metaphorically awaiting death.

But many parts of Poppyseed—which revolves around the care of Poppy, 8—didn't strike me as authentic and real. The idea that the parents of a completely dependent child who can't speak would leave a hospital where they've just delivered her to surgery is so far from my experience of parenting, or that of other parents of severely-disabled children I know, that it felt like an annoying sliver lodged in my foot.

As my vulnerable child is being put under in the OR, the last thing I'd consider doing is asking my husband to come outside and lie down on the grass.

I'd be sitting in the waiting room, with a boulder in my chest, trying to slow my breathing. I'd be forcing my abdomen to rise on the inhale and on the exhale sending positive thoughts to my son and his medical team. I'd be hyped up, vigilant, on the off-chance that there's a problem and the doctor needs to speak with me.

I'm not sure why I was so bothered by the parents' divergence from my own experience in the story Poppyseed.

I had no idea when I began this new collection of short stories that one would be about parenting a child who doesn't speak or think like other children, one who spends her days on her back, looking at the ceiling or the sky.

Parenting a child with severe disabilities isn't a common theme in fiction and is poorly understood in the mainstream. Our culture spares no expense in attempting to prevent the birth of such children—who are viewed as inhuman and tragic—and little on trying to understand and support the experience for parents who find themselves navigating this strange new world.

So perhaps Ausebel's depiction of the interior lives of such parents took on a sacred urgency for me.

Can writers do justice to something they've never experienced? Is it possible to "imagine" the complex feelings that swirl around parents of a child with severe intellectual and physical disabilities? No, I don't believe it is. Some things need to be lived.

Parents of children with severe disabilities are full of ambiguity—they see-saw between joy and grief, contentment and wishing things were different, exhileration with their child's presence and angst with her inability to meet cultural expectations. Their love is messy and intense. But as with any parent-child relationship, the child is the parent's world.

So when the father in Poppyseed refers to his daughter in second reference as "our mute and immobile kin" and "our stunted eight-year-old," it doesn't ring true.

Not because in a dark moment a father might not use this language, but because one would expect his everyday narration to be marked with affection.

Ausebel's story then wades into an ethical minefield when the parents, seemingly on the advice of one doctor (do parents of children with severe disabilities EVER do anything on the advice of one person, medical or otherwise?), choose aggressive medical treatments to keep their daughter forever small, in keeping with the way they view her mind.

Many of you are familiar with this intervention—dubbed The Ashley Treatment—after a nine-year-old girl with severe developmental disabilities at Seattle Children's Hospital was given high estrogen doses to hasten closure of her bones' growth plates and had her uterus and breast buds surgically removed.

Last year The Guardian reported on the first boy to undergo an equivalent procedure.

I won't describe the parents' bizarre (some would say savage) reaction to the fictional Poppy's surgery (which involves leaving the hospital again, while their daughter is being sewn up).

I was so disappointed when I thought of all of the people who will read this story—most having no connection to someone with severe developmental disabilities.

In an interview with The New Yorker about the book's theme of parenthood Ausebel says: "...it kept feeling like the only way to represent just how strange the (very real) experience must be was to push the stories into the fantastical. Those exaggerated elements added more of what was already true, allowing me to see the experience better, like magnification."

I don't think Poppyseed has conveyed the depth of love (however challenging) that exists between a parent and a child who will never achieve conventional milestones, a child who will remain largely invisible and unknown to the outside world.

You'll have to let me know your thoughts.