At the mall, a young Indian boy with a handsome face sits in a wheelchair while his parents take turns entering a virtual fit scanner. The cylinder looks like an oversize tin can sheared of its label. It takes one’s microscopic measurements and then spits out “data” suggesting which stores and styles one should shop, based on body type. This gimmick takes the spontaneity and surprise out of browsing, and, in my view, also threatens to undermine whatever is left of one’s positive body image.

But never mind the superfluousness of the moment. Its essence is this: I long to approach the bemused parents, to tug at the thick braid lying against the mother’s back, and to encourage them to bring their son into the scanner, too, so that the machine can also take his measurements.

“Let’s find out if this thing is user-friendly for people who have a disability,” I say in my head. “Otherwise it’s not worth the metal it’s built with.”

I want inclusion for the boy, and for myself, too. But I don’t interfere, for I have, no longer, a physical child of my own to present as proof that I, too, am a special needs mother. I am muzzled, once again.

Countless examples like this repeat. Only the settings change. Two years after the sudden and unexpected death of our oldest daughter, Michaela, in her sleep, at age five, I took my surviving younger daughters, Ayelet and Maayan, to Sesame Street Live at the storied Fox Theater in downtown Detroit. Inexplicably, families with severely disabled children were seated all around me, like they had been planted there to taunt me.

At intermission the mothers grouped together to talk about seizure meds and therapy, and I became envious to the point of distraction. Maayan soaked herself with a glass of water; I did not notice, nor did I have another set of clothes for her. She could have frozen. She left the suite, was running in the corridor, she could have been lost to me, or stolen. But I couldn’t move a muscle.

Looping confusion immobilized me: should I say hello to my former peers, or ignore them? Commiserate with them as I once would have, or avert my eyes? Stay in place or flee from the building? Finally, my head pounded with the onset of migraine. I chose to leave them alone, to see them as families out on a Sunday afternoon, the way they surely wanted to be seen, and the way I wanted them to be seen. This had been our mission when Michaela was alive.

This is where we live. Teetering between who we were and who we do not wish to be. Passersby do not know that when they see us they are misidentifying us as a family of four, that our house has a bedroom in which no one sleeps.

We moved to Detroit to be near my parents, after Michaela, who had cerebral palsy, was born. Must we stay here now? We built a spacious ranch house to accommodate her mobility needs. Must we live here now? Shall I print a T-shirt emblazoned with the words, “Bereaved parent,” for there is no single word — orphan, widow — to describe our state? To wear through the airport or the zoo? I have thought about it.

I have found it easy to pretend that Michaela is still alive. When people who do not know what has happened ask how many children I have, I answer, three, for to say two, simply to avoid follow-up questions such as “how old,” and  “where do they go to school,” negates her existence.

So I tell people Michaela is almost nine, and that she attends the school she would have attended. Then I switch the subject. I have lied on numerous occasions, both with people I have never seen again, and with people whom I continue to see.

Is it still a lie if it presents the way life ought to be?

My husband Adam avoids conversation altogether. He knows most people prefer to talk about themselves. When asked anything regarding our kids, he turns the question back on the interlocutors, and, believe me, they’re off to the races.

Lies. Truth. No matter. They both isolate us. What 36 year-old buries her oldest, two weeks after giving birth to her youngest?

Oh, that’s right. Me.

What it did, really, is tilt the world on its axis, explode grids from the city streets, erase whatever dominion we thought we exerted. In my eye, the sidewalks crumbled into gardens, the concrete into grass.

There are those who explain the fracture as a reminder that our finite human lifespan is but the way-station between what was and what will be. I counter, why make it so achingly precious, the bond between a mother and her most wanted child? No theology comforts me.

In her absence, I have tried to find ways to keep Michaela close. I have even given myself a title: parent coach. I empower other parents to achieve not only their child’s potential, but their potential as a family. I volunteer for organizations that assist children and adults with special needs. I attend orientations on foster care and put our name in the hat to host a foreign exchange student who has physical disabilities. I open our home to anyone who needs me.

And yet, even as I stay connected, there is a finite limit to my knowledge. When the children I visit are adolescents, I do not have answers; I can only make an educated guess. Michaela did not menstruate. She hadn’t yet lost a tooth.

Adam speaks of our grief as a double loss, for we are bereft not only of the center of the wheel but of all the spokes that emanated from its core. Doctors whose phone numbers were once on speed dial now treat other children. The lab rats work on someone else’s behalf. The therapists who were central to our daily lives have faded beyond the periphery. They stretch and strengthen other children’s muscles now.

We never found out if the Indian boy at the mall went into the scanner.  After a few moments more of looking at his neatly combed hair, the shining whites of his eyes, and the gleaming curves of his black wheelchair, we had to walk away.

—

Gabriella Burman is the communications director for www.bigtentjobs.com and an award-winning journalist who resides in Huntington Woods, MI with her family. Her non-fiction appears or is forthcoming in Skive Magazine, Prime Number Magazine, the Bear River Review, and Joy, Interrupted: An Anthology of Motherhood and Loss.