A part of me was terrified. Was I about to see something now, 14 years after my son’s birth, which I hadn’t seen then?
I’d contacted the genetics clinic at the children’s hospital to ask for a copy of photos that were taken when he was four days old.
That day back in 1994 had been our own little 'D-day' – D for diagnosis. We’d brought Ben to the clinic to see if they could match his unusual facial features with a syndrome. An hour after Ben was born, the hospital pediatrician arrived, unswaddled him and looked at him disapprovingly: "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip,” he said. These were soft signs for mental retardation, he added, though he didn't know what he was dealing with.
Four days later, the geneticist told us she thought he had a greater than 50 per cent chance of having a genetic condition associated with “abnormal facies.” In addition to having blood drawn for chromosome testing, she wanted the hospital photographer to take pictures she could show her colleagues to help them identify other newborns “like Ben.”
We trudged through the huge hospital, melting in our heavy winter coats, passing Ben back and forth in his car seat. They’d given us a paper with a room number on it, but we couldn’t find the room. We got lost in a labyrinth of white corridors with stark fluorescent lights that made my eyes water. Step – pain. Step – pain. My seat throbbed with the raw tears of childbirth and my chest ached with unexpressed milk. I felt dizzy.
I saw an old rotary phone in an empty office and left a quaking voice mail for my therapist: "Hi Jan, it's Louise Kinross calling. Ben was born and they think he has a greater than 50 per cent chance of having a chromosome problem. D'Arcy and I are really struggling and I was hoping you might be able to help us."
We eventually made it to the studio and the photographer was as nice as could be expected.
But I hated the hospital for taking Ben’s photos – face on, side views and shots of his feet, which were apparently extra wrinkly. It felt intrusive, stigmatizing and unnecessary.
And 14 years later it bothered me that the hospital still held these photos and I didn’t.
So I called the genetics counselor and asked for copies.
When I finally had the CD in my hands, I was afraid to pop it in the computer and pull the images up on the screen.
When he was still a newborn, my boy had grown beautiful before my very eyes. His differences dissolved in my sight because I saw his face and being as a whole.
When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.
But in others' eyes the odd features superseded the boy. In their eyes he was different, an oddity, something "wrong."
Would I only see the clinical defects in the hospital’s photos?
I clicked on the first one (above) and my heart flooded with joy. What I saw was my beautiful, lovable boy, his four-day old eyes gazing right at the camera, his chubby arms, his round, full face. His right ear was cupped, yes – and I recognized the other anomalies – but it wasn’t scary. I saw the spirit and light in his eyes and it drilled a hole of tenderness in my heart, like it had so many times before.
Beauty, I believe, is something we choose to see.
Louise Kinross is editor of BLOOM, a magazine and blog on parenting kids with disabilities produced by Holland Bloorview Kids Rehabilitation Hospital in Toronto.