globe & mail

Two personal essays that I had published in the Globe and Mail’s Facts and Arguments page.  One from October 2005, and the other from February 2010.

He doesn’t just have his mother’s heart-shaped face

Our baby has Down syndrome, but my grief subsides as I hold his chubby hand.

I gave birth to my baby boy, and he was beautiful. He was the product of a second marriage for both of us, evidence that broken people can heal. He symbolized hope and joy. He was our love child.

His birth was everything I wanted. No interventions, no medications, a baby who slipped out naturally after a few pushes to meet his parents. Even in the late stages of labour, Mike and I were giddy with excitement in between each contraction. “The baby is coming,” Mike kept saying, and I would grin and nod and kiss my love before another wave of contractions pulled me back under.

We took him home after 10 hours, and he was all wee and jaundice-yellow. He was a quiet, soft, sleepy baby with a sweet mop of hair on top of his head. His round face was mine, and his eyebrows were blond. He was our little peanut, our button. His dad and I fell deeply in love with him.

Then the dark clouds started to settle in. At the end of his two-week checkup at the clinic, the doctor hesitated. I could tell he wanted to say something.

“Do you remember we talked about prenatal testing?”

Yes, I had. I had declined the testing. I knew I’d carry my baby to term no matter what.

I looked him straight in the eye, and took a deep breath. “Are you trying to tell me that our baby has Down syndrome?”

Retrospect is such an easy thing. I had not forgotten the day after Aaron’s birth, when I had gotten up after a long night of scrutinizing my boy and typed “Down syndrome” in the Google search engine. I had broached the subject with Mike, and he had scoffed at me for being paranoid. Then I had asked the public health nurse later that day if she thought Aaron had Down syndrome.

“Yes,” she had said gently, but then she had inspected the palms of his hands and his toes and concluded that he had a heart-shaped face like his mom, and eyes like his dad — that’s all. No other signs. So we filed away this scare in the back room of our heads and carried on. Whew. That was a relief.

But when the doctor mentioned the prenatal testing, I knew. I could hear my heart beating in my ears. I was holding onto my baby for dear life. “Oh,” I said. “Can I use my cell phone here?” I had to phone Mike, immediately.

I don’t recall our conversation. I am sure I sounded as if I was being strangled — and, in a way, I was. I do know that I sat in that examining room, nursing Aaron until Mike arrived. I don’t cry easily and there was a choked bundled of tears sitting just beyond my throat. I remembered to breathe.

Mike wanted to carry Aaron over to the lab in the hospital. He wouldn’t put him in his stroller, and he marched proudly through the hospital corridors cradling his son. It was as if he was saying, “I’m looking after my boy, no matter what!” They drew blood from Aaron’s little arm. Mike and I didn’t talk much — I felt sick as the needle went in and Aaron gave a cry of protest. We had to wait two long weeks for the result.

We were back at home. Aaron was napping in his car seat. The day was beautiful . . . mid-April, sun streaming out of the prairie sky. We sat on the balcony of our house, watching Aaron sleep, discussed how our doctor was wrong, how he was too inexperienced, how he had surely misdiagnosed.

There was a waft of music coming from the house across the alley. I strained to make out what song it was — it was coming from an open bedroom window. A young man lived there with his parents. He had a rare chromosome deficiency and is one of the few people with such a condition to be alive. He wasn’t expected to live beyond a year old, but there he was, 20 years old, blasting music out of his window.

The song finally became clear. It was a song from my memory of junior high school dances. Our neighbour was playing ABBA’s Take a Chance on Me.

The results came back after the two weeks. And yes, our baby has Down syndrome. The deep chasm of grief seemed endless when we found out that the baby we expected was not the baby we received.

But slowly the sun peeked out from behind those clouds, and I was able to get out of bed and go about my business. My baby, now two years old, did not allow me to stay stuck in the grief.

Instead he holds out his chubby little hand as we trundle down the sidewalk, both delighting in this warm fall day. My ABBA-playing neighbour is outside as we pass his house, and his face lights up as I greet him by name. Take a chance on us, indeed.

FACTS & ARGUMENTS ESSAY

There’s no such thing as the perfect child

SUE ROBINS
Published Tuesday, Feb. 16, 2010 4:27PM EST

A word to the wise to those of you dying to ask a parent of a child with Down syndrome, spina bifida or an open neural tube condition if they had prenatal testing: Don’t do it. Bite your tongue. Shut up. Swallow it.

Because what you are really asking us is, “Why didn’t you abort your child?” And, similarly, “Why is this child even alive right now?”

Believe me, justifying the very existence of our beloved children hurts. It will not gain you any brownie points on the playground or when I’m writing up my Christmas card list.

A while back, funny things were happening to my son, who happens to have Down syndrome, in his preschool class.

Aaron went to his neighbourhood preschool, not to a special-ed site. I believe that inclusion in his community is the best thing for him. As his mother, I make decisions based on what is best for him. Other families make other decisions for their children. I’m not into judging since I got thrown off my pedestal of judgment when Aaron was born six years ago. But inclusion is the choice for us.

The problem with inclusion isn’t with the children. It is with a select few parents, who grew up in the era of special-education schools and segregation. They are scared of my kid. And they pass that fear on to their children.

A kid came up to Aaron, and shouted in his face, “Why is Aaron different?” (For some reason, little kids like to shout when they talk.)

Fair enough. We are all different, kid. Some kids have glasses. Some kids have dark skin. Some kids have earrings. See what I mean? This is easy enough to explain to children.

But then another kid said, “My mom says I have to be nice to Aaron because he is different.”

Now, this is a comment coming from a parent, through a kid. We don’t want your faux sympathy, folks. We want our kid to be accepted as part of a diverse classroom. With different skin colours, genders and abilities. Is a kid going to shout in another kid’s face, “My mom says I have to be nice to Johnny because he’s black”? I hope not.

But intellectual disabilities or developmental delays or mental differences are the last stance for discrimination.

I sat down and wrote a nice letter to the preschool parents. The teacher, who has been nothing but welcoming of Aaron over the past two years, happily handed it out.

The letter explained Aaron and his family. How he is the same as other kids. How he likes construction trucks and swimming. How we are all different in this world. Read between the lines and what I’m saying is that there is no such thing as perfect.

After the day we handed out the letter, a mom stopped me in the playground on my way to my car. She chit-chatted a bit, then said she was surprised by the letter. I said I was hoping if I explained a bit about Aaron it would help foster understanding. I was thinking she was the one who told her kid she had to be nice to Aaron because he’s different.

Then she got to her point. She really wanted to know why I didn’t get prenatal testing.

I looked at her, puzzled. It seemed like a funny question to ask, and staggeringly inappropriate to boot, but I had been asked it before. It was in a mom-and-baby yoga class when Aaron was only four months old. The sting of it then had not lessened almost five years later.

I thought, rationally, “Here’s your chance to educate – I am an ambassador against ignorance.” I answered her cheerily, “Well, testing wouldn’t have changed my pregnancy outcome, so I turned the testing down.”

Out of the corner of my eye, I could see my car in sight. It was my escape hatch, but it was several metres away. I had to immediately extract myself from this conversation because I felt as if I was floating above my own body.

I said my (pleasant) goodbyes and motored to my vehicle as fast as I could in the winter snow. I slid into the driver’s seat, slumped over the steering wheel and burst into tears. I’m not much of a crier. But it was as if I had been slapped.

I continued crying all morning in parking lots in between running errands. I cried in the coffee shop drive-through and in the grocery store lineup. I had to bite my lip to prevent the tears from falling down my face in public.

Why do I have to justify my son’s very existence? Why isn’t it okay that he’s alive? What are you afraid of?

For those of us who have children whose extra chromosomes could have been detected prenatally, it is a long and lonely road. We get asked these questions. We get frantic calls from friends who are considering amniocentesis because their triple-screen prenatal test has come back elevated. The whole genetic testing thing is fraught for parents who have kids with disabilities.

One day it won’t just be “us.” With the clever mapping of genes, there may be tests for all the lovely imperfections of life that make us human. All in the quest for the blue-ribbon baby.

What I should have asked the mom in the playground was, “What if your daughter was in a car accident tomorrow and had a brain injury? Would you love her any less?”

When you can answer those questions, I will answer your questions.

Sue Robins lives in Edmonton.


(originally published in the Globe and Mail)

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