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Down syndrome and a mother’s imperfect love

michelle thompson The Globe and Mail

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My younger son, Nick, has Down syndrome. We have a different relationship than the one I have with his brother, Jake.

Jake likes to call the shots about "mom and Jake" days: train rides, aquarium visits and trips to the corner store.

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Nick's time with Mom is scheduled for him, and well in advance. We keep a calendar filled with medical appointments, physiotherapy sessions and consultations about his development. I am his case manager, his advocate and, on occasion, when we are between appointments, his mother.

While adept at juggling our clinical calendar, I seem to have become useless at managing the other aspects of our lives. Cold outside? I forgot Nick's hat. Off to the ophthalmologist? Nick's in his pyjamas – in our hurry to leave the house, I've forgotten to get him dressed. I have found myself with a diaper bag containing no diapers.

Thank goodness he is only one year old; most onlookers forgive these omissions. Out of the public eye, there is no judgment but my own. When I tuck a receiving blanket under Nick to cover some spit up on the crib sheet, I remember how I used to change Jake's bed immediately after each dribble or drop.

I question myself for seeming unable to provide basic care for my son. I am busy, true enough. Our household includes Nick, four-year-old Jake, two lazy dogs that don't relieve themselves without a reminder, my own college workload and a never-ending laundry pile. But am I so much busier with two children than I was with one?

Is it possible that my care standards have slipped because Nick has Down syndrome and I don't think it matters if he gets dressed each day? I have an ongoing internal struggle: Do I love Nick as much as Jake, or do I just care for him? I am inwardly appalled by the notion, but can't help believing it must be true.

Down syndrome is still somewhat of a mystery to me. I am learning as we go along. I chose not to confirm Nick's diagnosis prior to birth, despite prenatal testing showing statistical odds of one in two.

Denial was my preferred method of coping, and I had a naively optimistic view that we would come out on the negative side of 50 per cent. To add to my denial, a diagnosis was not made until two weeks after Nick was born. He had arrived on Christmas Day, and the holiday upheaval resulted in forgotten blood work.

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"No news is good news," I reassured myself, unaware that the test hadn't been completed yet.

Nick remained in hospital the first couple of weeks. He was healthy, but lacked a sucking reflex and was unable to feed by breast or bottle. His first home was the pediatric unit, where he shared the crib-lined nursery with pre-term babies also learning to feed. It was full upon our arrival, but before long the other four babies went home, and we were the only pair remaining.

Feeding sessions by bottle and nasal tube were scheduled every three hours, which gave me a focus. I chatted with student nurses, a social worker and therapy staff. I was sure all the discussion regarding Down syndrome would be for naught, and we'd soon head home to a normal life.

A quick but solemn visit to Nick's hospital room from the attending physician shattered my wall of denial. He delivered the news, and asked if I had any questions. Numb from his announcement, I shook my head "no."

I finally understood what it was to have a heavy heart. I had been rocking my son when the doctor appeared; when he left, I held him tighter. I had no motherly wisdom. I could only apologize to my baby boy, and cry about what would surely be a limited life, with aspirations no greater than being a greeter at Wal-Mart.

The only thing that made it okay was holding him, as if I could somehow conjure up love through physical touch.

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One year later, life has been made even busier by the arrival of a sister for Jake and Nick. Alexa, at one month old, has yet to get dressed. She's in the same sleepers for a day or two at a time. I rotate her bassinet mattress to the clean end before running to get a new sheet. When she cries in the car, I don't pull over to pop the soother back in her mouth.

But when she looks me right in the eye, I know that I love her. And when Nick gives me his sleepy "good morning" smile from his crib, I know that I love him. Jake tells me I am his "best mommy" and I let him know he's my "best Jake."

I realize now that my daily choices have nothing to do with Down syndrome, and everything to do with how much sleep I've had and how much I've tried to overschedule our day. My mom intuition tells me that time spent cuddling is more important than folding laundry.

I love all of my children. It's easy to love Nick, a laid-back baby with crazy cowlicks and an infectious smile. But I don't love Down syndrome. I wish it would all go away: the diagnosis, the specialists and the fact that at 14 months he doesn't crawl, stand or have any teeth.

In public, it is easier to function as Nick's case manager than to share my fears and disappointments as his mother. But at home, when the world is not judging, I smile when Nick chews his hand and pulls his ear to show me he's tired. I hold him tight, and tell him I love him more than anyone else ever will.

And yet again my eyes fill with tears, as I fear I may be right.

Sheryl Gray lives in Vancouver.

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