Nayef's News - Kathryn L Nelson

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Nayef's back on the corner, singing with his headphones on. A well-meaning social worker once advised me that it was dangerous for him to wave and greet passing traffic - that someone might take offense, that he's vulnerable, and so on. I've thought it over, and I won't say I never worry about him being exposed to everything the world can dish out. But on the other side of the balance we need to place all of the people who stop him at the grocery store, the train station, the restaurants of the neighborhood, and thank him for making their day brighter. He is pure joy when he performs, and it's a gift he shares with the world - at least our corner of it.

Now if we could just get him a paying job with that gift …

Nayef Poster

All mothers have their stories of the greatest love, and I will not pretend that mine is very different from the rest, but I will say that no experience in my first thirty-three years prepared me for the way I loved that baby boy.

I laughed out loud when the midwife handed me the soft little body, amazed to have created something so tangible and permanent at last. I was triumphant. I wouldn't have been surprised to see fireworks and a marching band; even the quietly efficient manner of the hospital staff did nothing to dampen my enthusiasm. I had no experience to tell me whether it was odd that they rushed him off to the nursery. It was late, I was tired, and I slept.

Waking to a sunlit room with no baby in it lit me up in several shades of adrenaline. The nurse assured me she would check with the nursery. "Yes, he would be brought to me in a few minutes…no, no problem…." Another half an hour and a more agitated phone call finally produced a midwife with bassinet in tow, but instead of presenting me with my baby, she parked him by the door and sat down beside me, reaching out to touch my hand. I knew that shouldn't be the routine.

"We suspect your baby may have Down syndrome," she said softly. I waited for the bad news and while she rambled on about signs and tests, I held my breath. Finally I had to interrupt.

"Is he all right?" I asked. She seemed baffled by the question and hesitated. "I mean, is he sick or in danger - is anything wrong?" I demanded, gaining a head of steam.

"No," she said quickly, standing up to lift him into my arms, "no, he's fine. All of his vital signs are good."

My God, what a fright on a short night's sleep. I thought something was wrong with him, the way she looked so serious. I guess she didn't know how much I loved that baby, how I had been reading to him and explaining life to him for all those months. I never pictured a boy or girl, tall, short, thin, fat, smart, silly or otherwise; I only pictured curls. Down syndrome was admittedly a little more surprising than the fact that he had straight thin hair, but I had experience enough by that time in my life to know that Down syndrome was as normal for this baby as being a musical prodigy was normal for another. I did most selfishly want him to be healthy. Healthy he was.

That afternoon I had a visit from the pediatrician. I so wish she had been the one to bring Nayef to us; I'm sure she would have gotten it right. She came in smiling, announcing that she specialized in Down syndrome and asked to meet my son. She exclaimed over him, apparently as impressed as I was with what we had accomplished. Then she spread out before us the first stages of our journey together - chromosome testing, additional health screening for a few potential risks - and left us with the feeling that we had embarked upon an adventure and that we had every right to celebrate as new parents do.

Dr. Margaret Horrobin was a gift that just kept on giving. We continued to see her every year until she retired, and with each visit I marveled at the way she managed to make us feel that we were the most gifted and thoroughly special family she knew. The fact that all of her patients were treated the same way didn't dampen my enthusiasm.

I've never been one to read the manual until I get really stuck, so I glanced at the only book on Down syndrome that was handy and decided that it didn't tell me much about my baby. Luckily for Nayef I didn't know he wouldn't be able to read or write, that he would be socially isolated or that he would live a short and probably unhealthy life. Had I known that, he might have never learned to read and write, never had a social circle that far exceeds my own, never learned to make those 3-point shots that are his trademark on the basketball court.

As I ride the city bus with him to train him in on his route downtown to a job at the Hyatt Regency sports bar, I look back over the last 22 years and note the stepping stones that brought us to this proud moment. So many people have shared the work and the joy and the anguish that I could not begin to name them, but there are a few critical components that have made our life a song:

  • Close-knit family and extraordinary friends who only sympathized when I wanted sympathy and the rest of the time treated us like ordinary people
  • Medical professionals and early childhood specialists who were enthusiastic and practical
  • The Down Syndrome Association of Minnesota, born just after Nayef, which provided the forum for sharing information and sounding off in a safe place
  • K-6 education in a building where full inclusion and classroom supports was the model, which enabled Nayef to develop such great self-esteem and confidence that he was undaunted by subsequent school experiences
  • Nayef's innate ability to bond with people.

We all prefer to talk about how successful/intelligent/loving/beautiful our children are, putting behind us the moments of monumental failure and the fears that kept us awake so many nights. When I compare our family life with that of my peers, I find it difficult at times to distinguish between those difficulties associated with Down syndrome and the ones inherent in raising children.

As Nayef finished his "clean shave" this morning, he smiled at himself in the mirror and stated emphatically, "They're going to love me!" I suspect he's right, but I know that even if they don't, he's going to keep on loving himself. What else could a mom ask for?

Published in Down Syndrome Association of Minnesota newsletter, November 2005. Reprinted in the February 2006 issue of National Down Syndrome Congress newsletter.

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©2007-2010 Kathryn L Nelson, Pemberley Manor ©2006 Kathryn L Nelson, ISBN:E9781402212857

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