From the archives: the original essay Ann Auld wrote for The Globe on July 29, 1997, about her daughter with Down syndrome. To read what she wrote 20 years later, click here.
'Do you want a boy or a girl?" people asked me last year. I'd generally respond, "As long as the baby is healthy, the sex of the child is unimportant to me." Now when I look at our daughter Zola's 10-centimetre abdominal scar, I think about the fact that she had major surgery at four days of age to bypass a blockage in her intestines, and that she has Down's syndrome!
I dwell at length on the what-ifs? If I had had amniocentesis at 16 weeks, would I have continued the pregnancy knowing what was to come? If we lived in a remote part of the country, would she have survived beyond her birth? If her heart wasn't so strong, would Zola thrive as she does now?
My baby is now a happy, contented, healthy little being of seven months, and sometimes I wonder about the worth of all the stress and anxiety I've felt. Worth it? Who am I kidding? This baby has been a keeper from Day One. We have never once thought that we would rather not have Zola, despite spotting, a bleed, placenta previa and intensified Braxton-Hicks contractions.
Throughout the long, hot 11 weeks before her arrival, I put my feet up and tried not to worry. I remained cautiously optimistic that everything would be fine. And in a strange way everything is as I envisioned. My baby is perfect and I see her diagnosis of Down's syndrome as merely one facet of her and not the absolute label of "retarded" I once believed a baby with developmental delays carried.
Zola has profoundly changed my notion of intelligence and its importance in our society. What I have learned is that intelligence is as variable and unique as our baby's extra chromosome. I'm elated that we have Zola in our lives to bring continual joy, laughter and compassion. She reminds us of what is worthwhile in this wide world. There is a little sadness too, but that is okay. The sadness is for the losses I feel as an aging mother never able to experience another pregnancy, labour and delivery so beautiful and personal. My loss is reflected in a baby requiring my constant care, and I wonder if this is my particular fate, or a random statistical throw of the dice.
With the joys, there is also fear. I fear I may never be able to release Zola out into the world without concern about her being exploited. While she already possesses my husband's brow, my almond eyes and rosy complexion, what else will she develop as her own? Will the ability to judge appropriately be one of her characteristics?
My husband and I pore over minute details about Zola's actual and potential growth. We watch her eating patterns to assess her ability to speak capably in the years to come. There are monetary concerns too, a discretionary trust and representation agreements that must be established in case we die before Zola. Medical appointments are frequent and necessary to ensure proper monitoring and maintenance. We experience a twinge beyond mere parental concern when Zola has yet another cold. Her Eustachian tubes, already filled with fluid, are cause for watchfulness: She could experience significant hearing loss, and the specialists are loath to intervene because of her extremely tiny ear canals. And so it goes, the gathering and decision-making on a daily basis. We become overloaded and lose perspective, but our child is forgiving through all of this, possessing the gift of sleeping soundly through the night, permitting us to ponder what the next day's lesson will be.
I look at the abdominal scar, so frightening to me when I think of the certain death she would have suffered in another time, country or circumstance. I feel grateful all over again for what I have. I would not trade any of the last nine months, except the tremendous stress of being a working mother of a baby with needs to be considered as long as I am alive. Perhaps we need to reconsider our casualness about having sex in order to "make" a baby. Most times we blithely go ahead without considering that things do happen and that our drive to procreate needs to be based in reality. The incision line is Zola's mark on our hearts and souls -- a reminder of all that is possible.
Ann Auld lives in Victoria, B.C.