There’s a moment I think that every new mum has imagined at some stage or another during her pregnancy. It’s pretty much a staple in every TV or film where a dramatic giving birth at the side of the road/in the back of a cab/in a gas station restroom has recently occurred, where the freshly minted mum turns to the physician(who always seems to arrive just after the kid is born)and asks of her child, “Is he ok?” To which the physician replies, “He’s perfect.” and all is suddenly right with the world.
I dreamt of that moment. For 9 months, I played it out over and over in my head. Would it be a female doctor who would deliver these precious words to me? Would it be in a room filled with the first light of dawn or under the flicker of a light bulb in the dead of night? You see, I fantasised about this moment because it was an unspoken fear of mine to give birth to a child with a disability. My only sibling is profoundly deaf and I been witness to his lifelong struggle to live in a world that misunderstood and often didn’t give a damn about him. Whenever the thought that something might go wrong flashed through my conscious mind, I suppressed it as quickly as it had come into being.
But on the night my daughter came into this world, I didn’t get that “She’s perfect” moment. The response I got, I couldn’t have imagined at any point during my neurotic I carried my baby to term. No reassuring for me, but the horrific statement of “We suspect a genetic abnormality.” and then a pause before the soul numbing words “down syndrome” were mentioned.
Time is a strange entity during childbirth. It speeds up at some points, slows to an agonisingly dull crawl where minutes become hours but at no time during my labour did time freeze as it did with that diagnosis. Suddenly in a split second, I was living through the whole life of my daughter-I saw her as a slow moving,lumbering, heavy child, struggling to catch up with the other kids in the playground;I saw her being teased mercilessly for the way she looked; I saw her alone, friendless with no husband or partner in life; I saw early onset Alzheimer’s, I saw no future and it broke my heart.
But time heals all wounds and knowledge is power. What I knew about Down Syndrome before would have fitted on a postage stamp. Mini is all kinds of awesome. Every day she teaches me more and more. She is so great I often fantasise about adding another baby to the brood. But then, I’m catapulted back to that moment in the early hours of St. Patrick’s Day 2011 and the half buried words “genetic abnormality” swim to surface of my mind. What if the next baby has Down Syndrome too? The odds are unlikely but then the odds for Mini to have it were fairly substantial and that’s what happened. Or, what if, God forbid, it’s something worse than Down Syndrome. What if our next child will be so disabled that they never walk or talk?
I know now, 17 months later, that Down Syndrome is not a life sentence, just the precursor for a different life path. I know that myself and my partner are strong people and we would adapt to whatever life was to throw at us. Life is hard, or to quote a line from one of my favouirte films, it’s” a piece of shit, when you look at it.” Adding a disability to the mix makes it all that much harder. In my eyes, Mini is perfect, but in the eyes of our fickle, obsessed with money, fame, wealth and beauty society? Probably not so much. And therein lies the heart of the dilemma-I do want another baby but I know if we were to have another child, I would not be prepared to expect the unexpected and that simply put, I would just want someone to tell me that according to society’s standards, that child is perfect.
But then I see this face, and I think to hell with society and what other people think, to hell with the possibility of more disability, another one of these would be a blessing.