At last we were making it. After two failed attempts, we were oh so close to clear the risk zone of the first 12 weeks and breeze through an easy pregnancy. At last we could relax a little, paint the room, buy baby clothing and break the news to the family.
Then the dream died. I use these harsh words because political correctness is absent in the cold geneticist’s office where they break the diagnosis; because at that time it is normal to feel that the baseball dream, the homecoming dream, the walking-down-the-aisle dream were all slain by a single extra microscopic chromosome. Family members mourn with you the loss of that dream. They cry with you. They give you what they understand is good advice, and you grieve... as you should.
At the time we didn't want to be members of “a club”, a club of “special” kids, or “special” parents. We wanted normal, and we resented a bit all of those who were cheering around us for this “wonderful opportunity”. We wanted everyday life; and, we had the legal right and the power to terminate this ordeal, take a mulligan and try again. But we didn't. For whatever reason, we didn't...
Maybe it was the rapid flickering in the monitor, and my heart, for some reason, wanting to catch up to it. Maybe it was my wife’s smile while looking at that monitor: unchanged, still fresh, and still jolly even after weeks of learning about good ‘ole 47th chrome (our little nickname for the extra chromosome). I really don’t know why, but the air wasn't as heavy, the waters calmed down and I was going to be a father. Not a special father, not a father of a baby with Down, just... a father. Granted: a father that had weekly high risk pregnancy appointments, and who wondered why the growth chart of our baby had the incline of the national employment rate, but a father nonetheless.
She was born carrying 6 lbs. and a mild cry; more like a meh. Of course, those were anxious moments, but she was here and she was ours; and we were hers. We've had our share of surgeries that sound eerie and dreadful but which are actually quite common and routine. We have seen our baby champ check in at 5 months old for open heart surgery on a Monday and be home giggling by Friday. It’s scary, it’s uncertain... it’s parenthood.
From that point on, we have not done one thing that an ordinary parent would not do for their children. Yes, her development is a bit delayed, which only gives us more time to enjoy each and every stage, and each and every accomplishment. Yes, bottle-feeding is a pain in the rear. Yes, there are more medical expenses. Yes, there are concerns about bullying when she gets to school. But, what parent these days does not share the same worries and or experiences the same fears.
Yes, there are support groups and specialized care programs for people with Down Syndrome. They are great and immensely helpful to allow your child to more fully develop into an independent adult. However, we have found these support groups to support parents more than kids; and that’s a good thing. It is us who need to remove some of those uneducated fears and learn to adjust our parenting paradigms. It’s not that we have more challenges as parents, we just have different ones. Educating yourself to better understand them will take you a long way.
In the end Down syndrome doesn't define our daughter nor does it define us as parents. We are an up family, with two rookie parents trying to do their best and a girl that rocks that extra chromosome and is blossoming as an amazing individual. We all should be as lucky.