The Blessings and Hardships of Down-Syndrome Parenting

There was a website called "Jump The Shark" which was long ago taken over and blown up by TV Guide, that essentially served as a message board of people's favorite memories of old television shows. I remember reading a the board for "Life Goes On", an old ABC drama about the Thatcher family, who had a son Charles a.k.a. "Corky" who had Down syndrome. The posts on the board, like most of the ones on the site, were of the biting and sardonic variety, including on reminiscing about an episode where the expecting mother, played by Patti Lupone, announced to her husband and daughter, Becca, after a pre-natal visit, "Good news everyone! The baby's normal!" Corky, who unbeknownst to everyone had wandered into the kitchen, overhears and (obviously hurt) says, "What do you meansk, normalsk?" and runs away wounded.

The truth of the matter is that it was apparent on this website, that most of the postings about Life Goes On were thinly veiled potshots at Corky, mocking the way that he talked (e.g. ending many words with an "-sk") and other assorted cheap jokes. I'd be lying if I said I didn't laugh out loud at some of them. The developmentally disabled is easy prey for cheap gag, which was something that the Farrelly Brothers also did for "There's Something About Mary" and "The Ringer", though in fairness to them, they're actually huge advocates of the Best Buddies program and the Special Olympics.

I thought of this topic as I read a recent article about the decrease of Down syndrome births in the United States. The article ran on two themes. First was the tragic figure that 90% of women who are carrying Down syndrome babies are choosing to abort their unborn children. My views of abortion and my moral convictions notwithstanding, I have a great deal of compassion for those mothers and parents who encounter such a life situation. But as Dr. Brian Skotko, a pediatric geneticist at Children's Hospital Boston says, "I am concerned about mothers making that informed decision. Are they making it on facts and up-to-date information? Research suggests not, and that mothers get inaccurate, incomplete and sometimes offensive information." The article also references a woman who aborted her Down syndrome child who confessed that her doctor "didn't paint the brightest picture."

The second theme in the article is quite uplifting, and tells the story of parents who have opted to go through with the birth of their child with Down syndrome, which have been punctuated with moments of joy between siblings and fantastic support from groups such as First Call. As one mother reflected, "I am a better person and a better parent (because of her decision to keep her Down syndrome child). We have a ways to go yet, but like everything else, she'll get there. She is determined, fearless and happy."

Closer to home, Sarah and I had Down syndrome screening done for Daniel and our third child (but not Sophia, not sure why) but never with the intention of aborting our child, which we would strenuously morally oppose, but rather to provide a heads-up for us to plan. We're not naive about the challenges to Down syndrome parenting, being friends with a family with a Down syndrome child. While I can't honestly say that I would "hope" for such a scenario, I've looked with a great deal of admiration and respect (but not pity) towards our friends. Their son Jack is a happy and healthy boy, and also happens to be one of Sophia's favorite playmates.

When Sarah and I go through the pre-natal screening process, what we've also tried to do is reframe the whole though process into one where we are doing our best to trust God's providence and best plans for us. This isn't done in some naive or rose-colored filter. Again looking at the example of of friends, we are both aware of the immense challenges of such parenting and amazed at the love, grace and patience exhibited by these friends of ours.

I remember talking about this topic with Sarah, and one of the things that we preached to ourselves was the belief to believe strongly in the love that God had for our child that, for example, might have Down syndrome. Instead of framing it as a "woe is the child and woe is us!", should we instead frame the scenario as, "God loves this child dearly and would want to put this child in a family where He is confident that he will be loved, nurtured and well provided for. Knowing from Scripture that God is not going to give us more than we can bear and He has richly provided for us, should we not see this as, dare we say it, a privilege and an affirmation from God to the strength of our family?"

Of course it's easier said than done. But I am heartened by the stories in the article which testify to how overwhelming the love of a family can be in light of such circumstances.