What I Learned About Myself After My Son's Down Syndrome Diagnosis


When I was in high school I wrote a report on “Down’s syndrome.” Admittedly, I did poor research for that paper. The very title showed my ignorance of the subject as I didn’t realize there is no apostrophe, “Down’s” is incorrect terminology “Down syndrome” is the preferred language. I recall little about the report’s contents, but I do remember how it ended: “Perhaps one day researchers will find a cure, but until then one in every 691 babies born will have Trisomy 21.”

I had no way of knowing at the time, but my son would be that one in 691. Somehow, I never considered 691 is not really that big of a number and I could have a child with Down syndrome. It’s interesting the way we think about odds. Consider how people flock to gas stations to buy lottery tickets. “Someone has to win,” they say. Or how quickly the phone lines of a radio station light up when one lucky caller is promised concert tickets. People believe they can beat incredible odds when in pursuit of a favorable outcome. Many at least entertain the idea.

I have never purchased a lottery ticket or called a radio station hoping to score tickets. I have entered contests though. I have applied for scholarships. I have pursued all kinds of things I probably had little chance of obtaining. I went after them because they were things I valued, and they were things I honestly saw myself winning.

I never considered the possibility that I could win the genetic lottery and have a child with Trisomy 21. Since my son’s birth, I have wondered why not. Maybe it was because no one in my family had it, and the overwhelming majority of the people in my life were “normal.” Perhaps. Still, as I have considered why, I have come to conclude the answer is not so innocent. Indeed, the answer probably paints an unfortunate picture of how I viewed people with Down syndrome.

That is not to say I have looked at people who have Down syndrome and thought anything unpleasant about them. Quite the contrary, I assure you. Nonetheless, the fact that I never thought about such a person being in my family suggests I lived with the assumption that I was somehow “better.” Or at least that having someone with Down syndrome in the family was not a favorable thing. Some people are shocked when they get cancer because they never think it will happen to them. Young people can be reckless because they think they are above getting hurt. And I apparently saw Down syndrome as something that would never happen to me. The final line of my paper from high school confirms my view of individuals with Down syndrome was an ugly one. I suggested it would be preferable for Down syndrome to be cured. That, perhaps, one day that one in 691 could be eliminated.

Actually, there is a way to eliminate that 1 in 691. Many see it as a legitimate way of keeping Down syndrome out of the family. You may have heard it said that “God gives special children to special parents.” I disagree. Not because I am modest, but because most babies are aborted if they have a prenatal diagnosis of Down syndrome (internationally speaking, although the abortion rate in the United States is about 30 percent).

 

I have proudly opposed the notion that chromosome abnormalities are grounds for abortion. I can remember when Richard Dawkins tweeted about the “ethical dilemma” a parent expecting a child with Down syndrome may face: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” Yes, he actually said it would not only be a good idea to kill your child if they were diagnosed with Down syndrome, but it would also be immoral to grant life to that child (in fairness, he clarified his position later on, but did not back down either). Dawkins received pushback from a lot of people for his horrifying position. I happily shared my disdain for his callousness on my Facebook page, satisfied I had stood up to evil. I was a hypocrite though.

The problem is I never stopped to think that I might face that “dilemma” myself. To be clear, my wife and I are pro-life and abortion was never on the table. Still, as I opposed Professor Dawkins from my laptop in the comfort of my living room, I did not do so because I knew I would gladly give life to the child I might have. The hypothetical baby with Down syndrome wasn’t a thought for me. My outrage did not stem from a concern that Dawkins threatened the personhood of real people to whom I related. I was outraged because I saw the need to protect a population that needed my help. I was not on the level of the people Dawkins would throw away. I felt I was above them.

Therein lies the hypocrisy. A child with Down syndrome was a precious life worth protecting, but a child with Down syndrome was not someone to whom I saw a real connection with. In theory, I opposed Dawkins, but I may as well have been him. He saw the life of a baby with Down syndrome as disposable. I didn’t even see the possibility of my son’s life.

When my wife was 20 weeks pregnant we found out our son’s development was abnormal. We went to see a specialist who tested for chromosomal abnormalities. He did not expect that to be the actual medical reason, and I didn’t expect it to be anything like that because “it would never happen to me.”

Except it did happen to me. That hypothetical life I had defended on Facebook was now real. The surprising thing was that after waiting a couple of weeks to find out what was wrong, news that it was Down syndrome ended up feeling like good news. My initial denial had transformed into fear for the worst, so knowing he was OK brought us so much joy.

I have long held onto Psalm 139:13-14 as the basis for my pro-life views. I now embrace it as a truth I have experienced first hand.

“For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.”

I have found that the one in 691 is the most precious thing I have ever been entrusted with, and may that “one” never be eliminated. God doesn’t give “special children to special parents.” However, my son is most certainly a special child as are all children. King David was right, God’s works are wonderful. I know that very well now. I’m thankful God allowed us to win the genetic lottery, even though I never considered playing. I wouldn’t change a thing (or a chromosome) about my son.

Dawkins was wrong, and so was I.

Follow this journey on Adam’s Notepad.

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