I researched and wrote a report on Down’s syndrome when I was in the 10th grade. I use the term “researched” rather loosely, because I admittedly did very poorly in the way of scholarship. In fact, the very title of my paper betrays my ignorance of the subject at the time. I did not even realize that “Down’s” is incorrect terminology (the correct term is simply “Down syndrome”). I can recall little about the contents of the report itself, but I do recall how it ended. To paraphrase what I remember, “Perhaps one day researchers will find a cure, but until then 1 in every 691* babies born will have Trisomy 21.”
I had no way of knowing at the time, but my first-born child, Jude, would be that 1 in 691. The thought that I might one day have a kid with Down syndrome never actually occurred to me. Like, ever. I knew people growing up who had it. I knew people whose kids had it. Somehow, it never crossed my mind that 691 is not really that big of a number, considering how many people there are in the world. It’s interesting to me the way that we tend to think about odds. Consider the way that people flock to gas stations to buy lottery tickets. “Someone has to win,” they say. Or think about how quickly the phone lines of a radio station will light up when listeners are promised concert tickets if they are the fifth caller. People tend to think that they will beat the incredible odds when in pursuit of a favorable outcome. They at least entertain the idea.
I have never purchased a lottery ticket or called a radio station hoping to score backstage passes. I have entered contests though. I have applied for scholarships. I have applied for jobs. I have pursued all kinds of things that, in reality, I probably had little chance of obtaining. Nonetheless, I optimistically went after them because they were things I valued, and they were things I honestly saw myself winning.
Interestingly enough, I never considered the possibility that I would win the genetic lottery and have a child born with Trisomy 21. Since Jude was born, I have considered why that might have been. Maybe it was because no one in my family had it. Maybe it was because the overwhelming majority of the people in my life were “normal.” Perhaps those reasons were part of the answer. Still, the more that I have considered why, the more I have come to conclude that the answer is not so innocent. Indeed, the answer probably paints an unfortunate picture of what my view of people with Down syndrome actually was.
That is not to say that I looked at the people I have known who have Down syndrome and thought anything particularly nasty about them. On the contrary, I have always looked at such people with love and compassion. At the same time, the fact that I never thought about such a person being in my family suggests to me that 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, something to be desired. People are always shocked when they get cancer because they never think it will happen to them. Young people are reckless because they think that they are invincible and above getting hurt. I, unconsciously, saw Down syndrome as something that would never happen to me. In fact, the final line of my paper from 10th grade biology confirms that my view of individuals with Down syndrome was an ugly one. I actually suggested that it would be preferable that Down syndrome be cured. That, perhaps, one day that 1 in 691 will be eliminated.
Actually, there is a way to eliminate that 1 in 691. Ironically though, it is a process that I abhor. Many do not hate it, though. Many see it as a perfectly 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 have to disagree with that. Not because I am so modest as to say I am not a special parent, but because most babies are aborted if they are found to have Down syndrome (internationally speaking, although the abortion rate in the United States is about 30 percent). No lie. That fact horrifies me, by the way.
I’ve come to realize that, for years, I lived with a very hypocritical view. I proudly opposed those who suggested that chromosome abnormalities were grounds for abortion. I can remember seeing where the famous biologist Richard Dawkins tweeted the following 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.” You read that correctly. He actually said that it would not only be a good idea to kill your child if they were found to have Down syndrome, but that it would be immoral to grant life to such a child (to be fair, he did clarify his position later on, but he did not back down either). Such a position is beyond troubling, and Dawkins received push back from a lot of people. I happily shared my disdain for his callousness against real people on my Facebook page, satisfied that I had stood up to evil.
The problem is that I did not stop to think that I might one day face that “dilemma” myself. To be clear, I am of course pro-life and abortion would never have been on the table (indeed, it wasn’t). Still, as I bravely 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 with Down syndrome. Again, it never even occurred to me that I might have such a child one day. Unlike the scholarships I knew I had a shot at, the hypothetical baby with Down syndrome wasn’t really a thought for me. I saw myself getting the things I wanted. I did not see myself getting the things I did not want. My outrage did not stem from a concern that Dawkins was threatening the personhood of children with Down syndrome. 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 was above them, a savior.
Therein lies the hypocrisy. A child with Down syndrome is a precious life worth protecting, but a child with Down syndrome is not a life I saw myself actually being responsible for. In theory, I was opposed to Dawkins. In reality, I may as well have been Dawkins. He saw the life of a baby with Down syndrome as disposable. I didn’t even see the possibility of the life of my own son.
In November of 2015, everything changed. My wife, Nicole, was about 20 weeks pregnant when we found out that Jude’s development was off. When the doctor called to tell us that his lateral ventricles were dilated (I didn’t know what that meant either—Google it), I remember being somewhat in denial. We went to see a specialist who tested for chromosome abnormalities. He did not expect for that to be the actual issue due to family history and our young ages, and I didn’t really expect it to be anything like that either. Everything was going to work out fine, because it would never happen to me.
But it turned out that Jude did have an extra copy of Chromosome 21. It did happen to me. Suddenly, that hypothetical life that I so valiantly defended on Facebook was no longer so hypothetical. And do you know what’s surprising? After waiting a couple of very long weeks to find out what was going on with Jude’s development, news that it was Down syndrome ended up feeling like good news. My initial denial had transformed into fear for the worst, so finding out that he was going to be ok brought us so much joy.
Jude is a very young baby, and we do not yet know what kinds of things to expect developmentally. All that I know is that the life that I hold in my arms is a precious one. I have long held onto Psalm 139:13-14 as ammunition for my pro-life views. I now hold onto it as truth that 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 1 in 691 is the most precious thing I have ever been entrusted with, and may that 1 never be eliminated. I reject the notion that God gives special children to special parents. However, Jude is most certainly a special child. As are all children. King David was right, God’s works are wonderful. My soul knows that very well now. I thank God that He allowed us to win the genetic lottery, even though I never even considered playing. I wouldn’t change a thing (or a chromosome) about my son. Dawkins was wrong, and so was I.
*1 in 691 is the statistic as of May 25, 2016. I do not know if that was the exact figure I had in high school.