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. 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. 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 when there’s an unusually high jackpot at stake. “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 assure you. 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 desirable thing. 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. And I apparently 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 suggested that it would be preferable that Down syndrome be cured (an absurd idea considering a syndrome is not a disease like cancer). 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 have always claimed to 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 humble as to say I am not a special parent, but because most babies are aborted if they are diagnosed with Down syndrome (internationally speaking, although the abortion rate in the United States is about 30 percent).
I’ve come to realize that, for years, I hypocritically 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 received a prenatal diagnosis, 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, we are 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 whom I identified. I was not on the level of the people Dawkins would throw away. I was above them, a savior. My disdain was nothing more than self-righteousness.
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. I was opposed to Dawkins only superficially. 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 atypical. 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.
21 thoughts on “Down Syndrome, Abortion, and My Hypocrisy”
Adam, you and Nicole have a beautiful son, a precious gift from God. I pray for you family for God to always bless you. You and Nicole will be wonderful, loving parents and your son will grow richly in God’s grace. I hope to met Jude soon. I love you and your family. Sincerely, Aunt Pratha.
Wonderful insight, Adam. I am blessed to have met you and I know that God will richly bless you Nicole and Jude.
God has shown you a reality, a truth He has also shown me. Although, we do not have a child with Down Syndrome, we do have a number of kids that the world would call “defective”. God’s word does assure us that all life is precious. He does not make mistakes in the womb. If we believe that he can make mistakes in the womb, then we must also accept He is imperfect in other areas. WE KNOW THAT HE IS PERFECT IN EVERY WAY. Sadly, even within the church many who profess to be prolife really are only antiabortion. Prolife is so much more than that as God has shown men like you and like me. We must broaden our view as God’s people that prolife includes every child God conceives. Every life has great value; your son, my children, the elderly, the orphan everyone. Thank you for sharing, may your words touch many in the body of Christ and cause them to reconsider what it means to be prolife. God bless you and your family.
And we were so blessed to hold him and love him this past week-end….thanks for bringing him to meet us. Thanks for sharing your thoughts and this may have results which will later stop someone from aborting a precious life. With love and prayers….Ken & Frankie Smitherman.
Wonderfully written Adam! Congratulations to you and your wife on your beautiful son!
Wow, Adam! That was so well written. In a way I can understand where you’re coming from, only I was 100% sure my kids would have Ectodermal Dysplasia. In the 1990 edition of The Birth Defects Encyclopedia it stated that as many as 7 of every 10,000 babies are born affected by an ED syndrome. I think my family knocked that out of the park! We really don’t think it is even a possibility for us unless it’s already seen in our family somewhere, and even then we hope we don’t draw that straw as well. I ‘hoped’ that my firstborn, being a boy, would not have HED becaue Michael and Richard were both born without it; however, I would not change one thing about Nathan. He is fearfully and wonderfully made and God made him with just enough for dentists to work with at every stage so far! Thank you for sharing your sweet baby with all of us.
What a great article and a handsome young boy you guys have! He certainly is blessed to have parents like you guys!
You have a beautiful son! I loved reading your article it was very well written and brought back so many memories of when I was pregnant with my third child Cammy. During the routine 12 week scan the neck measurements of my baby were high – to which the nurse said its very common in downs babies and apologised to us. I went to work crying wondering how we were going to cope. But even scarier than that we were told our baby had avsd (atria-ventricular septal defect) and would need open heart surgery at 3-6 months old. I was devastated. Cammy was born at 39weeks on 18 March 2015, it was later confirmed he had down syndrome which didn’t matter to us he was this beautiful boy I had carried for 9 months. He was so precious and small. We went to the cardiologist regularly up to his open heart surgery at 7months old. Cammy has recovered really well. Hes getting his own wee character now and surprises us everyday. He truly is a blessing and I wouldn’t change anything about him. I love his cuddles his smile the way he shouts mama. He fits in perfectly with our family.
Congratulations on your son! We found out our son had Ds around 22 weeks. It took awhile to adjust to the news, but he is 15 months old now and he is awesome!
I felt like God said, “Well, you called yourself pro-life; now prove it.” My son has given me a new view of things. I have to learn to appreciate all life, even those that seem like they don’t appreciate their own. It’s not an easy thing to do, but I’m working on it!
I love you brother, well, in a father to father way.
He is absolutely perfect and handsome. Thank you so much for honestly opening up and standing up for all life.
Congrats on your beautiful boy! I loved your post, it summed up my world vision pre and post the birth of my daughter pretty identically! My daughter Isabel is 8 now, and the things she teaches me and the people she interacts with is an absolute gift, I do feel blessed, sometimes incredibly frustrated (I think that part comes with parenting any kid, not just ones with DS), and humbled (in a great way). Enjoy the journey!
So well put and what a handsome young man indeed. I call these days before Natty came into our lives the ‘arrogantly ignorant days’, your post explains exactly that feeling.
Very well articulated. Every blessing to your family.
When I titled my collection of stories from moms of babies with Down syndrome and other special needs, “A Special Mother is Born” I meant to say that we special parents aren’t chosen for our holiness. We are chosen by God to be given a special means of obtaining holiness. My daughter Christina is our escalator to Heaven, sometimes by inspiring us, sometimes by challenging us. A lot like her big sisters, but just different enough to make us grateful God chose us to love her best.
This piece of writing by you is exactly how I felt about Down Syndrome before my son Michael was born in July 2014. The feelings I had then make me sad and sorry now. Until now I have not been able to explain them, even to myself – but you just have. Thank you and best wishes on your journey with wee Jude. It just gets better.
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