A Future Without Down Syndrome – Good Idea or Bad Idea?

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Photo Credit: BW Photography

A few months ago, I corresponded with a man named John. He is the father of Grace, a young woman who has Down syndrome. Grace belongs to an ever-growing community of entrepreneurs with Down syndrome (Gracie’s Doggie Delights). In his message to me, he made the statement that the future is looking bright for his daughter, and that it will only be brighter for my son, Jude. Indeed, great strides have been made. I was very encouraged. But since then, I have begun to wonder if he was right.

Did you know that it is becoming easier for things like Down syndrome to be detected (with near certainty) through non-invasive prenatal testing? Did you know that the majority of children who are diagnosed with Down syndrome will be aborted (internationally speaking)? Did you know that this type of selective abortion has virtually eliminated babies born with Down syndrome in some countries?

Did you know that it may be possible to genetically edit babies who are diagnosed with Down syndrome in the future? That it may one day (soon) be possible to change a baby’s DNA so that they won’t actually be born with it? If it sounds like science fiction, that’s because it’s insane. Nonetheless, it may not be out of the realm of possibility.

One of the publications that I follow on Facebook recently shared an article about that very possibility and posed a question: “Suppose you are pregnant. A genetic test reveals your child has Down syndrome, and you are offered the option to undo the genetic mutation. Would you?”

What do you think? Would you edit your child? Regardless of how close science is to allowing us to alter DNA, do you think the world would be a better place if people with Down syndrome no longer existed?

I went to the comments section of that post hopeful. Surely, everyone knows how crazy that sounds. Indeed, how horrible the thought. But once again, hope in humanity was misplaced. The people spoke, and many of them responded with a resounding, “Yes, I would absolutely edit my child.”

But I wasn’t ready to give up on the people just yet. Perhaps they just hadn’t thought it all through. So I replied to some of them (perhaps a bit passionately). I explained that my beloved son has Down syndrome and that we happen to like it. I explained that one of them was wrong to compare Down syndrome to cancer. I tried sharing stats about the positive impact that people with Down syndrome tend to have on their families. Ultimately, it seems I got nowhere with the people who decided to respond to me. In fact, one guy told me that my son was a “genetic and familial dead end.” He also called him “defective”.

Obviously, I think that nice guy was wrong. But whether people were nice or mean about it, they came from a perspective that I fear far too many people share. It’s a perspective that I have even heard from people who share my Christian worldview. It goes something like this: Down syndrome is a flaw that would not exist in a perfect world.

If that’s true, then sure, edit that DNA.

But I think that perspective is mistaken. It assumes that Down syndrome is a problem to be solved. A defect to be fixed. I don’t believe that is true.

Now, genetically speaking, I see why people are tempted to call it a flaw. People don’t typically have 3 of the 21st chromosome. People with Down syndrome are truly unique. But the fact that it occurs because someone has that extra chromosome is an important thing to consider here. They have that chromosome from the very beginning of their development. It is literally always part of them. To remove it would be to destroy part of their body. A fundamental part of them would be lost.

We love our son. And it’s not as if we love him even though he has Down syndrome. No, we would miss that extra chromosome if he were to wake up tomorrow without it. It’s part of what makes him who he is. The idea that so many in our world seem to view people like him negatively saddens me. And as I think about the bright future that John told me about, I fear it may not come to pass. After all, it’s clear that a lot of people seem to think they are better off if their kids don’t have Down syndrome. It’s also clear that many well-intentioned people see those with Down syndrome as in need of fixing. Perhaps the great strides that we’ve made won’t last.

Something that I was told more than once as I interacted with commenters was that it would be best for the child to not be born with Down syndrome because it would mean a better “quality of life”. That assertion seems to have little basis, though. While people with Down syndrome often do require some extra assistance with things like learning and physical milestones, how does one presume to quantify the quality of someone else’s life? Especially considering that the people living those lives are pretty happy with how things are going.

Although there is an obnoxiously overstated stereotype that people with Down syndrome are always “so happy,” there is a very interesting statistic out there. It turns out that some 97% of the people living with Down syndrome are indeed happy with their lives. That’s higher than any other demographic. And, statistically speaking, the families of people with Down syndrome are usually pretty healthy as well.

By the numbers, life is perhaps arguably better when someone has Down syndrome. And that better life extends beyond the individual. Families are better off. Schools are better off. Communities are better off. The world is better off with people who have Down syndrome. To jettison that community from our world would not be progress. Trisomy 21 is not a disease to be eradicated. It’s a gift that, as of now, occurs in approximately 1 in every 700 births in America.

Please join me in advocating for a future where people with that gift continue to make our imperfect world a better place.

Just as God intended.

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Please Come to Church With Your Kids

IMG_3513 (2) (2)I have been involved in youth and children’s ministry for about six years. As a leader, that is. In reality, as a life-long church-attendee I have been involved in those ministries since birth. While I was growing up, my parents prioritized church attendance and involvement above every other activity in life. They wanted us to know that putting Christ first meant putting other things second. My parents are certainly not perfect, and I know that they made mistakes while raising me and my siblings, but I think that they did us a great service by modeling that priority.

As a youth pastor, I am often perplexed by the priorities of the families that I serve. Many of the young people who have called me their youth pastor do not come from families who prioritize Christ and his church the way that my parents did. In fact, many of the kids that I have served (and presently serve) come to church without their parents. That fact certainly saddens me, but it is not what perplexes me.

I am perplexed by the way that many of the non-attending parents (sort of) prioritize church involvement for their kids. These are the parents who perhaps come to church a few times each year, but are very enthusiastic about their kids being at weekly Bible studies, attending activity events, and even going on mission trips during the summer.

I don’t want to over exaggerate the extent to which these parents desire church involvement for their kids. Church seems to be viewed like a positive hobby. That hobby, however, rarely takes precedent over things like family weekend trips, sports teams, or school. If one of the above is going to interfere with church, we are safe assuming that we will not see their child that week. This is also common with a lot of families whose parents actually do regularly attend church. There seems to be this paradox in which parents desire for their children to know the most important Being, but also do not see knowing the most important Being as the most important thing for their children. Perplexed? Me too.

Parents, I want to challenge your thinking on this. Consider what I am teaching your kids when you send them to church: There is an all-powerful God who has made the world and everything in it. The sins of the people God created have disrupted this world and communion with God, but in His love and mercy He has sent His Son to set things right and create a way for creation to be redeemed and restored. That, if true, is certainly the most important thing to teach your children. If untrue, then it is a lie that should be avoided entirely. What it cannot be is a mere hobby. It is either life-changing or it is not. If you believe it is the former, why would you behave as though you believe it is the latter?

To the parent who sends mixed signals about the value of a relationship with God, please reconsider your priorities. If you see church as the place where your kids can be equipped to grow closer to God, I get why you send them, but why don’t you come too? If it’s important for their lives, it is just as important for your life. And if you see it as the place where believers can be supported and encouraged to live the life that God has called them to live, why do you not make it more of a priority over things like sports or weekend getaways?

I am certainly no expert on parenting, but speaking as a youth pastor, believe me when I say that you are doing your children no favors by failing to prioritize their faith over other things. I have known too many kids who started out in my youth ministry with so much enthusiasm for their spiritual lives, only to fall out of church entirely because their parents directly or indirectly encouraged them to pursue other things. If God is real and Jesus is His Son, you better believe that you have a responsibility as parents to guide your kids to Him rather than away from Him. Please prayerfully get your priorities straight, for your kids’ sake, and for your own.

Does God Really Love Us?

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I grew up in a Christian home. For as long as I can remember, I have been taught that God is love, and that he is all-powerful. He is the benevolent Lord over this world, and he is in control.

Generally speaking, I have no problem with these teachings. My observation of creation and all of its splendor easily aligns me with belief in an all-powerful God who made it all. I can look at my life and see all of the good (undeserved) things that I have enjoyed, and it is not hard for me to believe that this same God is benevolent.

But what about the ugly in life? One does not have to look far to see that things are not as they should be. Words like “evil” and “suffering” remind us of the horrible reality that ours is a broken world. Glance at the news for any amount of time and your optimistic beliefs will be challenged. Assumptions about a good and powerful God may even be replaced with questions: Is God truly love? Is God truly in control?

I don’t know what has happened in your life, but I can certainly say based on some life experiences of my own that suffering happens. Even more, based on things that I see on the news every single day, suffering happens much more often and much more horribly to people all over the world than I could ever imagine. So, where is God?

I will not try to completely answer that question in this short post. All I can say is that God is indeed good.

I know this because of what he has done.

I was once surprised to learn that the Bible does not actually give a direct answer about where evil itself originated. That fact was obnoxious to me. After all, inquisitive minds want to know. It seemed to me that Scripture sidesteps a pretty important detail. However, the more that I thought about it, the more I came to appreciate what Scripture does say about evil. We don’t get a straight answer about where it comes from, but we do have God’s answer to evil and suffering. And it is a pretty incredible answer.

Sin separates us from God. He requires that we be on the same level as he is in terms of holiness, something that no one can do, as we are all fallen. So, what did he do? Did he abandon us to suffer forever in this fallen world? Absolutely not. In the person of Jesus Christ, we see that God is indeed all-loving. When we were unable to live up to his righteousness, he came down to our level. Ours is not a God who distanced Himself from this evil world. Ours is a God who took this world on; and not as a mighty being, but as one of us. And while he was here, he endured the sinful world, was mocked, beaten, and then murdered. To paraphrase Tim Keller, he hates the evil and suffering in the world so much that he came and lived through it in order to overcome it. We can ask where God is in the midst of so much suffering, and the answer is that he is sympathizing with us, as he went through it too.

While we do not have an answer about the origin of evil, we know what God did about it. In a sense, he took responsibility for it. The responsibility that was ours was put on himself. In that act, we find not the answer to why we suffer, but the profound truth that God is not indifferent to our suffering. He cares.

Does suffering happen? You bet. Is God all-powerful? Our sensibilities tell us that he is. But is he all-loving?

The gospel of Christ tells me that he most certainly is.