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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My Son is Not a “Down’s Baby”: Or Why it is Sometimes Good to be Politically Correct

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Totally inadvertent that 75% of his cutest pictures feature the Broncos logo.

One day I was looking through my Facebook feed when I came across a post by my friend, Mat:

I think the world has gone nuts over being offended. Don’t get me wrong. However, a whole lot of what we call “politically correct” my momma called “manners.” Christians aren’t called to be the common sense police. Christians are called “to be all things to all people that by all means we might save some.” (1 Cor 9:22).

I couldn’t have agreed with him more. The current fad of being “politically incorrect” for the sake of opposing the so called “PC Police” is not a Christian virtue, and this idol of getting to say anything we want really needs to be reexamined. And not because we need to live to please everyone all of the time. As Mat pointed out, yes people have taken it way too far when it comes to how they respond to being offended. It is absolutely unreasonable to expect people to never say something that rubs us the wrong way. And really, I think it is impossible to live and speak in ways that will be 100% acceptable to everyone all of the time. Different values exist across our world, and we are kidding ourselves if we think that there is a way to please everyone.

Still, why do we value the right to offend more than we desire to be kind? For Christians, I think that it is obvious which of those things should take priority over the other. One of them is a fruit of the Spirit. The other is not. The gospel message is certainly offensive, but reserving the right to call people names or use language that others find hurtful are not gospel issues. Our language should always build up (Ephesians 4:29).

I think the problem is with the term “politically correct” itself. It is regrettable that this has become about politics because that’s not really what it’s about. At least, not all of the time. Often, the people who desire that different terms be used are not actually being all that unreasonable. If I find it offensive when someone labels something they find dumb as “retarded”, am I being unreasonable? I don’t think so. It’s easy enough to point out the original meaning of the word and demonstrate how someone equating it to being dumb or stupid or some other negative thing is incredibly dehumanizing to people with special needs. Is the right to use hurtful language really more important than treating one another with kindness? The polite and decent thing to do is to avoid being unnecessarily offensive if you can help it.

Allow me to illustrate what I mean:

My son has Down syndrome. My son is not a “Down’s Baby”. He is a baby who has Down syndrome. It is something that he possesses, but it is not who he is. Does the distinction matter? I believe it does. When someone uses the incorrect term, there is a connotation that suggests that he is not the same kind of human as, say, “normal people.”

To be clear, I am not walking around carrying a grudge against the (several) people who have used “Down’s Baby” during Jude’s short life. I understand that they did not intend any harm. And that is my overall point, I suppose. When people use “politically incorrect” language, they are mostly not trying to be offensive. But the thing is, they nonetheless often are offensive. Do I take it personally when people use the wrong term? Not usually. But I do understand why some people might just take it personally. And I empathize with them.

It’s true, you cannot please everyone. But why not do our best to be polite? I am not suggesting that we walk around on egg shells for the rest of our lives, but I do believe we should think through the things that we say. When it comes to so called “politically incorrect” words, it is possible that people find them offensive for legitimate reasons. And even if we disagree with them, is being right about a word more important than the person challenging our usage of it?

The verse that Mat referenced in his post comes from one of Paul’s letters. Paul argues that Christians lay aside the secondary things in order to get into the lives of people and, hopefully, win them over to the faith. Of course, we should never compromise on the truth of God’s word. As we share the gospel, we will without a doubt say things that people do not want to hear. They may even find what we say to be very offensive. That should be expected. However, if the way that we talk about other things turns people off, then maybe we need to change the way that we talk.

John MacArthur put it this way:

[Paul] did not compromise the gospel…But he would condescend in any way for anyone if that would in any way help bring him to Christ…If a person is offended by God’s Word, that is his problem…But if he is offended by our unnecessary behavior or practices—no matter how good and acceptable those may be in themselves—his problem becomes our problem.

Christians, let’s be slow to speak. Let’s listen to people. We may just realize that the language that they find offensive is seen that way for a good reason. And even if they are totally wrong about the terms we like to use, is that more important than our witness?

The way that we talk is a big part of how we show love to our neighbors. Let’s be sure to love them well.

Miscarriage and God’s Grace

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I went home from work one day to find Nicole with a smile on her face and a gift bag in her hand. I opened my present to find a baby outfit that said, “I love daddy” on it. At that point, I had a smile on my face as well. Just like that, I was a dad. We were so happy. We wanted to tell everyone, but we decided to wait until Nicole was 12 weeks pregnant to make any announcements. We knew why we were waiting, but we didn’t really think through the implications of why we were waiting. In our minds, our baby would arrive on schedule. We had no real concerns about the pregnancy. Looking back, the 12 weeks thing could have almost been called a formality as far as I was concerned.

I remember going to Nicole’s first prenatal checkup. Sure enough, she really was pregnant. They estimated that she was about 9 weeks at that point. Unfortunately, due to being in the sweet spot between insurance coverages, we had to wait for our first ultrasound.

We went back for our ultrasound two weeks later. The screen came on, the familiar sonogram image popped up, and there was our baby. Words cannot describe how I felt at that moment. With tears welling up in our eyes, we looked at our child. I have always made fun of the way that parents get about their sonogram images. I mean, come on, they all look exactly the same. Except this one looked totally different. This one showed my baby. It was beautiful.

I noticed that the ultrasound technician was pretty silent during the whole thing. I assumed that was because she was focused on recording measurements and whatever else she had to do. She sent us to the waiting room where we sat until Nicole’s doctor was ready for us. We were so excited to discuss everything with her. But as we sat in the waiting room watching some version of “House Hunters”, I had a thought: Weren’t we supposed to hear the heartbeat today? I dismissed it. I must have been mistaken. Maybe that was later.

Our excitement crumbled just as fast as it had arisen. Nicole’s doctor broke the news to us that they had attempted to find the baby’s heartbeat, but were unsuccessful. She wanted us to go to another office and have a second ultrasound done to be sure. After the longest afternoon of our lives, we received the terrible confirmation that our baby had probably passed away a week or so prior. What we thought would be a wonderful day ended up being one of the worst days of our lives. And if that wasn’t bad enough, the awfulness of that day decided to linger for a while. It was during that difficult season of grief that we received great support and love. Those with whom we shared the news of the miscarriage were often very encouraging. However, not everything that we were told was very helpful. Indeed, not everything that we were told was even right.

One well-intentioned person attempted to make me feel better by assuring me that we would have another child. I get what they were trying to say, and I don’t hold it against them at all. However, in my mind, they were treating my baby as a very replaceable commodity. Another person asked, “Don’t you know that it happens to a lot of couples?” That one seemed pretty calloused. It was as if we needed to just get over it and things would be better. The problem is that the “it” we needed to get over was a baby.

In both cases, the people meant well. In both cases, the people were trying to be helpful. I believe that life begins at conception, so I approach this subject with that bias. However, if those on the other side of the aisle are correct, that what exists in the womb is simply a potential human, then I think that these people were technically right (albeit unhelpful) to say what they did . After all, maybe we would get another shot at having a kid (we did, by the way), so maybe we could get over the one that we lost (we haven’t, by the way). However, if my belief (which was shared by those who made these statements) about the nature of the unborn is correct, then my baby’s death was just as much of a loss as the death of any child.

That is not to say that I have experienced the same level of grief as a parent who loses a child who has been born. I would have to be very thoughtless to believe that. Those who have lost children after they were born have experienced grief that I dare not claim to have felt. I only mean that in both cases, a child was lost. In both cases, a child should be mourned. In both cases, it is neither helpful nor right to suggest that a new baby will replace the one that was lost and that the parents should just get over it.

A few weeks after the miscarriage, we got a puppy. I remember visiting with a friend who didn’t know what had happened and telling him that we got a dog. He laughed and said something about how that is the normal order: Get married, get a dog, then have kids. I smiled and changed the subject. He had no idea that we had gotten the dog on a whim in an attempt to fill a hole.

Of course no dog could fill the hole left by the loss of our baby. Because nothing could fill that hole. Nothing replaces a person. Not even another person can do that. When we found out that Nicole was pregnant with Jude, I thought back to the person who said we would have another child. For a moment, I entertained the idea that Jude was the replacement for our first baby. But Jude is not a replacement for the baby we lost. Jude is a unique gift just like our first baby was a unique gift.

As I write this, I am watching my soon to be 6 month old son enjoy some time in his swing, looking around the room with fascinated wide eyes. I am thankful to God for him. Right now he is smirking at something that I am unable to identify. It may have been the ceiling fan. It might have been the dog walking by (I’m glad we got him, even if my reason for doing so was misguided). Whatever it is that has him entertained, I am glad that it exists. That smile is, if I may be sappy, heart-melting. Nicole and I are still new to parenting, but even now we cannot imagine our lives without Jude.

People experience the grace of God in common ways all of the time: The sun rising each day; the rain that falls when we need it. Parenthood is another example of God’s common grace. An example of His love for people manifested in a gift that we do not deserve. I always knew that I wanted to be a dad, but I never really knew what a gift it would be until I saw my son for the first time. Of course, a lot of painful things occurred before that could happen.

But even though so much pain surrounds the memory of our first baby, I know that we had a special gift in the brief life of that child as well. The joy that came with knowing that God had placed our baby on this earth. The excitement that came with wondering if we would have a boy or a girl. The way that expecting a baby brought Nicole and I closer together. The brief life was certainly a meaningful one. And I know that God loves our first kid just as much as He loves anyone else, and we look forward to the day when we will meet that child, learn their gender and name, and join with them in worshipping our Lord in a place where death and pain are no more. Until then, we will miss that baby, hold on tight to Jude and each other, and thank God for the gracious gifts that our children are.

Lessons from Paul on Personal Evangelism

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I have always struggled with the calling to share my faith (Matthew 28:18-20; Acts 1:8). Not because I have failed to see the need to do so. Not because I have lacked the desire to do so. It has always been because I’ve felt ill-equipped to do so. People are smart, after all; what if they ask me a question I cannot answer? What if I offend someone or get ridiculed?

If you have had those thoughts, rest assured that there is at least one guy with a blog who can empathize (and I suspect at least two or three others as well). So what’s the answer? Do we need to become experts on every area of theology and philosophy? I am sure that would not be a bad thing, but it’s probably not the most practical solution (although we should strive to learn more each day). Do we need to learn to speak in ways that will not offend? Well, sure, there is no reason to be offensive if we can help it, but the truth is that the Gospel is always offensive at its core (John 14:6; 1 Corinthians 1:18).

I’ve come to believe that fears about not being able to answer every question, or about being offensive, or about being ridiculed are not good reasons for failing to share the good news about Jesus. Christ commissioned us to go and make disciples. He told us to be his witnesses to everyone everywhere. He made it sound like such a simple command to follow. It’s as if we should just be able to go and do it. And when we consider that he assured us that he is always with us and that the power to witness comes from the Holy Spirit who lives in us, we can see why he made it sound so simple. Why do we complicate it?

When something incredible happens in our lives, we naturally want to share about it. I always said I would never be one of those parents who floods social media with pictures of my child. That flew out the window when my precious son was born. We gladly discuss our interests. We passionately tell each other which NFL team is better. For some reason, discussing our faith seems complicated. Perhaps we need to change the way we think about evangelism. Maybe it is simpler. Maybe it is as easy as just telling someone about the amazing thing that God has done for you. Maybe it is as easy as sharing about your interest in living your life for Jesus. Perhaps it is as simple as passionately telling people why Jesus is better. If we have the correct perspective, evangelism isn’t so scary, even when we are sharing with the most difficult of audiences.

In Acts 17:16-34, Luke (the author) gives us a glimpse into Paul’s evangelistic ministry to difficult audiences. The setting is first-century Athens, a city historically known for very smart and educated people. It’s an unlikely place to find success as a Christian missionary, but the story ends with people believing in Paul’s message.

Here are what I think are four lessons that we as Christians can take from this passage that will help us maintain the right perspective when it comes to sharing our faith:

  1. Be genuinely concerned for the spiritual needs around you

The driving force behind Paul’s evangelism was love for the unbelieving world. Paul began sharing his faith in Christ because he was burdened for the Athenians and their spiritual bondage. He saw their idols, recognized their need for Christ, and was compelled to share with them. And in sharing, he did not just go after the “easy” converts. He went to the marketplace and conversed with the philosophers, and was eventually invited to go to Mars Hill and present his message to the smartest of the smart. He went and talked to these smart and educated people, knowing it was going to be a hard sell. Why? Because he was concerned for their souls. Likewise, we should be concerned for those around us. If we are, we will be compelled to share our faith.

  1. Be confident in the Gospel message

Paul knew his audience, so he knew that preaching the resurrection would appear quite foolish. Even so, he does not shy away from proclaiming it. If the Gospel is the power of God for salvation to those who believe (Romans 1:16), then it follows that boldness in declaring it is required. If we are not confident in the message, we will never declare the strange parts of it. But if we are confident in the Gospel, we will be able to share with people everything that they need to know, including the stuff that sounds pretty weird. After all, if you honestly believe that a man came back from the dead, why wouldn’t you see that as a story worth sharing?

  1. Be gentle and respectful when discussing your faith with unbelievers

1 Peter 3:15 instructs Christians to be ready to defend their faith when the need arises. While many know of that mandate, the final instructions of that verse are often overlooked. Peter goes on to tell his readers to carry out that defense with gentleness and respect. Paul exemplifies those two things beautifully as he engages the Athenians. He is complementary rather than judgmental. He is never condescending. He acknowledges that the Athenians are trying desperately to embrace the truth, even pointing out that they got some things quite right. They thought there may be a God that they didn’t know, but wanted to acknowledge. Their own philosophers and poets had conveyed truths about this God. The fact that Paul was able to quote the pagan writers demonstrates that he did in fact respect these people enough to learn where they were coming from. He approached them by commending their honest pursuit of truth, then explaining to them what they were missing. Being argumentative and forceful may just enable you to win debates, but you will not win many people over to the faith that way. Scripture calls us to a better way. If you approach your witnessing as a gentle and respectful conversation, it will be much less scary than if you approach it as a debate to be won.

  1. Be prepared to be ridiculed

When Paul delivered the central Christian doctrine, the resurrection of Christ, some mocked him. Imagine being in the midst of the smartest people in the philosophical center of the world, and being mocked for your belief in the risen Christ. This is what happens to Paul here. The reality is that Paul already knew that they thought his message was crazy. This was the second time that day he told this group about his message, and the first time they called it strange (Acts 17:20). Luke does not go on to describe a defensive Paul who argues with the skeptics in his midst. That does not mean that the discussion simply stopped there. It just means that Luke assumes that the Gospel message is foolish to unbelievers and expects his readers to understand that. It will be easier to cope with being ridiculed if we recognize that the Gospel is what they are rejecting, not us. Don’t get angry and defensive when unbelievers fail to believe. We should expect as much. After all, our message is pretty hard to believe!

 

This story does not end with the whole assembly converting to Christianity. Some mocked Paul, some said they would give it more thought, and some believed. Some gave their lives to Jesus. In this situation where it appears very unlikely that Paul will gain converts, he walks away with new followers of Jesus. He was faithful to obey and share about Jesus, and God was faithful to save people. And that is ultimately why evangelism doesn’t have to be difficult or scary. The truth is that the salvation of our audiences is not up to us. It is completely up to God. Our job is to obediently share what we know, and the Holy Spirit’s job is to draw people to Himself. Who knows, that teammate, or coworker, or family member that you are too afraid to share with may just be the Dionysius or Damaris (Acts 17:34) of your story. Some may mock you, but some may believe. Isn’t the risk of being mocked worth it when people find new life in Jesus?

I Thank God for the NICU

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I will never forget the first time I went to the NICU to visit my son. I had only been there once before. I got to follow the doctors, nurses, and nurse practitioner from the operating room into the unit to see what Jude weighed (2 pounds, 8.2 ounces) before being sent back to my wife, leaving him behind for all sorts of tests and procedures. That was all a blur, so my visit that evening was a big deal for me.

As Nicole’s nurse led me into the restricted area, I was stopped at the door by one of the NICU nurses. She said something to the effect of, “Dad needs to learn the rules.” I quickly figured out that entering the Neonatal Intensive Care Unit is no trivial event. I was redirected to a side room where she instructed me to remove my wedding ring, scrub my hands and arms to my elbows with a special prepackaged sponge (for two whole minutes!), then dry off and apply surgical grade sanitizer to the scrubbed skin before I could enter the room to see Jude. It would become a normal ritual for me, but that day it was kind of overwhelming.

Of course, the whole day had been pretty overwhelming. Nicole was admitted three days prior when an ultrasound revealed some troubling information about the pregnancy. By the time we got her to the hospital, her amniotic fluid level was dangerously low. Jude’s frequent movements were no longer cushioned by the fluid, so they often placed him on the umbilical cord, causing his heart rate to plummet over and over again. That trend continued for those three days, and each time it happened the nurse would come in to reposition Nicole to correct the problem. By day three, repositioning no longer did the trick, so Nicole’s doctor decided to give up on trying to keep Jude in the womb for a few more weeks.

I was at home when Nicole texted me to say that things were getting worse. I had gone there with my little brother (who had come to town to visit that weekend) to get a few items and to let the dog out. She texted me because they had put an oxygen mask on her, making a phone call impossible. I knew that meant the situation was serious, so we rushed back. By the time I got to her, there were no less than 4 people in the room working. They informed us that the doctor was coming (it was her off day) to deliver the baby. Before I could even process that bit of information, they brought me a mask, cap, shoe covers, and a very stylish white jump suit to put on over my clothes. In no time, we were in surgery. It was January 23; 10 weeks earlier than Jude’s due date of March 29.

Everything was happening so fast that I didn’t even have normal responses to things. I am usually pretty squeamish, but when the nurse anesthetist told me, “Look! The baby is coming!”, I peeked over the curtain to see my son being pulled from what I can only describe as the largest incision in the history of surgery. But I did not feel the least bit nauseous. It all happened so fast that I didn’t even have time to think about how unsettling it all should have been. They allowed me to go see Jude and gave me an update on what they knew at the time. We took him to see Nicole just long enough to snap our first family picture, and then it was off to the NICU.

The next few hours were less dramatic. Nicole’s anesthesia mostly wore off after a while and we sat in her room waiting for updates on Jude’s condition. Knowing that he probably had Down syndrome (a diagnosis that was confirmed a few days later), we were relieved to learn that his echocardiogram had shown no heart defects (a common issue for people with DS). I don’t know how many times we were updated, but none of the news we received that day was particularly bad. It was a somewhat calming end to the rollercoaster that the rest of the day had been. Even so, not getting to see our son for hours was pretty stressful in its own way. I hadn’t seen him since about 4pm, and it wasn’t until close to 9pm that I finally got the ok to head over to the NICU.

After scrubbing in, I walked through the doorway into the main room of the unit. As I approached his isolette, I felt a combination of excitement and concern. The isolette was much bigger and more intimidating than I had anticipated. I remember feeling sad as I thought about how little babies shouldn’t have to be found in such circumstances. The stress that I was already feeling was now being compounded by that sadness. Just as I was starting to get overwhelmed again, I was greeted by a kind face.

Jude’s nurse that first night was Monique. She could probably sense by the look on my face and my overall demeanor that I was not in the best place emotionally. I don’t remember a lot of the details about that day. I don’t remember who all was in the room for the delivery. I don’t remember what I was wearing. I don’t remember how long I was in the NICU for that first visit. But I do remember the kindness that I was shown from Jude’s nurse. She took the time to explain to me what the various lines, wires, and tubes that were connected to my son meant. She showed me how to handle Jude through the arm holes on the sides of the isolette. She explained to me what preemie babies like and don’t like when it comes to how they are touched. She was reassuring, helpful, and encouraging. I doubt she remembers much about that day, but I will always be thankful for her presence there.

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Taken during that first visit. As you can see, it was a pretty overwhelming sight.

Her kindness was by no means unique. Each time we entered the NICU (at least twice each day for 44 days), we were greeted by competent and caring nurses who encouraged us during some of the most difficult days of our lives. It was never easy leaving Jude, but the love that these ladies showed our son made it much more bearable. When the time came for Jude to be discharged, I remember experiencing a bittersweet feeling as we left his first home and caretakers. I did not realize until that day just how thankful I was for that place. God was so good to us in allowing our family to experience His provision in the NICU. We do not miss leaving him there, but to this day we do miss going there. Those wonderful people will always mean so much to us.

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Jude saying his goodbyes to a few if his nurses on the day he was discharged.
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Getting ready to go home.
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Jude’s first time outside.

I will never forget the first time I went to the NICU to visit my son. It was the first time I felt at peace with Jude’s situation. I have Monique to thank for that. I will also never forget the many other times that I walked through that door. Each time I was able to cope with what turned out to be a pretty lengthy stay in the hospital. I have a lot of other nurses to thank for that (and a couple of doctors, nurse practitioners, and receptionists). We thank God for the NICU and each of the special people who serve there. NICU staff, we will never forget all that you did for Jude and for us. Thank you all.

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Jude went back to visit some of his nurses a few months after being discharged.

Down Syndrome, Abortion, and My Hypocrisy

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Taken at 1 week old. Jude was born 10 weeks early. Photo credit goes to AK Photography.

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.

 

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*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.

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.