The Time When I Worried that My Son Might Not Have Down Syndrome

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Upon learning that my son probably had Down syndrome, I went through a brief period of denial. Soon after, that diagnosis actually ended up feeling like good news. We had already lost one baby to miscarriage, so knowing that the abnormalities shown on an ultrasound were most likely linked to Down syndrome gave us peace of mind. We would not lose another baby. He would be just fine.

The test that was done to determine his diagnosis did not actually carry a 100% guarantee, though. According to Nicole’s doctor, there was a 99% probability that he had Down syndrome, but to know with absolute certainly would require an amniocentesis. We decided to forgo that procedure after learning of the potential risks. And in the experience of these doctors, in some 1,000 instances the test we had already done had only been wrong 3 times. They seemed certain that it was the correct diagnosis, so we proceeded with the assumption that they were right.

Over the next couple of months, we learned more about Trisomy 21, met people with it, talked to their families, and embraced a better understanding of what life might look like for our family. It was an interesting time for me, personally. To think that I had at first seen the diagnosis as a negative thing, then came to accept it as good news, to finally find myself excited about it is quite something. If nothing else, I hope that my personal journey encourages people to be slow to make drastic decisions when it comes to prenatal diagnoses. You may be surprised by how much your heart can change.

I didn’t realize how much mine had changed until Jude was born.

Nicole and I were looking through Jude’s discharge papers from the hospital the other day. He was born 10 weeks early and spent the first 44 days of his life in the NICU. As you can imagine, there were quite a few pages to look through. One of them reminded me of something. His karyotype (which showed his extra copy of chromosome 21) took me back to the Wednesday afternoon (on the 4th day of his life) when we were given the confirmation that he does have Down syndrome. As I thought about that day, I was reminded of the days leading up to it.

Following his delivery, Jude had an echocardiogram to make sure that his heart did not have any defects (a common issue for babies with Down syndrome). When it revealed a healthy heart, one of the members of the NICU team came to give us the good news. While he was there, I must have said something that tipped him off to the fact that we had not actually confirmed the diagnosis yet. Clearly, it was news to him. I remember seeing a look on his face that seemed to indicate that he was not sure if Jude actually had Down syndrome. That, perhaps, his heart looked fine because he didn’t have a syndrome which often affects the heart in a negative way.

I don’t know whether or not he was actually thinking that. What I know is that, for a few days, I worried that Jude didn’t have Down syndrome after all. It’s hard to explain how I felt. I can only describe the feeling as disappointment.

But why would that disappoint me? Considering my initial feelings about the diagnosis, you’d think I would have felt something closer to hope. That’s not how I felt, though. While thinking about that afternoon, I have wondered why.

I recently read a blog by the mother of a woman with Down syndrome. In it, she challenges the use of “people-first language” when it comes to Down syndrome because, like the color of her daughter’s hair or eyes, her extra chromosome is a beautiful part of who she is. Rather than some negative thing, it is something to celebrate and cherish. It is part of what makes her who she is. I found the blog helpful (ironically, I am about 100% sure it was written in response to one of my own posts) in thinking through my feelings on the days following Jude’s birth. Why would I have been disappointed if he had been a typical baby? Because I had come to love him for who he is.

Does that mean he would have been loved less if he ended up not having Down syndrome? Of course not. But it’s really an irrelevant question in my mind for an important reason: I believe that God had guided our hearts toward loving the baby that He did indeed create to be our son. Jude was planned and carefully created with an extra copy of chromosome 21, and that is part of what makes him who he is.

Full discloser, I still advocate for people-first language. Jude is the same kind of human as any other child, and I think that is worth intentionally pointing out. But please understand that his extra 21 chromosome is an important part of his humanity, not an unfortunate addition to it. It’s something that makes him the beautifully unique individual that we are so blessed to call our son. It’s something that we love about him. It’s something that we would miss if it somehow went away. Without it, our son would not be the same person.

Here’s what I believe: People, with or without special needs, are special. Every individual is made the way that God planned. That means the design of God should be embraced and celebrated. Because I had grown to love that aspect of Jude’s design that we call “Down syndrome”, I was sad at the thought of losing it.

When Jude’s doctor came to tell us the results of his genetic testing on that Wednesday afternoon, the confirmation of his Down syndrome was anything but the bad news that many people would think it should have been. I’m not sure if his doctor understood how good her news actually was. Truth be told, even in my relief on that day, I had no idea just how good her news was, either. Down syndrome had first felt like good news to us when we thought it simply meant that Jude would live. We didn’t consider at the time that it was good news for another reason. Down syndrome itself was good news for us because it meant getting the son that we love and cherish.

That he would live was certainly good news, but that he would live with Down syndrome was good news as well. I get that now, and I am understanding it better with each passing day.

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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?

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. 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.

 

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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.

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.