Children With Disabilities Don’t Make Parents Special

“God gives ‘special kids’ to special parents.” You’ve probably heard the statement. You may have even said it yourself. It’s one that is pretty common. I don’t know if I’ve ever actually verbalized it myself, but I did assume it was true once upon a time. However, I now see that it is simply not the case.

I understand that people mean well when they say it. I’ve done my best to be gracious and thankful to those who have said it to me since my son’s birth. I understand it is intended to be a compliment of sorts. People are just trying to be encouraging. But I don’t think that it’s particularly helpful for anyone.

My wife and I will be the first to admit that we are not part of some exceptional brand of humanity. We get stressed out about caring for our little guy sometimes. We get tired. We become impatient. I can assure you, we are just like any other parents.

Sure, they’re called “special needs” because they are not the same things that every child will face. Our son currently sees 4 different therapists each week. He is 16 months old and just last week sat up unassisted for the first time (and we celebrated that accomplishment big time). That milestone came after many months of working with a therapist. He is still learning to feed himself. He does not crawl quite yet. I would be lying if I said that all of this is not overwhelming at times.

And I suppose that some people watching us see how much we love our son, and how much we seek the best care for him. They may take notice of how much time and effort we invest into seeing him succeed. Their observations may lead them to view us as truly special indeed. The problem is that if you removed from the equation that our son has Down syndrome and were looking at the parents of a typical baby, you would absolutely expect to see people who love their child, seek that child’s best care, and who put time and effort into seeing that child succeed. And if parents of that typical child did not exhibit those characteristics, they would be viewed as bad, selfish parents.

So then, what makes us so special?

We’re just doing what all parents naturally do. When you meet your child, you fall in love. And it’s that unconditional kind of love. When you fall in love with your child, you do what you must to take care of them. Some things are easier than others, but you endure because of the one for whom you are doing those things. It doesn’t make you special. It makes you a parent. It’s a job that anyone can do regardless of what life with our little ones may look like. Kids with special needs are just like kids without them. Little humans who will be naturally loved by their parents. And when those parents fall in love, they step up to do the things that the little one will need for them to do.

Anyone can be a parent to a child with special needs. They only need to have love in their hearts.

This cliché is dangerous because it leads not so special people to think that they are inadequate to care for their “special” little ones. Believe me, you can do it.

If you just found out that your baby will have a disability, don’t assume you can’t take care of them. Don’t be scared. Don’t think for a minute that you won’t like being their parent. I can assure you that you will love that child more than you ever imagined possible. No one is better equipped to nurture that baby than you, because no one will love that baby as much as you will.*

God doesn’t give special children to special parents. He gives children (regardless of their needs) to imperfect, ill-equipped people who slowly learn how to apply their love to the raising of their children.

So please don’t call me special, because I don’t call you that either. Neither of us are.

We are parents. A special job, to be sure. But a job for ordinary people nonetheless.

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*Sometimes, that unconditional love that a parent has for their child may lead them to selflessly recognize that they are not the person who is able to care for him or her. In those cases, adoption is a wonderfully miraculous thing. There are also those tragic situations in which a biological parent fails to love their child selflessly and they are forced to give them away (or they abandon them altogether). In both cases, such children come into the care of other parents who unconditionally love them as their own. Praise God for adoption. And praise God for those people who bring children into their families as their sons and daughters. Christians view it as a beautiful picture of what God has done for His children through Christ (Ephesians 1:3-6).

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

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.

The Encouragement I Have Received from the People that Know Best

photogrid_1483632263751 — He likes beignets

In my experience, when your child ends up having Down syndrome, people often have some thoughts to share with you. Some people say misguided things like, “I’m sorry.” Some well-intentioned people say interesting things like, “Your baby will be like the angels.” Some people say something that you might say falls between those two extremes. And then there are those who have no idea what to say at all.

We’ve heard a lot of different things from a lot of different people. While some of those things have been less than helpful, some of them have been very beneficial and encouraging. It’s not surprising that some of the most helpful comments I have heard came from the parents of children with Down syndrome. I’d like to share some of that wisdom with you.

While everyone’s experience is different, these statements have been so very uplifting to me. I hope that they encourage you as well.*

“Take the words ‘can’t’ and ‘won’t’ out of your vocabulary, and never set limitations on what your child will achieve no matter the age.” – April Naretto, William’s mom

“Life with Victoria has been an unexpected journey with unimaginable blessings!” – Heather Messick, Victoria’s mom

www.heathermessick.com

“Set your expectations high; you’ll be amazed at what your child is capable of doing.” – Hilary Case Bordelon, Morgan’s mom

“If you think you had a joyous life before this child, just wait. He will bring joy in your life on a whole new level that you never knew existed.” – Amanda, Eli’s mom

Follow them over at Raising Eli

“You got the Rolls-Royce of children.”

“We always focus and choose to celebrate what our child CAN do because Stasyia CAN do so much!” – Cori-Anne Richardson, Stasyia’s mom

Follow them over at Stasyia’s Story

“He will be the heart of your family.” – Jim Robinson, Helen’s dad

When we found out about Jude having Down syndrome, we were asked if we wanted to continue with the pregnancy. Such a question would never have been asked if he were a typical baby. The fact that the question gets asked demonstrates that many people still negatively view having children with special needs. That makes me very sad.

If you just found out that your child has an extra chromosome or that he or she will have a life that is a little different from his or her peers, please be encouraged by the words of these parents. I will never forget the day I was told that Jude will be the heart of my family. I thank God for the dad who said that to me.

He made me excited for the journey of finding out exactly what he meant.

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*These statements came at various times, some of which where in person and some of which were through correspondence. I did not have a notebook on hand to write some of them down as soon as they were said, so they have been included here based upon my memory. Some of the statements came unsolicited, while others came at my request.

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

jude9

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 4^th 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.

The Danger of Assumptions and the Importance of Awareness

When Jude was given a probable diagnosis of Down syndrome about half-way through Nicole’s pregnancy (we didn’t confirm it until he was born), she and I began doing research. We didn’t know much about it, so learning quickly became a top priority for us. Much to our relief, there is no shortage of educational information when it comes to Down syndrome. What surprised me was the number of websites dedicated to not only educating people on what it is, but also on raising awareness of it. As one who was mostly uneducated and unaware, I (rather ironically) wondered why there was such a concern for “raising awareness”. Aren’t people already aware that Down syndrome is a thing?

What I did not realize is that being aware that Down syndrome is a thing is quite different from understanding it. And even if someone understands the genetic ins and outs of Trisomy 21, they may not understand what it means to have Down syndrome, or how important individuals with it are to the world. I realized the difference following a conversation several months later.

After Jude’s birth, I was walking my dog when I ran into some neighbors. I shared with them that he had arrived and they expressed their excitement for us. As we talked, I revealed that he has Down syndrome. I was surprised by what was expressed next.

“Oh no. He’s Down’s? I’m sorry.”

The statement came with a tone of sincere sympathy. He was truly sorry.

But sorry for what? At the time, I took it to mean that he was sorry we had this kind of baby. He was sorry that we didn’t get a better one. He had just congratulated me, but now it was as if congratulations were no longer in order. We were pitied.

It was one of those moments that I feel like I’ve seen on TV shows. You know, when a character says or does something out of line and is about to learn a valuable lesson? You know the moments I mean. The moments that you kind of roll your eyes at because they never happen in real life.

But it turns out that people really do say such things on occasion. And because it wasn’t what I expected to hear, I was totally unprepared to respond.

I don’t really remember exactly what I said in response. I think it was something like, “Oh, no, we are thankful for him.” And we were. And we certainly still are. And in fairness to my neighbor, I don’t think he had any hurtful intent. I certainly don’t think he intended for me to take it the way that I did. But as I have thought over that conversation since that day, I have had several different feelings. At first, I felt shocked. Then I was angry. More recently, the anger has disappeared and been replaced with empathy. I have come to see that for the better part of my life, I might have felt a little of what my neighbor seemed to express that day.

When the possibility of a Down syndrome diagnosis first came up, I had a brief period of denial. Why? Because I apparently assumed it was something that is undesirable. It was the same assumption that my neighbor apparently had. And whether or not I would have actually said something like that to a new parent, I now realize how ignorance about Down syndrome can lead people to think all kinds of unfortunate things. And I was certainly not immune.

That is why I think it is so important that we raise awareness.

Awareness that people are not “Down’s people”, but first and foremost people who happen to have Down syndrome.

Awareness that the unique challenges that Down syndrome may present are not the only side of the coin.

Awareness that Down syndrome is not a disease or some kind of devastating affliction.

Awareness of the accomplishments of people with Down syndrome (driver’s licenses, degrees, jobs, marriages, etc.).

Awareness that people with Down syndrome bear the image of God along with the rest of humanity and are masterfully crafted by a good and wise Creator.

And on a personal level, awareness that, on most days, I don’t spend most of my time thinking about the fact that my son has Down syndrome. Not because I am still in denial, but because, as many have already pointed out, he and I are more alike than we are different.

Can I ask you a favor? Would you please take a few minutes to explore one or two of the links above and share what you learn with others? You may find out that some of your assumptions about Down syndrome are misguided or even totally wrong.

I know I found that to be the nature of many of my own assumptions. My son is a gift, and there is nothing about him I would desire to change. When I first found out that he might have Down syndrome, that was not the case.

I thank God that I am more aware now.

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

PhotoGrid_1472579823612 — 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 intellectual disabilities. 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 am suggesting 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.

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 my son 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 my son. 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. Our son’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 our son 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 our 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 my son 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 our son’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.

My son’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. 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 him 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.

20160123_212504 — 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 him, but the love that these ladies showed our son made it much more bearable. When the time came for him 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 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.

12794482_10205486983403299_5368906652390202769_n — Saying his goodbyes to a few if his nurses on the day he was discharged.

20160307_171825 — Getting ready to go home.

20160307_173217 — His 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 our son and for us. Thank you all.

20160517_215605 — We went back to visit some of his nurses a few months after being discharged.

Down Syndrome, Abortion, and My Hypocrisy

jude3 — 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.

Adam's Notepad

Thoughts on faith, marriage, fatherhood, and other things

Category: Down Syndrome