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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The Encouragement I Have Received from the People that Know Best

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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 Danger of Assumptions and the Importance of Awareness

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Photo credit goes to AK Photography

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.

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.

Dads Don’t Babysit

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Who wouldn’t want to watch this guy?

My wonderful wife, Nicole, is one of the greatest ICU nurses in the world. She’s too modest to admit that, so I will go ahead and put it out there. She works very hard three nights each week taking care of patients with high acuity (she taught me that term—it is a very nuanced term, it turns out). That means that three nights each week, she is out helping save lives from 7pm to 7am.

When people hear about Nicole’s schedule they often ask the same question. No, they don’t ask what led her to such a heroic profession. They don’t ask her how she works such crazy shifts and remains so kind and patient outside of work. They don’t usually ask about the perils of transitioning from nights to days when she is off work. People used to ask those kinds of things, but they haven’t been the typical questions since Jude’s birth.

The question that comes up these days often goes something like this: “Who babysits Jude while you work?” When the asker is told that I take care of him, the follow up question is often a puzzled, “Your husband babysits your son?”

That the man would take responsibility for caring for the baby is surprising to many. I had no idea that such an arrangement would appear to be so radical, and at first I was kind of frustrated by those who saw it that way. Of course I babysit my son. Who else should do it in my place? Why would I want for someone else to do it? Why on earth would I want to give up these precious moments with him if I don’t have to?

Sure, it would be easier to walk Scranton if I didn’t have to first strap on a (very girly-looking, damask print) baby carrier. To my surprise though, I don’t mind being the guy walking around my apartment complex parking lot with a baby wrapped up against my chest. I actually kind of like it. Seeing those big eyes staring up at me as we walk the dog is priceless. Plus, I’m proud of my son. I want people to see him, even if I look silly in the process.

Frustration with people over the issue seemed natural. That is, until I realized I may have agreed with them.

One evening while Nicole was working, I was pushing a stroller around Lowe’s. Jude had gone with me to the home improvement store to help me price power tools (they are far too expensive, in case you were wondering). As we strolled the aisles, I started to think about how great of a dad I must be. After all, many are shocked to find out that I take care of Jude by myself, and all of the other men appeared to have left their babies at home. There I was, babysitting my boy with a little help from Eddie Bauer (a fantastic product of a stroller). Maybe it was true. Maybe I am special.

But just when Eddie and I were about to get enormous egos, I had a realization. I was not babysitting Jude, because dads don’t babysit (I guess I had seen this somewhere and subconsciously tucked it away). Babysitters typically get paid. Babysitters go home when the parent returns. I was not babysitting. I was simply doing my job. I was simply being a parent.

When Jude is left in Nicole’s care, no one calls that babysitting. Why is it that when the baby is left with the dad people think that it is so commendable? Where is the commendation for the mom? I guess it’s absent because society sees moms as responsible for doing their job of caring for their children. Unfortunately, we often seem to ignore the other side of that coin: Dads are also responsible for caring for their children.

As our culture laments the absence of so many fathers, I fear that we fail to recognize that many of the fathers who are present in homes are actually pretty absent as well. Could it be that part of the reason that we see such failure on the part of some fathers is because we expect so little from them? I know that I have only been a dad for about 20 minutes and it is easy for me to say, but it seems to me that an involved father being a novelty is a pretty sad commentary on the family.

So, yes, I do keep Jude while Nicole is working, and sometimes while she is not. That should not make me special. If it does, then shame on the fathers of this world. Dads, we apparently have a serious PR problem.  A father taking care of his child on his own should not be seen as an innovation. We can and should do better.

Our wives should not be expected to carry the load of parenting alone. It’s not fair to them or to our kids. And fairness aside, if I may say so, it’s pretty foolish to push it all off on them anyway. Doing so will cause you to lose out on the incredible blessing of taking care of your child. I may only have about 20 minutes worth of parenting experience, but they have been some of the best minutes of my life. Believe me when I say that these moments are blessings that you do not want to forfeit.

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.