You Can’t Plan Your Child’s Life (And That’s Probably a Good Thing)

UP21 Walk

My son is 2 years old. He has Down syndrome, so we have been teaching him sign language to help with his communication. He has learned quite a few signs which he can competently use. Verbally, he only says a couple of words right now. One of them is my name. And he says it a lot.

“Dad-dee! Dad-dee!”

That’s what I heard when I walked through the front door after work yesterday.

I often hear it when I am on the phone with my wife and he realizes that I’m the person on the other end of the line.

Or when he wakes up and is ready for someone to come get him out of his crib.

Or when we’re sitting on the floor playing with his toys. He’ll address me while showing off what he’s working on. He wants me to see what he is doing.

It seems that I may be his favorite person right now. I’m sure that won’t always be the case. One day, he’ll realize that I’m actually a pretty average guy. Or he’ll understand that my wife is indeed the superior parent. But I’m going to enjoy being his hero for as long as possible.

When we received his prenatal diagnosis around the half-way point of my wife’s pregnancy, I wondered what it would be like to parent a child with Down syndrome. All I really had to go on were stereotypes and outdated information. I had ideas and dreams about the life my son would live, but that was when I assumed he would be a typical child. Now that I knew he had a disability, I figured life would be much different.

And I suppose it has been. And it will continue to be. But I dare say that this is probably the case for most dads. Whether your child has a disability or not, you likely have at least some dreams and ambitions for his or her life that will not be shared by your child.

It’s a familiar story. We’ve all seen the tropes play out in movies and on tv shows: The jock dad who doesn’t get his book worm son. The corporate-minded parent with the free-spirited child. The parent who expects their child will go to college, but whose child is not interested in academics. It’s familiar because it’s reality. We aren’t in control of what our kids will be like.

I certainly did not plan for my son to have Down syndrome. I did not expect for him to be developmentally delayed. I did not dream of all of us learning sign language together. There is a lot about my son’s life that I did not dream of or plan on or expect.

I don’t know what my son will grow up to become. I don’t know what all his interests will be. I don’t know if he’ll go to college or get married. Basically, I am in the same boat as any parent who is honest with themselves about their child’s future.

But believe it or not, I was right about some of the things I expected when I began dreaming about raising my son.

I expected a son I could play games with. Do you know what I got? A son who loves to roll his ball back and forth with me.

And I hoped that my son would like animals. I definitely got that one right.

I dreamed of going out in nature with him. My little guy loves playing in his tent and going outside for walks. I bet we’ll have camping trips and hikes in our future.

I looked forward to taking him to church and sharing my faith with him. He may not understand my beliefs yet, but he certainly loves going to church and participating in worship services.

You see, people with Down syndrome are, as the saying goes, more like the rest of us than they are different. Sure, life with my son isn’t exactly what I expected, but I am willing to bet that I would say the same thing if he hadn’t been born with that extra chromosome.

If you are expecting a child (with or without a disability like Down syndrome), prepare to be flexible. But more importantly, prepare to appreciate the uniqueness of your child.

In the event that Down syndrome is going to part of your child’s life, please don’t assume that things will be bad. Different? Probably. But bad? Absolutely not. Your baby will be just like any other child. They will play, laugh, cry, snuggle, dance, and all of the other things that babies typically do.

When I come home after work and see my son, I am overjoyed. Not because he has Down syndrome or in spite of the fact that he has Down syndrome. I am overjoyed because I know that he is my son and because he knows that I am his dad.

He makes sure I know that too. He’s the only person who addresses me as “Dad-dee”.

My Son Told Me That Cows Look Like Cats

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Fridays are generally my day off from work each week. Jude and I have perfected our routine for that day. We get up, have breakfast, go to the gym, grab lunch, take a nap in the car (well, he does, anyway), then we go to his speech therapy appointment. It all flows nicely, so we haven’t made any tweaks to it. We literally do the same thing every week. We even get lunch at the same place because I know he will always eat at Chick-fil-a. I get my spicy chicken sandwich and he gets his grilled nuggets meal. Every Friday. They have gotten way too much of my money.

But we like going there. The people who work Fridays at lunch have grown accustomed to our routine, and they always greet my son like the regular that he is. Last week, they witnessed a monumental milestone in his life.

If you know anything about Chick-fil-a, you know that they have cows as their mascots (who encourage you to lay off the beef and keep on enjoying that chicken). If you walk into one of their restaurants, you’ll probably see those cows in various places. Last Friday, we saw one in the form of a mural on the wall above our table. Well, my son saw it and pointed it out to me.

He grunted and motioned to the picture. He’d done things like that before, though. I acknowledged it and said, “Yes, that’s a cow.” Then we continued with our meal.

Then he motioned toward it again.

I said again, “Yes, that’s a cow.”

This time, he pulled his hands toward his face and signed “cat”.

I animated my voice a little bit and said, “That’s not a cat, that’s a silly cow.” He smiled. He knows what a goofy voice means. I showed him the sign for “cow” a couple of times (which he paid close attention to) and then continued with my meal.

A moment or so later, one of the ladies working that day came to our table with a small stuffed cow. “I saw you two talking about the cow and I had to bring him this.” I thanked her, and she went back to work. Then I continued with my meal.

Then it hit me.

I had just had a conversation with my son about something he was interested in. His interest was so clear that even the lady who was working across the room from our table noticed. He clearly communicated his thoughts using a combination of motions, grunts, and sign language.

He does quite a few signs that he has learned through speech therapy, videos we watch at home, and our own reinforcement throughout the day. And he has used them to ask for things before. But this was the first time I have ever had a two-way conversation with my son about something he was interested in.

We talked about that silly cow on the wall.

We left lunch to head to speech therapy. Per our routine, he fell fast asleep as soon as we started driving. As he napped in the parking lot of our next stop, I looked at the therapy building and thought about what had transpired at lunch.

The extra stuff we do to help Jude reach his milestones can feel a bit overwhelming at times. Fridays are just one of the five days in which he sees a therapist of some kind each week. Sometimes, it seems superfluous and not worth the stress that comes with coordinating and keeping up with all of it.

And then, out of nowhere, you have a conversation with your son about cows resembling cats and you realize how blessed you are.

In case you didn’t know, cows sometimes look like cats, and my son apparently really likes them.

If You Use the R-Word, You Are A Bully

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By now, it’s not news there’s a comedy special on Netflix wherein individuals with intellectual disabilities in general, and Down syndrome in particular, are mocked. The whole bit centers around the comedian’s defense of using the R-word like we did back in the good ol’ days. When I first read about the comments he made in his stand up, I had two initial thoughts: 1) That’s hurtful. 2) Who in the world is Tom Segura?

I had never heard of him. That probably says more about my sheltered life than it does about his notoriety, I suppose. But I think it’s worth pointing out that I probably wouldn’t have ever heard of him had he not made fun of people like my son. I suspect that was probably the point.

He knew what he was doing when he said what he did in that special. He knew what he was doing when he doubled down after receiving push-back. He wanted the attention. And here I am writing about him. He got what he wanted.

There are several ways you can go about getting attention. He decided to go the route of the bully. Hey, it works for third graders on the playground.

The thing about bullies, in my experience, is that they like to go after those who are the most vulnerable. I don’t mean that people with Down syndrome are incapable of standing up for themselves (Kayla McKeon showed us how much that is clearly not the case). I simply mean individuals with intellectual disabilities are a minority group. Minorities are often the victims of aggression because the majority group naturally holds more power. That’s the way it works on the playground. The kids with more power go after the kids with less.

So I wasn’t surprised that he and his fans went after people with Down syndrome and their most vocal supporters in such a cavalier fashion. The language he used was all about elevating himself above those he sees as lesser. The R-word is dehumanizing. It’s easy to tell people to chill because it’s just a joke when you don’t see the punchline of the joke as your equal. We can make fun of them. It’s not like they are people or anything.

Look, it’s clear by the way he has responded that he does not care about being kind. He is perfectly content being a bully. I don’t expect my words to change his mind on that. But maybe this will resonate with someone else. Please don’t use the R-word. Please don’t make jokes about people who have intellectual disabilities such as Down syndrome. Please be kind.

There was a time when I used that word flippantly. Now, I can’t hear it without my heart sinking. That may sound silly to you, but it’s the truth. I understand that people usually don’t use it with the thought in mind that they are dehumanizing someone. I certainly didn’t think about that when I used it. But it’s hurtful nonetheless.

If you don’t want to be a bully, please choose a different word.

Death Won’t Get the Last Word

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As a pastor, I am sometimes asked to speak at funerals. The first time I received that call, it was for an elderly man I had never met. I did not know his family either. I thought it would probably be easy as far as first funerals go because he had lived a long life and I had no emotional connection to him or his loved ones. I was wrong though. There was nothing easy about it.

The funerals I have been involved with since then have been for a diverse group of people. Some have been for people who lived long lives, others for people who we might say are gone too soon. I once spoke at the funeral of a father who was younger than me. It was very difficult.

But the reality is that no matter the circumstances surrounding the occasion, it is never easy. A young father dying in an accident is certainly a different tragedy than the death of a grandfather in his eighties. Nevertheless, both deaths bring pain to the families who are left behind. Death is never easy. It’s not supposed to be.

Ecclesiastes 3 famously states, “For everything there is a season, and a time for every matter under heaven: A time to be born, and a time to die…”

I’ve often heard these verses referenced in terms of death just being “a part of life.” And death is clearly a natural part of our time on earth. It will happen.

But Scripture makes it plain that it happens because things are not as they should be (Genesis 3:19; Romans 5:12). Death is inevitable, but that doesn’t mean that we must be ok with it. As Ecclesiastes 3 continues, it also says that war has its time as well. Surely, we do not think that we should then gladly embrace war as just part of life. It may come, but it will always be a tragedy when it does. Many things that occur naturally are bad.

John 11 tells the well-known story of the death of Lazarus, a man identified as a friend of Jesus. Jesus goes to see the man’s family and is met by his grieving sisters Martha and Mary. Remarkably, he joins them in their grief. John describes the scene with the short and powerful phrase, “Jesus wept.”

Knowing that this was a friend of Jesus, it is clear that he wept because he was sincerely mourning right alongside these ladies. He was mourning the death of this friend of his because in the world that he made, Lazarus should not have died. Jesus is mourning because suffering and death do not belong in his creation. They may happen in life, but things were not meant to be this way.

When we grieve, we know on a deep level that we were not made to endure loss. It hurts so badly because the world for which we were created does not contain such things. Jesus makes that fact clear in the way he chooses to act at Lazarus’ tomb. He came not just to mourn, but to raise his friend from the dead. A feat that would demonstrate the glory of God.

Just as with every miracle that Jesus performed, this act was a restoration of the way that things were created to be.

Hunger did not belong in God’s paradise, so Jesus fed the famished. Illness did not belong, so Jesus healed the sick. Death did not belong, so Jesus raised his friend. Every miracle was a sign of his identity not just because he was able to do them, but also because he is the one who truly knows how things are supposed to be.

The miracles of Jesus are pictures of the world as it was intended. Consequently, they are also pictures of the world that is to come. Tim Keller put it this way:

Christ’s miracles were not the suspension of the natural order but the restoration of the natural order. They were a reminder of what once was prior to the fall and a preview of what will eventually be a universal reality once again–a world of peace and justice, without death, disease, or conflict.

The resurrection of Lazarus was a gracious glimpse of what things will be like when Jesus brings everything back into order. As John describes his vision of the future for God’s people in Revelation 21, we see that just as death and sorrow didn’t belong in God’s original paradise, neither do they belong in God’s restored creation:

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

As I serve families during their times of grief, I know that there is nothing I can do to take away their pain. The only thing that could do that would be the reverse of death. Which is what I think is so compelling about Christianity. The central doctrine of the faith is that Jesus overcame death and was resurrected. As Paul explained, Christ is the “firstfruits of those who have fallen asleep.” Meaning, what happened to Jesus after his death will happen again to all who belong to him. Those who are in Christ won’t be eternally confined to the grave either.

As Paul put it elsewhere, “The dead in Christ will rise.” In light of this glorious truth, he gave these instructions: “Comfort one another with these words.” The pain is real, and we should mourn. Even Jesus mourned. But his mourning was temporary because he is the God who raises the dead. For those who hope in Christ, our mourning won’t last forever. Jesus assures us of that. And he also assures us that until that resurrection day comes, he is with us.

Who better to be by our side than the God who weeps with the hurting?

Calling People ‘Special’ Can Be Dehumanizing

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A few months ago, I wrote about why it’s a mistake to label the parents of children with disabilities as “special”. Ultimately, what makes me (or anyone) a qualified parent is that I love my son enough to take care of him. I don’t have to be some superior kind of person to parent a child with Down syndrome. If something special were required, I’m certain that God will have given my son to someone else.

But I think that there is another important reason for people to reject the view that “God gives special kids to special parents.”

It’s not just a mistaken understanding of what I am like. It is also a mistaken understanding of what my son is like. Saying that Down syndrome makes my son “special” may reflect something quite dangerous. It might reveal a tragic view of people who have disabilities.

Remember, the idea is that it takes a special kind of person to be the parent of child with a disability. The perspective creates a distinction between this kind of person and that kind of person.

Do you see the problem?

When we call someone “special” we disassociate from them. “I’m normal, and you’re special.”

“I’m not special,” you might say, “so I can’t handle a special child.” If you think you can’t handle parenting a child that is not typical, are you perhaps admitting that you’d rather not try? Maybe, it reveals that you see people with disabilities as undesirable members of the family. Full disclosure, I had to admit that about myself once.

Truth be told, the “special people” lie subtly dehumanizes those with disabilities. It’s not something that anyone intends to do, but when you start putting people into categories you inevitably start to rank them. And that is the real problem. People with disabilities are very often seen as less valuable than those who aren’t disabled. And that spills over into how we talk. That’s why people sometimes talk about my son as if he is more like my cute pet than my child. Or why kids (or maybe even adults) sometimes talk to their peers like they are toddlers because they are using a wheel chair.

How we talk is a reflection of how we think. If we have the wrong perspective, we will probably have the wrong words.

So please join me in trying to be more careful with our words. Let’s examine what may be hiding behind our good intentions. If our goal is to be encouraging and loving, then let’s be thoughtful in how we seek to express that encouragement.

And let’s be willing to do the hard work of searching our own hearts to see if we are looking down on others because they are different.

Kind words will mean a lot more if they come from a truly kind heart.

Children With Disabilities Don’t Make Parents Special

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Although my wife is pretty 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?

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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.

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 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.