Dance Marathon III: Of Carnival and Caring

It’s a pleasure to return to Dance Marathon, to join the fun, and join you in supporting the vital work of Riley Hospital – a work that makes a huge difference in the lives of countless kids and their families. 

This year’s theme – Carnival – got me thinking: Carnival, especially in New Orleans, is really about partying right before Ash Wednesday because Lent is coming. Literally, etymologically, carnival means “saying goodbye to meat” because you’re about to embark on a 40-day journey of fasting. 

In other words, real carnivals might involve riotous celebration, but they’re also tinged with sadness: There’s an awareness that the partying will soon stop and not return for a while. 

Maybe we share those mixed emotions here, because we might be whooping it up, but we’re doing it in solidarity with those who are facing big challenges: The kids at Riley, their families and friends, even the doctors and nurses trying to help them get beyond those challenges. 

My family has known such challenges, especially when my son, Nick, had to have open-heart surgery when he was just one. The carnival of celebrating his birth and life, of getting to know him, was true joy his first year. Then, when he had to go under the knife, our joy was, in a sense, put on hold. Everything was on hold – almost like we held our breath while our little Nick was a Riley patient. We fasted from merrymaking. It was like a Lent while he recovered. 

But here’s another funny etymological oddity: The word Lent means springtime, and it’s true that, even in this season of waiting for Easter redemption, we are surrounded by reminders of new life coming: Grass is growing; flowers are blooming; days are longer and warmer. Truly, winter darkness is at an end; the light of good times is on the horizon! 

So it is with the Lent that so many Riley families experience. They put their lives on hold to care for their sick and injured kids with the hope that things can get better. That they will get better. The folks at Riley are dedicated to doing everything possible to make that hope a reality. Like so many, we are grateful to them, and so also grateful to you for supporting them in supporting us. Thanks!
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Nick was privileged to share about his life at the 2025 Saint Mary's College Riley Dance Marathon on Sunday, April 6. The annual event raises funds for Riley Hospital for Children, which provides critical life-saving treatments and healthcare services for kids from our region. For more information or to make a donation, follow this link.

Dance Marathon II: Racing for Riley

Thanks for having us back. We loved being a part of this event last year, and it’s always a pleasure to support good works – and the work of Riley Children’s Hospital is certainly a good work. 

I love the NASCAR theme this year – a theme revolving around the idea of racing. It’s an apt theme in two ways. First, because of the other theme this week: Easter! You’ll recall on Easter Sunday hearing about Mary Magdalene reporting to the Apostles that she saw the risen Christ, and then both Peter and John raced to the tomb to see for themselves. 

Then, Easter Wednesday, we heard the story about the Road to Emmaus and those two disciples who encountered Jesus on the way, and then they raced back to Jerusalem to make their report. 

Finally, Easter Friday we saw the Apostles going fishing, and when they spied Jesus on the seashore, Peter jumped into the water and swam to shore, winning the race against the others in the boat.  

It was all about racing toward something – in this case, Someone – worth the effort. The prize was worth the sacrifice. 

And that’s the other reason racing is an apt theme today, because so much of the work of Riley Hospital is like a race – a race against the clock. Fortunately, most of us don’t need cutting-edge, advanced healthcare for our kids most the time, but when we do, we’re so blessed to have it right down the road. 

Take our first go-around with Riley Hospital. We brought our daughter Margaret to the doctor for what we thought was the flu, but it turned out to be peritonitis due to a ruptured appendix – and Meg was in serious shape. She was immediately transported to Riley where they drained the infection from her abdomen and, once she was stabilized, removed the appendix itself. 

Then there’s Nick. When he was born, we knew he had a heart murmur, but the echocardiogram did not indicate any need for immediate interventions. Later, when he was just a year old, he did begin showing signs of compromised cardiovascular function, and he was rushed to Riley Hospital for evaluation – and then, rushed into surgery. He had four repairs on his heart and spent some time in the pediatric ICU as he recovered…but look at him now. 

All because of Riley, and we, like so many, are so grateful. Thanks, Riley Hospital, for being there so close when we have to race for help. And thanks to you, all you dance marathoners, for helping Riley help folks like us – like Nick.

But don't take my word for it. Here's Nick to tell his own story!

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Nick was privileged to share about his life at the 2024 Saint Mary's College Riley Dance Marathon on Saturday, April 6. The annual event raises funds for Riley Hospital for Children, which provides critical life-saving treatments and healthcare services for kids from our region. For more information or to make a donation, follow this link.

Thanks, Riley Hospital! A Dance Marathon Testimonial

Nick lip-synching "You Can't Always Get What You Want" (with an assist from Dad) 

When I introduce myself to people, I generally lead with my primary vocation, my main gig, which is being a husband and a father. Yes, I’m a nurse and a nursing instructor, and I love that career trajectory that I finally got to in life (after multiple false starts), especially now that I’m here at Saint Mary’s – go belles! Belle yeah! But even that takes a back seat to my being married to Nancy and being dad to our seven kids.

Yes, seven kids! Does that sound like a lot? Maybe, but remember that for most families, most the time, kids come one at a time. With each addition to the family, there’s a surge of adjustment and scrambling and redeployments of energy and attention, but, as days and months go by, the craziness settles down, and the now bigger family gets used to a routine again…until the next baby arrives.

And that’s how it went with us, pretty much, until Nick’s arrival. Nick is my sixth child – my third son – and he has Down syndrome. As a nurse, I had a vague idea of what that would mean for him going forward in life – certain adjustments in developmental expectations and educational goals, for example – but not so much in terms of health.

That changed within hours after his birth. “Nick has Down syndrome,” our midwife told us. “He’s at high risk for heart defects, and you’ll have to get him checked out today.” The echocardiogram did indeed identify some defects – four, in fact – but the doctors determined that it was safe to wait on surgery until Nick was a little older, a little bigger and stronger.

A little older, bigger, and stronger turned out to be a couple months after Nick’s first birthday. He had become significantly lethargic, and no amount of sleep restored his usual pep and energy. When Nancy took him to the clinic for a checkup, little did we know that they’d end up heading down to Riley Children’s Hospital in an ambulance directly. The cardiologists there did a heart catheterization on my infant son, and the results led them to schedule open heart surgery for Nick right away.

After it was all done and Nicky was recovering in the pediatric ICU, the cardiothoracic surgeon gave us a rundown on everything he fixed: closing up this hole and that hole that shouldn’t been there, and re-routing Nick’s cardiac flow for optimal health. We thanked him profusely, of course – who wouldn’t? And Nancy still prays for him to this day, 18 years later.

Yes, 18 years later – and now here’s my Nick, 19 years old, and getting ready to move on from Marian High School. He’s living the dream, I tell you, and we’re all grateful to Riley Hospital and the great team there for preserving Nick’s life during those critical days of his youth.

As a dad, I have to say that I’m especially grateful. One of the main jobs of a dad is to protect his wife and children – to be the firewall, either literally or figuratively, between his family and all that would harm them. But in Nick’s case, as his little one-year-old body struggled to thrive despite his broken heart, I couldn’t be that firewall: I didn’t have the knowledge or skills to save him; I needed help.

Riley Children’s Hospital was the help Nick needed, the answer to our prayers. Thanks, Riley, for being part of our family’s story, Nick’s story. And now, here’s Nick to tell you more of his story himself!
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Nick was privileged to share his story at the 2023 Saint Mary's College Riley Dance Marathon on April 15. The annual event raises funds for Riley Hospital for Children, which treats children from our area and provides critical life-saving treatments and healthcare services for children and their families.  For more information or to make a donation, follow this link. 

Share the Vision: A School Choice Testimony

The Marian community has been an ideal place for Nick to grow into his purpose and be part of helping others grow into theirs.

Read more...

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We're All Special Needs Children

“It’s not special or different or extraordinary needs that make the difference. Aren’t we all ‘special-needs children,’ after all? Addressing Nick’s particular needs took on urgency and required a steeper learning curve than some of our other kids. But the joys are the same. The gift is the same.”

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Excerpted from Jeannie Ewing's "Overcoming Tragedy: The joy of having special-needs children," which was originally published in Catholic Digest (February 2017).

Real Life

Originally posted on Facebook, July 12, 2013. 

Snowboarding is a world utterly foreign to me, but I'm intimately acquainted with Down syndrome.

My son, Nick, has Down's, and his very life is a window on a world of freedom and joy that I'll never know—except through him. Thank God he's here.

I was reminded of that when I read Dorothy Rabinowitz' WSJ review of The Crash Reel, a documentary about snowboarder Kevin Pearce, his brain injury, and his recovery.

Kevin's story sounds compelling in itself, but what especially struck me was the portrait presented of Kevin's family—especially his brother, David:

David is a riveting presence. He's the family's Down syndrome child, now a young man—urgent, full of passion for his adored athlete brother, the raw voice of anguish over Kevin's accident that the other members of the family try to contain in themselves.

This is what we parents of Down's kids know; it's what the world that aborts them at a rate of 9 out of 10 needs to hear.

Is Down's a piece of cake? No. Here's more from the Pearces:

Mia, Kevin's mother, recalls her initial fear—soon dispatched—that she might not be able to deal with a Down syndrome child. David, that child now nearly a man, reveals details of the unhappiness he feels when he thinks about his condition, a description impressive in its eloquence.

Unhappiness about his condition, but better off dead? Hardly. Life is hard and filled with challenges, but killing to eliminate challenges not only doesn't work—it's terribly, painfully counterproductive. Sometimes, more often than not, the very challenges we wish to avoid turn out to be priceless opportunities that lead to new life. We just can't see it yet.

And when it comes to Down syndrome in particular? I pray for a world that, like Mia Pearce, will dispatch fear instead of persons.

The Disappearance of Down Syndrome

Originally posted on Facebook, June 28, 2008.

If you can recognize the characteristic physical features associated with Down Syndrome (DS), try this experiment: Next time you're out in a crowd, take a look around and count how many folks with DS you can identify. How many? How old?

Chances are you wont see many, and the ones you see will be well into their 30s and 40s or beyond—an observation that would be consistent with documented demographic realities.

Why is this? What happened in the early '70s that so radically decreased the number of babies born with DS? Was there some kind of fantastic medical discovery back then that aided the treatment of this condition in the womb?

Guess again.

In a beautiful yet discomforting piece in the Wall Street Journal recently ("A Life Worth Living," 6/27/2008), Christine Rosen alludes to the real reason:

Between 80% and 90% of women who find out they are carrying a child with the chromosomal abnormality (which can be tested using amniocentesis) choose to abort. A Harvard medical student who surveyed 1,000 women who were pregnant with Down Syndrome babies reported that many were urged by their doctors to terminate their pregnancies; one woman's physician told her that her child would "never be able to read, write or count change." This at a time when new developments in medicine have nearly doubled the average life span of people who have the condition to 49 from 25 years.

So, it wasn't a medical advance that led to fewer babies born with DS, but rather the Supreme Court's decision in 1973 to make abortion legal in all 50 states. In other words, we're eliminating a disorder by eliminating the patient.

All abortions are abominable crimes, but killing preborn babies because they are viewed as "defective" is particularly revolting—especially when it becomes the norm. Again, Christine Rosen:

As a culture, we have made what Amy Laura Hall of Duke University Divinity School calls a "democratic calculus of worth" regarding Down Syndrome. And that calculus has resulted in a society hostile to people who refuse to make the culturally acceptable choice of ridding themselves of a disabled child before she is born.

Can we continue to call "civilized" a society that tolerates, protects, and even promotes this heinous practice? Or has our "teetering on the edge of collapse" finally shifted into a moral free fall?

Pray for an end to abortion. Work for its end. Protest accordingly. Vote accordingly.

And when you see a baby with DS say a prayer of thanks. That baby's very existence means that we haven't hit rock bottom just yet.

Our Living Icon

It’s 5:00 a.m. on a Saturday morning, and Nicky is shuffling into our bedroom. My wife has gotten less sleep than me, so I take Nick by the hand and we head downstairs.

“You get your newspaper, Papa,” Nick says, “and I’ll get a book.”

It’s our routine. I grab the paper from outside, scan the headlines, and await Nicky’s arrival with his chosen volume. As a father of seven, I don’t like to pass up opportunities for one-on-one time with my kids, especially Nick. He’s a five-year-old towhead with a mischievous grin and clear blue eyes. He likes Van Morrison and They Might Be Giants, The Wiggles and old Get Smart reruns. He has a great sense of humor, is quick to hug, loves to chase robins in the yard, and waves and smiles at total strangers.

Oh. And Nick has Down Syndrome.

Nick’s condition came as a surprise to us the day he was born—we usually avoid prenatal testing and ultrasounds. But once the midwife put Nick into Nancy’s arms, we could see the distinctive shape of his eyes and knew something was different—an observation confirmed by the midwife moments later.

As we sat on our bed, gazing at our newborn son, we were quiet, but it was a quiet borne of reflection, not grief. His physical condition meant nothing to us with regards to his inherent worth and dignity, with regards to his identity as our son. Those things were a given.

The Down Syndrome did, however, open up an entirely new spectrum of parenting for us. Nick has five older siblings, but he is our first child with special needs. And although I’m a nurse and a nursing instructor, at that point I had little experience with Down’s, so I knew we had some learning to do and some extra challenges ahead of us.

The first challenge came the very day Nick was born. Down Syndrome (DS) is a chromosomal anomaly that is associated with a variety of health problems, including congenital heart defects, so our midwife urged us to get Nick checked out immediately. We took her advice, and instead of Nancy and baby luxuriating together for a couple days, we all had to jump into the van and head over to the doctor for our son’s first exam. This was a disruption to our normal post-partum routine, to be sure, but no big deal.

The greater challenge came later, at the conclusion of the doctor’s examination. He said that, yes, Nick’s physical features were consistent with a Down’s diagnosis, although only a blood test could confirm it, and, yes, Nick should get an echocardiogram that day to rule out serious heart problems. But then he got very serious and made vague references to our “options” regarding our family and Nick’s future.

Our options? What, institutionalize him? Put him up for adoption? We were shocked—this was a Catholic doctor we were dealing with! Instead of encouraging us as parents of a newborn with special needs, he was almost apologetic. The unknowns associated with DS notwithstanding, we were giddy God had blessed us with Nick and excited about this new addition to our family. The Down’s didn’t define him then, nor does it now. Nicky is just one of the gang—with special needs, to be sure, but no less loved or valued. The doctor’s ambivalence about Nick confused us, even scared us a bit.

Turns out, we were right to be a little scared, for the world at large has little use for Nick. His very existence is considered by many to be a mistake, even an outright offense. Our society, you see, does in fact define Nicholas in terms of his Down’s, particularly the accompanying physical problems and developmental delays. So, to the world Nick is a problem that we could have easily dispensed with before he was born.

Babies diagnosed prenatally with DS are routinely aborted in the US today, with estimates running as high as 90%. In other parts of the world, the rate is even higher, and some predict the complete eradication of DS babies thanks to improved prenatal diagnosis and legal abortion. These statistical realities send a message loud and clear to families with Down’s children: You messed up when you brought your child into the world.

It’s a message both infuriating and depressing to those of us who know such children as glorious Imago Dei’s. We like to think of Nick as our little living icon—a window into the heart of God—and a reminder that we’re not put here on earth primarily to be productive, but to love and be loved.

A version of this story appeared on the University of Notre Dame Alumni Association's FaithND website. It is excerpted from a longer essay, “When Healers are Expected to Kill,” which appeared in the spring 2009 issue of The Sign of Peace, Catholic Peace Fellowship.

Good Morning, Walgreens!

On our way to church on a Saturday morning, Nicholas made a request for some music or a Bible story CD or something else to listen to. “No,” I said. “Not this time, Nick. Let’s just have it quiet as we get ready for Mass.”

We drove on, but I could sense Nick getting restless in the back seat. Finally, as he turned toward the window and spotted a drugstore, he blurted out, “Good morning, Walgreens!”

The whole episode reminded me of that scene in the Gospel of Luke where Jesus was entering Jerusalem and the Pharisees were trying to shush the crowd. “I tell you, if they keep silent, the stones will cry out,” was Jesus’ reply. And if stones can’t help filling a silent void when joy overflows, neither can a nine-year-old boy who’s excited about making his First Holy Communion the next Sunday. Good morning, Walgreens, indeed!

Nicholas has Down syndrome, and he is exuberant, naturally upbeat, and gregarious—all traits commonly associated with Down’s kids. Every day is truly a gift, and they treat it as such. Every encounter, a privilege; every discovery, a wonder. And the drive to Mass? Not a time for silence, but a time for celebration and joy and flinging out greetings to anyone (and anything) within earshot.

Are there particular challenges associated with raising a child with Down’s?  I suppose, but I’d prefer to put it this way: That Down syndrome itself is the challenge, not the kid affected by it. Sure, there are special therapies, and sometimes special surgeries and medications—all true. But raising any child is challenging—and every child has particularities to deal with, as do we all.

Besides, children are always a gift—the supreme gift of marriage, as the Council fathers taught us in Gaudium et Spes. And their status as supreme gift is not affected in the least by what and how many “particular challenges” they arrive with. Unlike our sad culture that has adopted a consumerist mindset toward kids—expressed in its slavish devotion to contraception, reproductive technologies, and abortion among other things—our Faith affirms the inherent dignity of every child, every human person, no matter their physical or other limitations.

And Nick? He is truly a conduit of smiles—you can’t help it when you meet him. I noted already that he’s receiving Our Lord in Holy Communion for the first time next Sunday, and I can’t tell you how many strangers he’s informed of the fact. Catholic or not, can you imagine receiving that kind of news from a kid like Nick without a rush of warmth? Maybe some tears even? And how long can I be down in the dumps, no matter how hard my day, if Nick comes over, plops down in my lap, and asks me to read another saint story or a chapter from Diary of a Wimpy Kid? Not long, that’s for sure.

Very briefly, say just a matter of hours after Nick’s birth, my wife Nancy and I gave some thought to how we’d adjust to having a child with Down’s. But you know what? It was really just the same as adjusting to all our other newborns—adjusting to receiving a gift, a fantastic, glorious gift. And that’s a welcome challenge any time. 

A version of this story appeared on MyYearofFaith.com, Diocese of Fort Wayne-South Bend.