Showing posts with label Dance Marathon. Show all posts
Showing posts with label Dance Marathon. Show all posts

Thursday, June 26, 2025

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.

Saturday, April 22, 2023

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