|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!
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.