I’ve never really been that into ducks. That said, recent events have done a lot to change my perspectives on a number of things.
Over the last few years, I’ve helped to coordinate the Cioffredi & Associates Volunteer Massage & Recovery Tent at the CHaD Hero. It’s been a wonderful opportunity to give back to the community that has been our home for over three decades. I am proud of Team Cioffredi’s contribution, amounting to hundreds of hours volunteered and thousands of dollars raised, and feel privileged to be part of this effort to support kids and families. This year, however, supporting the CHaD Hero hits home on an entirely different level.
Four months ago, my family had the worst experience of our lives. My daughter, Aurora (Rory) was diagnosed with Beckwith-Wiedemann Syndrome (BWS), a rare disorder that affects less than 0.01% of children and puts her at high risk for developing abdominal tumors. Our very first routine ultrasound screening manifested our worst fears, revealing a non-operative, abnormal mass in her liver. We struggled to understand how our healthy toddler could be sick, what we would need to put her through to diagnose and treat her, and how we could possibly explain it to her. I can’t begin to explain how terribly surreal and utterly debasing it felt. A lot of what happened over the following chaotic hours and days is fuzzy, but a couple moments will always stick with me:
Rory clutching on tightly to the plush duck the social worker gave us after learning of her fondness for them before her MRI… Holding my confused and terrified little girl tightly as the doctors sedated her… Crying inconsolably over a turkey sandwich while my wife, Jenaya, held me… losing the quickest game of war I have ever played to Jenaya in the Garden of Hope hoping to distract ourselves while we waited for results… Saying over and over, “She’s going to be the best she can be. We are going to give her the best we can”… And then getting the surprising call that there was absolutely nothing abnormal on the MRI. The confusion, relief, tears, joy. The hugs and warm touches from seemingly everyone, the unending stream of support… Rory waking up, loopy, hungry, and quite upset by it all.
When I reflect back on it now, what stands out in the haze is the acute tenderness and sincere humanity of it all. The entire CHaD team treated us with a profound level of respect and empathy that amazes me. Every person we interacted with was knowledgeable, comforting, supportive, and caring. We never felt alone.
We still don’t know exactly what happened with that first test. We recently went through another round of the routine screenings Rory will need every three months for the rest of her childhood. I’d be lying if I said that I wasn’t anxious and fearful, but the Child Life team provided help, distraction and comfort throughout, for both Jenaya and me as well as Rory… And luckily there was nothing abnormal on the screen this time. There are many more to come, but I know that regardless of what happens moving forward we are in the hands of some incredible people that truly care about us and our daughter. I wouldn’t want to be with anyone else.
For now, we are the lucky ones. I don’t pretend that our small scare compares to what many other families are going or have gone through. But I got a small taste and it shook me to my core. It gives me a deep appreciation for the power and resiliency of others that are living through their worst fears and my heart goes out to them. And that’s why I feel that CHaD’s services are so important. Every kid deserves the kind of care and support we received. Every kid deserves a plush ducky to hug tightly when they are scared.
Suffice it to say, I am more motivated than ever to continue supporting CHaD this year. I certainly am reminded of the kindness and value of their services daily as Rory cheerfully quacks along with her little duck on our living room floor. While Team Cioffredi won’t be able to volunteer onsite this year due to COVID, you’ll still find us out there running, fundraising and giving back in any way we can. I hope that you are able to lend your support as well. Together, we can put ducks in the arms of all the scared kids (and maybe a few dads) out there.
— Matt G., Rory’s dad and captain of Team Cioffredi
You’ll find Matt and Rory out exploring the Upper Valley most weekends, rain or shine.