“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”
– Maya Angelou
When our son, Finn, was just a few months old, I was reading bedtime stories with our daughter (Finn’s big sister), Frankie. A thunder storm was booming outside. In many ways, the storm reflected our lives at the time – we were trying to wrap our heads around having two very young children, while also trying to understand the medical complications Finn faced associated with having Down syndrome; there was a steady storm of appointments, unknowns and learning that we were doing our best to manage.
As I closed the last book for the evening, a huge thunder clap boomed outside. Here is the exchange between Frankie (20 months) and I that followed:
Frankie: What’s that, Daddy (wide eyed)?
Me: It’s just thunder, Love. It will stop soon.
Frankie: I’m brave, Dad.
Me: I know.
Frankie: I’m not afraid of anything.
She then rolled over and promptly fell asleep with the storm crashing outside her bedroom window. Maeghan, my wife, tells our kids the same thing every night before bed; you are brave, kind, smart and strong. My conversation with Frankie that night helped me understand that our kids are listening to and watching what we do, all the time. In that moment, I knew that we had to be brave examples for Finn if we ever expected him to show the courage necessary to overcome the challenges that would surely be placed before him. Ultimately, we want what every parent wants for their child; for Finn to be independent, happy and make a positive impact on the world around him.
When Mae was 10 weeks into her second pregnancy, we learned that our child would be born with Down syndrome. In that moment, we did not feel courageous at all. We were scared of the unknowns and mourned some perfect life that we had anticipated for our baby. We feared that our family, friends and community would not accept our son because of his disability and that we would be isolated.
Turns out, we were afraid of all the wrong things. Finn is loved, welcomed and supported by his community. What we did not anticipate or adequately prepare for, was some of the medical complications connected to Down syndrome. While we were aware that in addition to intellectual and developmental disabilities, children with Down syndrome are at an increased risk for certain health issues, we also knew that every child is unique with their very own strengths and difficulties.
We quickly found out what this all meant for Finn. As a result, we have spent countless hours at CHaD for any number of conditions including Finn’s congenital heart defect, hypothyroidism, hypotonia, sleep apnea and digestive problems. This means visits with pediatric cardiology, endocrinology, and gastroenterology, to name a few. Our visits have ranged from a routine one-hour appointment to a multiple week extended stay, thanks to a lung infection when Finn was 18 months old. We know these visits will continue and Finn will have a lifelong relationship with ChaD – because of his heart defect, he will see a pediatric cardiologist for his entire life. While hospital visits can be challenging, we are grateful for this connection to CHaD.
Before Finn, Maeghan and I had very few interactions with hospitals or the medical world outside of check-ups and garden-variety sickness. During Finn’s initial appointments, we were guarded and apprehensive; constantly bracing ourselves for bad news. But what we discovered quickly is the staff, volunteers, doctors and nurses at CHaD bring a secret ingredient to how they care for children – the ability to make families feel strong and courageous during those very scary moments when they are exceptionally vulnerable.
I have a tendency to ask LOTS of questions when I’m anxious or afraid; it usually buys me some time to work through a troubling thought. As someone who received a mediocre grade in high school anatomy and physiology and has virtually no medical training, the answers we received were often confusing to me (Mae’s yoga background and training helps her in this department). If we didn’t take notes, I rarely remembered what the doctors and nurses told us. But we always remembered exactly how we felt walking out of an appointment (or an extended stay) at CHaD. We felt listened to, respected and supported. We were also able to advocate for our son and felt that we were doing so in a safe place. The CHaD community always made us feel courageous in the most difficult moments.
Finn is now 3 years old, and is as brave, strong, kind and smart as they come. He shows us how to be courageous every day; building friendships at school, climbing to the top of any playground and engaging in therapy to develop his communication and motor skills. He is bringing us a life full of light and inspiration. We attribute his confidence and positive attitude at medical appointments to his experiences at CHaD. He arrives at every appointment with a smile on his face, pulls up his shirt for the doctors and nurses to listen to his heart and blows everyone kisses before we head home.
We still have our scares; Finn will have heart surgery just after his 4th birthday. We know Finn will be giving out hugs and blowing kisses all the way into the operating room, inspiring us to find the courage to get through weeks of his recovery. As parents, we are very afraid. But we know we can tap into our bravery bank because we are surrounded by genuine kindness and caring that allows us to transcend the fears we may face related to Finn’s surgery.
We know every child at CHaD has unique health challenges. We also know one thing remains consistent – how the staff, docs and nurses make every child and every family feel courageous when they need it most. They understand when a family is struggling – maybe having a tough day because your child has been in the hospital for weeks and all you want for them is to be on the playground. At CHaD, they also understand that the cure for any illness is not only in surgery and medications but also in positive relationships and community.
This is our third year running the CHaD HERO for our team, Finn 321. By participating in the CHaD HERO with our family and friends, we again honor the overwhelming support and love of the CHaD community. We will always remember how CHaD made us feel when faced with medical challenges. Our hope is that every child’s visit to CHaD is like Finn’s – filled with compassion, kindness and, of course, courage.
Join us this year and look for Finn out on the course to get a little #Finnspiration.
– Finn’s Dad, Luke Webster