You have probably never heard my son’s name, Max Page, but you might recognize him. He was the mini Darth Vader in the 2011 Volkswagen Super Bowl commercial.
Soon after it was aired the commercial went viral and the media was tracking the kid under the mask. We gathered as family and decided that it would be our privilege and honor to share his identity with the world and represent the other families across the country facing congenital heart disease – the Heartland community – and bring much needed attention to our plight.
We weren’t sure what we were signing up for, but shortly after we agreed to a press conference – the Today Show summoned for Max. That marked the beginning of many different types of public speaking engagements, and how I eventually signed on to speak at the Heart Institute’s Family Education Day at Cincinnati Children’s.
But allow me to digress and share Max’s journey with congenital heart disease, and how we coped as a family, because I think it’s one that other families in the Heartland can relate to.
Oct. 7, 2004, my son Max was born with the congenital heart defect – Tetralogy of Fallot. We were in the “unaware” camp and it came as a total surprise. My seemingly normal pregnancy, soon found us praying for our newborn to simply live. Suddenly, nursery themes and go-home clothes were meaningless. Tests, procedures and making sure family members reached town in time became top priority.
I remember not even knowing what to pray for. I was disoriented by the experience and none of it seemed real. I do remember begging for a chance to know Max – not a lifetime – just a chance.
We were assured his survival rate was good, but he required open-heart surgery. Likely one surgery should fix him and then life could start again. We held tightly to the hope it would be in the rearview mirror soon. Stay positive. Stay strong. It’s almost over.
At three months of age, Max went to the operating room for the first time. A week later he would require a permanent pacemaker. A few months later, a Heterotaxy diagnosis and an intestinal surgery. Surprises were bombarding us from all angles and I couldn’t gain my footing. The scope of his possibilities seemed to be narrowing daily. I put up a wall to shield me and went numb emotionally. How else do you survive the constant barrage of appointments, needles, blood draws, fasting, diagnosis, and surgeries? Endless torture for all of us.
Max is now 10 and has endured 9 surgeries (not all heart related). I have learned a couple of things as we grow up in Heartland together. There is no rearview mirror. This journey is all around us at all times. Life is lived an appointment at a time. Each day we subconsciously track slight nuances in our kids and balance between overprotection and common sense. The most important place is here and now and the goal is always forward.
Max gains his strength and his attitude from his dad and I. I had to take a close look at how I was living. I was comfortable in the denial of the “I’m fine” mentality and prideful that everyone thought I was so strong. The truth is, I was withering away on the inside. Desperate to know what peace feels like. Wondering how I could release this trauma from my bones, take a full breath and actually sleep through an entire night.
In order to raise a healthy and emotionally stable son I had to figure life out. I needed new coping skills and I chose gratitude and service as a way to engage and make a difference. Spreading gratitude began by comfort items for other families, encouraging a newly diagnosed family, and over time led to speaking engagements for the hospital and even lobbying Congress for Children’s Hospital Association.
Over the years, I learned that our story has power and purpose. I was thankful that other heart survivors before us had publicly shared their story so we could be inspired by the possibilities of watching our kids snowboard, swim and thrive. February 2011 caused us to pause and ask ourselves if we were ready to share our 6-year-old son and his heart disease with the world. And we’re glad we did because it’s given us the opportunity to help spread awareness of congenital heart disease.
Life since then has been about saying yes before we say no to anything that brings attention and momentum to pediatric healthcare. I encourage you to engage your kids in giving back. Start small. Set a goal and include their friends. There are limitless ways to support our hospitals for all ages and all giving levels.
Do I wish Max’s physical endurance could outlast his will? I do. Do I wish he could zip around on a roller coaster? I do. Do I cry every time he is limited by heart disease? I really do! I would trade my life for his if it meant he could live with a fully functioning body.
Those are only what ifs. The reality is we were chosen to be a Heartland family. We choose to matter in the moment, enjoy the gift of today, and grow up gracefully in Heartland.
Editor’s note: Jennifer Page will be speaking at the Heart Institute family education day at Cincinnati Children’s on Saturday, November 8. This all day conference is for parents, guardians and care givers of children with heart disease as well as adults with congenital heart disease. For more information and to register, visit our website.
Photo credit above: The Force Volkswagen Commercial 2011
My daughter was diagnosed with Tetralogy of Fallot too. She had open heart surgery at 9 months of age, at 4 years old & angioplasty last year at the age of 12. We had her annual appointment today and no better news than hearing see your child’s cardiologist say “see ya” next year. Blessed to be a part of the “heart” community at Cincinnati Children’s Hospital Medical.