Editor's note: There’s something you might not know about the star of the year’s biggest television ad from the Super Bowl. Max is only 6 years old and he’s already had eight surgeries for his heart condition. This weekend, he gives Dr. Sanjay Gupta an inside look into his life and explains what he’s doing to help other sick kids. Watch "Sanjay Gupta M.D." at 7:30 a.m. Saturday and Sunday.
In this post, Jennifer Page shares what being Max's mom has taught her. “Kiss your baby. He has to go to the NICU. We have found structural damage to his heart,” said the neonatologist. In a split second, life changed forever.
As they pulled him from my arms I sobbed, “I love you, Max,” over and over. My tears covered his sweet face. A new mom with a baby I couldn’t hold, a baby I couldn’t protect.
I remember my first visit to the NICU to reunite with Max. He was so small, lying in a scary-looking bed. Wires everywhere and a piercingly loud machine beeping. As the discussion swirled around his head about what was wrong with him, I bent to his ear and kept calling him “my perfect son."
He was mine and he was perfect. Somehow we were going to figure this out.
Max was diagnosed with a congenital heart defect called Tetralogy of Fallot. At 3 months old he had his first life-saving heart surgery. A week later he had a pacemaker implanted. When he was 7 months old, we found out he had several spleens and required surgery for a malrotation of his intestines.
The first year of Max’s life was full of surprises. Medically, it seemed that one doctor visit led to two more referrals and four more appointments. He endured more painful tests, procedures and surgeries than I knew was possible. The surprises were relentless.
In turn, I put up emotional walls and felt numb most of the time, afraid it would hurt too much if I let my guard down.
But not Max! He was vibrant and strong. He knew from birth his role was to fight. He cried to get the nurses' attention, then warmed their hearts with his big blue eyes and soft hands.
Somehow, in all that he endured that first year, he never seemed like a sick baby. Alarms beeping every two hours for medicine reminders, chalkboard symptom charts and reams of insurance papers made it seem otherwise.
Focus was Max’s biggest lesson for me the first year. Focus on the task at hand. Focus on the moment instead of the past trauma or future fears. Focus on appreciating the miracle milestones that we routinely take for granted.
Focus on love. I love to listen to his sweet voice float through the air. I love the way he mumbles in his sleep. I love the way he stares into my eyes. I love that we hold hands when we are scared. I love the way the doctors mend him. I love that it is my job to heal him with love.
Focus on today. We have Max - today. He is here right now to be nurtured and enriched. He is here to be challenged and loved. He is here to laugh and sing. He is here to play golf with his family and climb in the park. He is here today and I know I am one of the lucky ones. I get to raise my perfect son.
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I laughed and rejoiced as I watched that VW Darth Vader commercial during the Super Bowl earlier this year. It was a in my opinion the best commercial of all because it alluded to one of my favorite movies of all times coupled with one of the reasons why I love being a mom: being part of a child’s innocent and imaginative world.
Later I found out that the little boy that played Darth Vader, Max, had undergone heart surgeries, but little did I know about the series of surgeries he’s faced throughout his life mentioned in this article.
Every night as I put Miss B to bed we pray together for her guarding angel to always protect her. Every time I kiss her good night, I try to stamp in my memory what it feels like to kiss her lips, to touch her golden curls and smell her sweet smell. In a blink of an eye she will be a grown up and I won’t be able to be there every night to pray, read her stories, tuck her in and kiss her good night. And I will probably be like my Grandma wishing that I could turn back time. This feeling is so insignificant and even shameful if compared to what a mom might feel when a kid is taken away from her for serious medical interventions or even to go to heaven.
We are taught that God won’t give you more than you can bear. I feel I am in no manner qualified to go through something that slightly resembles what Max’s Mom and their little angels have endured. I know I am neither privileged nor free of being subject to illnesses so I pray every day that the Lord guard us and keep us from all evil and sickness in our family at least while Miss B is little and focus on the present.
I can’t imagine how painful and heart wrenching it may be. Yet, those moms are strong, focused and resilient, just like their little angels. Maybe that is the secret, moms get their superpowers from their sick kids. That is possibly the lesson to take away. Kudos to Max’s mom and all the moms out there being strong for their babies.
“ May the Lord bless you and keep you. May the Lord make his face shine upon you and be gracious unto you. May the Lord lift his countenance upon you and give you peace”.(Number 6:24)
Amen.
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