“Hopefully ever after” is not the fairytale ending any new mother wants to hear after the birth of her first born child. Yet that’s all the doctors could promise me as they whisked my newborn baby boy out of my arms and into the neonatal intensive care unit (NICU). They would later tell me and my husband that Max had a life-threatening heart defect (Tetraology of Fallot), and that he may not survive.
When Max was just three months old, we were told he would need a pacemaker – and were promptly given a brochure featuring only elderly patients – we only felt more lost, more concerned, more scared. I was worried we wouldn’t be able to raise a normal kid and that Max’s life would be limited. The lack of age-appropriate information available for a child with congenital heart disease only made us feel more isolated. All we wanted was comfort, assistance and understanding during this time of unknowns but we didn’t know where to turn for information or help.
This was back in 2004 yet still, I instantly feel that same sense of helplessness anytime I think about it. I kept journals from our family’s first few nights and months in the NICU that were meant to be updates to share with out-of-town family members. Over time, they turned into a detailed account of my emotional journey through motherhood and being the mother of a sick child.
But my story is one of hope and survival. My amazing Max went on to pursue the dreams we feared he’d never realize and become the boy behind the mask of last year’s popular Super Bowl commercial, the one that featured a mini Darth Vader using “the force” to start the family’s Volkswagen. To us, Max is our “force” – our living, breathing miracle. His journey continues to inspire us to try and help other parents who are going through what we did.
My husband, Max, our younger son and I are now pediatric care advocates and have been able to inspire change in many ways. St. Jude Medical makes Max’s current pacemaker and they reached out to us after learning of Max’s story. My husband and I were able to share our story and frustrations, and when the company realized there were other families like us who found resources to be lacking, they asked for our help creating a brochure for parents of “mini-recipients” like Max. The brochure just came out and St. Jude Medical also features our story on their website.
Every day I’m amazed at how far my son has come and every day our ordeal as first-time parents crosses my mind but almost 8 years (yes, my baby is about to turn 8!) after we were given the horrifying news of Max’s health concerns, me and my family have come out on the other side.
I know there are others out there who either know of, or are a part of a family like mine and I hope my story of survival and hope can help anyone else parenting during a child’s health crisis.