The name first came to me a while back. Long before we decided to create an organization dedicated to supporting other families like ours. It was before Olivia passed away. Even before we learned of her diagnosis.
It started with a story about medical school. In the medical world when diagnosticating, zebras and horses are used to describe rare diagnoses and common diagnoses. Doctors are encouraged not to overlook the obvious in search for something rare and unsual.
“When you hear hoofbeats, think of horses not zebras.”
This aphorism was referenced many times in our search for Olivia’s diagnosis… Test after test came back normal, ruling out one diagnosis after another, and our favorite and most trusted doctors would say something along the lines of ‘Oh she’s definitely a zebra.’ The reference struck a cord. Especially because zebras had originally been a focal point of Olivia’s nursery, inspired by a Gray Malin print. I couldn’t let this coincidence go. And to me it became about more than just the diagnosis, the disease. In my mind it grew to be a symbol of Olivia herself. A symbol of what made her unique. A way to recognize, not hide from her differences. And suddenly the symbolism just kept spreading. Soon my mind used zebras to represent all of the children we were encountering in our journey. The other babies in the NICU. The children of families who had been here before. Other children whose diagnoses were rare. Other babies whose lives were lost too soon.
Add in the color pink, and you’re looking at something quite special, no? Something magical, and one of a kind. Something bright, something colorful. I wanted to use the vision alone to send a message to our children that they should dream as big as their minds will let them, that they can be anything or anyone they want to be… and let it serve as a reminder to us as parents to find the joy in every moment, to seek out the beauty, to remain hopeful.
And finally, why we decided to call us a club. Fortunately or unfortunately, those who have experienced a child in the NICU… and those of us who have lost a child, well, we are a part of a club. It’s a terrifying and often tragic club that no one ever asks to join. But it is simultaneously filled with so much love and compassion; its members are surrounded by so much support. We are among the few who have walked in the shoes of these families, we have suffered and we have grieved, and yet we have survived. We are among the few that understand. We are a part of a club that no parent wants to be a part of, and yet here we are.
So to me the name The Pink Zebra Club represents all of us who have been a part of child’s journey with critical medical needs, both in the NICU and in infant loss. We are parents, siblings, grandparents. We are the doctors and nurses and therapists who work tirelessly to save our babies. We are the friends and family who support one another each step of the way. We are the families who have survived our worst nightmares, and we’re now committed to supporting other families like ours.