In the afterword to her book The Cure: How a Father Raised $100 Million–And Bucked the Medical Establishment–In a Quest to Save His Children, author Geeta Anand writes:
As human beings, we are defined at our cores by how we respond to hardship. Writing about the Crowleys has taught me that there isn’t one right way, but that each person must find her own path, drawing on her own unique strength, passion, and resources. Who can say whether John’s or Aileen’s role is more important? Fueled by love, each of their journeys is tough, vital, and courageous. Knowing that each day really may be their children’s last, they live with abandon, throwing themselves into every birthday party, trip to Broadway, weekend in Ocean City. Knowing so intimately the tenuousness of life, they instinctively understand what most of us forget — that all they really have, and all they are really pursuing, is time — time with the people they love. And so they grab onto each precious moment, cherish it, celebrate it, laugh at it, cry in it, and hope for another — even as they continue on the journey into the unknown and the unknowable that we call life.
It’s an extraordinary book. When his kids are diagnosed with a rare muscular dystrophy disease, John Crowley re-focuses his life on finding a cure. Geeta Anand, a Pulitizer Prize winning reporter for the Wall Street Journal, does a fantastic job illuminating how far a parent will go for his child, even if it calls for ethically questionable actions.
While reading this book in the lobby of my condo (waiting for my wash to be done — yeah, I’m a man now) — I saw a blind woman walk out of the elevator with a guide dog. They walked together out into the frigid Boulder climate. Seeing a disabled person attempt to live her life while reading about two young children whose muscles dystrophy to the point where they can’t even smile (let alone walk or raise their hand), reminded me how lucky I am to be 100% functional, and frankly, how much braver / stronger than me those who struggle every day really are.