Happy Birthday, Zane!

It’s hard to believe it had been four years since you were born; four years from the time we heard the words: “He will die.” The stats were laid out for us like tarot cards: at least 90 % die in utero or shortly after birth; less than 10% survive to celebrate their first birthdays. Yet here you are today—December 22nd—at four years old. You have shown so much strength, demonstrated tremendous resiliency in that time—surgery, a second brush with death in the PICU, unending therapies, countless doctors’ appointments, specialists galore, trips to children’s hospitals, discrimination, and a death sentence based solely on your Trisomy 18 diagnosis. And yet you smile everyday with that amazing smile. A grin that calls forth a light in everyone you offer it to. You touch so many people with your will to progress and your will to live.

Your life has been (and continues to be) a gift to me. Sure, it is not always easy. Care is extensive and involved. But it is so worth it. It pales against the effort you put into life. You are required to try harder than anyone else I know to do the simplest things: to sit independently, to walk, to eat by mouth, to communicate your needs. You have taught me more than anyone else—without ever speaking a word. Compassion, living in the moment, appreciation, gratitude—all of these words have taken on greater meaning since you were born. You inspire me to be a better person and have helped me to glimpse spiritual purity: What life must be like without judgment, preconceived notions, and discrimination. I love you for all of this. But most of all, I love you for you.

Happy 4th Birthday, Zane! I am so proud to call you my son.