In a certain sense, we all start dying as soon as we are born, but with my son Errol’s birth, death approaches immediately. On the fifth day of his tenuous life, Errol undergoes open-heart surgery, and six excruciating weeks later, we bring our fragile baby home to begin a very different life than we had anticipated.

Errol is born with a significant heart defect and cognitive disability that prevent him from walking or talking and demand our constant vigilance. As we grieve the child we had anticipated, Errol’s full-bodied smile and irrepressible laugh turn our sorrow into joy, and teach us the gift of the unexpected. Tolstoy wrote, “When you love someone, you love the person as they are, and not as you’d like them to be.” And we love happy Errol with all our hearts.

When his cardiologist first examines Errol, he tells us our son will be a million dollar baby. I laugh. He doesn’t. I cry. Our out-of-pocket medical bill for Errol’s first year of life is a staggering $24,000. And that doesn’t include the normal baby gear like formula, diapers, and vodka.

Inspired by Errol’s delightful spirit, friends, family, and neighbors rally to support our significant emotional, physical, and financial needs, through countless acts of selfless generosity. Our tireless neighbors form a group called Seeds Of Love For Errol and plant gardens, tend fruit trees and make jars of fig preserves for a community dinner to raise money for Errol’s medical expenses.

Oscar Wilde said, “Life is too important to be taken seriously.” And Errol thinks just about everything is funny: playing peek-a-boo is funny, his big brother Owen jumping to the bed from high on his dresser is funnier still, and his lusty pomeranian humping the distressed cat is hysterical.

Errol arrives home triumphant from his third open heart surgery, and our neighbors throw the biggest dinner party imaginable, complete with the food have grown and cooked, a silent auction, and a hillbilly-punk band. It is a miraculous evening that raises over $70,000. We can’t believe our luck!

Although our medical debts are paid, Errol’s health is deteriorating, and two weeks after the Seeds Of Love celebration we rush to Duke Hospital, desperate to save Errol. Despite the heroism of our doctors, and the unfailing support and love of our friends and family, Errol’s courageous heart finally fails him on December 23, 2009.

One afternoon, searching for solace, I glimpse Errol in the words of William Blake,

Some are born to sweet delight,

Some are born to endless night.

Now that Errol is gone, so too is our delight, as if an eclipse has blocked the sun. In these bleak days and nights, as much as I think about Errol, I can’t ever think him back. It is like riding a merry-go-round. You travel for a long time but you never get anywhere.

But we keep going, mostly for Errol’s seven-year-old brother Owen, who has suffered enough already. Through counseling, art therapy, grief camp, balloon releases, and by listening hopefully for the echoes of Errol’s brilliant laugh, we work hard to keep hold of Errol. One afternoon, Owen’s mother finds a crumpled page that Owen has written, “I really miss Errol and I wish he were still here with us. Errol was so great to me.”

One morning, out at breakfast with Owen, a frail woman totters up to us, her eyes gleaming. She has read Errol’s story on a blog I keep. “Errol got me through the ICU.” She trembles, “I kept thinking about that sweet little boy and he helped me make it.”

All this time I thought we were the ones to save Errol, but it was Errol who was guiding us out of the darkness with his joyous smile and ringing laughter.

Jonathan Milner 2010

Tags: anger, belongings, funerals, money, Depression, guilt, signs and connections