Waiting, Changing, and Fighting

People often ask me “How do you keep going?” It’s a silly question.

Quincy Behind Bars

My daughter is in the CICU at Children’s Healthcare of Atlanta – Egleston, and if you want to know more about it you can follow on her Facebook page with more pictures and updates and stuff.

If you know me personally, or you’ve read some of my past stuff, you’re aware that fourteen years ago I spent seven days in the NICU with my first child. He didn’t survive. It was very difficult.

An ICU stay with my infant child is pretty much my personal worst level of hell; it’s the nightmare I can’t wake up from. I can safely say I would rather entertain rabid howler monkeys with a sock-puppet made from my own scrotum than spend so much as one more minute in a C/N/PICU with my child. And yet, this is the ticket that I’ve punched, this is the journey that I get to make again. Continue reading

A Heart for Quincy

The hiatus has been long, so let me catch everyone up (ninety-nine percent of you are already aware, but let’s play along anyway): Amy and I had a daughter on June 14th. She went immediately to the NICU at St. Mary’s hospital. Seven days later she was lifeflighted to Children’s Healthcare of Atlanta at Egleston…where she remains to this day waiting for a heart transplant, listed as a 1a Milrinone and hospital dependent critical-care cardiac organ recipient.

Which is sort of a way to say she’s at the front of a very scary line waiting impatiently for a very scary thing to happen.

If anyone is interested you can read more details and follow along on her fundrazr page or read up on her Facebook page.

I’ve been trying to process a lot of things about this experience, and some of that is yet to come. First, let me start with a picture of our little girl and a piece I wrote while sitting in the CICU one night as we waited for the initial tests to reveal a path that we could follow.

Quincy in the CICU

The Lair of Broken Hearts

This is the lair of broken hearts.

Every journey here is deliberate, crossing mountains and valleys, through forests and over rivers, to a city far away. Our truck has become the Argos, and we are seeking something more valuable than any golden fleece.

It is guarded by magic doors that you do not touch, opening by their own power when you speak the magic words and the guardians grant you entrance.

Time means nothing here. Hours flee in moments and minutes stretch out for days.

This is the limbo of the incomplete. This is where babies lay like broken toys, unfinished, and praying for their time in the sun. This is where children sit, alone and silent, less than what their parents prayed that they would be.

None are brought here whole.

This is the lair of broken hearts.

The adults who come here, come to visit, or come to vigil. This is where dreams die. Plans are shredded. Futures change forever.

A couple stands stony and silent, side-by-side, gazing down at an infant nearly concealed by equipment and tubes. No words can express what has slipped from their fingertips, what expectations are lost to time. Lost to change. Just lost.

A man sits on one side of a crib, a woman on the other. The space between them is ice cold and hovers over the body of a toddler, silent and unmoving. Outside observers cannot tell if the man and the woman shared the heat of love before coming to this place, or if they brought the arctic inside with them.

A baby waits alone in a corner, critically ill, no one ever comes to see him. The journey and the guardians are too much for some to endure. He becomes a cypher in a dark place who dreams no dreams of tomorrow.

This is the lair of broken hearts.

Those who tend this place risk becoming like their wards. Bright-eyed newness is ground down to pragmatism, and even that is worn away by the forces of this place. Where time is meaningless, Eternity can hunt down optimism at its leisure. A sunny disposition is an easy target in the endless gloaming dark.

Nurses wear an armor edged in a jaded gilt, reenforced with the shuddering strength of knowing that tomorrow will be no different from today.

A doctor walks from a room where an abandoned child has become more machine than flesh and blood. His eyes hide tears, and he struggles to pull the curtain of his expression across the storm that rages inside of him.

This is the lair of broken hearts.

The river styx flows behind every bed. The Ferryman waits patently, his handiwork is unmistakable: A bed surrounded by pumps and ventilators and monitors and the undivided attention of many through the night; empty and silent under then next day’s sun.

We pray that the miracle happens, that the angels come, that the gates are thrown wide and our child is the lucky one, the one who walks and dances and escapes into the light. There is guilt in feeling like our child is more whole than another. Parents do not make eye contact. Each exists in a bubble of their own hell.

This is the lair of broken hearts.

We come here by choice. We sit here by choice. We wait here by choice. We could be nowhere else and feel whole. But we cannot feel whole in this place either.

This is the lair of broken hearts.