Two years ago today, C.T. proudly introduced his baby brother to two of his cousins. At one point during their hospital visit, C.T. reached over to stroke his brother's paralyzed body and confidently used the words, ...when Zachy comes home...
He had gotten comfortable with the idea that his brother was here to stay.
The adults in the room knew that barring a miracle, despite Zachary's excellent prognosis and glorious first week of life, and despite the fact that he was well beyond the most critical period of sepsis, Zachary was never, not ever, coming home.
B and I were still in shock and denial ourselves, and somehow we had to break the horrific news of Zachary's brain hemorrhage to C.T. that night. We knew, in just a matter of hours, we'd destroy his world by explaining that his baby brother would die the very next day. There was no guide book, no way to make sense of any of it, no way to soften the blow for him.
By that Sunday, the 19th of January, we'd heard and explored all of the professional opinions. We knew the resounding guidance was to remove Zachary's life support. But, even as we were planning for the end of his life, I remember pleading with God to spare Zachary.
I told God I couldn't bear the burden of another dead son, that I'd die, or go insane and be unable to care for C.T. I told Him Zachary deserved to live, that he'd come through too much senseless suffering to be taken from us now. I received emails and messages from people who were praying for a miracle for Zachary, some of them linking me to real life miracle stories, as if we were just one prayer away from having our own. Believe. Don't lose hope, they said. The impulse for me was to beg. In helpless, looping, desperate denial, I was secretly determined for God to hear me and save my son.
I sat down with one of the neonatologists that day and, even after we'd agreed to the recommendation, I asked her to explain everything all over again. What happened to my perfect baby? How did it get this bad? Can we look again at all three brain scans to confirm what we'd been told? Are we sure we shouldn't try something else, something more, to save him?
The doctor first reiterated that they had already begun dismantling critical (long-term) life-sustaining aspects of Zachary's care, in preparation for the next day, when we planned to remove his life support. Then, after listening to her describe, in detail, the universally traumatic effect of his brain hemorrhage and his grave prognosis, she said the most excruciating words.
If we keep him alive and he survives at all, for any length of time, Zachary will probably never know who you are. He will never know you are his parents and that you love him.
Those words will haunt me for the rest of my days.