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.
Oh, Gretchen. Your poor, poor baby. You and your family are in my thoughts these terrible January days.
ReplyDeleteThank you, Jen.
DeleteGretchen - I am so so sorry these words were uttered and that you have to live with them, and the reality they carry.
ReplyDeleteIt is still daytime but after reading this, i felt the need to do something, however insignificant, so there is a candle burning here for Zachary.
My thoughts are with you and your family. xox
Thank you, Typhaine. I am also holding you close in thought as Paul's anniversary approaches.
DeleteGretchen,
ReplyDeleteWhile I am only once bereaved, I know the pain of making that decision to let go - it is the worst and haunts me too. Though I know consciously it would have been cruel to "keep her going - for another year or so". I too heard the doctors opinions. I too prayed. What a waste. Nature had decided. My daughter, had she lived, would have spent her short life hooked up to feeding tubes to her heart, catheters, suffer infections,organ failure, and possibly stroke. I bargained for God to take her. Don't make us decide. 17 days of trauma as her prognosis became more and more grim.
I don't know why that Doctor said that to you. Of course Zachary knew you were his parents and loved him, perhaps not on a conscious but definitely on a spiritual level. The simple act of letting go to spare him prolonged suffering is the greatest act of love and selflessness a human being can give. You show you love him now and always. Zachary knows. B.W. Knows. Heidi knows. They must.
I felt I knew the moment when my daughter's soul left her body, before it physically shut down. It makes me sob to think of that moment but gives some strange comfort too.
My heart is here with yours in pain and longing. Kim
Thank you, Kim. One of the most difficult things for me is that nature didn't decide Zachary's fate. Carelessness and negligence did. His illness was both preventable and treatable, and their response to the latter was much too late, triggering septic shock and the brain hemorrhage which stole my baby forever. We went from "feed and grow him and get him home" to "we need to remove his life support" in a matter of a few trauma-filled days. It was so unexpected, so senseless, that I couldn't get it to register as real in my heart. I am still baffled by all of it. So, as much as those words (from the female neonatologist) burn, and will forever, they might have been the first words that penetrated my inability to fathom any of what was happening to Zachary, if that makes sense.
DeleteYour poor girl. I am so sorry Heidi suffered for all of her 17 days. It seems so utterly pointless. Hugs to you and thank you for your kind message on Zachary's anniversary.
Yes, it makes sense. I feel angry at the medical system reading your words. How terribly they failed. I can imagine the fact that this should not have happened only complicates your grief. How can you ever accept it, ever? So sorry.
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