The NICU doctor said it’s often harder for parents with children with brain damage to make the decision. The baby looks so perfect on the outside. It makes the decision to stop intervention and life support hard because they can’t believe this perfectly healthy looking baby is unable to survive on it’s own.
It wasn’t harder then. Not in the NICU. At that time, I could see exactly what was happening in ways that I cannot now. I could see this baby, almost completely unresponsive, but for a reflex here, a grimace there, a weak squeeze of his aunt’s and then his dad’s fingers, just once each. This was not a viable baby. I could see that.
So, I studied his perfect outsides. His wrinkles and rolls. Ill-shaped toenails on giant feet. Chubby, round cheeks, squat little nose. Forehead birthmark, big ears, dark hair, impossibly soft, as was his skin. Never bathed until a couple hours before he died, covered in dry vernix and blood. In the home-birth world, we don’t wash babies right away, so I kind of liked that he got that. Though my foggy mind begins to recall that no bath keeps baby with mom, which obviously makes that moot in our case.
He grew so perfectly in there. All of that energy. Food and calories, genes and cells turned into this perfect, little human. Big, to my eyes actually, almost 2 pounds bigger than my other newborn. We did such a good job growing him, he and I. We didn’t know then what we know now. That it was a structural problem. That it was his brain, not his heart. My artery, not my uterus. Not the birth at home away from machines that could have saved him. Just the risky business of being born, the mother’s faulty body, perhaps an unnoticed slip of the scalpel the first time a surgeon was in there. Because brain death doesn’t show up on the fetal monitor. No symptoms because the only symptoms of a ruptured artery is death within minutes. Because a slow bleed and whatever magic had to happen to stop it so I survived, unmonitorable and unknowable.
It wasn’t harder there in the NICU: perfect outer body, ravaged organs, almost nothing salvageable to donate. The only trouble on the outside comes from the irritation his skin reveals after the endless amount of tape starts coming off. I thought, “Uh oh. Maybe he is allergic to adhesive.”, like it mattered. I can understand that he’s perfect on the outside and dead on the inside. I can see that: eyes never open, eyes, mouth and nose oozing tears and yellow fluid, limp and lifeless, each breath taken is forced out, heaving chest. I can see what is happening. It’s not hard. Or rather, harder, to let him go because we can’t see anything wrong with his body. We can feel it. We can tell. There is no person in there, or just a faint one and with each passing hour, he leaves a little more and a little more, until he actively starts to die on his own. Removing the ventilator is not any harder than it would be with a baby who had outer physical defects. It just looks like he’s sleeping, his whole life out in the world, it looked like he was just sleeping. Until the last little bit of him goes and he is silent and still and gone.
But now. Now it’s harder. Seven months later and I almost wake up in the middle of the night and I see him laying there like he’s still alive, across town, getting better. My night-mind plays tricks on me and thinks “See, he’s okay. Just look at him. Plump and pink and perfect. What could be wrong? There’s nothing worng with that baby. Just look at him.” Without him here to feel that he is leaving, that he is gone already, I can only remember his perfection. His weight in my arms, full term without a hitch. That we stood over him and stroked his sweet head. That Danny spoke softly to him, calling him “boychik”, the Jewish term of an endearment her heard the Russian women, dressed in heavy black wool, in his neighborhood growing-up call their sons or grandsons or charges. That I changed his diaper that didn’t need to be changed because his kidneys and bowels barely worked. That we bathed him, washed and dressed him to prepare him for his death, like people have done for millenia. He was here and he was perfect. He looked like his sister. He came out of my body. I did it. We were at the end of the labor and the beginning of his life. We were all ready. We still are.
Now, I wait. I wait to wake up. I wait for him to come back. I am still waiting for this to never have happened. I almost wake up in the middle of the night and I see him and I feel him and I reassure myself everything is okay: “Just look at him. He’s big and strong and beautiful. Of course, he’s okay”. I wait to be okay with this. To stop longing for him. To stop trying to make some sense out of this fucking mess. There was a starkness there in the NICU. I thought I was still myself then. I didn’t yet know all of the implications, the depths of despair, the humbling, the utter transformation, that were coming my way. I didn’t know it would be the memory of his unscathed outsides that would make it hard to take the ventilator of my memory out. That all these months later would leave me wondering if maybe we missed something, because as my mind’s eye rewrites: just look at him.
My child was dying. I am his mother of less than two days. I do whatever I have to do for my newborn, even if it is hold him until he dies. It’s biology and physiology and true love. I take deep breathes and allow my son to have his process, to make his transition knowing he is held and loved and that it’s okay. But it’s not okay anymore and it wasn’t harder then.
It’s hard now.