I can't see through my tears. My face is red and swollen and my head is throbbing.
Tolerance for anything unrelated to Zachary, even for the other two family members who mourn with me in this household, has been non-existent. Today we have relived that awful day, in a more complete way than we normally do. The weight of the day, the horror that it is real, the realization that shock can no longer buffer the full blow, has taken an undeniable toll on all of us today. It is the six month anniversary of Zachary's death.
Six months ago, after a third tortuously sleepless night, after telling C.T. that his brother would die the following day, we walked into the hospital to care for our 14 day-old Zachary, one last time. The walls of his isolette came down. IVs and (now) unnecessary medical equipment were removed from his body and his room to make space for the couch where we would spend his last living hours, together. We bathed him, combed his hair, as the heat lamp, our hands and holding, kept him warm. He was baptized, our prayers now resigned to a peaceful death, an entrusting of our beloved boy, back to God. We read books to him, sang to him, our tears dripping all over his paralyzed body. The four of us had lunch together. The saddest first and last meal as a family. No longer able have a real feeding, Zachary was given only swabs of breast milk. The high-frequency oscillating ventilator was switched out to a traditional machine, ending the noise we despised and the pulsating of his suffering body. The paralyzation agent, that felt like it crushed my soul but stabilized Zachary's vitals, was "reversed". We gently wrapped him in a giraffe blanket, a welcome baby gift from his aunt that would now help us usher him into death.
We did these things with the knowledge that there would never be another opportunity to create memories with Zachary. In a few short hours, we would have to face our worst fear and watch our son die. No one could tell us for certain what that would be like for Zachary or for us. We forced our shock and despair to the perimeter of our consciousness in order to get through that awful day.
They transferred Zachary to my arms at 12:45 p.m., his ventilator still in place. The last time I had held him, six days prior, the day he exhibited troubling symptoms, he had just regained his birth weight, was still interacting with me, squeezing my finger, yawning, sneezing, crying, looking at me with those amazing eyes. Now, he was 30% heavier, severely swollen and edematous after being pumped full of fluids, beat-up from endless pokes and prods, essentially non-responsive due to the long-term paralyzation and an invisibly irreparable brain bleed. I beamed with pride to hold him again. He was still so beautiful, so perfect in my arms. His illness, the effects of the treatment, the nearness of death - none of it could not steal his perfectly smooth skin, his feather soft hair, his sweet baby smell. Our hands and lips covered him, traced him, memorized him, showered him with love and adoration. The paralyzation agent wore off enough that he opened his eyes, gave us an intense, but blank, stare, over the course of the next couple of hours. He moved his tongue like he was rooting, but we were told it was normal, an automatic and somewhat expected phenomenon.
Tears sprung from my eyes as I told him all the things I had planned for him and for our life together. I told him that he was a gift beyond any attempt at measurement, that we were heartbroken to have to go on without him. I assured him that he would be safe, whole, loved and at peace, in heaven, in the arms of Jesus, and that we would be reunited, with him and B.W. someday. I whispered I love you and I'm so sorry, Zachary, in his ear, a thousand times. We cuddled and kissed him as we wept and read the simple unconditional love affirmations in I Love You Through and Through, a book C.T. chose to read to his brother.
We called the neonatologist in at 3:15 p.m., and told him we were ready. He gently peeled the tape holding the ventilator in place away from Zachary's mouth. In an instant, the tube was out and our son was dying. We embraced each other, folded three sets of arms around this most beloved person, kissed him over and over, focused all of our love and warmth towards Zachary. I have never felt so much terror and love and calm, together, at once.
Zachary. It's okay to leave us sweetie. Mommy loves you so much. We will never forget you. I'm so, so sorry baby.
We held him for the next 110 minutes as his heart slowed and then finally, stopped beating. Zachary was pronounced dead at 5:05 p.m.
The four of us spent 10 hours together in his hospital room on the day he died. C.T., who was still five years old at the time, left the room only once to use the bathroom. I do not know how we got through that unfathomable day, six months ago. I suppose we had to, and so we did.
Six months later, the reality of Zachary's death and absence is still sinking in for me. I think the roller coaster experience of his life and the trauma of his sepsis-induced brain hemorrhage and ultimately his death - all of which happened in two weeks - has implied that I can only acclimate to his reality in bits. Even as it sinks in, as I grieve day after day for my son, even with the hope of heaven, I lack perspective and peace. I continue to be just as dumbfounded by his short life and his death, exasperated by suggestions by popular culture that time will heal. I cannot make sense of his death. I miss him terribly.
And then I remember that I am not alone. That others on this planet are living with the feelings of emptiness, longing, the opposite of peace, in the wake of their child's death...
Someone said to Claire, "I hope you're learning to live at peace with Eric's death." Peace, shalom, salaam. Shalom is the fullness of life in all dimensions. Shalom is dwelling in justice and delight with God, with neighbor, with oneself, in nature. Death is shalom's mortal enemy. Death is demonic. We cannot live at peace with death.
When the writer of Revelation spoke of the day of shalom, he did not say that on that day we would live at peace with death. He said that on that day "There will be no more death or mourning or crying or pain, for the old order of things has passed away."
~ Nicolas Wolterstorff, from his book Lament for a Son