Life had not prepared me for the kind of decision I was being asked to make and that is why it felt like a different time, a different life. It was as if I had stepped outside of myself and watched someone else playing the part of me in some made-for-TV movie. The daily thoughts I have about my son and this situation, what happened then and how I feel now, all of it seems disconnected to this self that I define as me, today.
Yet, I know that who I am today is irrevocably tied to who I was then, what happened then, and what has happened since. Who I am tomorrow may be a divergence from who I am today or yesterday, but the scar left but what happened then cannot be erased. Whatever or whomever I will be when it’s my time to die will still carry the mark of that moment.
When X finally awoke, it was up to me to tell her the situation. My words were measured, choked, and no matter how calm and reasoned I tried to be, there was little I could do to mask my rage and grief and sorrow. It was, after all, more her decision than mine since she had carried him 10 months. My futile attempt to present the dilemma to her with objectivity was to give her the facts without coloring those facts with my own emotional brush.
For hours, nothing was said as we held each other and sobbed, trembling in each other’s arms as the gravity of the situation pulled us into a deep, dark pit of depression. When we finally spoke, we considered every possibility of what we could do to keep our son alive and close to us. Unable to let him go, we tried over and over to make some plan that would allow us to love and nurture our son. No path led there, no plan could satisfy our dream and the circle of cold logic brought us back again and again to the conclusion that letting him go would be the best thing for him.
When she was able, X walked with me to the NICU to see her son. The neonatalogist I had talked to greeted us near Noble’s incubator, again apologized for the prognosis, then asked the nurses to move aside to allow X to see her son.
Noble’s chest heaved as a billow pushed air into his lungs but otherwise, he was absolutely still. He was naked, his skin brown with betadine, colostomy tubes attached to him as well as IVs and monitors. X was silent as she gently stroked Noble’s cheek, forehead, shoulders, she was remarkably calm, almost happy. It was as if, her moment with him was blissfully happy. We sat there for almost an hour until it was time for the nurses to attend to him again and X had to get back to rest some more.
We both needed rest and time to consider what would be best for Noble. Unfortunately, we didn’t have time for either, as the staff reminded us. Still, we managed to catch a few hours of sleep and that, along with time for the reality of the situation to settle onto us, allowed us enough clarity to make the decision, to do what would be best for our son and for us.
When we went back to the NICU to share our decision with the doctors, Noble had moved into the nursery section. About a half dozen incubators held preemies or distressed births as parents like us stood sad, silent vigils over their children. I watched the faces of the other parents and although I could tell they were going through something like what we were going through, there was no comfort from being in that club. Besides – no one was going through what we were going through.
Staff surrounded us as we were asked what our decision would be. We gave them our answer and then asked that, since he was going to be off life support any, if we could hold him, let him pass in our arms. The doctors said that yes, we could do that, we just needed to sign some papers stating it was our decision to remove life support for our son.
The staff led us to a small room where we were met by a grief counselor. The woman might as well have been speaking German; there was nothing she said that registered with me. All I wanted to do was hold my son, tell him how much I loved him, tell how much this time – brief and yet, eternal – meant to me, tell him farewell. Somehow, I knew it would not be goodbye.
A nurse entered with Noble and handed him over to us. The counselor asked if we wanted to be alone and we said, yes, please, let it be just the three of us.
We held each other as we held him close. My little man, my little man, I thought, wept, stroking his little tuft of hair, caressed his back, you know we love you, you know we did what was right for you, you know you will always be with us.
We rocked him, loved him, shared everything we could with him in those too brief moments, and then -- felt him gently slip away and grow cold in our arms.
A nurse entered the room, touched him, knew it was over, told us it was time, time to let him go for good. She took him from us and left us to hold each other, grieve, weep, begin the process of understanding our loss.
As I write this, I still don’t understand my loss.
In that time that seems so different, as if another life was being lived, I wondered what God would do that to my son. In an attempt to console us, people would say, “You may not realize it now but everything is for a reason; God has a plan.”
There was no consolation in those words, then or now. If a God took Noble in order to make me who I am today, this different person in a different time, it seems like a mean and small-minded way to accomplish that. Perhaps I am too arrogant, trying to see into the mind of God but I still don’t understand.
Noble is with me now. He would be almost 8-years old, had he survived. Sometimes, in my more spiritually-driven moments, I wonder if his soul survives inside my children, if they’ve been blessed with his presence. That would make more sense to me. Another time and another life, carried on in the lives of those so precious to me.
If that is the case, if my children have also been touched by him, then although I do not understand, I am content.
Click here to read Noble, Part V