Staring at the blinking cursor I feel a little afraid. I decided to finally pour a glass of wine and call it a day. “And I’d give up forever to touch you, cuz I know that you feel me somehow, you’re the closest to heaven that I’ll ever be, and I don’t want to go home right now…” Somehow I do not think that song was written with any idea of how it might be attached to my memory. The memory of a day that no one else ever thinks of, unless of course I remind them. We all have them, the days we can remember exactly where we were when we heard “the news”. The news of something…Oct. 5th is that day for me. Sixteen years later my mind, soul, spirit, and heart feel the tug of it. Maybe this time around it kept coming back because I am “alone” just like that day. Only this time I am alone safe and sound at home. It is a strange sort of comfort to be alone with one’s thoughts sometimes isn’t it?
16 years later I decided to check my memory of this day so I went back. I reread my online journal of Robert’s transplant days. My memory was confirmed; I was right, the date, time and such had not blurred and become mixed up in the chaos of life. The late night check in to St. Jude due to fevers; sleeping in the parent room watching and listening through the glass while Robert tried to sleep. There was no sleeping in a hospital those days, trust me. I stayed in the parent room to hide. I wanted Robert to try to sleep, but more than that I did not want him to know I was panicking. He never wanted to go back into the transplant unit once he was discharged, and my mom-gut knew something was not adding up. I had studied his numbers and knew how things were supposed to work and I knew they had not been following “protocol” all week. I also knew the hushed tones and confusion of the resident on-call doctor only fed my mom-gut panic. I am not one to panic. You can bet the house on that one; I remain calm. The middle of the night quickly turned into daylight; which quickly turned into the day nurse evading my questions and being way too cheerful.
None of it prepared me for the visit from Robert’s doctor. Dr. H greeted us early in the morning. Robert tried to eat, and watched cartoons. I smile as I think of this, him sitting up in bed eating, and watching cartoons. It was just like him to be as normal as he possibly could be. Dr. H asked me to step out into the adjoining parent room to talk. I remember him sitting next to me on the sofa, shoulder to shoulder; he was wearing his usual-white lab coat and tie-always buttoned up tight. He had taken a “shine” to us and we were told he was particularly friendly toward us, the nurses like that. He sat right next to me, not across a table in an office, but next to me on the sofa as he told me Robert’s leukemia was back. He calmly told me Robert’s transplant had failed; all the evidence of the numbers not doing what they should pointed to this. I do remember how the tears tried to scream through my eyes as he spoke while I sat in silence, but I would not let them. I absorbed every morsel of horror this man spoke to me. He did not move as I calmly asked, “If we do nothing how long does Robert have to live?” Staring at my son through the glass I heard him say, “6 weeks at the most.” It was October 5th. 6 weeks. When Robert was a baby 6 weeks was like a lifetime; at home his siblings were in school and thinking about Halloween. His dad was at home too, trying to salvage a business that had been run into the ground while we were away. All we wanted was to get Robert home and begin again. 6 weeks. Dr. H did not move. I sat there, still, staring, thinking. I heard him say, “Is there someone here we can call to come be with you?” I replied, “No.”
I stood up. I stood up and walked out to the hallway. I stood there thinking, knowing. The nurse knew not to touch me, I think she sensed if she did I would shatter. I told her I needed to go, needed to call Jeff, needed to…
Robert. I leaned in and kissed his forehead, ran my hand over the top of his head like the million other times in his life. Only this time as I did he did not know I was breathing him in and memorizing his smell. Even now, I pause in this moment and linger in the spot on top of his head…”Robert I need to go take a shower I will be back in an hour, will you be okay with Nurse Beth here?” “Sure Mom go ahead.”
There is a moment in a woman’s life when she knows a secret before anyone else, the secret that she is pregnant. Believe me, she knows the secret before anyone else. Here I was, once again, as I breathed my son in, knowing the secret of his life before anyone else…
As I walked outside on the most beautiful crisp morning and made my way to a bench, I realized once again I was alone. As the sun shined down on me, for a moment I sat there alone mentally climbing the mountain of facts and medical jargon and reality of my son’s fate, I reached up, arms stretched far and wide – stiff – surrendering – challenging the unseen of it all not wanting to dare think any of it was true. 6 weeks. No.
I made the call. I made all the calls that morning from that bench. How, on this vast green earth, I was able to make all those calls, I honestly do not know. One call that I do know how and why I made was the call before I called Jeff. I called his best friend. A dad of another patient that Jeff had become very close to; they were like brothers. I called him first. That brave, brave man listened as I told him Robert was going to die. I asked him to get to our house as soon as he could and to call me before I called Jeff. In the midst of all this I knew someone needed to be there when I told Jeff. No thought was given to delivering this news to me, a Mom alone in a strange town far from home, but there was no way in hell I would let Jeff be alone when he heard it.
I have never been so numb in my life as I was that day. It was a day full of a thousand days. Why would I ever want to revisit it? Revisiting it gives me a chance to choose if I would keep it or lose it. At the end of it all, I am grateful that no matter how painful it was, Robert was alive in it. There was hope standing on top of all the facts, truth and reality of his prognosis. I have never stretched taller, believed more, hoped bigger-loved harder than I did those days.
No one will call me and say they remember and know how hard this day is for me. It is one of those days tucked away inside of me that scares me as it approaches, weighs heavy as it lands on me, then, disappears into the oblivion of a million moments. This day changed every fiber of my being. I am glad for the small comfort of my safe home and a glass of wine.
“Iris” was one of Robert’s favorite songs. He used to ask me to play it over and over while I drove him around town as he watched the world go by…it was the closest to heaven I have ever been.