Anguished Composure

[Aaron's Story - Part Four]

From the moment that Dr. M. finally told us the truth - from the moment we learned that our son was going to die - my memory of events becomes less thorough. Less linear. Many things would begin happening at once, and my capacity to absorb and make sense of them was quickly exceeded.

One of the first things I do remember is the sensation of returning, slowly and painfully, to some basic level of functioning. I can best describe this state as anguished composure. Inside, I was in shock, felt broken beyond repair, full of grief, anger, and guilt. But outwardly, I was able to maintain a very controlled facade. Because the core of my life had collapsed, I had to hold the fringes together. Because I knew that I was powerless to change what really mattered, I desperately needed to stay in control of what little I could.

This transition began for me somewhere around 4:30 that Sunday morning, still sitting in that dreadful office, the medical staff having left us alone for a while. With no tears left - for the moment - Debbie and I began to talk about what we had to do next. The situation, which in such a short time had gone from worrisome to frightening to catastrophic, could no longer remain within our small inner circle of family and close friends. Still, it was that inner circle that we wanted to turn to first, to stay sheltered within, if only for a little while more.

About 5:30 am, unable to wait any longer, we called Debbie's mom, still at our house with our other children, and mine, in Baltimore. Each conversation brought our tears and emotional collapse back anew.

Debbie and I looked at eachother's haggard faces, and both realized that had to move - to get the hell out of there. We needed to be home with our family, with the other children. And they needed us. As for Aaron - or whatever of Aaron was still in this world - we felt completely helpless, worse than useless. We both would have done anything to bring him back. But to just keep sitting there, watching him in the state he was in, was more than we could bear for another moment.

We struggled home, and were met at the door by the other kids. None of us knew what to say. We just hugged, cried, answered their questions as best we could, and cried some more.

Some time later, my anguished composure restored, I started to make other phone calls, other contacts. Our shul's rabbi. A few close friends. Finally, Rabbi O., the chaperone for the senior class trip to Florida, which was scheduled to depart for the airport later that morning. I had to let them know that Aaron wouldn't be coming on the trip - and why.

Of course, Rabbi O. offered to cancel the trip altogether. My response was instinctive; I told him that I wanted the trip to go forward anyway, that the class deserved it, and that Aaron would not have wanted his friends to miss what they had looked forward to for so long. Looking back, my suggestion was well-meant, but naive. Even at that point, I had little clue at the magnitude of the impact our "situation" would have on the "larger circle" of our community.

Our shul rabbi arrived. Along with deep empathy, he provided practical help in working through the difficult halachik [Jewish religious law] situation in which we found ourselves. Aaron's state was believed to be one of total brain death, but IV medications and other artificial life support means had been introduced before that was known. The halachik question of whether these should or should not be continued is very complex and controversial.

Debbie and I had decided long ago which particular religious authority we would consult if we ever had a decision of this nature to make. He is one of the recognized rabbinic experts in the medical ethics field, as well as someone both my father and I had known personally at various stages of our lives. I discussed this with our rabbi, who supported our decision and helped get me in touch with this authority swiftly.

He listened with compassion and counseled us with patience, specifying an exhaustive set of tests and procedures that had to be conducted by the doctors, over a given time period, in order to confirm whether brain death had occurred. If - or in his words, if God forbid - the tests indicated that brain death was complete, then his ruling was that artificial means could be - in fact should be - discontinued. The tests would begin the next morning (Monday) and conclude that evening.

So we had our next steps regarding Aaron, mandated by our chosen halachik advisor, and in tune with our own emotional and moral views. Thus, from that moment early Sunday morning through Monday night, we were trapped in a horrible, almost unbearable holding pattern. We would not - could not - share the full details of our terribly bleak situation with the community. But what the community did know was serious enough - and they rallied accordingly.

People began showing up at our door, ringing the phone off the hook. Food was brought in. With my typical dark humor, I told Debbie that what was going on felt like "shiva pre-season" or "shiva with comfy chairs". Of course, I knew even thinking about shiva yet was considered wrong. Where there's life, there's hope, we are all told to believe. But sometimes hope is too dim to be detected, like a sound below one's threshold of hearing. At such times, despair can be its own flavor of hope, can be comforting in its own way.

Meanwhile, out of range of my despair, the wonderful, torturous outpourings of communal support continued and intensified. Aaron was understood to be a very ill child in a coma, one for whom recovery was still anticipated. We received several names of neurologists who, we were urged, could be called in for "second opinions". Aaron's class unanimously voted to cancel their trip, and took shifts throughout the day visiting his room in the hospital, and learning on his behalf.

On a broader scale, a special tehillim [psalms] session was called for Sunday afternoon in my shul. I made myself attend, and was overwhelmed by the sight of well over 300 men and women, all of who had obviously come on very short notice. A long set of tehillim were said, and Aaron was given an extra Hebrew name, "Raphael", meaning "God will heal".

I participated in this session with a whirl of contradictory emotions. I felt cherished and supported, but also impatient, frustrated, irritated, even sacrilegious. I felt like I was fooling all these people, letting them pray for an impossible outcome. Wasn't I just wasting their time?

But I told myself that prayer is always a good thing, has an intrinsic value, whether or not a miracle was to be expected. Whatever was going to be, we are really just asking God for rachamim, for events to happen in the most merciful way possible.

And one clear, already present manifestation of that mercy was the genuine strength we received from our inner circle of family and friends. Debbie's mom was already with us, my mom and Debbie's aunt traveled to us as quickly as they could. Debbie's brother and family, who live in town, were constant companions. My sister and brother and their families called to cry with us.

My friend and charvusa [Torah learning partner] P. and Debbie's friend E. showed up early Sunday morning. I don't think either of them left our side, except to run errands for us or to go home late at night to sleep, for much of the next three days. I have no idea how we would have made it through that period without them, and owe them more than I can ever say.

My friend (and now "blogfather") David drove up all the way from Baltimore on Sunday afternoon to participate in the tehillim session, and spent time with me at home afterwards. He has been my friend for over 25 years, and just seeing his face and sharing my pain with him in person that day helped a lot.

My brother-in-law's father, a prominent neurologist in our area, called and helped us understand what had occurred from a medical standpoint - somewhat making up for the dismal lack of communication by the hospital staff. He assured us - as was later, finally, confirmed by the hospital pediatric oncologist - that there was nothing we could have done about Aaron's condition, even if it had been diagnosed weeks or months earlier, when his headaches first began. Based on the location of the tumor (a Brain Stem Glioma, as we later learned) it would have been inoperable from the start.

This information helped soothe at least one of the toxic emotions gripping me - guilt. Our friend E. provided another perspective that comforted us and helped us take our first small step towards that elusive "grieving process" end-goal of Acceptance. She pointed out, that because of the very total lack of information we were given, Aaron most likely never knew he was dying. Our spirited, driven, zesty, always cool and controlled son had gone through his very last day with his characteristic confidence and buoyancy intact, dying the way he had lived. He never had to go through the shattering trauma of finding out his days were numbered, be broken by the burden of an impending doom.

He was Aaron as he was, right through the end. We all felt that within the tragedy, this was, in a way, a tremendous blessing.

With our support system there to help us, we endured the agonizing limbo period that Sunday and Monday were. By Sunday afternoon, I felt ready to visit with Aaron again, to sit by his bed and see him while I still could. My chavrusa P. drove me to the hospital, and we learned gemara together by Aaron's bedside. This triggered especially bittersweet memories because Aaron had joined us for the last two or three of our regular Shabbos afternoon chavrusa sessions.

That hellish Sunday finally came to an end, and that night, I slept the sleep of the utterly exhausted...

Monday dawned. The hospital conducted the first set of tests that morning, and the expected results came in - no brain function. Three simple, basic words, three words that will never leave my waking nightmares. As required, a second set of tests would be run that evening, but a different result was not to be expected.

With that cold realization, a sense of purpose gripped me, my methodical "emergency mode" taking over. I felt I needed to keep myself occupied, "take care of business" while that was still possible. That day, I cleaned up work voicemails and emails, paid any bills that were due the rest of the month. I straightened up the house, did laundry. I emailed in an article for our shul journal which I had completed just that past Friday morning. I even returned a video we had borrowed the previous week. Anything to keep busy, to distract myself from what was to come.

When I'm in that mode, no detail escapes my notice. We had an ceramic dinosaur in our living room with the cutesy legend "I love homemade gifts - which one of my children do you want?" With a nauseous, creepy feeling, I took it off the shelf and stored it away.

Late Monday afternoon, the other children approached me. They had decided that they were ready to see their big brother, that they wanted to do so. I drove them over to the hospital, and gave each a chance to take a last look, say some last words, to Aaron's peaceful, unconscious form.

We returned home. It was dinnertime. We forced ourselves to eat some of the numerous food donations which had begun to accumulate in our kitchen. The sun was close to setting as the phone rang with the call we had been awaiting and dreading.

It was the hospital. Aaron's final set of tests were beginning, and would be completed within the hour.

Right then, Debbie and I knew where our place was. We got in the car, headed back along the now agonizingly familiar route to the hospital.

It was time. Time for us to perform the last kindness, the final parental act of caring for our oldest son, for our little Aaron, for the baby who had first made us parents such a brief, fleeting eighteen years, three months, and twenty-three days ago.

Time to say goodbye.

to be continued

Link to Aaron's Story: Part Five