Miss her every day. The picture of my mother below was taken one and a half years before she passed. She had already lost the ability to speak half a year previously and could no longer walk. But she could still laugh and nothing was quite so important to her as bringing out joy and laughter. She laughed a great deal, despite a really tough early life. Despite her illness. Towards the end she was reduced into kindred, mirror images of my son; paralyzed and speechless, fed through a gastrostomy tube, pain on the outside. While inside the same strength and kindness continued unabated.
In the end I had to hold her mouth closed, eventually adopting the neck collar solution just as with Segev, so that her airway was more stable and her breathing a little easier, the heavy rasping noise, just like Segev's, subsiding slightly.
Arriving at 11.00pm on that freezing Dutch winter night, directly from my flight, I treated her for over an hour, with the utmost gentle care. Despite the facial paralysis a bit of the pain contorted tension lilted from her face; I was reminded of Joe Coffy from the film 'The green mile' and the terminally ill woman he helped. But I'm no Joe Coffy and life never takes us in and lets us ride out to the sunset like in the movies.
And what transpired for Segev while I was gone for three days? He was calm. Without any massive seizures. He smiled and made noises and didn't complain of pain. The best three days he's had since before anyone can remember.
When I came back on Sunday evening and took Segev home he had an alarming seizure, right on cue. Afterward his troubled breathing kept us both active during the night and the next two nights and days until he was once again reasonably stable.
I told him he wouldn't see his grandmother again and once again I couldn't stop the tears.
I thought that with all we've been through together, with the times Segev's life hung in the balance, all these years of toil and uncertainty, I was prepared for anything. How wrong I was. It was like being hit by a car. At times my body would not listen. I watched as I lurched against a garden fence, holding on with all my strength so as not to be thrown down onto the ground. The rending of clothes and the gnashing of teeth, literally, was finally understood by me. I knew what it was to raise my head and bemoan the heavens. Finally, exhausted I was able to continue on to my Uncle's house not far from the hospice. I was caught in a vortex and only my amazement over this struggle with myself to do something, anything besides collapse, suffered conscious recognition. Arriving at the house, I poured myself a double of bourbon, and another.
At home my palpitations returned, fiercely. You go on. Life goes on whether you want to be a part of it or not. No one is asking your permission. You're just experiencing what everyone does. I thought at least I would control my physical self but what a sham thought. What an emotional hack! I held onto doors, railings, walls. It felt as if I was breathing under water, pushing fluid through the alveoli. Instead of shouting, uncontrollably I found rumblings, deep guttural utterances rising, shaking my chest and escaping as vocalized grunts and moans.
Anything I had done for her over the course of her illness, everything I had done amounted to exactly nothing at that moment as life ebbed and each moment was noted as I stood next to her to bring calm to her consuming pain and to raze the emotions of the beginnings of her stark, finally fulfilled journey.