I look at all these small pieces of photos and wonder should I have cropped the family photos for Blair’s memorial? Of course, is the only possible answer because it’s done. People loved seeing his life collaged out before them in a continuous piece, and as I recall, it was the therapeutic task that got me to the memorial in the first place. What a hardship that was. Losing my beloved son so possible yet unexpected. It had been a terrible year of declining health where he suffered and I lost my mind. His life was always physically difficult, but for 39 years his journey was heroic in his light, love, thoughtfulness, and good humor. Mine too, I suppose, not until that year did I think of it as anything but an honor and pleasure to be his Mom. Then began my Sisyphean journey into hell. It wasn’t so much a punishment as a duty. Not deceit or self-aggrandizement, but certainly crafty negotiations and strategizing that is any parent’s job for their child in need. Doctors, insurance, treatments, therapies, responsibilities, housing, transportation, schools, doctors, activities, set-backs, recoveries, doctors, health and illness. Those were the challenges and success that created life around Blair, and I was the domestic engineer who drove the endeavor. After all I was the responsible party in so many ways; inseparable from each other we pushed forward.
It all seemed so normal and doable until that year as gradually, slowly at first, then escalating into pain and suffering, desperation for medical intervention, hope, and a growing terrible fear in me that this was the beginning of the end. Unlike Sisyphus my suffering was because of my role, not in spite of it. I knew from the beginning of the year that I was being punished for my carelessness, everything I didn’t do, every mistake I made. And now I had this burden, this stone of responsibility and futility that had to be pushed up the mountain of one small life. If I could only get to the top, find the way, have the strength, strategize a method, beg for mercy. If only I were more courageous, more tenacious (my family shudders at the thought), a better person, I would be able to find solutions, fix this one more time. I bent my shoulder to the task every day. Carrying the emotional burden of love and care, worry and fear, acting brave and calm, giving good advice, and cooking good food. Lifting a burden far beyond my weight and ability. Heaving him to one more appointment, one more effort, then soothing his unceasing suffering. Being quiet beside him as he quietly lovingly and beautifully began to dissolve.
I’d come home every day and in my room this burden would roll back crushing me with its guilt, remorse, shame, and regret. I fell to the floor weeping for the thing I could not name, but I knew lay at the bottom of this pit where I lay crushed under the burden. Finally, asleep. For a while, then awakened by the siren call of the burden. Gird my loins in prayer and meditation even though I knew I was a phony and it was empty effort. Breathe my brain into action, take my heart in hand and try again another day to raise this burden to a point where it would roll over the top and in that way relief would come, a miracle would occur and the burden would be lifted. He would be saved and everything would go on as normal. Everyday the burden grew in weight and resistance. Everyday he worked harder and suffered more. Everyday something else was lost. Everyday I was less strong and less effective. In fact the burden wasn’t the problem. I was the problem. Responsible, complicit, unable to do my job, powerless to lift this weight that needed to be lifted. Weak. I wept alone in my room. Begging for mercy, praying for amends, surrendering to the darkness that lay below. Negotiating as the guilty party to be the condemned.
There was a small miracle when a doctor came to help and lifted off some weight. But that was short lived, as my darling boy had lost so much strength, the outcomes were insufficient, and I could do no more. He settled into a low period of waiting. Everyone said, “You’ve been through so much.” “It takes time.” “Look at the condition he’s in.” So we began to wait. I was barely hopeful, he was complacent, and tired of my exhortations. They sent me away for a break. Seven days. For seven days I let down the burden and in seven days it crushed him to death in the middle of the night, at home, in his sleep. And I was doomed.
Perilune On Earth 