Some time after 6:00 a.m., on April 22, 2011, (a combined Good Friday and Earth Day), my son, Randy, slipped away from his life on Earth just two weeks shy of his 48th birthday. It was an easy passing if you ignore the difficult weeks leading up to it. None of us knew he was dying and we thought his symptoms of back pain, weakness, loss of appetite, constipation…. were just temporary – a pulled muscle, maybe sciatica – and all would clear up as it had before and life would go on in the usual way.
Randy was profoundly disabled with congenital Dejerine-Sottas Syndrome, a wasting disease somewhere in the MS/MD family. His boundaries had been closing steadily in on him all his life, but particularly in the past two years. As a child, he had walked with a rolling gait but paid as little attention to his disability as he could. He was smart and inventive and a natural leader among his playmates. The crutches he needed in high school were not cool and he began to sense that girls didn’t go for guys like him. Still, he had good school friends with whom he was still in touch on the day he died.
His two years at Centre College in Danville, Kentucky were really happy but the snow was hard to maneuver about in, so he transferred to Rollins College in Winter Park, Florida, where he graduated with a degree in Art History. Randy was a true artist all of his life and was working on some intriguing pieces using fluorescent paint and black light at the time of his death. His modern art is full of motion and color. It moves even though he was able to do less and less of that in his final years.
He didn’t believe the prognosis given at Mayo Clinic that he would only live “into his forties” but was always convinced that he’d outlive me, not finding it reasonable that a child should die first. However, Randy had a lot of “what ifs?” that gave him a hard time. Both his grandfather and his father had died very, very slowly and he dreaded that prospect. Or, what if he got trapped in a body that could no longer move, leaving perhaps only one finger to type out his thoughts? But his worst fear was not being able to remain at home within familiar surroundings if his care should become too hard for me to handle…which it almost had.
Death was both frightening and fascinating to him but was not something he applied easily to himself. It was very good that no doctor gave him that certainty in his last days because he would have stewed over the moment-by-moment indications that he was approaching the edge of that yawning chasm and might have felt some fear and worry. He never had the casual coziness that I have with the subject due to my constant companionship with Somebody On The Other Side. The Buddhist Teachings aren’t exactly clear about the existence of God and get very complicated when talking about that rapid-traffic tunnel mentioned in the Tibetan Book of The Dead. Consequently, Randy kept the idea of death at a very great distance from himself and ruminated about the difficulties of life.
After a week of pain and very little appetite, he woke me at 5:00 a.m., asking for a glass-bottle Coke and a Cuban sandwich, which he enjoyed thoroughly. We talked for an hour and we both were sleepy again, so I suggested that we try for more sleep and we said goodnight at 6 a.m. He seemed to still be sleeping when I got up and had my coffee and then the visiting nurse found him without a pulse, soon after. He had slipped away at dawn.
“Good on ‘ya, Randy!” I said. “You did it exactly right!” His funeral and memorial service was a happy farewell and a tribute to a life lived fully and creatively though the walls pressed in for more than forty years. He always adapted to the new situation, the new normal, and found things to cherish about his earthly experience throughout the whole long ordeal.
His best buddy, Kumpa, also a Buddhist, reported on the way back from the funeral service, that he’d had an inner glimpse of Randy, now in the Pre-Birth Realm, testing a new body by running it up and down the stairwells of a tall building, refusing to take the elevator and enjoying the sampling of an athletic reincarnation. I’m told now that he didn’t select that body, after all, but was reborn two days ago in a good body, in Altoona, Pennsylvania.
How would you like to be born in a city called: “POM Wonderful Presents: The Greatest Movie Ever Sold?” That’s what Altoona is officially calling itself for a two-month period (April 27 (coincidentally, the day of his funeral) to June 27) to promote a movie by the same name. What are they putting on the birth certificates, I wonder?
Randy would have enjoyed the joke, having found life pretty darned wonderful this time around, in spite of everything.
As a parent of a child with a disability, I can’t really tell you how it feels to have a disability but I can honestly say how it feels to stand by and watch someone you love suffer. Imagine that your beloved child gets his finger caught in a slammed car door. You’d do everything in your power to extract that finger, or that whole hand, and make it all better. But the medical experts all agree that:
“There’s absolutely nothing to be done. The hand will stay smashed in that car door for the whole life and the best that one can do is make the best of it. Granted, gangrene will surely set in as time goes by but there are little things that can be done to make such eventualities a bit more bearable… Granted, that gangrene will bring an early death…but, such is life!”
After nearly fifty years of watching that prediction gradually come true, wouldn’t you as a parent also, as I was, be tremendously relieved when the car door was finally opened and the hand could escape the vise? Yes, you would!
That’s why you won’t detect the usual Mother’s grief in me, which many people feel when their child dies before them. What? Would I have honestly wanted him to hang around for even more pain and suffering just because I wasn’t ready to say goodbye? Not a chance!
I just call up to him: “See ya’ later, Alligator!” and wish him well in his new life in a great little town with a huge sense of humor.