It is a life of celebration. Of fortitude and yes also of servitude. He serves his inability to neither understand nor cope with even basic functions of life and I serve the understanding that life is worth having, something I know to be true, although I can’t quite prove it yet.
It is a tiny life of infinitely small instigators of great pleasures wrought from insignificant daily occurrences. A touch, a smile. A bath. Pain relieved, again and again.
It is a binding life where connection is survival. Yet where language, which so undeniably enriches our experience holds almost no meaning. When I say, “Hey! Here is your friend Pluto. He is barking, woof, woof, to say hello. Because that’s how dogs say hello”, merely a cacaphony of sounds meaning only “Pluto says hello”.
It is a hermetic circle, where few ideas ever enter and no person ever stays. No relationships can be developed, no vacations had. Proper sleep cannot ever enter this circle of bravado.
And so, lost in the care over my son, losing most perspective on normal life, the soul may shine or wither, in any case hidden from view. And so, for the last few months I have swum in the eyes of doing nothing, fearful not to plagiarize myself in expressing the difficulties that continue unabated, grasping with hard hands at understanding, “fingers curl, that pallor of skin wills not mystery to unfurl” neither to demonize nor sanctify struggle.
It is a small life with moments of true happiness, gladness, anguish and pain, each and every day. A circle made of circumstances that slowly close around your entire being if you don’t watch your step, if you don’t know beforehand what pitfalls to look out for.
It is such a small life of such small requests. Not for ‘no complications’, ‘no pain’, ‘no seizures’ but for requests of fewer complications, less pain, less fierce seizures.
The more knowledge you gain, the more worry blankets you. Well wishing soothsayers bring forth arguments of “temporary life”, “care for yourself”, “the future is bright”, like placards of protest strewn about the street after everyone has left the rally.
What really needs to be small, even tiny, is the distance between knowing there is a state of suffering you must do your best to usurp and understanding that a pleasant, quality life is an absurdly wrought misunderstanding you must do your best to translate.