My grandmother died recently. I met her once or twice when I was a young girl, but only knew her through photos and rare stories through my parents. She was elderly when she died and while her death was certainly mourned by her children, grandchildren and great-grandchildren, I don’t believe anyone thought it a tragedy. She was very old and it was clearly time.
In acknowledging to myself this rite of passage – experiencing the death of a family member, from however afar – I am looking upon Owen again with a watchful, wondering gaze. I am always, always deeply aware of his fragility. As I’ve written many times in this blog, I anticipate his death, at some level, daily. Honestly, I can’t help it. It’s kind of obvious. Anyone experiencing a few minutes with him would wonder how long his little, twisted, wheezing body can sustain itself. My thoughts are not always conscious, but they’re there.
When I was a young woman and imagined what being a good parent meant, I would think in terms of achievement. What my child will ‘become’ as an adult will be a reflection of how well he was parented. And so I must do all the right things to prepare him for adulthood and send him on the road to gathering up all the good things in life: an education, a career, a family, lots of stuff, secure retirement. Done.
When I had Owen and started to realize he would not likely have any of these things, I re-jigged my thinking. Ok, so none of that – instead, he’ll make progress in his own way. We’ll start with communication so he can direct his own care. I’ll give him vocabulary, ways to respond. Blink, push the button, move the mouse, vocalize. Something, anything. Years of pictures, storyboards, software, devices, charts. And nothing. Frustration and wasted time. His body is truly so broken there is not a single repeatable action he can control and turn into intentional movement. Oh and plus he’s deaf so maybe he doesn’t even understand anyway.
Alright I thought. Maybe his life isn’t about all the clutter of language. Instead it can be about love, experiences, sensations. Isn’t this all we remember on our deathbeds anyway? Maybe the gift of Owen’s existence is the gift of this wisdom and lucky me I’m not even old yet! I’m totally on board with this paradigm shift. It offers a grace and simplicity to our lives and excuses me and his other caregivers from the frustrations brought on by constantly striving to improve. The relief of this is real.
What it doesn’t fix is the sheer grind of intense physical care and management. Not just regular activities of daily living (feeding, diapering, lifting, dressing), but ever-mindful presence to make sure he doesn’t hurt or kill himself. He can’t be left for a moment. Even while sleeping.
This is not going to change much. The potential for deep brain stimulation is still to be explored, but even that won’t change things dramatically. Just possibly make it all less bad.
Let me take inventory. Achievement? No. Communication? No. Improved health? No. Improved management? No. Ways to stop things from getting worse? M-a-a-ybe. An inevitable ending? Yes.
So to bring this around again: I am watching Owen’s life continue on a steady path of relentless sameness, while the rest of us are growing up and getting older. He may live another 20 years, but his next big change will be to die. Which I imagine is just like my grandmother’s experience in the last weeks of her life.
In this same vein, I accept Owen’s eventual death as the inevitable conclusion to his life. (I just amazed myself with the stunning stupidity and wisdom of that statement!) This acceptance frees me to simultaneously savour my time with him now and look forward to the day I am released from my crushing responsibilities.
I say ‘frees me’ but maybe I don’t mean that. Too happy a term. Rather, it binds me. Confuses me. Fills me with sorrow and grief. Acceptance does not anywhere near mean liking or even understanding. It’s a giving-in to the ebb and flow of life and truthfully acknowledging Owen’s passages – even if, unlike my grandmother, he skips a few steps.