Over lunch the other day my sweet wife and I talked about assisted suicide, a topic one son has been debating in his pre-med studies at college. He holds an opinion that may seem contrary to the Hippocratic oath, that it’s the right of the patient to determine their fate given the circumstances that decision is out of their capacity to make. And I realized he has no context that relates to that decision for a brother he never knew. None of our kids do.
The only thing more unnatural than outliving a child is not intervening in his dying.
My brain stops in this consideration, this writing an attempt to wrench the words that belie the pain at a risk to a valentine too worn for its days.
His heart stopped beating in my arms and those of his mother. We’d intervened before, hundreds of times, some heroic, most just part of the quotidian task of his care. Eight years and ten months. The onset of this last pneumonia manifest damage that was unrecoverable. The alternative to dying was a respirator, upon which he’d never wean. Our pediatrician prescribed an ability for him to be comfortable in his passing, and even in euphemizing that I’m not sure he was; he was just out. I believe one has to have a level of consciousness to be comfortable. Perhaps it was, instead, a vain attempt at our comfort, more a disconnect for him. I’ve debated this for eighteen years.
Shortly after he died I got a job working in durable medical equipment, much of which was respiratory related. A breakthrough at the time, just months after his passing was BiPAP, which basically is the ability to ventilate without intubating, the cruelest timing of any invention I know. Shift the temporal context and maybe he could have been saved. That parenthetical’s a son-of-a-bitch.
The overarching debate was quality of life. Over the course of his life we had gone from strong suggestions of a neurologist to institutionalize him, to the praise of his third-grade teachers in his matriculation to mainstream. He had dipped his toes in two oceans, marveled at the Palace of Fine Arts in San Francisco, and survived an over-zealous yellow lab bent on being his canine companion.
That versus aspiration pneumonia more common than the common cold, hips that would never form and a fecal vault that wouldn’t void. What are inalienable to able- bodieds, weren’t only foreign to him – to eat, to walk, to poop – they were terminally depriving of quality living.
According to me, the able-bodied.
He found it in a stretch or in the compression of his legs into his hips, the reward of such therapy was his smile. It was in the rare clear breath free of the threat of aspiration, something I’ve dismissed as easily as clearing my throat.
He found it in the most dire times. When it comes to speech the most basic collaboration we make between consonants and vowels is ma. With the mouth closed, vibrate the lips by humming, then open your mouth. There you have it. It wasn’t that easy for him. After realizing some success with patterning in his physical therapy, I thought to try it in developing his ability to speak. Patterning is developing muscle memory by practicing a move over and over again, hundreds of times until the brain can do it autonomically. I worked with him for weeks. He’d make the hum but struggled to open his mouth. He’d sneak an index finger to his chin and do it manually, but he couldn’t do it by virtue of just opening his mouth coordinating with the hum.
Not long after, he was back in an intensive care unit, rapidly desaturating from aspirating on his own fluids. A nurse was trying to thread an IV in the only place she could find a vein, on top of his little blond head. His mom held him while I held his hands so he wouldn’t intervene on his own behalf and the nurse started the puncture. It hurt him. He rarely manifest pain through crying, I can’t remember a single instance of him doing so. Instead he tensed and shook, looked at his mother and said as if he’d been speaking it his entire short life, “Mama.”
At two years and then some he created a single word, double syllabic vocabulary that came to mean everything. “Mama” meant “I love you,” “I’m hungry,” “I hurt,” “Hi Grandma,” and a thousand other iterations this word could ever know. This tiny window opened a world of communication for him, for us, a quality of living that was never predicted by any attending physician, but realized by a boy who had outlived any prediction made on his behalf.
And that’s the rub for me, because it was by my definition of quality of life where decisions were made about his quality of life. Maybe he was completely satisfied with tube feedings, Barney, and the struggle to just oxygenate. Maybe I saw an opportunity in his pediatrician’s terminal evaluation of unrecoverable to just let it be, to end almost nine years of around-the-clock care, to surrender a fight for a life we were lucky to have for every day of his existence. There is an immeasurable grief in that surrender.
And that’s a killer, because in his passing was the unavoidable feeling of relief.
There it is, in writing this out, a better construct of two utterly polarized emotions that dance like electrons across my heart.