Our son Josh, a 27-year-old skydiving instructor living in Colorado… He was funding his college education to become a child psychologist by teaching skydiving. During the holiday and on his final jump, a cold air density pushed his parachute inward, throwing him to the ground at 60 miles per hour, breaking his femur and fracturing his skull.
My wife Victoria (his step-mom) and I flew to Colorado to be with him and after 5 weeks in ICU, Josh seemed to be on a better road to recovery. In fact, he was doing so well that they told us we could go back home as he was admitted to a nearby physical rehab facility. But suddenly, 6 days into rehab, Josh began feeling nauseous and running a 103-degree temperature.
For these reasons, he was transported back to ICU to determine why. Enterobacter aerogenes, a dangerous gram-negative bacterium was found to be present in his cerebral-spinal fluid.
Later that night we received a phone call – the worst call of our lives; it was nearly midnight. The voice on the other end was his neurosurgeon. He told us Joshua had suddenly coded and stopped breathing, becoming comatose with no respiratory effort whatsoever. He’d been attached to a ventilator to save his life while Josh’s neurosurgeon was called from home. Upon arriving he immediately performed a ventriculostomy at which point he told us Josh awoke and was responsive again.
He said the ven-TRIC procedure saved his life but the ensuant spinal cord injury had tragically, permanently interrupted his ability to breathe on his own ever again. Josh had experienced something called a brain herniation with irreversible spinal cord damage down to the thoracic spine making him a permanent ventilator – dependent quadriplegic.
We took the next plane out of Atlanta back to Colorado and during the entire flight I kept asking myself how did Josh’s spinal cord get damaged all of a sudden.
On October 22, 2006, our son died – but not from his original injuries; Joshua died unnecessarily from hospital acquired bacteria that caused so much pressure to be put on his brain and sepsis finally took over and ended his short but unforgettable life.
Within a week, we discovered that the neurosurgeon had not been honest with us. He first performed a lumbar while Josh’s brain was swelling and then performed a ventriculostomy, therefore damaging Josh’s spinal cord…
Soon it was November. Our lives were in shambles. By the end of that month … really … I saw myself as a defeated man.
I had become a person I didn’t recognize; one I didn’t like very much and didn’t want to be. All my joy was gone. I felt searing guilt. I felt shame in having let down our son. I felt I had failed in every way it was possible to have failed as a parent.
Watching your son suffer pain, the effects of a MRSA infection, Delirium, paralysis and finally, death far before his time from something that was probably preventable will do that to you, I think.
In my mind, I had failed miserably in saving our son from what was a nightmarish descent down a dark and hideous hole into preventable medical harm, hopelessness and ultimately – unbearable loss I could not seem to wrap my head around.
It seemed I was drowning in quicksand with feelings of sadness, frustration, grief and as you can well imagine – a certain amount of anger.
Back home in Atlanta there was little left for Victoria and me to say to each other. Our house was painfully quiet and uncomfortably still. It felt dead there. I just sat in a chair at my desk in our home office looking down into my lap, gazing at nothing for hours upon end, day after day. Every day. Clearly, I was somewhere else; and wherever it was, it was not a place I should be.
Crawling into bed each night we’d turn out the lights and mutter whispered goodnights, only to, more often than not, hear the other break into muffled weeping. There in the darkness, turning towards each other in a clutched embrace, we longed for some sort of comfort from our shared pain only to find that for us, there WAS none.
Our marriage was fast decaying into a miserable wreck of bitter silence. I kept thinking … we had just lost Josh and now we were losing each other. Our happiness, our comfortable normalcy, the tight bond we’d always shared and the friendly, loving connectedness between us was gone and for me, I could hardly bear it.
As the days passed all I knew to do was to be left alone to my grief.
It was then with much quiet time on my hands that I made up my mind to search – search for an explanation of not only what these infections were but how they could be prevented and how we could keep this sort of harm from happening to anyone else ever again.
Now I had a personal mission and suddenly it was like it transformed me into a man on fire. Little did I know that for me, MORE CHANGE was again on the horizon and for a second time in as many months, I would never be the same again.
After hearing what had happened to our family, the CDC graciously invited us to meet with them at the end of 2006. They told us that in the U.S., 2.1 million patients were becoming infected annually with 100,000 patients a year dying as a result of becoming infected from their medical care. We were stunned beyond belief.
Encouraged by the CDC to bring focus to the specific problem of HAIs, Victoria and I worked day and night for a month, and straight through the holidays of 2006.
Both Victoria and I welcomed the task and as the hours, days and weeks passed, all of our time focused on our new shared mission. The idea of the positivity of it – the idea of doing it for Josh and for others who needed the information seemed to be healing us; bringing us close together again.
By January 1, 2007, we had begun Safe Care Campaign with an educational website focusing on bringing to light the problem of infections and helping to prevent the failures associated with them.
When Josh was dying, more than 70 of his friends waited for 2 days in the lobby of the hospital for their last chance to say goodbye to their dear friend before he left them forever.
Every one of them had their own favorite memory of him; fun, silly, private, poignant stories of some hilarious antic or remarkable, wonderful moment or adventure – a single, common thread that underscored their unique relationships with him.
When Josh was dying, he was only able to see in the direction his head was pointing because he had become completely paralyzed. He couldn’t move any part of his body at all but he still had facial expressions; he could still move his lips and his eyes – he could see and blink.
As his friends said their goodbyes, I stood helplessly frozen at the foot of Josh’s bed; I knew he could not feel my hand on his ankle or even see me as I stood there just outside of his peripheral vision but still, I remained there with my hand glued to him anyway, grateful just for the time we had left.
Standing there silent in the shadows, I overheard his friends utter these amazing spoken remembrances – important memories of better days – they reminded Josh of these times. Standing there in the shadows I witnessed momentous words spoken well and spoken genuinely – the kinds of words you don’t just say everyday – the kind that you save up for special times.
And when Josh friends were done and gone, I watched my own wife, Victoria, who I love more than my own life, breaking inside as she said goodbye to her dear young stepson.
When everyone had finished, I knew it was my turn to say goodbye. I remember taking one giant step towards Josh and then another; suddenly moving into his periphery. I knew when I was within his periphery because when I entered It, he smiled so big … like he ALWAYS did when I walked into a room.
Seeing him smiling at me, I broke into tears and made some transparent and lame comment about what a crybaby I was. I moved close to him now – bending over him, maneuvering my own face just inches from his, tilting my head to mirror the direction of his own. I remember him looking at me thoughtfully – determined – straight and deep into my eyes and smiling so genuinely – unafraid – being strong like he always was.
I remember hating that I had to smile back at him but I did it for his sake, touching his forehead and cheeks with the tips of my fingers and cupping his cheek in my hand so he could actually feel me there with him. I wanted so badly to comfort him now because I didn’t want him to be sad or afraid as he laid there upon what was to become his deathbed.
For what seemed like many minutes, I remained silent – just looking at him but now his smile disappeared and a furrow appeared in his brow and I knew what it meant … He wanted to know why I wasn’t saying anything.
There in that awful room, I sat there knowing full well that I had no words in me for him. I had nothing at all to say and I was ashamed of that.
I was helpless to comfort him now because I had always been “PEP-TALK” Dad. “TRY AND TRY AGAIN” Dad. “THINGS’LL BE BETTER TOMORROW” Dad. Now I had no words for him – nothing at all to say that was positive, comforting or wise.
In that dark room, on that dark day, not wanting to fail in this important moment between us – with my very best feigned smile, and a gaze that was uncomfortably long and awkwardly silent – I remember telling my brain to make my mouth open, hoping that I would somehow find the right words to say – and you know what … when I did … quiet, gentle words DID fall out.
What came so simply – naturally and directly – were words from deep inside – words I didn’t EVER have to think about – authentic, loving words I’d had for him all along. There in that room – suddenly, easily … with authentic words that expressed everything I ever felt for him inside, through tearful eyes, I simply said: “I love you SO much”.
And you know what? He seemed satisfied with that, I could tell, because that inquisitive expression on his face and the furrow in his brow disappeared – he smiled at me once again and then his eyes began to move across my face – from side to side, slowly and intentionally scanning it as if he were memorizing my features for another time, another place when he could see it no longer. Finally, Josh let his gaze fall back onto my eyes and mouthed back the words, “I love you too Pop”.
Josh died after that. After having had to say his goodbyes to dozens of friends and close family with a muted voice and mouthed words, unable to draw breath to even whisper his farewells, relying entirely on facial expressions to communicate profound thoughts only he could know.