From somewhere in the periphery of my memory I remember these words spoken to me: “No it never gets easier, we just get better at dealing with it.” All these years later I still think this is accurate.
On Valentine’s Day, 2001 we lost our Son Gabriel to Muscular Dystrophy two days after his birth. This was our second child and our first Son, Christian, was born free of the disease in 1998 and was amazing in every way and so in a way this took us a bit by surprise. My wife is afflicted with this dreaded, inherited, neuromuscular disease. This was Suzy’s second pregnancy and in late 2000 it was being monitored closely and it seemed fine, but once Gabriel was delivered and the umbilical cord was cut, he crashed. His lungs just wouldn’t kick in. Suddenly what had been a seemingly routine environment became a beehive of tense professionals each relaying stats, giving orders and following emergency crash cart protocols.
In the center of this cacophony of beeps, crashes and shouting was the one place where I was focusing my attention: Gabriel. He was on his back under the bright operating room light wincing from the glare and from pain. I saw him catch his breath. Everything else fell away. All the medical people faded into obscurity. There was only Gabriel. And that’s when I heard it — a single cry. It was weak but clear. That was the moment my heart was broken.
It’s been almost 20 years. I’m not waiting for it to heal. “No it never gets easier, we just get better at dealing with it.”
Having worked in law enforcement and corrections for several years, I was used to very high stress and a front line first responder environment. Despite this predisposition, my heart was sinking. I knew something was not just wrong — it was darkly ordained. It felt as though this turn of events was going to happen regardless. This fight was not winnable. That was the hardest part: being relegated to the role of spectator with an emotional vested interest. Being the guy that historically can fix anything and having to stand by and watch the situation unfold so that I must watch my wife suffer the unfathomable pain of losing her child. I couldn’t do anything to fix the pain from having to watch my Son die.
Suzy was brought back to her room where I accompanied her while the medical team continued to work on Gabriel. The Medivac air ambulance team arrived from Dartmouth Hitchcock Medical Center and reviewed Gabriel’s x-rays, exclaiming, “Oh, shit!” as I watched from the doorway of Suzy’s room. Moments later, Gabriel was airlifted to DHMC which is on the NH/VT border. I drove the 2.5 hours to the hospital and wondered how I would get through the coming ordeal. After about a day at the Neonatal Intensive Care Unit with our Son on aggressive artificial respiration efforts, one of the nurses said to me, “Call your wife and tell her to get them to give her good drugs for the C-Section pain and get someone to drive her over here. She’ll want to see her Son before the end. I would.” So that’s exactly what I did. I made the call. A friend brought Suzy.
I consulted with the neurologist at length the next day and he said there was no point in continuing life support. Well, I mean, he didn’t say it like that. We talked about the situation and how profound the neurological damage was. There was no viable path toward a meaningful life. This was a life of pain for Gabriel. The discussion between the Neurologist and I was frank and unflinching. I told him what was most important to me was human dignity and that sometimes to preserve that dignity we have to allow the option of an exit. I wanted my Son’s dignity preserved and his pain taken away. I told the neurologist I would be the one to terminate the life support. Then I went in to tell Suzy what was happening. She and I discussed the seriousness of Gabriel’s condition and that there was really only one option to free him from pain.
Now, you see, I’m the ex-cop, the hard-ass, the tough guy. I needed to be strong in my resolve and do this for my wife who was emotionally overwhelmed by this sudden shit storm. I was being supportive and kind. The was a calmness in my speech and demeanor. I had control so that I could protect my wife from what could have been an even worse time. She wanted to go with me.
So, we went into the NICU on what turned out to be a fairly quiet day there and I spoke very briefly with the nursing team. They were standing by and had everything ready. They showed me the switch and told me he was heavily medicated and wouldn’t be in any distress. Suzy grasped my hand and kissed Gabriel as she held his hand and said a quiet prayer over him.
I pressed the goddamned button. All was quiet.
And then it was Suzy that was strong…
…and I was the one that was on my knees crying.