I apologize for the relative brevity of this post. I’ve been on long vacation in Florida with my son and his family and recently returned. I’ve been doing a lot of catching up – emails, bills etc. Also, these recent posts are not from previous writings and are being developed in the moment. In essence, they are the beginning drafts of my story and are taking longer to create.
Mike slept soundly all night. Not so for Maggie and me. We knew we had to talk to him soon and decided that we would do so shortly after breakfast. All the kids were sitting in the family room watching one of Mike’s favorite T.V.shows. Jenny, Erica and Paul were on the couch while Mike was in his recliner with his feet propped up. Maggie and I had originally considered breaking the news with everyone in the room at the same time, but decided against it—Mike should be the first to know.
“Hey guys, why don’t you go upstairs for a while. Mom and I need to talk to Mike.”
A pained look darted between Jenny, Erica and Paul as they slowly rose from the couch and exited the room. They were old enough to realize what the“talk” was going to be about.
Pulling the lever on the side of his recliner, Mike sat up. He nervously moved his hands up and down his thighs while he stiffened his back and leaned forward. I sat beside him on the arm of the couch while Maggie sat on the floor at Mike’s feet.
How do I tell my son that he’s dying? No, how do I tell him that he’ll be dead—maybe in a couple weeks, maybe in a couple days. “Dying” implies time and with time there’s hope– and there is no hope anymore. Dr. Sortino’s words kept echoing through my head “There’s nothing more we can do for Michael...”
“Mike, I …uh. Well, mom and I…uh...Well, we need to talk to you about the results of hospital tests.”
Mike’s back stiffened even more. His hands stopped. I think he knew what was coming.
Damn, this is so hard. I’m a trained professional with a master’s degree in social work who for over 20 years has been helping families and individuals face their most difficult problems. I’ve told parents in similar situations that they needed to be honest and that at some level their child already knew they were dying. Not facing that reality was only more confusing and more stressful for everyone in the months or days that remained. I would tell them that they could be missing some very precious moments with their child, moments that they would eventually treasure forever. Yeah. That’s what I would tell them —and that’s what I believed.
I wanted to be completely honest with Mike. I wanted to tell him exactly what the doctors told Maggie and me – that there was no question that he was going to die. No false hopes. I didn’t want to minimize anything. I wanted to tell the truth and then Maggie and I would hug him tight, tell him we loved him and let him know that we would be there for him and we would get through these final days together as a family. Then I would call Jenny, Erica and Paul back to the room and tell them what they probably already knew. And we would all hug Mike and begin the end.
But I’m a coward. When it came time for me to be totally honest with my son, I couldn’t do it.
As he sat directly in front of me, I froze. The words I wanted to speak ran as fast as they could to a much more comfortable place in my mind. I began struggling with how to soften the reality. Looking at my son, our first born, I couldn’t tell him that his life would end soon and that the only unknown was how much longer he would live. I couldn’t be that final. So I sat there and clinically explained what the doctors told us about the failure of his shunts. And when he asked me what that meant, I chickened out again and told him that he “could possibly die.” I knew there was no possibly about it, but I couldn’t tell him that. And when he asked if there were other options, I again clinically described the cranial reservoir,the daily ritual of draining it multiple times, the eventual infection, accompanying pain, and the possibility that it might not work.
“No!” Mike was quick to answer. “I don’t want to do that last thing. What’ll happen if we don’t do anything?”
I hesitated. At least be honest with this. “Well Mike, it’s possible that you could go into a coma.” Again, that word possible. There was no question that he would go into a coma.
Mike sat silently for several seconds then calmly said, “Okay, we’ll just see what happens.”
In the following few days, Mike spent much of his time in the recliner either listening to his favorite T.V. shows or sleeping. When awake, he continued to interact with Maggie and me as well as his brother and sisters. But, when he was asleep, we were all apprehensive. Was he sleeping or was he in a coma? Should we try to wake him or wait to see if he gets up? Rather than disturb a sound sleep, we always waited.
One evening, as we were preparing for dinner, Mike laid silent on his recliner, eyes closed. The usual sounds and smells of dinner were happening in the kitchen: pots and pans were clanking, knives and forks were clinking against the dishes on the table, and the aroma of Maggie’s pasta permeated the room. Mike remained motionless on his recliner, eyes still closed. This was unusual. Mike loved to eat and the fact that he wasn’t reacting caused all of us to pause. Was he in the coma or was he simply sleeping? We convinced ourselves of the latter and decided to let him sleep, thinking he could eat later. However, Maggie’s glance indicated that she and I were wondering the same thing - was he in the coma?
As we began eating, Mike shouted from the family room, “Hey!! I ain’t dead yet!”
So much for wondering if Mike knew.
Two days later Mike did go into a coma that lasted three days before he passed away.