Widowish: A Memoir(19)
Dr. K—My wife and I are very concerned. My legs continue to weaken and I feel I’m deteriorating rapidly. I can barely feel my feet and my balance has become a significant issue. I’ve also been experiencing numbness from the waist down that I never had before. Every day has become challenging. I’m experiencing severe leg, foot, and core problems and my life is being impacted in ways that are frightening.
We all knew that Joel had been suffering, but hearing it, seeing it spelled out in his own words, eliminated any doubts.
In many ways I was relieved. I was eerily calm. Where nothing but confusion existed for weeks, things were now crystal clear. I was ending Joel’s life.
I now had to tell Sophie.
EIGHT
The End
It was dark outside, and the conversation took place in our kitchen. Sophie and I agree on those details.
Sophie thinks the conversation started when she asked me a question about Joel to which I answered, “We are taking him off of life support on Friday.”
I believe that I started it by saying something like, “I need to tell you what’s going on with Daddy.”
My tone was casual. We also agree on this. I didn’t want Sophie to see that I was bereft, and I didn’t want to be overly dramatic. The situation in itself was dramatic. I didn’t want to start with, Soph, we need to talk about something serious. Even to our thirteen-year-old, that was stating the obvious. Nor did I want it to feel light or unimportant. If there was a healthy or “correct” way to tell your child that her father was dying, I wasn’t aware of it.
“You know Daddy’s in a coma.” Sophie nodded yes. “And it’s very sad because the doctors think that if he ever woke up, he wouldn’t be the daddy we know. He wouldn’t know me, he wouldn’t know our house. He wouldn’t even know you.” That’s when my voice started to crack. I wanted to grab her and hold her and let her cry and scream in my arms. But she was stoic, just like her dad; so I tried to be, too.
“Would he be in a wheelchair?” she asked.
“Yes, he would,” I said. “But he wouldn’t be able to push it.”
“So who would?” she asked. “Us?”
“I don’t think Daddy would like either of us having to take care of him that way.”
She nodded.
“Someone else would have to,” I said. “Like a nurse. Someone else would have to do everything for him. He wouldn’t be able to eat on his own, or brush his teeth, or go to the bathroom.”
She was taking it all in, trying to comprehend these impossible words I was saying.
Joel was not a “weekend” kind of father. He was hands-on. He and Sophie were deeply connected. He was in awe of her kindness, her intelligence, her talent. I could go on. We were both besotted with her.
“So would we put a ramp in the house?”
This is when I started to cry. I tried to maintain my composure, which wasn’t difficult as I was totally numb. I couldn’t believe I was having this conversation with our child. I couldn’t believe my husband was the person I was talking about. Her father. Our family.
“The thing is, I don’t think Daddy will be coming home.”
In an instant, I saw something in her face change. It was as if she went from the innocence and bliss of childhood to the shattering realities of adulthood. Tears welled up behind her eyes.
I want to say that I held her and that we cried and wailed together. It’s possible that we did. Neither of us remembers.
Eventually I told her the plan for the next few days.
“So I know Halloween is in a few days. You can still go out with your friends and dress up. But the next day, in the morning, we’re going to say goodbye to Daddy.”
“Will I go to school that day?” she asked. Which killed me in a way I can’t explain. She was a rule follower, a good person, like Joel.
“No, Smoosh. You won’t have to go to school that day or even the following week. We’ll see how you’re doing after that. You have the week off for Thanksgiving coming up, too, and we’ll just take it day by day. Give you the time you need, OK? Your teachers and everyone, they understand.”
When Joel was first moved downtown, I set up a meeting with the on-site therapist at Sophie’s middle school. She was new that year; she was young, and very kind. I wanted her to know what was going on so that if Sophie needed a quiet space to retreat to during the day or simply someone to talk to—someone other than me—about what was going on, she’d be able to. The therapist also acted as liaison with Sophie’s teachers, all of whom were compassionate and devastated by what was happening at home with one of their favorite students. They checked in with me frequently and were on the growing list of people who were getting the email updates.
Sophie accepted what I told her. Just seeing Joel in the hospital for those three weeks—which sometimes seems like three years, and alternatively, three minutes—was scary for her. She seemed to understand that there was no life left for Joel to live. At some point that night, we got into my bed and snuggled. Together we cried.
There was a game show that Joel and Sophie liked to watch together when she was younger. For the life of me, I could not understand how the show worked. It had to do with suitcases containing money, a hidden banker, and contestants guessing which suitcase had the most money in it, which could potentially be their prize. At 7:30 p.m., after a bath and before books, they’d watch a half an hour of TV. I can still hear them shouting, Wheel! Of! Fortune! Or doot-doot-doing to the theme song of The Simpsons. I didn’t have to be in the same room to hear Sophie’s giggles or know that Joel was smiling as they sat smushed together on the couch. He loved this time with her, and I loved that they had their routines.