"Dad, I'm afraid you're going to die," my 6-year-old said as she cuddled up to me in bed one afternoon. "I don't mean like die when you're old, I know everyone dies. I mean like die when you're young, from ALS." I wasn't sure to laugh or cry, she said it so nonchalantly like she was telling me about her day at school.
From day one, we decided to go into my disease with eyes wide open and not shelter our daughters from the harsh reality. Yet, they know I have ALS friends who have lived a long time. They know I'm going to do everything possible to stay alive until there's a cure. We still talk about the things we'll do when I'm cured like building the playhouse in the back yard we never got to before I got sick . At this moment though, fear had beat out hope for my 6-year-old daughter.
I try to put myself in her shoes but can't imagine the weight of it all. When I was her age I was had a lot of real fears. Well real in the sense of they seemed real me. I was terrified of Muammar Gaddafi -- he was my boogie man. I was also overwhelmingly scared of the Russians. I would sleep in my parents' bed every night because I thought they were going to march up my suburban Connecticut Street in their tanks and attack. I would make my mom sit in the bathroom while I showered because of it. I didn't want to be captured by the Russians naked. Those were my fears at her age. I never worried about my parents dying. They are in their seventies now and I still don't.
I thought for a minute and slowly slurred out, "I'm not going to die soon honey." Since I wasn't in front of my eye gaze computer, which allows me to communicate by looking at letters on a computer screen, I could only assume she understood me. I didn't know what else to say. A few months earlier she saw me get taken away on a stretcher due to a sepsis infection that did almost take my life. So she knows her dad is mortal, with or without ALS.
As I laid there unable to speak, move my arms, and with my feeding tube hanging out of my stomach, I still tried to be the strong and blissfully ignorant dad she used to know. I tilted my head to the side so I could feel the warmth of our heads touching and mumbled, "I love you." Really, none of us know when our time is up, be it from a Russian attack while we're conditioning our hair or from an untreatable terminal illness.
My kids are acutely aware that everyone dies, it's something most adults don't even think about until they are forced into it. Realizing your mortality however can be quite liberating. Realizing it about your dad at six years old is an entirely different thing. I can only show them that being brave isn't not fearing death, it's about not letting it get in the way of living.