There was a long night while my son was in a coma in the PICU at Children’s Hospital when I couldn’t stop crying. I paced the halls, I stared out the window. I cried. I needed to talk to someone who knew how I felt. I had the phone number of a mom whose son had died from DIPG the year before. I didn’t know her beyond email. She said if I ever needed to talk she’d be there for me. So I called her.
She knew immediately how to talk to me. She said I could ask her anything. My first and only question was why didn’t you kill yourself after your son died? She paused. Said it was a very important question, one she’d given a great deal of thought. She gave me such a simple, personal and honest answer that I’ve replayed it in my mind a thousand times since.
She said DIPG took so much from her family. She reached a point where she wasn’t going to let it take one more thing. Not One More Thing.
I’m thinking about this now because I’m a few days away from the anniversary of my son’s diagnosis. There are a handful of days that are tied for the worst day of my life — my son’s death and burial, but also the day he slipped into a coma and the day he was diagnosed. Diagnosis Day was the day that changed everything. Our life got divided into Before and After. Problems got divided between before and after, the after ones being problems we never thought we’d have to deal with. For us, Christmas is Diagnosis Day, which is particularly horrible for my husband. He used to love Christmas.
The list of things that were taken from our family after my son’s death is unmeasurable. But it has to end somewhere. It ends with Not One More Thing.
You can hear it in the air. You can hear it everywhere. Does she even care? Why does Mommy swear?
Now you’re taller than me. You have an adorable faint mustache, and your voice is in its Peter Brady phase. You used to have baby fat, but now you’re lean like a library ladder. It’s almost like you’ve become a different person overnight.
Cliche dictates most people in a midlife crisis buy a sportscar. Or they get divorced, have a makeover or fall in love with youth culture. I think a midlife crisis is the natural outcome from realizing more of your life is behind you than ahead. You think, This is it? But I haven’t ________________ yet. So you make decisions designed to shake things up. But here’s the irony about shaking things up — it teaches you what your limitations are and maturity comes from accepting limitations.
mean the exasperated/befuddled “what the fuck???!” I usually exclaim. I’m talking about fuck it/why not/what the fuck do I have to lose kind of attitude that is remarkably liberating. It enables me to try new things like this hobby called blogging, or sign up to be the oldest student in graduate school this coming fall.
Everything was simple. I don’t remember feeling overstimulated, stressed out or FOMO, which are things my son feels strongly. I often used my imagination rather than electronics to pass the time. I didn’t have expectations of being constantly entertained. A favorite pastime was to stare at the clouds and find animals. I filled a lot of afternoons doing nothing. Yet it was enough.
I suggested to my son we have a 1970s day, which meant we eat food I ate at his age and play outside. This was met with little enthusiasm. Canned Italian food was declared “gross” (it is) and going outside was “not good for our skin” (kind of). The whole experiment fell apart after I dug up my old Merlin and showed him what hand-held computer games used to look like.
Pushing Fifty and a Stroller 