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.