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.
It was announced that Ted Nugent is headlining my local county fair this summer. He’s an aging 70s rock star who spouts hatred, misogyny, prejudice and alternative facts. I wrote a letter to the fair committee and said that after a decade of enjoying the event I won’t be bringing my kids this year. I’m disgusted that my community is hosting this a-hole. I’m pissed off. I’m…playing right into Ted Nugent’s hands.
Ted Nugent issued a statement in response to the controversy that said, “Only liars and America hating scumbags have a problem with me.” WTF? This pissed me off more. Then I get pissed about letting Ted Nugent piss me off. Then I think about how our culture is addicted to outrage, and how the media feeds our outrage, and I get even more pissed off at the whole circle of outrage…F-you, Ted Nugent, for setting me off.
The whole thing makes me feel like I should do more yoga and meditation. Then I feel guilty for not doing enough yoga and meditation. It’s exhausting. And I’m tired of feeling exhausted all the time. And this pisses me off all over again. Is this ironic? Or merely Alanis Morissette-ironic?
But then there’s the flip side. Let me switch gears for a moment. I’m also hopeful about certain things. Like my kids. They calm me and ground me. They are my hope and joy. I’m excited to watch them navigate toward their goals despite the inevitable obstacles and frustrations they will face. I’m excited when my son talks about politics – he’s twelve and he’s into politics! He wants to make the world a better place. (He also wants to play Fortnite all the time, but oh well.)
The smile on my daughter’s face is brilliant. It fills my heart. I love watching her think. It’s like magic. The greatest thing about being a mom is the love. There’s nothing like it. The worst part is the worry. It never ends.
Which brings me to my fears. Loss is my biggest anguish. Although loss is a normal part of life — we lose our keys, hair, money, friends, jobs, our way — some of us lose our children and that’s irreparable. The loss of my oldest son keeps me up at night and it’s why I live in two worlds at once. But I would still do everything the same even if I knew having him would end with loss — I would still suffer the enormous heartbreak if I could be his mom again. And I would move time and space to make it happen.