6 hours ago
Friday, June 4, 2010
The circles of parent hell
I've had a lot of sad thoughts these past few days, capped by Jeri's mention yesterday that she had a daughter, Amber, who had spina bifida and died of a respiratory infection. This week I also learned that Mama Pundit blogger Katie Granju had lost her teenage son. Gazing at photos of Henry Louis—so beautiful, spirited and full of life—was painful.
I first read about what happened on Her Bad Mother, Catherine's incredible blog. She's also dealing with a family tragedy: Her sister's son, Tanner, is dying of Duchenne Muscular Dystrophy (DMD). Kristen over at Shredheads started a cool campaign to help raise awareness about DMD, Tutus for Tanner; please check it out.
When I hear these stories I grieve for the children, but I'm haunted by thoughts of what their parents are going through. They knock any pity I have about my own life situation right out of me. Sometimes, you get so distraught by the challenges your sweet child faces and the drama of his disabilities that you forget there are far, far worse fates. Sometimes, when you're the only parent in your group of friends who has a kid with disabilities, you feel as if you were the only family struck by lightening, that "Why us?" question seared into your heart. Sometimes, when you sense people feeling sorry for you, you sink into the mire yourself.
Perhaps I do occupy a certain circle of parent hell because of Max's stroke and subsequent disabilities, like those circles of suffering I read about in Dante's Inferno as a college freshman. But certainly, parents whose children have passed away or whose children are terminally ill occupy far deeper circles of parent hell.
I used to volunteer in the pediatric playroom at Memorial Sloan-Kettering, a hospital that treats cancer patients. The kids there behaved like kids; they may have been gaunt, bald and hooked up to IVs, but they still wanted to play games, color and just be kids. It was the parents who'd sadden me. They were the ones who looked like the walking dead.
There are other circles of parent hell, in my mind. There is one inhabited by parents whose children have gone missing. And there is one filled with parents whose children have been abused. And there is one with parents whose babies have been stillborn. I think about these circles of parent hell whenever I hear a horrible story about a child.
I have no words left tonight, just thoughts of Amber, Henry Louis and Tanner, and their parents.
Posted by Ellen Seidman at 1:35 AM