Madeline Musto died last night. I didn’t hear that before I wrote and published this post. Oh, no. That poor family. They’re in our thoughts and prayers.
Madeline Musto, an adorable 5-year-old girl from Schenectady, was recently diagnosed with an inoperable brain tumor. I’ve been hearing about her via email lists, and the TU Parent to Parent blog, and the TU Schenectady blog, among others. The family is asking for prayers for her, and if you don’t pray, you can always send some healing thoughts. They are also accepting donations as they research possible treatment options. The family’s web page for updated information is here.
I was going to add this note to last night’s post, and I couldn’t do it. It just deserved its own post, and I don’t even know them, so really, your time would be better spent checking out the words and pictures from the family photo shoot than anything that I could say.
Then I remembered that I don’t think that I ever shared the following essay, which I’d put on another blog in May 2010. And it seemed related, so here it is edited a bit.
Years ago I ran into a moms’ group friend who was carrying her toddler because his entire leg was encased in a cast. “What happened?!?” I gasped. She shrugged. “He was just running in the back yard.”
I think that it was possibly one of the most frightening statements I’d ever heard. Because, of course, my daughter ran in the yard all the time. I had been under the impression that children running in the back yard was a good thing. Fresh air! Exercise! Joyful playing! Now it was just another moment of daily life fraught with peril.
It’s not that I was unaware of danger. As soon as M was born we understood her fragility–she was rushed into the NICU for meconium aspiration. It was only a couple of weeks later that my husband and I were home with her, getting sucked into a short-lived tv reality drama based in a children’s hospital. We’d sit on the sofa, tears streaming down our cheeks, and cling to our own fully-recovered baby girl. Still, as day passes into night again and again, and you repeatedly wake up to your own lovely child, safe and sound, it begins to seem quite possible that you’ll all live happily ever after. Until you run into someone whose kid got hurt pretty badly doing something completely normal.
Because, you see, I would have felt enormously better if this toddler had been up on the top of a very large climbing structure, or if he’d managed to escape the house and gotten onto the street, or if he’d been–I don’t know—riding on a mechanical bull. Because my little toddler girl would not be allowed to do that. It is so much less frightening to find fault with the parents, because then, you can imagine that your own children are safe. I think it’s what makes today’s parents so careful. Because the only thing worse than having something terrible happen to your own kids is having something terrible happen to your kids and being the person who’s blamed for it. And then having the blame go viral.
So we see something awful and frightening and we lash out at the parents for letting it happen. This is on my mind because of the recent Single Ladies brouhaha (if you need background, you can see the TU Parent to Parent blog here and at the moment you can still see the video itself here). But so much of the anger is really rooted in fear, fear about what can happen to our own children if we’re not constantly vigilant. I always tell my girls that parents act angriest when they’re afraid. I never shriek at them. Unless I think they’re about to be hit by a car.
That’s all part of the reason why the moms in my neighborhood have been so uneasy lately. Because sometimes it’s nothing that the parents did or didn’t do, it’s nothing you could ever anticipate. A beautiful 13-year-old girl died suddenly of a brain aneurysm just over a week ago. “She’d felt a little bit light-headed, but that was it. They’d gone to the doctor just in case,” one mom murmured to me. Meanwhile our local strep epidemic seems downright sinister since reading the recent TU article about strep entering a child’s bloodstream and leaving him with amputated limbs and a fight for his life. I’m not the only mom who’s been starting each morning with detailed questions about how everyone is feeling. We were talking about this, in hushed tones, at nursery school pick-up when another mom corrected me, “No, sometimes there aren’t even symptoms. I know a little girl who had no sore throat, no headache, nothing at all.” And we all stood there in a circle, stunned. How are we supposed to process this, how can we live so unbearably close to tragedy every day and function as mothers without choking on our own hearts?
When a neighborhood girl was diagnosed with cancer, families stumbled over each other to make them meals. We all wanted to help, of course. But was I the only one who selfishly felt that helping another family might provide me with some sort of karmic inoculation against having the same thing happen to my own kids? With all the recent news, the same irrational reasoning prompted me to finally get myself on the National Blood Marrow Registry (you could do it now, too: if you’re intimidated by vague talk of payment, I’ll end the suspense and tell you that it’s a suggested donation.) And of course it doesn’t help. Or, really, it could help someone, but any number of virtuous acts can’t buy your family a free pass to health and happiness. Who hasn’t heard about a life tragically cut short in the middle of good deeds, kindnesses, attempts to make the world a better place?
I listen to stories of survivors who say that they are grateful for what medical tragedies and family losses have taught them, and for how their lives have changed. They find greater value in the everyday pleasures of a blue sky or fireflies. Food tastes better, they are more patient and kind, they hold their children close and breathe in their scent and fix each moment as a memory, just in case. And so I try my best to do these things myself, now, in desperate hope that the gods or God or Fate will take note and withhold all such lessons from me and my family.