The dirty little secret about Caroline’s Cause is this: we are amateurs. Amateur bloggers, amateur community organizers, and medical laymen (except for Lisa, who is a bona fide nurse). But Rett Syndrome doesn’t strike only those of us who are well equipped to navigate the layers of red tape and medical and insurance bureaucracy. It doesn’t care if you’ve got a functional family or a good strong dad. It just shows up one day and you have to deal with it the best you can.
Tony has always had a cool head in a crisis. One day when I was a teenager I turned on the stove at mom’s house to heat up this huge kettle of oil we had for making French fries. I went into the living room and started watching TV and forgot about the oil, which always took forever to heat up. When I realized my mistake, the kettle looked like the end of the world – a great pillar of dark smoke rushing to the ceiling where it spread like a giant mushroom cloud. The switch to turn off the element was too close to the burning oil to risk reaching back there. I felt certain the house was going to burn to the ground. Tony was taking a shower and came racing downstairs and into the kitchen, one hand holding a towel around on his waist. Sizing up the situation, he rooted through the cupboards, found a box of baking soda, ripped off the top of the box and dumped it all into the oil—poof!—extinguishing the pillar of smoke and fire. I was never so pleased to see him in all my life.
I called Mom a few years ago and she told me a story about a time when Tony, Caroline and most of the rest of his family were staying with my mom. She said Caroline was in the front room, hooked up to all the machines that monitor her during the night. And my mom was still getting used to all the machines and the hospital bed in the dining room and wondering what it all means and maybe even a little overwhelmed at just the sheer complexity of what it takes to care for Caroline. All of a sudden all of the machines started to clamor and alarms start ringing and my mom and everyone are looking around like – oh, my God, this is the end of the world – What do we do? What do we do? And Tony comes down the stairs from the bedroom and sizes up the situation, and then mom said he scooped up Caroline in his arms and held her. And as he held her, she calmed down, and the machines stopped ringing, and eventually it all returned to peace and quiet again. I remember not feeling surprised at all when she told me this story—of course he knew what do. Tony comes through in a pinch.
All father’s start out as amateurs, but the fathers of Rett girls have a few more rabbits to pull from their hats than the rest of us do.
Happy Father’s day Tony!