Wednesday, December 4, 2013

From the Archives: The JCFS Interview

Earlier this year, one of the women in the marketing department at one of Zoe's therapy clinic asked me if I'd be interested in talking to them about "The Big Deal" and our experiences with Zoe. I'm not sure I'd ever been interviewed prior to that, but I wasn't going to say no. If there was interest in our story and Rett Syndrome in general, we'd oblige them. What I didn't count on (but should have since I'm a sap), is how hard it would be to get through a phone interview with simple questions about my daughter without getting emotional. The woman on the other end of the phone was incredibly patient, since she couldn't tell why it was taking me so long to fight off tears and answer her question. Luckily, she sent me a draft of the article before they posted it, so I had a chance to make edits and clarify anything that didn't come across clearly. Which was a lot more than I thought. It was like a much nicer version of the end of "Almost Famous". I sounded like a sucker. I am a sucker.

Better Than a Flying Car

I've been 40 for a few days now and had time to reflect. When I was younger, I was sure that by this time, flying cars and jetpacks would be commonplace (and by younger, I don't mean grade school age, I mean a week or two ago). I still have confidence in science and technology to achieve amazing things, but my own interests have changed...

Ever since Thanksgiving Day, we have waited for daily updates from one of the members of our Rett family. Their daughter has been in a Boston ICU with an infection that came out of nowhere. In addition to the other things she normally couldn't do for herself, she couldn't breathe on her own, and there was no way to know if she'd win her fight. As I write this, they're hopeful but unsure. And all weekend we thought about them, and we thought about their sweet daughter. But we mostly thought about our Zoe.

Given the nature of Rett, we can't predict if the next upsetting personal medical news will be about another girl or about Zoe. We don't know if Zoe's body won't know how to respond to a simple cold, letting it turn into a more dire infection. We just have to be prepared...for things it's not fair to have to prepare for.

I'm 40 years and five days old. I'm a big boy. But Zoe's a little girl and deserves to be one. And to us, her having that chance would be so much better than a flying car. We hope you feel the same way. If so, please consider sharing what you can to help further research (and our eternal thanks to those that already have).