Managing Rett Syndrome is a Full-Time Job

A few months ago while Lily and I were flying back from Florida, we struck up a conversation with the woman sitting next to us.  It turns out that this woman works in the media – in a pretty high-profile way.  Vera had never heard of Rett Syndrome and was intrigued.  And so we kept in touch.

About a week into my 5-week leave from work this summer, she interviewed me for an online magazine.  We weren’t quite sure what the focus of the interview was going to be but it became pretty apparent with the first few questions that it was going to be about how the hell I manage working full time and caring for Lily.

You see – I was week one into a 5 week leave and it hit me in these first five days of not going into the office just how much I have on my plate with Lily.  Managing her 4 caregivers, her 2 home-based therapists, her 15+ doctors, filling out medicaid paperwork, filling out private insurance paperwork, making appointments, thinking about her diet, writing about her diet, counting calories, carrying therapy over into the home, ensuring that I’m communicating effectively with her teachers and therapists at school ALL while managing a home (laundry? dishes?).  Holy shit.  I really didn’t know how I was keeping up.  And now that I’m back at work, I’m still not fully sure how it all comes together.  But it does (hint: super helpful caregivers and therapists/teachers).  And so I continue – on most days, with a smile on my face.  Because I really have the sweetest, smartest, bravest, funniest, coolest kid in the world.

If you want to check out our interview, click here.

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