Notes from a Rare Disease Mom

The other day I was reading a book.   It was a reflective book, one that I turn to when I need a little inspiration.   I’ve read it many times before when suddenly I came across a passage that blew my socks off.   It was so striking, I couldn’t believe that it had been sitting there in that book the whole time.   How could I have missed this amazing passage?   I’ve read this book so many times!   It made me wonder if I had just skimmed over that part before and not really read it or if I had read it the whole time and was just now ready to begin to grasp that concept.   When I first learned about Thea’s diagnosis, I remember the feeling of not being ready, of not being able to really hear the diagnosis.   That part of me thought that after we got out of the hospital, things could just go back to the way they were before.   Our daughter would be perfectly fine.   The diagnosis lingered in the back of my mind, mysteriou...

Thea is usually a pretty happy kid…unless she is tired.   When she gets tired, she gets stubborn.   This stubbornness usually involves public humiliation for me.   This summer, we went to the zoo.   It was a warm day, so I rented a stroller, bringing water and snacks so that I could make sure that our day was fun and not overtaxing her body.   At the end of the day, we returned the stroller to the zoo area.   I suspected that Thea was getting tired and beginning to get to her “ unreasonable” stage.   I knew this was the case when, turning around, I found her behind me arms crossed and glaring.   “It’s time to walk like a big girl,” I told her.   She continued to glare.   Our friends had already reached the zoo exit by that time and were probably wondering where we were.   I took a few deep breaths, hoping they weren’t in a hurry to leave. the "unreasonable stage" “Our friends are waiting,” I reminded her...

We met our new neighbors a couple of weeks ago.   They stopped by to introduce themselves, bringing oranges and fresh avocados from their son’s tree.   We cover the basics in our introduction.   I’m a teacher and my husband is an electrical engineer.   We have a daughter, Thea, and Delilah, our dog, is already licking them and begging for attention.   I like them immediately and can tell that they will be good neighbors.   We mention that we will be out of town the next week, flying to Houston.   It seems like a good idea to let our neighbors know.   They ask what we are planning on doing during our trip there.   Tyson and I pause for a beat.   We are going to a medical conference, I say.   I see the question in their eyes.   Hadn’t I just said that we were a teacher and an engineer?   Why would we go to a medical conference?   However, they politely don’t ask any more questions.   I feel a smal...