I’m very excited to say that the post I wrote for Rare Disease Day on the Boston Children’s Hospital Pediatric Health Blog has been picked up by the Huffington Post Blog!
I’ll share some of it here, but visit the links above to read the full piece. Every time I have a piece published in a wider-reaching venue, I think about my blog readers and how loyal and supportive you all have been. Feel free to share the links widely!
Here is my favorite bit:
“But there is something else there as well. It is present in each of the photos from this morning: The blurs created by her hands as they flap in the air, by her head as she shakes it back and forth, by her legs as she rhythmically pounds her heels to a beat only she understands.
These blurs are the contrails of her stereotypies, her choreoathetoid movement disorder, her flailing attempts at communication. They are the intangible made visible, photographic reminders that being Esmé’s mother is also nothing at all like I expected. They are the evidence of the blur I struggle to articulate: how the fear and pain associated with my daughter’s rare diseases can co-exist with the tremendous gifts that have come out of her conditions.”