So many of you read about Ezzy every week. But as I was drafting a post today about some of the things Ezzy is doing, I realized how short my words fall in explaining her amazing abilities. Those of you who follow my writing about her know her in a very special way–through my eyes, … Read More
Advocacy
My Biggest Fear
The receptionist on the telephone is helpful as I try desperately to align my schedule with their availability. Scheduling appointments is never easy for me. Esmé’s therapies, her ever-changing daytime caregiver schedule, and my own obligations leave these tiny little cracks where I just might be able to squeeze in something to take care of … Read More
Um, no.
Today I want to talk a bit about sensitivity. I want to write about how sharing the world with other humans requires that we think about how our actions, our words, our postures impact the people around us. This is true of all people, all people are deserving of the thoughtful attention of the people … Read More
When she is five she’ll talk, right?
A few weeks ago I was in our grocery store parking lot getting Ezzy settled and feeding her the last of her tube-food before we headed in when I noticed a familiar face walking toward us. It was Marilyn Hunter, one of my high school Spanish teachers. We’ve run into each other a few times … Read More
Five Things I’ve Said to Strangers That Were Not Jokes
I used to get jealous looks from the moms of the tantruming toddler and the whiny pre-tween as I pushed my quiet solemn child around the grocery store. But lately we aren’t flying under the radar anymore. Part of it is that people have begun to register Esmé’s unusual motions, the bit of drool sliding … Read More
And Back Again
When Esmé got so sick at three months old I was still in the middle of the early transition into motherhood. I was still in that state of confusion I think most new moms experience–coming to the realization that this small needy creature is for real, forever. I thought things would “get better”–like the do … Read More
My Gift
Yesterday I read a post written by a fellow contributor to The Mighty, Laurie Arnold, “When My Mom Asks ‘Why, God?’ About My Child With Special Needs.” The post just floored me. Please go to read the original post on her blog, I’m Julia’s Mom, or The Mighty, but the crux of it has to do … Read More
Whoosh
My second short book, Whoosh, will be coming out on July 15th. It is currently available for preorder through Amazon. It will also be available as part of the six-story paperback and e-book compilation, 6 of 1 Childhood, released by Ponies + Horses Books. This story has not been an easy one for me to … Read More
Palliative Care
Last week I had an appointment that I was both really looking forward to and dreading, simultaneously. The appointment was with Pediatric Advanced Care Team at Boston Children’s. They are the group who does palliative care there. Now, I know that most people hear “palliative care” and think very specific things about end of life … Read More
Four years old
Last Monday we had one of those days where I got more done in a few hours than I am typically able to get done in a week. It was glorious. It was also ridiculously hot and sticky. So, in order to celebrate how fantastic the whole day was, Ezzy, her caregiver Mayah, and I … Read More