What Ezzy Does

September 2, 2015Advocacy, Special Needs Child 8 Comments

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

My Biggest Fear

August 27, 2015Advocacy, Special Needs Child 9 Comments

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.

August 20, 2015Advocacy, Special Needs Child 10 Comments

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

And Back Again

July 23, 2015Advocacy 5 Comments

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

July 5, 2015Advocacy, Special Needs Child 8 Comments

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

July 2, 2015Advocacy, Special Needs Child No Comments

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

June 3, 2015Advocacy, Special Needs Child 7 Comments

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

May 18, 2015Advocacy, Special Needs Child 2 Comments

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