A grumpy day, an anniversary, and a book

April 30, 2015Special Needs Child

This year the day almost passed by without me knowing what it was. I’m not sure if it happened because yesterday was a kind of gnawingly crumby day–in which Esmé moved over from “maybe getting sick” to “sick” while I am still not over my own awesome bronchitis, in which we have the third caregiving … Read More

Yes and No

April 23, 2015 15 Comments

Something pretty exciting has been going on here. It has to do with words. I’m certain that I will be posting quite a bit about words over the next little bit…but for now, I would like to start with two words: Yes and No. We have been using Yes and No cards with Esmé to … Read More

Hug

April 15, 2015Special Needs Child 5 Comments

Last summer I wrote about being asked if I felt loved by Esmé. At the time I quickly responded that, yes, of course, I felt loved by Esmé. And I do. I really do. I know, beyond a shadow of a doubt, that Esmé loves me deeply. I know it with the same certainty that … Read More

I Don’t Know How You Do It

April 8, 2015Advocacy, Special Needs Child 5 Comments

My friend Channing and I have been editing a few essays together—talking regularly about life with Ez and how I write about it. There is this funny concept we keep coming back around to over and over again: I don’t know how you do it. It comes up in our conversations a lot because I … Read More

A Response to An Enlarged Heart

April 2, 2015Advocacy, Special Needs Child

Recently, a friend passed along a 2003 article from the New Yorker, “An Enlarged Heart” by Cynthia Zarin, which was recently republished in her 2013 collection An Enlarged Heart. My friend thought that I would very much enjoy the narrative style and relate to the content of this story, which followed the author through her daughter’s … Read More

What happened on Sunday

March 24, 2015Special Needs Child

On one level I can attest to the fact that you can become accustomed to your child completely terrifying you. On the other, I promise that you never become ok with it. You become okay at hiding the fact that you are terrified. You become ok at dealing with the terror…with the adrenaline rushing through … Read More

A train ride to New York

March 16, 2015

On Saturday morning I woke up at 5:30am to catch a train to New York City. I love that train ride, 2 1/2 hours down along the Hudson river. The bumpy ride over old upstate tracks, the spotty wifi, and the view of the Hudson all adds up to a magical trip happening at a … Read More

Friends

March 2, 2015Special Needs Child 2 Comments

Lately I have found myself thinking a lot about friendship. The last few weeks have been fascinating for me to watch as Esmé has been forming her own friendships at school–more or less independent of me. I had known that there was a group of kids at school who seemed particularly interested in Ez, but … Read More

Clinical Trial for Ganaxolone with PCDH19 Epilepsy Patients

February 24, 2015

It was almost two years ago now that I met up with a friend I’d connected with on Facebook, Paola. Paola is the aunt of a little girl in Italy who has PCDH19 Epilepsy, and she, together with her sister and other parents of children with PCDH19, had begun a foundation to help support research … Read More

No

February 19, 2015Advocacy, Special Needs Child 2 Comments

It’s such a tiny little word, but it has so much impact: No. Not going to happen.  It’s not likely.  I’m not saying no, but [I’m basically saying no].  I’ve heard more variations of this word in the four years since having Esmé than I did in the 28 before that combined. The psychology of … Read More