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
Special Needs Child
What happened on Sunday
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
Friends
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
No
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
Feeding Tube Awareness Week
This week is Feeding Tube Awareness week. I have spoken here quite a bit about Esmé’s feeding tube. As my post from last year’s Feeding Tube Awareness Week explained, Esmé has never had an uncomplicated relationship with food. At first she did not eat enough to grow–and she threw up much of what she did eat. … Read More
Another Non-Answer Courtesy of Genetic Testing
Today I looked in the mirror and I saw someone I barely recognize. I’m pale. The bags under my eyes are purple. My lips are drawn tight in a thin line. It is really hard for me to explain quite how difficult the last two weeks have been. I have tried to hide it, but … Read More
Beyond Acceptance
Today I meant to write a post on January 20th, the International Day of Acceptance–a day devoted to the social acceptance of disability. I mean, I suppose I am still writing something about that in a way…but all of the lofty thoughts I started having about what acceptance means, about the goals beyond acceptance–where people … Read More
Raising Esmé
Today is Esmé’s fourth birthday. Her birthday–and the days that lead up to it–is always filled with a lot of mixed emotions (you can see last year’s post here). This day marks the entrance into the world of the most amazing person I have ever known–the absolute love of my life. It is an overwhelmingly … Read More
Four Years of Ezzy: Year 4
This year has been completely crazy. Looking back over the photos from this year, I don’t even know where to begin. This year was all about huge gains. Esmé started this year having just learned to sit up, with a kidney that almost certainly needed surgery, and not making many attempts to communicate. Now she … Read More
Four years of Ezzy: Year 2
The theme of the second year of Esmé’s life was seizures, unfortunately. She was starting to seize every week, almost to the day. We still weren’t certain that these things were, in fact, seizures–but they were. She had tons and tons of hospitalizations. We spent a ton of time in Boston for EEGs and a … Read More