These days I have been feeling like an exposed nerve. Crying easily, being incredibly moved by the smallest kindnesses, wincing in pain at remarks that might have just slid off my back a month ago. I have also been reading a lot lately, primarily memoirs about families with children who have special needs. I cannot help but feel like my urge to step into and explore the lives of others in similar situations and my recent heightened sensitivity is deeply interconnected with the writing I am doing for the book about Esmé’s life…

I want to tell you a bit about how something from one of these books walked off the pages and into our lives yesterday.

At the moment I am reading Life Animated by Ron Suskind. It is about the ways he and his family found a way to engage with his autistic son, Owen, through Disney movies. I have been soaking it up this story, which has offered me some insights into the ways we try to “reach” Ez.

For some background I often find myself in a somewhat funny stance with relation to books about autism. There are a lot of them out there (as there should be), so stories of families dealing with autism are the most available to me. I find parallels here in the stories of struggling to communicate with their children, to find the educational opportunities that allow their children to exhibit their strengths, to seek ways for their children to be better understood. And while Esmé does not have an autism-spectrum diagnosis and this is not the disability community that we most identify with, Ez certainly exhibits what could easily be characterized by “autistic-like features.” However, these features have tended to take a backseat to Esmé’s epilepsy, medical challenges, and physical delays. It is only recently as Esmé’s health has continued to stabilize that we can focus more on her communication skills–on drawing her out…not just for us, but for others who might interact with her.

So it seems perfect timing to have started reading Suskind’s book.

Life Animated, has had several moments that have taken my breath away–moments that refill my stores of hope for Esmé. While my hope for Esmé is vague, at the same time it is so very real that it needs to be nurtured like another member of our family: Esmé’s twin sibling, hope. I constantly seek ways to grow our hope…seeking out stories of unusual but beautiful paths forward.

Thinking about family
About a third of the way into Life Animated we hear about a moment in which their extended family rallies around their son in a way that is at once ordinary and exceptional. The family members, adults and children, take a step into Owen’s world because he is different, but they do so in a way that sees that difference as an opportunity to know something else, not as a burden or an obligation.

Suskind writes:

“Because that’s what happens […] the moment the “special” kid arrives. How a whole extended family, top to bottom, gets changed by someone who stops the constant drumbeat of me and mine […] Why? Because the ways he’s different compels a minute-to-minute search, humanizing and heart-filling, for all the ways he’s not different. It’s us at our best.”

When I read this passage several days ago, the words resonated with me. I think there is something here that is so deeply telling about how kids who are “different” can reinforce bonds of love (and build new ones).

Yesterday I found myself thinking about this passage again as I watched my niece Lucy and Esmé interact under the Christmas tree.

Ezzy and Lucy
This Christmas had turned itself inside-out for us. Esmé was up for much of the night courtesy of some bizarre neurological happenings…with us rocking her for around 5 hours until 2am and then holding her through tremors for another two hours starting around 4am. We were exhausted and anxious about how Ez was going to weather the day

Ezzy lay on the floor under the tree, scooting between toys and whining more than not, while André and I feed her. Lucy, who is 16 months old, bounded between packages and toys, picking up everything, surprisingly aware of not stepping on Esmé.

At some point Lucy picks up the 60ml syringe we’ve been using to feed Ez. My step-father carefully explains to her that it is how Ezzy eats, comparing it to Lucy’s spoon, wanting Lucy to feel comfortable with it. Lu sits back on her butt, turns the syringe to face her belly. She leans over the syringe as though she is pushing the food into her belly.

The whole room sort of stops, amazed at Lucy’s understanding, and encourages her: “Yes Lucy, that’s right. That’s how Ezzy eats.”

She then moves toward Ez with the syringe in her hand. After we fill the syringe she helps me to push food into Ezzy’s tummy.

I wasn’t looking for a moment like Suskind described when I read his passage–I was thinking something vague like: I wonder if when Ez is older we will be able to create this kind of environment for her to shine.

Somehow this moment from the book was linked in to a future Esmé, a future family…I certainly didn’t expect to find it this Christmas.

But there it was, under our Christmas tree: Ezzy’s cousin–her youngest family member–searching for the ways she and Ez are the same.

Leave a Reply