Esme Can Read – The New York Times


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Credit Illustration by Abigail Gray Swartz

Today I realized that my daughter could read.

Esmé can read. I keep repeating it in my head over and over, trying to let the reality of this discovery settle in.

Earlier in the day I tried to challenge her knowledge, presenting more difficult words, trying to trick her. She had gotten every word I’d shown her — she’d looked bored with dog and cat and Esmé, so we had moved on reaching a seven-letter word. The only one that gave her pause was Maman, written in the French manner (as I refer to myself) rather than Mama as it is in her book “I Love You, Stinky Face.”

I look down at my daughter who is nestled into my arms in the rocking chair in her bedroom. “Great job with your words today Esmé,” I say. She looks back at me and smiles proudly, showing all of her teeth and wrinkling her nose, “Mamamama mop-pah, ah ah asch,” she replies.

It is a big deal for any 4-year-old to read. But in our case, there is something a bit more surprising about all of this: My daughter Esmé does not speak.

She does not sign.

She cannot point or use picture exchange.

I have never communicated with my daughter in the ways that most mothers can with their preschoolers. She has never told me about a bad dream that woke her. She has never followed everything I tell her with “But why, Maman?” She has never spoken the words “I love you” to me.

Esmé has disorders that even four years into her life we still do not properly understand — a mutation each on the genes associated with PCDH19 Epilepsy and SCN8A Epilepsy. But there is a suspicion that these mutations do not fully explain why Esmé struggles in the ways she does, and we have researchers on the cutting edge of genetics looking deep into her genes to better understand her.

Esmé’s list of symptoms is extensive, as is the list of more than 20 doctors we see to treat these symptoms. She has epilepsy, developmental delay, abnormalities in her heart and kidneys and a movement disorder. She had an abdominal feeding tube placed when she was 3 months old after a cardiorespiratory arrest event brought on by pneumonia. She is very small, her muscle tone is very poor, and her joints are hyper flexible, making it difficult for her sit up or stand. Her low tone also challenges her ability to protect her airway, control reflux, eat, and produce a range of sounds.

I have always known in my heart that Esmé understands so much of what goes on around her, but between the her lack of speech, her failing limbs and her unusual neurological activity, it is very difficult to find ways to draw her out. I have no clear idea of how my daughter perceives the world, except for the stories I tell myself about what I see in her eyes — that spark of excitement, recognition and curiosity. What I know about her world I know only obliquely. I know that if the “The Muppet Movie” soundtrack doesn’t take her out of a funk, she is really very sick. I know that she likes it when we tell the Yo Gabba Gabba! band on TV that Ezzy should be in their band, a statement that is always met with loud clapping and smiles. By her generous belly laugh I know that she loves being kissed and tickled.

I also know my daughter in a deeply primal way that is usually contained to the early newborn stages of parenting. We are so hopelessly intertwined emotionally and physically, existing together in the spaces between words — in the world of things that are felt deeply and understood in their entirety without ever being spoken aloud.

But, as someone who has had a continuing romance with words, it would be a lie to say that this is where I am most comfortable. I long to ask her about her thoughts, to know her dreams, to hear her voice call out to me with a need, to feel her whisper a secret in my ear. Seeing her respond to the written word, to reach out for the “Yes” and “No” cards in response to questions, I realize that we can and will begin to unravel her desires, her needs, and, perhaps, eventually, her thoughts.

I look down at my daughter’s form in my arms; she has finally drifted off to sleep. I feel as though I am on the edge of getting to know Esmé in an entirely new way — something that both excites and frightens me.

Tomorrow, I will ask her if I can ask her a question.

She’ll select No, in perfect preschooler form.

Am I ready for this?

Yes.



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