I had a conversation with my daughter the other night, as we do sometimes. These aren’t the conversation I imagined having with my six-year-old. Instead they are led by my best guesses at conversation topics and two battered cards reading “Yes” and “No.” Sometimes she is just humoring me and sometimes she is unavailable for conversation, but today? Today she held my gaze insistently. She needed me to understand something.
These fleeting moments of connectedness are so precious to me…but I often find myself afraid to grasp them, thinking they will disappear between my fingers, exposing that there isn’t anything there to hold after all.
What if I have misunderstood her, and what I’ve recognized is little more than a mirage…a simple reflection of what my mind needs to see, rather than what she needs to say?
She’d been crying, moodily, on and off for a while. So, we plopped down together on her oversized beanbag, Yes/No cards in hand. She looked at me and ground her teeth together, and then winced and cried.
I asked, “Ezzy, do you cry when you grind your teeth because it hurts?” She swats at the “No” card, telling me, No
“Does it feel good to grind your teeth?” Yes
“Why do you cry then? Does something else hurt?” No
“Do you cry because you know mommy is upset by the grinding?” No
“Why do you grind and cry, then?” I ask it not expecting an answer, of course—because the Yes/No cards are little help here. But, she surprises me by holding my gaze, hard, and then gently placing her hand on my throat for a moment. Then she lifts her hand joltingly and touches my mouth. Her eyes never leave mine.
There is something she needs me to understand, but what if I never find the right questions?
I close my eyes for a moment. I try to feel the edges of her, where they bump up against me. I try to step forward, in my mind until I reach her…until I can imagine the feeling of being in her body—that beautiful uncontrollable body. When I am there, I imagine the sound of my own teeth grinding together, the popping as it would feel reverberating inside my scull. The idea makes me slightly queasy and lifts the hairs on my arms.
But then I imagine her finding comfort in producing a sound that reaches inside her, a sound that echoes so far into the depths of herself as if she is a musical instrument. And, I realize, it also moves outward to grab my attention, irritated as it may be, from two rooms away. There is power in that: The power of sound to move another person.
What if she is reaching for something? For someone? For me?
“Ezzy, do you grind because you are trying to talk?” Yes
She’s trying to talk, but it isn’t working.
“Do you cry because I don’t understand?” Yes
This realization comes on so forcefully, that I have to stifle a gasp. Again, I image myself inhabiting her body. I can feel her, pushing hard against the boundaries of her body—to find the power to stand, to move, to say—and finding so little malleability, so few places where she reaches into the world, where she touches another person, with her hand or her voice, and is understood.
What frustration that can only be spoken with the aching grind of tooth on tooth.
“It must be so difficult that Maman doesn’t understand what you are trying to say. Your teeth won’t get you there though. We use our lips, our tongues,” I say, touching my lips and hers, sticking out my tongue, “to make words. It is hard work, but you just keep working at it…”
I pause here, struggling…because I don’t want to tell her that she will speak if she only works at it. That kind of parenting folk wisdom is not for such a child. She may not ever speak, and she already works harder than anyone I know. If she doesn’t speak it will not be for lack of trying, and I will not permit her to ever carry the worry that she’d not worked hard enough to grab ahold of the words and movements so many of us take for granted.
But how do you tell a child that her life will not be fair? Not unfair in the way of children who watch their peers with toys or friends or clothes or opportunities that they covet, but fundamentally unfair? How do you tell your child that no matter how hard she works she may never do the things toddlers do with ease?
What if I didn’t have to explain this to her? What would that feel like to comfort her over the unfairness of toys and playmates and dance class?
Instead I shift gears, “Do you remember before you could crawl?” She grabs the Yes and No cards together, which is Esmé for maybe.
“Not all that long ago you couldn’t crawl, instead you rolled. I didn’t know if you would ever crawl, but you worked so hard, and you began to crawl. It made me very proud of all your work. Everyone has to work hard to get to some things.” Esmé begins crying, hard.
And with her sob I know I don’t have to explain that this isn’t fair. I see her in my mind her sitting solemnly in her wheelchair watching the other children file passed her as we walk the hall to her classroom at school—their eyes hot and curious. Their mouths hushed as we roll by.
What if I didn’t have to ask what I have to ask?
“But you know that it is different for you.” She stops crying and looks at me. “You know it is different for you, don’t you?” Yes.
I feel a wave of nausea roll over me. She knows. But, of course she knows, she is so clever, so observant. Her life relies entirely on others, and she knows nothing if not how to read them.
Instinctively I want to avoid this conversation…and I know I can. She can’t, after all, run after me demanding, “Mom, mom, mom, mommy, mom, mom…” until I answer all of her questions. I am afraid to say something to make it worse…to bring up a fear or anxiety she’d not yet considered. (Like when I was little and everyone told me over and over that my parent’s divorce wasn’t my fault until the truth lodged in my brain that it was, in fact, entirely my fault.)
How do I tell my daughter something that makes her see herself as I see her: perfect and broken and powerful and different. So beautifully different. How do I tell her about the pride I feel rolling passed those children? Pride that my daughter is exceptional and miraculous? But that also I wish things were easier…that she were less called to be exceptional and miraculous? How can I articulate that I revere her difference, but also wish so deeply that she could just enjoy being gloriously average.
What if she was average—what would that feel like? I imagine it feeling warm and groggy, like waking up from an afternoon sleep.
Eventually I land on “Esmé, you are different. Everyone is…” She whimpers at me. “I know it isn’t the same for you. You are more different, but I want you to understand that everyone feels different sometimes…I felt different as a little girl. Like the people around me didn’t understand me. Truthfully, I still feel that way.” I think I see a flicker of curiosity in her eyes.
“And, “ I continue, “people are most interesting, most beautiful, where they are different. Your differences also give you so many things…like how you taught yourself to read. Most four-year-olds can’t read. But you started reading then, maybe even before. That is because your brain is different in really extraordinary ways.”
She smiles faintly. And I know, intuitively, that our conversation is done. Perhaps I have bored her. Maybe I have satisfied her. Or I have taken us so far off track she’s given up. Either way, her eyes drift around the room. Her body squirms next to me.
I help her off the beanbag, and watch her move away from me with the haughty little wiggle that has come to characterize her crawl. She makes her way to the window, where she pulls to stand, precariously, knees bent startlingly backward. She presses her face into the glass, tongue out.
What if I stop asking, what if?
This has been a Finish the Sentence Friday post. This week’s sentence is “The ‘what if’ I have the hardest time letting go of is…”
The host of Finish the Sentence Friday, as always, is Kristi from Finding Ninee.
So powerful, so loving, so brave.
So gorgeous, my friend. It’s so so hard, knowing we’re different. I remember when I realized that Tucker just knew. I had dismissed the idea completely until I couldn’t. Sigh. And of course, there’s glory in the differences but also, I really related to what if she were just ordinary. There’s magic in that too. This line “I try to feel the edges of her, where they bump up against me.” LOVE. Also, the idea of suggestion… like your parent’s divorce. So many things we’d never think until people assure us of the untruth in it, which makes it true.
Thank you, my friend, as always, for your beautiful and kind words.
Very moving. Thank you for sharing.
Have you tried AAC? You really should read a wonderful mother’s blog, Uncommon sense. Most children can benefif from augmentative alternative communication, even those many language pathologist discourage. It makes an enoydifferent, it really opens a whole world to unverval kids.
Yes, we are using augmentative and assistive communication–the word cards are that 🙂 She also uses an iPad to a point, but her motor skills provide some limitations we are working to overcome, slowly.
I think I was about the same age when my frustrations with what I couldn’t do started becoming significant. I know this is a bit late to the party but I just want to say you are doing the right thing. Validate her. Don’t minimize what she is experiencing. It’s okay for kids (and adults) to be upset about the things we can’t do that we really want to and when you have a serious disability it’s not quite the same as everyone having strengths and weaknesses. We are regular people plus all the additional challenges and sometimes that just plain sucks and you need mom or dad to say “yeah that sucks and It’s not fair”. At least that is what I needed, just a recognition of what was happening.
Not sure if you know of him but if not try looking up Robert Rummel-Hudson. His daughter Schuyler is a self advocate and AAC user with a rare Brian malformation who teachers and doctors did not expect to ever be able to really communicate. Sometimes they post videos or recording of her with her AAC giving speeches ect, maybe Esme would like to see a young adult having great power to communicate this way (she always verbally communicates now).
Thank you Jamie for taking the time to comment. I appreciate your reassurance that it is the right thing to be open about these differences and to give her the space to feel what she feels about her differences…I spend so much time trying to cheerlead her–telling her all the things that are very true for me: she is the most extraordinary person I know. But I also know that I need to recognize, especially as she grows, the ways that the world sees her, the ways that she sees the world, and the ways that she sees the world seeing her.
I am familiar with Schuyler and her father–I read his book a few years ago. But I was not aware of Schuyler’s speeches, etc. I will absolutely look them up. I know Ez has really enjoyed watching videos of talented wheelchair users dancing and so on…so that is a great idea! Thank you.
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