Since having my daughter Esmé six and a half years ago, I have been somewhat obsessed by the mechanisms of motion. From her first moments her body struggled to move in the ways so many of us take for granted, that I would watch, awed, at the dance we orchestrate just moving across the room—muscles in our core tightening, as one arm swings, shifting weight forward, as the opposite leg lifts up and we fall, purposefully, into our next footing.

How is it possible? These large lumbering bodies heaved through this most basic motion. These tiny bodies learning to hold themselves up on pudgy thighs, bowed legs, and soft feet.

It seems impossible. It is impossible.

Except, of course, it is not.

 

Sitting in the waiting room…

I’m anxiously chatting with my mom while Esmé and her caregiver go through her series of back-to-back therapies: the speech, occupational, and physical therapists each taking their turn. I know the delivery is coming today…soon. But, perhaps, it will not be before we leave for the day…in which case we’ll have to wait another two days.

I don’t want to wait. I don’t want Esmé to wait any longer than she has to. It is time.

It happens that I stand to look out the window at just the moment she is lifting it from the back of the van. It seems impossibly and adorably small. It is the all-wrong color: Neon Green. But it is just the loaner, so it will do.

For now. Until her own can arrive—purple, perhaps? Or red?

It will be a tough decision, of course, because a person uses a wheelchair for five years before insurance will purchase a new one. Five years, every single day, for a small child…this is a big deal. It will be her chair until she is 11.

It will cost thousands of dollars, but it will be covered–by our private insurance, and by Medicaid.

 

Gravity.

Gravity has always played hard tricks on Esmé, they sometimes run as a movie behind my eyes…typically when I feel as though I just cannot anymore:

I see her now, a newborn in the NICU, legs splayed at the hips, frog-like.

I see her, an infant, maybe nine months old, arms laying limp at her sides, her legs bicycling to the beat of Plastic Bertrand.

I see her, perhaps 18 months old, propped in a seated position, falling over when the air in the room shifted. She has no protective reflexes, so her face smashes into the rug.

I see her standing at the tv table, knees locked backwards at impossible angles until they, trembling, give way, and she falls into my waiting lap and arms.

I see her, perhaps three-years-old dragging her body up, pulling to stand against the coffee table, locking to hold herself upright. She falls, hard. She takes only a small pause before slamming her hands on the wooden top and pulling herself back up. She falls again. A determined growl escapes her as she lurches forward again, defying gravity

 

The wheelchair arrives…

We interrupt therapy to bring the chair in. Esmé is cheerful and excited…reading the feeling of the room as a number of therapists and support staff drop everything to see what will happen with my daughter, the famous patient, in a new, light-weight, demo wheelchair.

I’m excited too, but when I lift her tiny body into the chair, with its low back and the small lap belt, I am certain this is a mistake.

I imagine her collapsing over the side.

I imagine her hair and fingers caught up in the spokes.

I imagine her tipping over, wheels spinning in the air.

I imagine her being unable to propel herself even an inch forward.

I imagine her spending years more being pushed and pulled by others, powerless to control her view, her interactions, her path.

Then, with some prompting, her hands find the wheels. And, with little questioning pushes, she inches forward. The room claps. She looks proud, and a bit confused.

Within a matter of minutes, however, she had begun to understand what is in her control, rolling away from the therapists discussing the precise seating specifications. Rolling into a room toward her former and beloved speech therapist. Suddenly, turning the chair in a doorway by pushing one hand forward and the other back.

I am intermittently in tears…trying to hold onto my command of the moment, trying to be present. But as we leave, I hug the woman who carried in the chair, and offer a choked, teary thank you. I am thanking her, of course. But also? Also I am thanking chance and circumstance, and anything else that affords my child this possibility, and me this hope.

 

Rolling.

By the time she learned to roll, I understood she’d likely never walk. I told people I didn’t much care if she’d ever walk…that I just wanted her to be able to move independently somehow. That was more true than it was not. Rolling seemed like such a gift. At first it is just a foot or two. By the time she was three, she’d roll away from me in search of her space, stretching the lines that bound us to each other.

The crawling came a couple years later, and she began to take command of our house, crawling determinedly to the kitchen, or her room, exploring, staking her claim. I’d let her crawl my mother’s home, my friends’ homes. She’d crawl the classroom floor on her visits to Kindergarten.

Once she crawled around a store in the mall and then ventured out into the hallway, undaunted by the pace of mall walkers, UPS push carts, or packs of moms pushing strollers.

But there are only so many places she might crawl. Not the length of the target. Not the grocery store. Not the halls of the hospital. Not the streets of our neighborhood.

 

The wheelchair in Target…

After therapy, I cannot help myself but to take Esmé and her chair, caregiver and grandmother in tow, to Target. We situate her in her chair at the entrance. She is tired slumped to the side somewhat. She looks around, taking in the magnitude of the store, and then glances up at me as if to say. Are you serious?

Between the three of us we pull her, adults holding hands on either side to protect her fingers, and one adult pushing from the grab bar behind, Esmé giggling at our speed, to the toy section. Where I tell her she can have anything she can pull off the shelves.

She rolls toward the V-Tech cars, her favorite toys, and cries that they are just out of her reach. We hand them to her. She claps and then moves on, slowly, throwing boxes to the ground as she makes her way halfway down the aisle, before fading.

Before we leave the store she is in tears over my shoulder. We push her new chair toward the checkout, a bottle of laundry detergent nestled in the seat and boxes of toys in all free arms.

Milestones.

I wonder sometimes about the one-dimensional nature of how most people understand developmental leaps. For so many children it is just a matter of a short time before something moves from a non-skill to a firmly instilled skill. So many people think: A child walks or doesn’t. They speak or don’t.

My child has spoken. But she does not speak. Her words come now and then—only to be stolen away by the mysteries of her brain and her body, by my limited capacity to understand.

One day she may walk (or not)…but it will not come all at once. It will come in as a mirage, years in the making. A step some days, other days not. A walk to the bathroom, but not into the grocery store. A backslide. A gain. A spell of weakness. A collapse. A success.

 

In Grandma’s kitchen…

Today my daughter pushed herself around her grandmother’s kitchen, chasing her Uncle Baba in very slow motion…being dragged backward by gravity at the smallest slant in the old wooden floor. But Esmé proudly commanded the room, as her littlest cousins admired her wheels, her slightly younger cousin demanded that she, too, should have a wheelchair.

In that moment Esmé was finally the big cousin…doing the things the others wished they could do. She was upright and in charge, instead of watching as they do things she cannot: eat by mouth, stand, run, speak.

Her chair will be her tool to grab parts of the world that have escaped her in her six and a half years. It will be part of her. It will help level the hopelessly skewed playing field she finds herself in.

It is a gift of a kind, one for which I am grateful…

But also, it is her right.

It is what moves her.

What moves her is hope. What moves her is determination.

What moves her is Medicaid.

 

I love co-hosting Finish the Sentence Friday (FTSF) with Finding Ninee. As those of you who are familiar with this blog and the blog that came before this one, The Cute Syndrome, know I have been in a period of rediscovering my voice as a writer as I work to integrate the writing I do about my daughter, Esmé, and the other writing that I want to explore. And FTSF has played an important role in that discovery, for me. 

Each week on FTSF we receive a sentence to finish. The prompts have really helped me broaden the topics I address and let me feel free to explore new ways to tell some of the stories that are important to me. Join the Facebook Group to start linking up with all of us! The first week I linked up I wrote something that I didn’t even know I needed to write. It felt so raw and close to the bone that I wasn’t certain I wanted to share it. But I did it anyway…and I am so happy I did. 

Now this week I was able to participate by helping with the writing prompt: What Moves Me Is…. I’m really looking forward to reading this week’s posts! Thanks for joining!


6 Comments

  • Oh Hillary, this is absolutely gorgeous and so very important. I am disgusted by the possibilities of the changes in Medicaid and basic rights for each of us. Esme’s determination is inspiring and it’s so important for every kid and adult to understand and to know. Each of us have the right to move, no matter what, and the ability for a child to receive a chair in the color of her choice is a fundamental right. I so hope to meet her (and you) one of these days. Thanks for co-hosting and I’m so glad that FTSF has helped you re-find your writer’s voice because you’re going places, my friend. Big, huge places. xoxo

  • Such a lovely post, Hillary.

    You write from your heart thus, making this post so beautiful. Hugs to your daughter, Esme and while I cheer for you and your family to continue on this endeavor which will make you cross its finish line with flying colors!

    xoxo

  • The picture of lovely Ms Esme in her new chair brought such a big smile to my face, before I even read the post. I am so happy for her & you. Blessings.

  • Very beautiful post Hillary. I felt your love all throughout your post. I feel angst not knowing what is to become of Medicaid in the near future. I hope and pray for all the Esme’s of the world that assistance is there for them as long as they need it.

  • What a beautiful combination of the figurative and literal – “what moves me.” And while certainly not the focus of this piece, I smiled at the reference to VTech toys, and the photo of Esme selecting her favorite. I haven’t thought about Vtech in years, but they made some of my kids’ favorite toys too.

  • What a moving post, yet again.

    I love how you used moving in multiple ways here.

    I understand the tool thing, though mine is my white cane. Without it I feel lost and afraid to move very far. I do love that a child sized wheelchair comes in many colours. I vote for red myself.

    🙂

    I am disgusted with where things stand with your country’s healthcare and coverage for so many who depend on it. What cruelty is it when such things are taken away? I just don’t understand.

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