The Letting Go

Adiba Nelson

At hours old she knew what she wanted, knew what she didn’t want, and made no qualms about letting me know. I’ve known from day one that being a mom to my child was going to be the most intense job I’d ever have. When she was ten months old and received her diagnosis of bilateral schizencephaly and cerebral palsy, I understood, fully, just what lay ahead. My mother had been a special education teacher when I was in elementary school, and I often helped out in her classroom. I understood that cerebral palsy, like any disability, was on a spectrum. She could be very affected by it, or it could be barely noticeable. But regardless of what her disability was going to look like, I was determined to make sure that she was prepared for the world we live in, without me. I don’t know if this is typical for most parents, but for me, it was like a blinking neon sign, illuminating what could have been a very dark moment—raise her to release her.

I think most parents start the process of pushing children towards independence when they’re babies. First, it’s the weaning from the breast to the bottle, or from mom holding the bottle to baby holding the bottle independently. Then we teach them how to feed themselves fistfuls of cheerios, and spoonfuls of chocolate ice cream we gleefully wipe from their cherubic cheeks. Over time we teach them to dress, bathe, and cross the street—all without us. We work so hard to take these tiny humans who rely on us for everything, and fill them with enough moxie, smarts, and strength of character to get to this level of independence. But how do we give them the strength to let go?

We’re supposed to let go first.

But my God is it hard. It is a crack that starts at the very top of our heart, this letting go, and heals itself with pride. But damn that crack—it’s jagged, and salty, and lined with as much anxiety as it is hope. Let the world be kind to them. Let them remember everything we’ve taught them. Be careful.

For me, the letting go, in the truest sense, started a week before my daughter’s tenth birthday, when she received her first electric wheelchair. I know. Ten seems rather late to begin this “letting go,” but for parents of kids with disabilities, our grip loosens a little slower than other parents. We hold our breath a little longer, more often, for different reasons. Depending on what the disabilities look like, milestones might take longer to reach, if we reach them at all. We spend all day, every day, like you, filling our child up with as much self-esteem and self-determination as we can muster, but in the deep recesses of our mind, in the quiet hours when everyone is asleep, we wonder.

What will their life look like without us? When is it okay to start letting go?

We, my daughter and I, work toward this invisible goal—a life without mom hovering nearby. We daydream about life in the dormitories when she’s in college. Her first date. Her first girls’ trip. But on some level, I secretly wonder who will let go first—me or her? She has already mastered independent feeding, lightly assisted dressing, and monitored bathing. She has proven that she can make friends without me being there to facilitate introductions and play, and (despite my rattled “mom nerves”) she is fully capable of attending sleepovers without me. This child, my daughter, has been asserting her independence since the day she was born. On May 14, 2009, roughly three hours after entering the world, she wriggled her one good arm out of her tightly swaddled blanket and proceeded to do so every time I re-swaddled her. She was not (and still is not) a girl who was going to be held to any limitations, ever.

Even if the limitation is me.

And I’m not going to lie—sometimes it is. I’m simply not ready. I’m not ready for the training bras we’re buying, or the mascara she’s asking me to apply, or the rosy hue that fills her cheeks when a certain boy comes around. I know that my job as her parent is to raise her to release her, but in the midst of all of this I question if I was even ready to raise, much less release her. There are so many things that I have to start thinking about NOW, logistically, while she’s ten, that will not only dictate but also facilitate what her releasing, and subsequently mine, will look like. I am sure that if you are the parent of a typically abled, non-neurodivergent child, you have never given thought to establishing guardianship over your child before they turn eighteen. But I do. And I actually have to start this process around her sixteenth birthday because the process is so long and arduous. And if for some reason I don’t establish guardianship (or have a guardian in place should something happen to me), the state takes guardianship and becomes the decision-maker for all things {E}. How many therapy appointments she can have a month, which procedures they’re willing to pay for and does she really need them in the first place, and my personal favorite— “we don’t think she really needs ‘xyz’ piece of equipment.” And I have to begin setting money aside in a trust for her now, at age ten, so that if for some reason something happens to me and she is unable to obtain employment, her quality of life does not change.

And these are just the logistics of life. The logistics of our hearts, hers and mine, comes with a completely different set of rules. And this child, my {E}, continues to teach me how to play the game. Case in point—May 8, 2019.

On this day, my daughter began opening the crack in my heart a little more, and making sure I understood the rules. We’d spent an entire year with her physical therapists, training in her electric wheelchair so that she could learn to navigate the world on her own. They started in a large, empty room, then learned how to move through doorways. Then smaller rooms with furniture, narrow spaces, and eventually sidewalks. I was there for all of it—cheering her on, telling her to focus, not run over people, don’t fall off the sidewalk, and reminding her that she was going to have to do this without me, so she’d better get good at it.

Then the time came. She was good at it. She had to do it without me. We were taking the chair to school and I had to let go.

I watched my small person, my almost ten-year-old girl, full of spirit and moxie, power herself through the crosswalk, onto campus, and into the throng of friends waiting for her on the other side. I tried to say goodbye, and give her our customary send off—hug, kiss, fist bump, “peace out homey”—but she was off. All that independence she came out of the womb with, and all of the independence we’d spent a year training for, was gripped in her tiny fist, powering her onto campus, and away from me. I stood there watching her roll away with her friends in tow, biting my lip, with tears on the verge of becoming waterfalls and a lump the size of a small island in my throat, and whispered to no one in particular “well, I guess this is how it begins…this is the letting go.” I watched kids zig and zag around me as they ran from the car to the school gates, parents waving from the car, and I wondered how they got to that point—the swift kiss in the car followed by a barely audible “Bye mom!” I imagined that how I was feeling watching my ten-year-old roll away is how those parents felt when their children were seven, eight, nine, and they no longer wanted mom or dad to walk them in.

I haphazardly shuffled back to my car, holding myself together until I was in the safety of my van, where I choked into the phone, “She’s gone—she just rolled away without even saying goodbye,” to my best friend who’d been down this road twice before. And like a good best friend, she reminded me:

“She’s doing what you raised her to do—go.”

Rumor has it that it gets easier, the letting go, and I wonder aloud to other special needs moms—“does it?” The answer is always no. There will always be a feather of grief floating in the air just above our pride (and theirs), because while we know we’ve released our babies logistically, emotionally we are tethered. Which I suppose is no different from a parent of a typically abled child. But for some reason that tether just feels heavy—much heavier than it should.

A few years have passed since that day in 2019, and my daughter is now rolling onto her junior high campus, to her friends and away from me. The tear in my heart is still raw, the Band-Aid of pride still at the ready. But every now and again this kid, this preteen that I’m raising to release, hugs me a little tighter, holds my hand a little longer, lingers to blow me a kiss and catch the one I blow back. I use these small moments (which feel like enormous fleeting moments) as evidence that she’s not ready to let go either. But in my heart I know. I know the letting go has started. For me; for her.

And if I want to survive this, tear in my heart be damned, I must put some slack in our rope.

Because she’s letting go first.

Adiba Nelson is an author, screenwriter, performer, disability rights advocate, and most recently, subject of the Emmy Award winning documentary, The Full Nelson. She wrote and self-published her first children’s book, Meet ClaraBelle Blue in 2013, and her new memoir, Ain’t That A Mother (Blackstone, 2022), is now available for order. Adiba has also penned several articles for Huffington Post, The Washington Post, The Lily, Parents, Parents Latina and Kindred (among others), focusing on issues around race, parenting, disability, and womanhood. In 2017 she gave her first TEDx talk (Skating Downhill: The Art of Claiming Your Life), and is a regular contributor to the NPR affiliate show, Arizona Spotlight. When she is not writing, Adiba speaks across the country about the importance of inclusion and accessibility for the disabled community.