I Tried Everything To Keep My Daughter Safe. Here’s What I Learned When I Couldn’t.
“In the end, for all my efforts to protect Emma from others, I couldn’t protect her from herself, from her own body waging war against itself.”
We were “test-driving” a new nurse.
She was young and fresh out of nursing school, and her youth and inexperience unsettled me. I was in the kitchen, the nurse and Emma in the living room, when an internal voice, or mother’s instinct — something — told me to peek in on them.
The nurse was perched on the couch with her back to me, whispering on the phone, while Emma was on the floor at her feet, trying to swat her leg, seemingly in an effort to get attention. Then I watched in disbelief as the nurse pushed Emma away with her leg. I pounced — took four giant strides toward the living room, lowered myself onto the floor, and scooped Emma up in my arms.
Emma, our oldest, had been born with a rare chromosomal condition that left her profoundly developmentally delayed ― physically and intellectually disabled with myriad medical conditions. At 18 years of age, she was physically and intellectually at a 9-month-old level: non-verbal, non-ambulatory (she scooted on her bottom to get around) and G-tube fed. We relied on a home nurse to get her off her school bus, feed her, administer her seizure medication and wait for my husband and me to get home from work.
Emma’s safety had always been at the forefront of everything, so each new nurse that entered our home became integrally connected to that principle. And because she was nonverbal and, as I saw it, defenseless against unscrupulous, negligent, or otherwise indifferent caregivers, her treatment, her health and her well-being occupied my thoughts almost exclusively when I was away from her.
“Why do this? Why become a nurse?” I said to this nurse with the full intention of delivering a razor cut — to hurt. I was in defense and attack mode all at once. I wielded my words like a weapon.
I worry less about her, believing she can protect herself against sexual advances and defend herself against unwanted sexual attention in a way I couldn’t as a 9-year-old, just six months in a new country, knowing nothing about sexuality or about sexual predators ― men who touch little girls in elevators. At that time, I was like Emma, and even though I could speak, I felt voiceless, vulnerable and defenseless.
Emma’s way of non-verbal communication was understated, subtle. Her handful of signs ― “give me, more” or “all done, all finished” ― were hard-won and pride-inducing as she recognized the magic of being understood that followed her earnest efforts.
When she blew a kiss by putting her lips together and affecting a loud popping sound, you felt enveloped in the luminous blanket of her love. And when she laughed her silent, lung-emptying laugh, as she folded in half like a marionette whose strings had been released, you felt 10 feet tall to know you brought her joy.
Without verbal speech, though, she couldn’t communicate to me how she came off the school bus in her wheelchair one day with a broken arm. Or that she grabbed the cylinder of the hot curling iron her nurse was trying to curl her hair with, which I would only discover a day later when I saw the egregious blister the size of her palm. She couldn’t relay to me the horror she must have felt when another nurse left her in her wheelchair on a downward-sloping busy sidewalk, while she disappeared inside the market to buy produce. Or how the brakes of the wheelchair gave out and Emma went rolling down the hill at breakneck speed only to be stopped when she crashed into a parked car.
“What are you going to do? Watch hours of footage when you get home?” my husband asked when I insisted on buying a nanny cam, as they were called. Maybe. I didn’t know. I wrestled with needing to control the uncontrollable.
He was right; I couldn’t live like this. I couldn’t monitor every person that Emma came in contact with. “It’ll drive you crazy,” he told me. “You’ll hyper-focus on every little thing, because no one will be good enough, nice enough, attentive enough. No one can be you.”
After the broken arm incident, which no one could explain, Emma’s school became even more vigilant in reporting the minutest of observations. Prior to the fracture, the letters home included requests to cut her nails often because she sometimes used scratching as a form of delivering a quick message of displeasure. Now, everything ― no matter how minor ― was brought to our attention, made a note of, documented.
It was as if they were beating us to the punch: We noticed Emma came to school with a runny nose, a scratch on her forearm, a pimple on her chin, lethargic, crusty-eyed. They had to claim it first so that we couldn’t point a finger, say it was inflicted in school, that someone was negligent. Annoying as this was, I understood the school’s need to cover their behinds — ever mindful of potential legal recourse. Secretly though, I was thankful for it, because it meant that someone always had an eye on her. Keeping her safe.
But the truth was, I could wield no more control over Emma’s safety than I could over Hanna’s. The moment each of these beating hearts left my body and ventured out into the world, I forfeited the power to protect them from the elements, from physical harm and emotional wounds, from others, and even from themselves. I couldn’t be everywhere, always. I could only hope that my love would keep them safe.
The moment each of these beating hearts left my body and ventured out into the world, I forfeited the power to protect them from the elements, from physical harm and emotional wounds, from others, and even from themselves. I couldn’t be everywhere, always. I could only hope that my love would keep them safe.
In the end, for all my efforts to protect Emma from others, I couldn’t protect her from herself, from her own body waging war against itself. Pneumonia suddenly settled in and overwhelmed her lungs like some forsaken land. It took her breath away, then took her.
It’s been six years since Emma passed. Grief still strikes me sometimes out of nowhere, like a gale of wind, buckling my knees — still mighty — but not as often, not nearly as often.
Grief reminds me ― and I never want to forget the luminescence with which Emma inhabited this life ― that she was intrepid. That in her own silent way she taught me the power of my voice. She taught me how to be in the world. I am reminded that there is still joy to be garnered, to be bestowed on my children, my loved ones. Grief and gratitude can coexist, I’ve heard said, and I find myself occupying this space often.
In my recent readings, I came across the concept of the sixth stage of grief, arguably the most important one — that of making meaning of loss. I hadn’t realized that I was practicing this very act when I first began to put pen to paper all those years ago — to make sense of the inconceivable fact of having buried a child.
Words spilled out of me as if Emma were whispering them directly into my ear. Pages multiplied, and before long, I found myself recounting the 18 gutting and glorious years of life gifted us by our otherworldly child. Emma came alive in the storytelling and I realized that I could finally keep her safe — tucked away snugly inside my heart.
Diana Kupershmit is the author of “Emma’s Laugh: The Gift of Second Chances, A Memoir” (She Writes Press, June 2021). She is a social worker and weekend photographer. She has published in Manifest Station, Motherwell, and Still Standing Magazine, among others. You can find more from her on Instagram at @picsbydk/ and on her website, dianakupershmit.com.
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Link to Original Article: https://www.huffpost.com/entry/parenting-disability-children_n_60b9430ce4b00a70313de6bf