The baby monitor crackles to life at 7:15 a.m. with soft whimpers. But it’s not a baby making the noise; it’s my 6-year-old daughter, Emma, who needs some help getting started for the day. Cerebral palsy has made simple tasks like getting out of bed or sitting up impossible for her, reminding us right away that it’s part of our everyday reality.
My 8-year-old son, Lucas, wakes up at 7:00 a.m. and greets me with sweet hugs and kisses. He’s incredibly perceptive for his age and goes to Emma’s room, beaming at her with his customary “Good morning, sunshine!” This transforms her cries into giggles, giving me a moment to gather myself as I put in my contacts.
I gently lift Emma from her bed to the changing table, where I change her diaper before carrying her to the bathroom. She enjoys brushing her teeth while sitting on the counter, so I securely hold her with one arm to keep her safe as I help her brush with the other.
Both my kids adore dancing, so Lucas lifts her for a brief dance-off before I carry Emma down the stairs. Emma uses a specialized seating system that provides the necessary support for her to sit properly during meals and playtime. Breakfast, like all meals, takes us over an hour, but those moments are precious bonding time. I’m grateful that Emma can eat by mouth and drink through a straw—many children with cerebral palsy cannot, and I appreciate these small blessings.
During summer, she attends a specialized camp for three hours before we head to therapy. To go anywhere, I carry Emma down through the basement and place her in her car seat, then load her manual and power wheelchairs, alongside her diaper bag. After camp, it’s straight to therapy, an hour away.
In the car, Emma is less than thrilled; like any other 6-year-old, she would prefer to play or swim with Lucas. While she works hard during therapy, I experience my own emotional workout watching her struggle to support her weight, hold her head up, and reach for objects. Yet, she never gives up, no matter how fatigued she becomes.
Even though Emma is nonverbal, we communicate for hours through her expressive eyes, her endless smile, and her gestures. She’s incredibly clever and full of personality, albeit trapped in a body that doesn’t cooperate.
Once we’re home, she eagerly signals that she wants to go outside. I carry her down the stairs again and secure her in her power chair. Emma loves playing hide-and-seek with Lucas and his friends; hearing her laughter fills my heart with joy, allowing me to forget, if only momentarily, the challenges posed by her condition.
But that joy is fleeting. The kids’ plans often change, and they head inside while Emma can only watch from her power chair, unable to follow them up the stairs. My heart shatters as I see her tears. Lucas always comes to her rescue, sacrificing his playtime to stay outside with her. I’m endlessly proud of him. While I’d love to think his kindness stems from my parenting, I know it’s because of the little sister he cherishes.
As the day rolls on, it’s time for stretches—something Emma despises. These stretches are crucial, even if they are a necessary nuisance due to her tight muscles. We all join in to make it as enjoyable as possible, trying to distract her from the discomfort.
Emma loves Play-Doh and sensory bins, which help open her hands. She pretends to be a chef, assisting me in cooking. After dinner, I transfer her to a standing frame, which helps strengthen her legs and hips and improves her overall bodily function. Emma enjoys pushing a tennis ball off the tray for our puppy to chase, followed by some tickling time on the floor, which serves as a fun way to encourage her to move.
After dinner, she unwinds by watching her favorite YouTube videos, and we dance again.
As night falls, my husband takes over the nighttime routine, administering her muscle spasm medication and carrying her upstairs for a bath using her special bath seat. He brushes her teeth, changes her diaper, and tucks her into bed. We spend the next few hours repositioning her to ensure she’s comfortable enough to sleep. After her double hip surgery and muscle lengthening in January, restful sleep has become elusive.
Throughout the night, we keep a watchful eye on the monitor, never fully drifting into a deep sleep ourselves, always mindful of the possibility of seizures. It’s been said that parents of special needs children experience higher rates of PTSD than soldiers, and after witnessing Emma’s prolonged seizure in 2016, I can understand why.
Every day follows a similar pattern, but through it all, we rise and retire to dance, ensuring her day begins and ends with smiles.
Thank you for spending a day with us.
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In summary, our day revolves around love, challenges, and the constant dance of life with my amazing daughter, Emma, who inspires us every day.
Keyphrase: daily life with cerebral palsy
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