At 7:15 a.m., soft whimpers echo through the baby monitor. It’s not a baby; it’s my 6-year-old daughter, Lily, signaling that she’s awake and in need of assistance. She can’t get out of bed on her own or even sit up. Cerebral palsy has a way of making its presence felt right from the start of the day, even before I’ve had my morning coffee.
My 8-year-old son, Jake, is an early riser, up at 7:00, and he greets me with warm hugs and kisses. Wise beyond his years, he heads to Lily’s room with his cheerful “Good morning, sunshine,” which turns her soft cries into joyful giggles. This gives me a moment to put in my contacts before joining them.
I lift Lily from her bed to the changing table, take care of her diaper, and then carry her to the bathroom where she loves to sit on the counter during tooth brushing. I securely hold her with one arm while I brush her teeth with the other.
Both of my children are full of energy and joy, so after brushing, Jake holds Lily for a quick dance session before I carry her down the stairs. For meals, Lily uses a special seating system that offers her the support she needs for safe eating and playing. Breakfast, like every meal, takes more than an hour, but this time together is precious. I’m grateful that Lily can eat by mouth and drink through a straw—many children with CP are unable to do so, and I count my blessings at every meal. After removing her headrest and fixing her hair, we’re ready to tackle the day.
During the summer, Lily attends a special needs camp for three hours, followed by therapy sessions. Each outing requires me to carry her down to the basement and secure her in her car seat, along with loading her manual and power wheelchairs and the diaper bag. When she returns from camp, it’s off to therapy, which is an hour away.
Heading to therapy isn’t exactly a joyous occasion; like any other 6-year-old, she’d prefer to play or go swimming with Jake. While she puts in the hard work during her sessions, I experience an emotional workout watching her strive to support her own weight, hold her head up, and reach for objects. Despite the difficulty, she never gives up, no matter how tired she becomes.
Though she is nonverbal, our conversations flow for hours. She communicates with her expressive eyes, her radiant smile, and her gestures. Lily is both sassy and intelligent, trapped within her own body.
Once we’re back home, she indicates that she wants to go outside. Lily adores being outdoors. I carry her back down the stairs and strap her into her power chair. She enjoys playing hide-and-seek with Jake and his friends, and her laughter melts my heart. For a moment, I forget about her challenges with CP.
However, that bliss is fleeting. As the kids make plans to head into a nearby house, Lily can only watch from her power chair, which isn’t equipped to go upstairs. My heart shatters as I see her tears. Thankfully, Jake always comes to her rescue, sacrificing his playtime to stay outside with her. His compassion fills me with pride. While I wish I could claim that his empathy is solely a result of my parenting, I know it’s largely due to his love for his little sister.
As the day progresses, it’s time for stretches, which Lily despises. But they’re essential for her tight muscles. We all join in to make it as enjoyable as possible, helping her forget about the discomfort.
Lily loves Play-Doh and sensory bins, which help her open her hands. She pretends to be a chef and even assists me in the kitchen. After dinner, I transition her into a stander, a device that allows her to stand upright, strengthening her legs and hips. Standing is crucial for many bodily functions that we often take for granted. She enjoys pushing a tennis ball off her tray for our puppy to chase. Then it’s time for tickle games on the floor, which helps her roll or scooch around. After dinner, she enjoys her favorite YouTube videos, and our dancing resumes.
As night falls, Dad takes over the bedtime routine, administering her medication to help with muscle spasms and carrying her upstairs for a bath using her specialized bath seat. After brushing her teeth and changing her diaper, he puts her to bed. We spend the next few hours repositioning her for comfort so she can sleep. Since her double hip surgery and muscle lengthening in January, sleep has become a rare commodity.
Throughout the night, we keep a close eye on her via the monitor, never quite reaching a deep sleep ourselves. The thought of potential seizures is always in the back of our minds. It’s said that parents of children with special needs experience higher rates of PTSD than soldiers, and after a harrowing seizure Lily had in 2016, we’ve come to believe it.
This is our routine, day in and day out. Despite the challenges, we always start and end the day with dance, ensuring that smiles greet her awake and tuck her in at night. Thank you for sharing this glimpse into our life together.
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Summary:
In this heartfelt reflection, Emily Thompson shares the daily life of her family, focusing on the challenges and joys of raising her daughter, Lily, who has cerebral palsy. From morning routines to therapy sessions, emotional struggles, and sibling love, the story highlights resilience and the power of family bonds.