At 7:15 a.m., the soft sounds of whimpering come through the baby monitor. But it’s not a baby; it’s my 6-year-old daughter, Mia, signaling that she’s awake and needs some assistance. She cannot get out of bed on her own, nor can she sit up by herself. Cerebral palsy doesn’t wait for a morning coffee to remind us of its presence in our lives.
My 8-year-old son, Ethan, rises at 7:00 a.m. and greets me with warm hugs and kisses. He’s incredibly perceptive for his age and heads straight to his sister with his cheerful “Good morning, sunshine,” which transforms her soft cries into laughter daily. This gives me a moment to put in my contacts before joining them.
I lift Mia from her bed to her changing table for a diaper change, then carry her to the bathroom. She enjoys sitting on the counter to brush her teeth, so I secure her with one arm while using the other to help her brush.
Both of my children love to dance, so Ethan holds her for a brief dance session, and then I carry Mia downstairs. For meals, Mia uses a specialized seating system that offers her the support she needs to sit upright safely. Breakfast, like all meals, takes over an hour, but it’s our cherished bonding time. I am grateful that Mia can eat and drink independently; many kids with CP face greater challenges. After fixing her hair and removing the headrest, we’re ready to tackle the day.
During the summer, she attends a special needs camp for a few hours before engaging in therapy. To go anywhere, I carry her through the basement and into her car seat, loading both her manual and power wheelchairs along with a diaper bag. When Mia returns home from camp, it’s off to therapy, located an hour away.
Unfortunately, heading to therapy isn’t a joyous occasion; like any other 6-year-old, she’d prefer to play or go swimming with her brother. As she works hard physically, I experience an emotional workout from watching her put in so much effort. Supporting her weight, holding her head up, and reaching for items is no easy feat, but she never gives up, no matter how fatigued she becomes.
Although she cannot speak, we share hours of conversation. Mia communicates through her expressive eyes, her radiant smile, and her gestures. She’s a feisty, intelligent girl trapped in a body that limits her.
Once we return home, she uses her gaze to express her desire to go outside. She loves the outdoors, so I carry her down the stairs and secure her in her power chair. She enjoys playing hide-and-seek with Ethan and his friends; her giggles fill my heart with warmth. For a moment, I forget about her CP and the obstacles it brings.
However, that bliss is fleeting. As the kids make new plans to head inside a house, Mia is left behind, unable to follow due to the stairs. My heart shatters as I see the tears on her cheeks. Fortunately, her big brother always comes to her aid, sacrificing his playtime to stay outside with her. I take pride in him; while I wish to attribute his kindness to my parenting, I know it’s rooted in his love for his little sister.
As the day progresses, it’s time for stretches, which Mia despises. They’re a necessary part of managing her tight muscles. The whole family joins in to make it as enjoyable as possible, helping her forget the discomfort.
Mia loves Play-Doh and sensory activities that aid in opening her hands, and she pretends to be a chef, assisting me in the kitchen. After dinner, I transfer her to a standing frame, which helps strengthen her legs and hips. Being upright is vital for various bodily functions we often take for granted. She enjoys rolling a tennis ball off her tray for our dog to chase. Tickle time follows, where we lie on the floor, and what she perceives as a fun game is actually our way of encouraging her to roll or scoot.
After dinner, Mia watches her favorite YouTube videos, and we share another dance session. Dad takes over the nighttime routine, giving her medication to help with muscle spasms and carrying her upstairs for a bath in her special seat, brushing her teeth, changing her diaper, and settling her for bed. We spend the night repositioning her to ensure her comfort, especially since she underwent double hip surgery and muscle lengthening in January, making sleep a rare commodity.
Throughout the night, we keep a close eye on her via the monitor, never truly resting ourselves, always concerned about her well-being. The threat of seizures lingers in our minds. It’s said that parents of special needs children experience PTSD at rates higher than soldiers, and after a severe seizure in 2016, we understand why.
This is our daily routine, day in and day out. Yet, through it all, we wake up and go to sleep with dance, ensuring that smiles greet her in the morning and send her off to bed.
Thank you for sharing our day with us. For more insights into family life, check out this excellent resource on pregnancy and home insemination.
Summary
This article provides a heartfelt glimpse into the daily life of a family with a daughter who has cerebral palsy, highlighting the challenges and joys they experience together. Through routines filled with love, laughter, and resilience, the family navigates the complexities of caring for a child with special needs while cherishing every moment spent together.