It’s 7:15 a.m., and the gentle sound of crying fills the baby monitor. But it’s not a baby — it’s my 6-year-old daughter, Mia, signaling that she’s awake and needs assistance. She’s unable to get out of bed or even sit up on her own. Cerebral palsy doesn’t give us a moment’s respite; it’s a constant reminder of our reality, even before that first cup of coffee.
My 8-year-old son, Jake, rises earlier at 7:00 a.m. and greets me with warm hugs and kisses. He’s remarkably perceptive for his age and rushes to Mia, offering his usual cheerful “Good morning, sunshine,” which transforms her soft cries into delightful giggles. This gives me a brief moment to slip on my contacts before joining them.
I lift Mia from her bed and carry her to the changing table to change her diaper, then transport her to the bathroom. She enjoys sitting on the counter while brushing her teeth, so I secure her with one arm while I brush with the other.
Both Jake and Mia have a passion for dancing, and soon enough, Jake is twirling her for a quick dance-off before I carry her down the stairs. Mia uses a special seating system that provides ample support, allowing her to maintain a safe and proper seated position during meals and playtime. Breakfast, like every meal, takes over an hour, but it serves as our cherished bonding time. I’m grateful that Mia can eat by mouth and drink from a straw, as many children with cerebral palsy cannot. Each meal is a reminder of my blessings. After fixing her hair and removing the headrest from her seating system, we’re ready to tackle the day ahead.
During the summer, Mia attends a special needs camp for three hours, followed by therapy sessions. To get anywhere, I carry her through the basement and settle her into her car seat, loading both her manual and power wheelchairs along with her diaper bag. After camp, we’re off to therapy, which is an hour away.
This journey isn’t filled with joy; like any other 6-year-old, Mia would prefer to be playing or splashing in the pool with her brother. As she works hard in therapy, I find myself emotionally invested in her struggle. Supporting her own weight is a challenge, and holding her head up is tough. Reaching for objects takes immense effort. Yet, her determination never wavers, even when fatigue sets in.
Despite being nonverbal, we share countless conversations through her expressive eyes, her radiant smile, and her gestures. Mia is witty and intelligent, but her body confines her spirit.
Upon returning home, she eagerly indicates her desire to go outside. I carry her down the stairs once more and secure her in her power chair. Mia loves playing hide-and-seek with Jake and his friends. Hearing her laughter melts my heart, allowing me to momentarily forget about her cerebral palsy and all its associated difficulties.
However, this bliss is fleeting. As the kids make new plans and head toward a house, Mia rolls along behind them, unable to follow because her power chair can’t navigate stairs. Watching her tears fall shatters my heart, yet Jake always comes to her aid, sacrificing his playtime to stay outside with her. His empathy makes me so proud, and while I’d like to attribute it to my parenting skills, I know it’s rooted in his love for his little sister.
As the day progresses, it’s time for stretching — an activity Mia dreads, but it’s essential for her tight muscles. We all join in to make it as enjoyable as possible, helping her to forget the discomfort. She loves Play-Doh and sensory bins, which aid in opening her hands. Sometimes, she plays chef and helps me cook.
After dinner, I transition her into a standing frame, an essential piece of equipment that helps her maintain a vertical position. This is crucial for strengthening her legs and hips and supports many bodily functions we often take for granted. Mia enjoys pushing a tennis ball off her tray for our puppy to chase. We then end the day with some tickle time on the floor, which she perceives as a game, but it’s really a way to encourage her to roll or scooch around.
Post-dinner, she indulges in her favorite YouTube videos, and we share another dance session. When it’s time for bed, her father takes over the nighttime routine: administering her muscle spasm medication, carrying her upstairs for a bath in her special bath seat, brushing her teeth, changing her diaper, and tucking her in. The next few hours are spent adjusting her position to ensure her comfort as she sleeps. Since her double hip surgery and muscle lengthening in January, restful sleep has become elusive.
Throughout the night, we keep a close eye on her via the monitor, never truly falling into a deep sleep ourselves due to our concerns. The possibility of seizures lingers in the back of our minds. Special needs parents often experience higher rates of PTSD than veterans, and after witnessing a prolonged seizure in 2016, I can understand why.
This is our daily life, filled with challenges and triumphs. Through it all, we make it a point to wake up and say goodbye to the day with dance and ensure that smiles greet Mia in the morning and tuck her in at night.
Thank you for spending a day with us and gaining insight into our life.
Summary
This article provides a heartfelt glimpse into the daily life of a family with a daughter who has cerebral palsy. From morning routines filled with love and laughter to the challenges of therapy and the bittersweet moments of play, the narrative highlights the resilience and joy that coexist in their world.