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A Day in the Life of My Remarkable Daughter with Cerebral Palsy
At 7:15 a.m., the soft sounds of distress echo from the baby monitor. This is not the cry of an infant; it is my 6-year-old daughter, Emily, signaling that she is awake and in need of assistance. Due to cerebral palsy, she is unable to rise independently, and even sitting up is a challenge. The realities of life with this condition are immediate and unrelenting, often surfacing even before I’ve had my morning coffee.
My 8-year-old son, Lucas, rises at 7:00 a.m., greeting me with affectionate hugs and kisses that seem to radiate warmth. His wisdom is notable for his age, and he heads to Emily’s room with his customary greeting, “Good morning, sunshine.” This phrase transforms her soft cries into infectious giggles, allowing me a brief moment to prepare for the day ahead.
I carefully lift Emily from her bed to the changing table, where I assist her with a diaper change before carrying her to the bathroom. She enjoys sitting on the counter to brush her teeth, so I stabilize her with one arm while I brush her teeth with the other. Lucas, who shares a love for dance with his sister, holds her for a brief dance session before I escort them both downstairs.
Emily uses a special seating system that provides the necessary support for her to sit upright while eating and playing. Breakfast — like every meal — is a lengthy process, taking over an hour, but it is a cherished time for bonding. I am grateful that Emily can eat and drink by mouth, as many children with cerebral palsy face difficulties in this area. After breakfast, I remove her headrest and fix her hair, and we are finally ready to face the day.
During the summer, Emily attends a special needs camp for three hours and then engages in therapy sessions. To travel anywhere, I navigate her down to the basement, where I secure her in her car seat, and load her manual wheelchair and power wheelchair alongside her diaper bag. Once home, it’s off to therapy, which is an hour’s drive away.
Therapy sessions are often met with resistance; like any other 6-year-old, she would prefer to play or swim with Lucas. While she engages in arduous physical therapy, I experience an emotional workout watching her exert every ounce of strength. Supporting her weight, maintaining head control, and reaching for items are all monumental tasks, yet she persists despite her fatigue. Although she cannot speak, our conversations flourish through her expressive eyes, radiant smile, and gestures. She possesses a vibrant personality, yet remains confined within her own body.
Upon returning home, Emily expresses her desire to go outside through eye gaze. I carry her down the stairs and secure her in her power chair. She delights in playing hide-and-seek with Lucas and his friends. The sound of her laughter is a magical moment, temporarily overshadowing the challenges her condition presents. However, this joy is fleeting. When Lucas and his friends make plans to enter a house, Emily is unable to follow due to the limitations of her power chair. My heart aches as I witness her tears. Lucas consistently comes to her aid, sacrificing his own playtime to keep her company, which fills me with pride. While I would like to attribute his empathy to my parenting skills, I know it stems from his deep love for his sister.
As the day progresses, it’s time for stretches, an activity Emily dreads. These stretches are essential for managing her muscle tightness. Our entire family participates to make the process as enjoyable as possible. Emily relishes playing with Play-Doh and sensory bins, which aid in opening her hands. She even takes on the role of a chef, assisting me in the kitchen. After dinner, I transition her into a standing frame, which is crucial for strengthening her legs and hips, as well as for various bodily functions we often take for granted. She enjoys pushing a tennis ball off the tray for our dog to chase. Next, we engage in tickle time on the floor; what she perceives as play is actually a method for encouraging her to roll and scoot.
Following dinner, Emily enjoys her favorite YouTube videos, and we once again share a dance. Her father manages the nighttime routine, which includes administering medication for muscle spasms and carrying her upstairs for a bath using her specialized bath seat. We brush her teeth, change her diaper, and finally tuck her into bed. The night involves a cycle of repositioning her for comfort, especially since she underwent double hip surgery and muscle lengthening earlier this year, leading to sleep disturbances. We vigilantly monitor her through the night, never fully resting ourselves, with the specter of seizures lingering in our minds. Research suggests that parents of children with special needs experience PTSD at rates comparable to soldiers, and our experiences reinforce this notion.
This is our daily reality, a cycle that repeats itself. Despite the challenges, we ensure that each day begins and ends with dancing and smiles, creating a loving atmosphere for Emily.
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In summary, our life revolves around providing Emily with love, support, and opportunities for growth, while navigating the complexities of cerebral palsy.