In November 2010, 17-year-old Alisha Pierce of Owatonna, Minnesota, suddenly came down with a cold, then a fever, caught viral pneumonia, and passed away inside two days. More than three years later, her mother, Shawn Pierce, still remembers her daughter with cerebral palsy.
A person acquires cerebral palsy before, during or immediately after birth when brain damage permanently short-circuits his or her ability to effectively control body movement and coordination.
In a telephone interview, 44-year-old Shawn said, “Alisha grew physically like other girls, but was always an infant in terms of her care. She laid, played, slept, and basically lived on a padded mat. She had very low muscle tone, couldn’t sit up, and needed 24-hour care. She had up to ten seizures daily and needed oxygen assistance at night. During the night, my husband or myself would have to sleep next to her. Her favorite thing was cuddling and having her feet touch ours.”
Alisha also had cortical blindness and, though able to communicate, couldn’t talk. The Pierces had other difficulties in life along the way, including their own marriage. They had divorced when Alisha was about a year old, only to remarry five years later.
Said Shawn, “After Alisha died in 2010, I remember my husband and I looking at each other and saying, ‘What do we do now?’ He asked one night at ten, ‘Do you want to go to Perkins (restaurant)?’ It was strange having this new freedom. Suddenly, if I wanted, I could jump in the shower and stay there 20 minutes. My husband and I could sleep in the same bed for the first time in 17 years. Just having my hands free and nothing to do and the house being quiet was beyond devastating.”
Shawn’s mother had died six months before Alisha’s passing. Shawn was struggling with grief and trying to find new meaning. She felt as if caring for Alisha had been the only thing she had done well in life. A turning point in her life came in 2011 when she attended a conference in which disability blog writer John Knight shared his personal experience of faith raising a son with multiple disabilities. He validated Shawn’s experience.
Today, Shawn finds meaning in helping start a disability support group, volunteering for the nonprofit organization Joni and Friends, and rolling up her sleeves to help other families going through similar experiences.