MaKiah was born premature at 29 weeks. When she was 15 months old, her parents were told that she had cerebral palsy. When she had her first seizure at 18 months, she was diagnosed with epilepsy. Now 14, she’s been hospitalized as an inpatient (both planned and entirely unplanned) more than 50 times.
These are the facts, medically. But she is so much more than her illness.
MaKiah is a sassy (in a good way), spunky child. Not always what those who first meet her would expect.
She laughs easily, enjoys being out on the boat in the summer, and loves literally everything about the movie Frozen. She gets around, learns and communicates differently than some children. But in all of the ways that matter, her mother, Rebecca Pierce, describes MaKiah as “a typical, beautiful, and—by the way—perfect child.”
She also notes that, both medically and otherwise, MaKiah’s care can be impossibly complicated:
“Most parents don’t get as many medical bills as we do. Most parents don’t view going eight months between hospital stays as a victory. They don’t see that even a dusting of snow is just one more obstacle in a world that so often fails to offer the access to their child.
I’d also bet that few parents have had to address the question of whether or not the condition that put their daughter in a wheelchair is contagious. But some of us have.
The point isn’t always that it’s hard. Life is hard for everyone. But along with those moments, there are also times of levity, joy, success, sadness and everything in-between.”
For families like MaKiah’s, the challenges of managing the logistics of their child’s care can be compounded by feelings of isolation, and the lack of understanding from the community around them. Pierce notes that children who have disabilities, and their families, can often experience feelings of invisibility:
“MaKiah feels that too. The wheelchair and the other medical equipment is too often the first—and sometimes only—thing that people see. The devices that aid in her mobility can act like a shroud that conceals her. People don’t always know what to do, so they don’t make eye contact; they look past her.
But MaKiah has always been willing to make the first step. ‘Just ask me,’ she’ll say. She refuses to be ignored. As her parent, I can’t tell you the pride that this makes me feel, but this willingness to understand and be understood, needs to swing both ways.”