"This is Rare Disease Week and I learned the hard way . that most medical folks haven t encountered them and simply won’t be able to help when issues arise."
Image zoom
The author and her son. He was walking at the beach for the first time on the same day that he received a neurogenic bladder diagnosis in October 2019. | Credit: Courtesy of Holly Kearl
My nearly 3-year-old has an unusual body. He has lifelong colorectal and bladder differences from being born with threerarediseases and a disability. He s also a determined, mischievous, and creative child whom I love very much.
As I parent him, there have been many days when I ve experienced both big highs and big lows and at first that surprised me how could I feel such opposing feelings at once?