December 2019: This time last year Ethan and I began discussing what it would look like to let you enter into our world, our real world. I wondered how I could answer the questions few people have been brave enough to voice. I contemplated how to effectively communicate why conversing about diversity is so important.... Continue Reading →
A few weeks ago my mom accompanied me to a biopsy appointment. My doctors had to biopsy a particular region of my right hand in order to confirm my genetic mutation. Even though I’m an adult, my mom is always near and attentive when doctors or nurses are working with me. This time, however, I... Continue Reading →
“It’s not real,” the kid said as he pointed at my right hand. I chuckled and replied, “Well of course it’s real, silly! It’s just a hand!” Before I could even finish my sentence, the kid was lunging toward my right hand. He grabbed my hand and proceeded to pull on it. He was attempting... Continue Reading →
I was born with a syndrome (or as I sometimes call it: a rare disease). Does that mean I’m disabled? Not necessarily. You could have a syndrome that isn’t disabling, and you could have a disability that isn’t caused by a congenital syndrome. You could even be a like me — someone who was born... Continue Reading →
"I have no magic." My childhood hematologist would always grimace as she recited those four words. She really meant, “I can’t fix this, but I wish I could.” After 23 years of battling recurring health complications, I still don’t know how to “fix this.” I still face the same complications over and over again. I’ve... Continue Reading →
Ethan began to jog as I plopped down on the turf. I planned to jog with him yesterday evening, but my plans changed as soon as we entered the indoor football field. In the middle of the field, a college softball player was teaching a young girl to pitch. When I was around the young... Continue Reading →
When I was 7 years old, I wanted a prosthetic arm. My doctors showed me incredible prosthetics that could glow in the dark and even hold a golf club or car keys. I was amazed by these prosthetics with neat designs and functions, but I did not want one of these impressive prosthetics. I wanted... Continue Reading →
Growing in the Groaning 