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 →
“Do you ever wish you didn’t have your disease/disability?”
When I was in pre-k, I started praying for just one thing — healing. I knew doctors couldn’t “fix” me, but I believed that God could. At 24 years old, I’m glad He didn’t give me what I wanted in that season of life. Why? In this season of life, which has been filled with... Continue Reading →
Disease/disability: what’s the difference?
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 →
We’re all a little different
“Hey, let me do it,” my sister whispered while reaching for my french fries. As she offered to feed me, I tried to count how many people were watching me fail to feed myself with my dysfunctional right hand. For just a moment, I want you to step into my shoes. You’re 23 years old.... Continue Reading →
The Progressive Disease
“It’s going to get progressively worse,” the doctor informed me. I smiled and nodded my head as I responded, “I know.” But I didn’t actually know. The past few years have been relatively “easy” in comparison to my adolescent years. As the major health complications decreased, I became increasingly convinced that life would progressively “normalize.”... Continue Reading →