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 →
October-ish 2019: “Mom, do you think this is what my life is going to look like from now on?” It’s an impossible question to answer, but I had to ask. If you keep up with my posts, you know that my health hasn’t been...swell. I’ve been referring to my health complications as a “season,” but... Continue Reading →
The past few months have been filled with few ups and many downs. I’ve consistently endured health complication after health complication. After five months of appointments, scans, and a surgery, I thought the consistent string of complications would finally come to an end. I was wrong. In this season of life, I’ve been brought to... Continue Reading →
When I was thirteen, I received a friend request on social media from a guy in another state. We were both part of the same academic/leadership organization, and we were going to spend some of the summer together at a convention and a camp. Almost immediately after I accepted the friend request, the guy started... Continue Reading →
This blurry photo from six years ago still brings tears to my eyes. Throughout my 24 years with this disease/disability and its challenges, I’ve asked very few people to make accommodations for me. I’ve rarely spoken up about my limitations. I’ve sparingly sought to modify a rule or standard for my own benefit. Why? Throughout... Continue Reading →
While shaking my right hand, most people typically react to my misshapen hand in one of four ways: 1. The person quickly lets go of my hand as soon our hands collide. 2. The person lets go of my hand, quickly glances at it, and squeezes my hand again, attempting to apologize for the momentary... Continue Reading →
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 →
I was standing outside my mom’s office when I noticed a young boy coming toward me. His eyes widened as he caught a glimpse of my right hand. Before I could even attempt to cover up my hands, the boy started screaming and running away from me. As I listened to his screams and held... Continue Reading →
Growing in the Groaning 