It's a long hallway, but it's not long enough. My steps are limited, as is my ability to grasp what my doctor just confirmed. "You already knew what he was going to say," I remind myself as I approach the end of the hall. It's freeing to turn the corner and leave behind the clinic... Continue Reading →
“I’ll be honest with you, Lindsey. I had to look up your syndrome before this appointment,” the doctor bashfully admitted. “I have never seen or heard of CLOVES syndrome.” Though she seemed slightly embarrassed by her lack of knowledge, she found comfort in my silent response. I warmly grinned and nodded my head, indicating that... Continue Reading →
“Lindsey, it may not be what you think,” my mom asserted, her voice breaking through my cacophony of wheezing. “Mom!” I tried to shout, but the sound of my interjection was muffled by my breathlessness. As my mom sped down the highway toward the ER, I couldn’t stop myself from saying the words I knew... Continue Reading →
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 →
