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Longing for Nearness

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 →

Greater Awareness. Increased Action.

“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 →

The Unfortunate Event

“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 →

One Year Later…

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 →

What You Don’t See

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 →

On Speaking Up

“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 →

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