May 2019: As my mom and I left Children’s the other day, we overheard two women discussing their travel plans. One woman was preparing to go to Monte Carlo, and the other woman was planning to go to another PGA tournament site. As they innocently conversed with one another, I wanted to scream. I, too,... Continue Reading →
May 2019: The last few weeks have been difficult to endure. I planned to post about my health a week ago, but as I attempted to type a few words, throbbing pain radiated throughout the arm. I began to cry as I realized I wouldn’t be able to manage the pain much longer. When I... Continue Reading →
I was getting ready to go to the library yesterday when I noticed coffee on the floor. I quietly grumbled as I grabbed a Swiffer pad and proceeded to clean. I didn’t really have time to clean, but I knew I needed to take just a few minutes to clean up the mess. Ironically, those... Continue Reading →
We like to refer to the cold as a “common” illness. It spreads easily, and we assume everyone feels similar symptoms: Runny nose. Congestion. Coughing. Sore throat. We know these symptoms are common, but most of us aren’t aware of the uncommon symptoms a person with a disease/disability may endure when afflicted with an illness... 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 →
When I was 11, my life radically changed within a month. I went into the hospital as an adventurous kid, but I left as a grown up. From then on, restrictions and limitations ruled my life. They formed a fence I had to stand behind as I watched everyone else live a seemingly limitless life.... Continue Reading →
When I was in high school, I came across a Harvard journal article about Klippel Trenaunay Syndrome. I read pages and pages of research about a three year old female with a misshapen, port-wine stain covered upper body. “How weird,” I thought as I examined a picture of the little girl’s hands. “They look just... 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 →
Do you usually think about how to open a door before you walk through it? When you’re at a coffee shop, do you think about how you’re going to grab your coffee, receipt, and change all at once? As the Lord’s Supper tray comes toward you at church, do you think about how you’re going... Continue Reading →
After 23 years with these hands and arms, I have developed creative ways around obstacles. And yet, there are some obstacles I need help getting around. For example, I have trouble opening any type of bottle. I struggle when I’m cutting my own food. I cannot open a bag of chips unless I use my... Continue Reading →
Growing in the Groaning 