The Popcorn Farmer is the second family history paper children's storybook I created. It is in honor of my maternal grandparents, Vern and Sybil Bryson. I grew up on their farm and loved it. Well, loved most of it. 😉 I knew the next generation really wouldn't remember "Great Nana/Grand Nan" and Grandpa died before … Continue reading The Popcorn Farmer Storybook
I love family stories. As a child, being told family stories anchored and tied me to something bigger than myself. The stories told me who I was when I wasn’t sure how I fit into the world. They helped me navigate a really hard time. The most meaningful story to me was that of Margaret’s … Continue reading Margaret’s Butterflies Storybook
I live life on the edge. The edge of an allergic reaction. The edge of medical science. The edge of an unknown, looming, black abyss. The edge of fear. The edge of faith. I’m not an “edge” type of girl. I am terrified of falling. Heights have always scared me. I have always clung to the known, the safe, the solid. I don’t have that luxury anymore.
Photo of the 400+ Rare Disease Legislative Advocates. Photo courtesy of EveryLife Foundation. I don't know why it's so hard to believe I'm allowed to have a voice. Actually, believing I have a voice isn't the problem. Its believing I have a voice worth listening to...that's where I struggle. Believing that my experience has value … Continue reading Finding My Voice
Hello, World! Once upon a time, I had a blog. It was so fun for me, but after a rough year, I stopped and didn’t pick it up again. Then I got sick. Again. My plate suddenly got really full trying to manage a serious, life-altering disease. It was really easy to narrow my world … Continue reading Hello, World!
