A few days ago, Jennifer said to me, “I don’t know how to tell this story without making us look like idiots.” And we’ve been wrestling with that for almost a month now. I think the honest answer is really, “Yes, we were idiots.” And maybe part of blogging about life with ichthyosis is being [...]
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What’s the quirkiest thing you’ve ever seen a teacher do? This month, I began co-teaching a class at Georgetown, as an Adjunct Professor in their School of Continuing Education. It’s the first formal class I’ve taught, and part of me wonders how I’m doing. The students are, for the most part, very engaged, although a [...] Last spring, our family participated in grand rounds at a regional dermatology meeting. The dermatologist running the grand rounds was our family dermatologist, but I also considered her friend due to our joint advocacy work. In addition to making the boys available to be examined, I prepared a 1-page sheet that discussed our type of [...] I think one of the reasons that Stephanie’s post from yesterday in our harlequin ichthyosis series has resonated so strongly with many of our readers is because it really shows how even the most severe forms of ichthyosis don’t have to get in the way of the really important things in life. For parents who [...] Our guest today is Stephanie. She is the author of the blog “With Faith That Will Move Anything” and the YouTube vlog of the same name. ——————————————- On April 11, 2012, I married the man of my dreams. He was cute as could be with dimples that made my heart melt and gorgeous brown eyes. [...] We’ve always been curious about ichthyosis in history, and researching that topic has been one of my ongoing projects. Yeah, I know, I’m a bit of a nerd that way, but if I wasn’t, you wouldn’t be reading this, would you? I started off my search in thinking about the story of Jesus healing the [...] Hunter is back with us today, sharing her experiences in high school. —————————————- After my middle school experience, I went into high school very guarded and careful. I always kept a barrier up against new people because I was afraid of having them bully me. Ninth grade year was by far the hardest of all [...] Jennifer recently asserted on Facebook that my “idea of cooking is a frozen pot pie”. I can’t argue too strongly with that on most days, although my culinary skills really do go beyond button-pushing on the microwave oven. Honest! A couple of nights ago, I broiled some hamburgers in the oven. Opening the package of [...] |
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