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I have a confession
I have a confession. I’ve been advocating and writing about rare disease which makes total sense since Case’s condition is, in fact, what they call ultra rare. But lately, I feel like I’ve been hiding something. Not on purpose, it seemed like it was a temporary thing at first, it was really just nobody’s business…
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Every step of the way
It was like that reminder, the one that you stumble upon when you weren’t even looking for it. My friends and I (to say that, it sounds so simple)…. Well, my friends and I the friends that I never knew that I’d have the friends from far-flung places who would have never crossed my path…
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Why? Why my child?
Why? That is a word that is heard often in the world of rare disease. It’s a word that is often heard in life. Why did this happen to my child? Why him? Why our family? Why would a loving God allow something this terrible? God spoke to me through a Nigerian man. A man…
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Making it to the Lost & Found
What item of yours would make you almost pass out of you lost it? Or what about if you left it in the waiting room of a hospital and went home? Or if you left it sitting on the floor of a building lobby, next to a display cabinet, and spent the next hour having…
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I’ve never been a great writer
I’ve never been a great writer, a creative writer at least. Oh, I liked legal writing. It was structured and formulaic. But the writing I’ve been doing this past year is anything but. It is raw. It is painful at times. When Case was diagnosed, and then when he was to enter the clinical trial,…
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Raise your hand if you want to be an American martyr?
I was watching a TV show the other night where a mom had been kidnapped. The kidnappers wanted information from her and they were torturing her to get it. It struck in my mind the analogy to Christians who are tortured for their faith either in the past, like in the Bible, or presently in…
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Who made you?
Sometimes it is difficult to know exactly what Case understands and what he doesn’t. But tonight, I wanted to catch his full eyes and see if he could really intake and comprehend that I love him and that God loves him. And then, I said “Case, who made you?” He smiled and clapped and yelled,…
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The blessings of late nights
I had planned a thoughtful post, filled with the revelations I’ve been seeing lately, but to be honest, I am tired. I sit here after midnight, which is not unusual, looking at piles of paper for IEP meetings, taxes, e-mails and calls to be returned, paperwork for doctors to sign, and Case’s infusion and neurosurgery…
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The fabric of our lives … is not cotton
I had decided that I had enough friends. We were preparing to move to a small town in Ohio, for only a year mind you, and I was content that I didn’t need to make any new friends. I had great friends from college and from growing up and I was content. But I guess…
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Just another lullaby
I don’t pretend to be a great writer. I write because it is my journal and my release, and I write publicly because I hope that somehow anything or something I say might resonate with even one single person. But sometimes I don’t really bare it all, those deepest feelings of pain and fear, sometimes…
