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Every.Single.Soul.
I was sitting in a terminal of Chicago Midway airport, surrounded by throngs of people preparing to visit family, take a vacation, or travel for work, when I had an unremarkable epiphany. God cares about every…single…soul…here. Every one. Not only that, He cares about every thought, feeling, worry, prayer, experience, heartache, and fear of every…single…soul…here.…
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I’m No Angel
God never gives you more than you can handle. If I’ve heard that phrase once, I’ve heard it a thousand times. As if God created me with some extraordinary amount of patience, hope, perseverance, and strength. Sometimes people think that parents of children with special needs or terminal illnesses were hand selected by God because…
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A Re-imagined Christmas List
I’m kind of at my wits’ end with Christmas lists. Are there things we’d like? Sure. Are there things we need? Not so much. But still we go through the process every year of looking through catalogs, daydreaming, and scrolling to find just those additional things to fill our house to (over)capacity. So why then…
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Who you are
I heard a song recently and one line particularly stuck with me. It said, “sometimes pain’s the only way that we can learn.” Maybe that’s true. I found my true self on April 6, 2009, lying flat on the floor sobbing for the life of my child. But what if that hadn’t happened? What if…
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I want to be a peach
We were not meant to have a mediocre life. We were meant to live a radical, blessed, edgy, open, screaming about the love of Jesus life. I’ve heard people sometimes being referred to as an onion, and even in the movie The Blind Side, Leigh Anne and Michael are each referred to as onions, where…
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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,…