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I’ve read the entire book of Job in one sitting twice in my life. The first was on a plane. A window seat in an aisle to myself was the setting for my anguish and my desperate reading. I was pregnant. But not for long. The day before I’d been […]

Project: Suffering


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Yesterday our community, and our family personally, felt the horrific loss of Sharron Cantrell, the principal of Spring Hill Elementary School, Case’s school. It was a shock to everyone. Case’s fave pic of “Cantrell.” I know that there are many, many people who feel the loss in a greater and […]

Life is short. Ask … ...


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A dirty shirt still 20 feet from the laundry basket. The matching pants 10 feet further, still inside out. A toy that will pierce the bottom of your foot. Next to one that’s broken because it already has. A few crumbs on the floor… well, a lot of crumbs.  Even […]

Proud resident of Chaos, Tennessee



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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, […]

Every.Single.Soul.


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 […]

I’m No Angel


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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 […]

A Re-imagined Christmas List



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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 […]

Who you are


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 […]

I want to be a ...


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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 […]

I have a confession



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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 […]

Every step of the way


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 […]

Why? Why my child?


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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 […]

Making it to the Lost ...



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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 […]

I’ve never been a great ...


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 […]

Raise your hand if 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 […]

Who made you?



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, […]

The blessings of late nights


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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 […]

The fabric of our lives ...


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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 […]

Just another lullaby