Hey, friend!

I’m Shannon— I believe in the power of story to help people walk forward in hope, no matter the circumstance. I write about faith, special needs parenting, and discipleship. So glad you’re here!

Decisions, Decisions

The night we met, we mapped our pasts on napkins with a pen I found buried at the bottom of my purse. We told each other stories through lines and graphs—where we’d been, what we’d seen, who’d helped turn us into the almost-adults we were at 22.

The day I knew I’d marry him, we sat on a dock watching the sun creep down past the skyline. He told me where he wanted to go, what he hoped to do, who he wanted to be. Somewhere, on some subconscious level, I knew we could build something good together.

There’s this picture in our entry hall—it’s me in a white dress, holding his hand as we take that first step off the stage, down the aisle, and straight into our life together.

We laugh at those kids sometimes. Not disdainfully, you know—they aren’t dumb; they just don’t know. And part of that is the magic of the wedding day—they make a vow to stick together for better or worse without really knowing what, specifically, that will mean for them.

They have no idea that the “worse” seasons aren’t simply seasons to be tolerated. Those are the seasons that will sharpen and define the vow. Those are the seasons that will turn that vow from a promise made of words and rings to a living thing—a promise that grows roots and sprouts fruit.

It’s been barely a decade, so I don’t know everything. But I know this: making big medical decisions for our daughter who is too young to weigh in with her opinion has been hard. Many of the decisions have been straightforward—her vocal cords block in her airway, so we signed consent for a trach. She was aspirating as a baby, so we signed consent for a g-tube.

But, there are other decisions that feel more like a bad game of “Would You Rather…?” Would you rather breathe without a trach, or have a good voice? Would you rather have a short recovery but potentially face irreversible voice dysfunction, or endure a complicated procedure but not have to amputate a piece of the larynx?

When five world-class doctors give you five different answers as to what they propose is best for your kid, the decision gets complicated.

Enter the part where we can’t figure out what to do.

He’s a mechanical thinker; I’m a story collector. He considers each tiny muscle, tiny bone, tiny cartilage and its function, then weighs it against what might happen if you cut out a working cog or expand the diameter of a pipe. I learn to read medical journals like I read novels, and (as he likes to joke) have become adept at making friends with strangers on the internet who have had to make this exact decision.

For a year, we’d research and think, then come together and disagree. We’d call doctors and go to appointments, and then come together and disagree. Over and over like a frustrating, tense dance. We knew we were working on the same team, toward the same goal, but it’s high stakes decision making. And there’s no easy answer.

This is a decision we’d rather not have to map. And I like the story—the whole story—drawn out before taking a step. I want to know I will succeed before forging ahead.

But (don’t tell him I said this)—he was right about one thing, the most important thing. We had to take it one small step at a time. Like David and his people did as they carried the ark of the covenant home, it’s six steps then stop and pray. Over and over until you make it home.

One small decision at a time, each wrapped in a thousand prayers, then let God lead the way to the answer that will bring us both peace.

So, here we are. Lots of conversations and tears and prayers later, we’ve made a decision that brings both of us the most peace. A decision that leaves no room for “I told you so” because we’ve made this decision together, with all the strength that each of us brings to the table.

And the roots grow down and grow stronger.

There’s no one who loves my girl like I do—except for him. And there’s no one who has prayed harder or grown more gray hairs than I have—except for him.

We’re getting ready to take our girl to Cincinnati for a complicated airway procedure that will hopefully allow her to breathe without a trach tube, but preserve some options for her in the future if she doesn’t like the effect of this surgery on her voice. (Assuming this thing works.)

The process takes a couple months and several trips. It’s a tough surgery, a tough recovery. And, you know, it’s harder to trust God with our loves than it is to trust Him with ourselves. But, we press in together. We trust Him together.

We’re nervous. We’re ready.

And we could use your prayers.

Will you pray with us?

-Pray that the surgery would go as planned, without complications. Also that her body would accept the rib graft they are using to expand her trachea.

-Pray for recovery—it will be a long, frustrating recovery for K. Pray that she would understand (as well as a 3 year old can) what is happening to her body, so that she will be able to rest and recover.

-Pray for K’s anxiety during the entire process. She has been through a lot for such a little person, so medical things cause her a lot of stress. She’s a smart little cookie, so she completely understands what it means when we walk into pre-op. Pray for peace for her heart.

-Pray for A. We are SO THANKFUL for amazing, helpful families who take the very best care of A when we have to be gone. But, A has a sensitive, sweet heart and worries about her sister. Pray that she would learn to lean on God when she feels worried or anxious.

-Pray for Lee & me. It will be a long road to recovery, and K’s recovery will take a lot of hands-on care. Pray for endurance for us as we travel and care for our girl.

Setting Down the Heavy Things

A Foot Story