The other day, she touched my neck in the hollow right above the collarbone. She said this: “Mommy no have trach. Daddy no have trach. Sister no have trach. I have trach.”
“Yeah, baby,” I said. “The trach helps you breathe.”
“Why?” she said.
For now, because she’s two, I simply said, “Your vocal cords make it hard for you to breathe.”
Satisfied, she clambered off my lap, went to play blocks, and left me a little broken-hearted.
It’s hard to give her the pieces of her story. Especially when I don’t really know what happens next. I’d like to be able to wrap it up nicely, the way I end her bedtime books—a problem solved, a lesson learned, and a kiss goodnight.
I’d like to give you a complete story, too– a detailed summary of the next few chapters, at least. But all I know is right now.
And I can’t give you a lesson I’ve learned because it’s all a work in progress— just when I think I’ve mastered a concept, another lesson hooks its beginning around the end of the last, and I learn the thing again deeper, truer, steadier.
Right now, she is good. She is happy and thriving. She has no idea what decisions we make for her, and I’m glad.
We carry heavy so she can carry light.
Here’s where we are: There are a few surgeries on the table that could enable us to take out the trach. But, those surgeries could damage her voice quality and could cause trouble with swallowing.
We almost did one of the surgeries this summer, but some unanswered questions left us feeling unsettled. So, we hit pause and decided to give it another 6 months before making a decision.
And here we stand, squarely in the middle of a path that is not a path. We are working with an uncommon combination of diagnoses, so we have no roadmap, no traveler’s guide, no heavily trodden trail.
I’ve tried researching until my head spins, studying medical diagrams of the larynx, and cold-calling doctors from Boston to Vancouver to ask questions (for the record: they have all responded and been extremely kind and helpful). We’ve asked for opinions and second opinions from some very smart, very thoughtful, very caring specialists. But, we still haven’t found a perfect, risk-free answer.
So, like the apostle Peter, we grip the railing of our boat and throw both feet overboard. We walk the skins of the water and trust that our God knows where we go.
It’s when I start to feel the whip of the wind and see the swell of the waves that I start sinking into anxiety—What if? What if? What if?
When she’s older and I give her larger pieces of her story, I want to have already carried the heaviest part. I don’t want to screw up and add a heavier boulder to her pile. And so I worry about the decisions we make.
What if? What if? What if?
And the wind whistles its danger, it white-caps the waves.
What if? What if? What if?
It’s worry that disables, that startles me awake in the middle of the night. It’s worry that tries claiming the joy out of my heart.
But my Jesus sees me. He knows my name and He knows my fears. He knows my humanity.
So, I call out, “Help me!”—and He does.
I ask for peace and He takes my hands. He is an ancient, steadying force who blows truth into my anxious heart. I’m okay. I’m better than okay: I’m strong because I’ve seen that I can do the things I never imagined I could do. Because of Him. Because He is my rock.
I ask for hope and He calms the wind. There is good—so much good—in where we’ve been. He has proven trustworthy because He has shown up, even in the moments that felt like hell. And so I know that no matter where we go, He will show up. He will do His miracles—the miracles that really look like miracles to everybody else, and the miracles that speak only to one heart.
Truly, truly He is God and He is good.