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!


This isn’t how the story is supposed to go. We closed a chapter, remember? The characters aren’t supposed to walk back through chapter 1 when they are acting chapter 2.

But, K is back in the hospital.

On Tuesday, they stuck leads back on her chest and plugged her in to the monitors. They stuck an IV in the same spot above her left ear where she used to have her PICC line. They stuck her with needles and swabbed her nose.

We walked into the same hallways that we walked out of six weeks ago.

And it is all sickeningly familiar.

A long story short: K got sick, so we are back in the hospital for a few days. Because of the trach, any illness she contracts is immediately a big deal because it compromises her airway. Imagine having a really stuffy nose but having duct tape over your mouth—that is basically how it feels for K to breathe when she is sick.

Thankfully, she seems to be doing much better now than she was doing Monday or Tuesday. Her fever has broken, and her secretions are slowly becoming more manageable. As soon as the doctors can identify exactly what she has and give us the right medicine, K will be discharged.

K is in the safest place right now. She should come home very soon, and she will keep on thriving. But, that doesn’t make it any easier to come home to an empty crib. Or to wake up in the morning with the dull ache that reminds me things are out of order. Again.

I’m not sure what I expected after coming home from our NICU stay. I knew it would be hard, I knew that we could land back in the hospital—that, in fact, it was inevitable because of the trach. But I didn’t know that the proverbial bumps along the road would send me sprawling across the pavement. That the smell of Purell in a hospital room would bring back so sharply the sting of helplessness.

And so, like David writes over again in his Psalms, I ask, How long? How long, O Lord? How long does she have to suffer? How long is she going to need this trach?

But I see my own impatience. I want to hurry to the end of the story and be done with pain. Be done watching my baby hurt.

But what if it is pain that changes us? That slowly carves us down to whom we are meant to be?

They say patience is a virtue. And so it is. The apostle Paul calls patience a fruit of the Spirit. And here’s what I think that means: patience is not something I can grow myself.

I can talk patience, I can think patience…try as I might, I cannot engineer patience. It is only when I must live patience that I can harvest that fruit.

So, we wait. We wait for results, for a treatment plan. We wait for K to come home again. And then we will wait some more. For the story to play out, for that day when we can look back and say, “Remember when?”

And we will remember that this was hard. But we will remember that He grew us.

Update (from Baby K)