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!


I was washing my hands in the sink outside the door to the Pediatric ICU. I looked up and caught my tired face in the mirror. At the same moment, another face, another mama, was doing the same: Inspecting her own exhaustion like she was looking at a picture of herself and wondering how she got here.

Under her breath, she muttered this one sentence prayer like she was reading it directly from my own heart.

Lord, have mercy.

This has been the worst. I won’t go into great detail, but we came in Tuesday thinking we would close the tiny open hole that hadn’t quite closed after taking out her trach tube a year ago, then expected to \be home again in a day or two. All signs pointed to success.

That was not to be. Actual surgery time went perfectly. But, the past two days in recovery have been scary. Frustrating. Nauseating.

In post-op, K coughed when she woke up from anesthesia and blew an interior stitch. She inflated herself with air, and (complicated story short) the doctor cut all the stitches he had put in the top layer of her skin. So, she has a large, open hole in her neck that we thought we would watch and wait and let heal.

We thought we had weathered the worst, and were headed to a room upstairs out of ICU. But, a chest x-ray showed air around her lungs that had caused a lung to partially collapse.

So she will need a chest tube and we will be putting a trach tube back in.

Trach tube. Again. It’s not indefinite like it was the first time; we have tentative plans to surgically help her so she isn’t dependent on the trach anymore.

But, here we sit. Waiting for them to come help our baby keep breathing.

This is not what we planned. This is not what we wanted. But our baby is breathing.

To be honest, I’ve been mad at God the past few days.

It just feels so hard to go back to square one after everything we’ve been through. We thought we were sealing up the airway issues and moving forward.

But, here we sit. Somehow thrown violently back to the starting line of this race, told to start over.

And it’s back to the Psalms, because it’s what I read when I need balm for my soul. Lee remembered Psalm 13, which reads like the psalmist put pen and ink to my stormiest thoughts this week.

It starts like this:

How long, O Lord? Will you forget me forever?

How long will you hide your face from me?

How long must I take counsel in my soul

and have sorrow in my heart all the day?

How long shall my enemy be exalted over me?

This is my silent rage. I’ve prayed and prayed this week, but nothing is easy. Just when I think we’re in the clear, something else happens.

I want to breathe for her. I want to give my body so she doesn’t have to hurt. But I can’t. And so we give our comfort, we give our strength. When we have no more to give, we give anyways because she is our girl.

David continues:

Consider and answer me, O Lord my God;

lest my enemy say, “I have prevailed over him,”

lest my foes rejoice because I am shaken.

Shaken. Yes, that’s about right. I never wanted to experience that week again—the one when she first was trach’ed in the NICU two years ago, the week that comes back to me in vivid fragments of memories.

But as I’ve been writing this, they’ve come to tell me my girl is out of surgery. We went back and saw her again covered in tubes. And, yeah—it feels like we’ve been defeated.

But there is work to do.

So, once again, we’re putting on sterile gloves and suctioning a trach. Once again, I’m kissing her face as she shows me she hurts in a way I cannot understand. Once again, I’m steeling myself to see the places where they’ve had to cut her open. And once again, I’m on my knees begging my God for mercy, mercy.

I’ve come up empty when I try to draw strength and courage from my reserves. There isn’t a drop left. But I know He will fill me, because He always does.

Psalm 13 ends with a shift. My heart is getting here. When there is nothing to do but face a reality I don’t like and walk straight into the wilderness again, the only thing to do is trust my God who knows tomorrow.

But I have trusted in your steadfast love;

my heart shall rejoice in your salvation.

I will sing to the Lord,

because he has dealt bountifully with me.

We sang to her last night when she woke up from anesthesia to find that she had a painful tube connected to her side and a ventilator hooked into a trach, which hasn’t been there for a year.

We sang, “He’s got the whole world in his hands” because that’s what she likes to sing at bedtime.

There is great wisdom and comfort in baby songs. As bad as all this feels, I know I have a God who is in control. Bad things happen because we live in a broken world, but He will write this story and call it strength. Not sadness.

I know I have a God who understands. As Lee prayed last night, Father God knows what it means to watch His child suffer.

And from that suffering came good. Because of Jesus, I have a hope to cling to as I suit up to face this next battle.

He’s given us discernment and helped us make some really hard choices this week. He’s given us peace in knowing we’re doing the right thing for our girl, no matter how painful. He’s given us some really great doctors and nurses who care and whom we can trust to take care of our girl. He’s given us the overwhelming support of a praying community—friends and family who buoy us with prayers and encouragement. A good word at the right time does a lot for our exhausted bodies and minds and hearts.

And He’s brought us through this before. He’ll do it again.

He’s given us miracles before. He’ll do it again.

This is going to be hard.

But, here we go.

The Invisible Road

Asking Grace