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!

Setting Down the Heavy Things

There are things- heavy things- we carry for so long that we forget what we hold. And when they’re gone, well, it takes a little while to realize they’re really gone.

Our bodies, our muscles, our minds become accustomed to the weight— sure, we grow stronger as we endure, but there’s also this part that knots up to bear the stress. A knot that stays for a little while, even after you’ve put the thing down.

For three and a half years, we’ve done trach life. It’s a family effort— each of us in different ways have held its weight. And we’ve grown used to it. The maintenance, the equipment, the skilled help in our home. The events and vacations we’ve declined. The daily reminder that her life once, twice needed saving. The questions we ask so often it’s now subconscious. Even when I’m sure she’s fine, even though the trach is now gone— I can’t help it. I check and check like a reflex: “Is the trach in? Is the trach unblocked? Is she breathing, is she breathing?”

There are moments—the ones that leave you squarely in the middle of a life meant for other people —that seem to come back in shattered fragments. I don’t remember the first conversation about her vocal cord paralysis or her need for a trach. I don’t remember walking her down for her first scope. I remember sitting in the hallway by a window, on display as we shock-absorbed the hardest news. I remember our sweet NICU nurse friend walking by at just the right half-second, and it felt like God whispered, “It’s okay, it’s okay. Be strong, take heart. You’re not in this thing by yourself.”

There are some moments that come back with startling clarity— I remember walking back in her NICU pod after her trach surgery. She was 12 days old, and I had never seen a trach until it was in her tiny baby neck. I took a few brave steps until I could see her bed, her sedated eyes with the spirit temporarily gone, and then the sobs became too heavy for me. So, out they came. I’d never known anyone with a trach. I didn’t know what life would be— hers, mine, our family’s. I didn’t know if the trach would ever come out, when it would come out. The unknown was like a physical pain.

Three and a half years later, we know exactly what a trach means and how it changes a family’s life. We know exactly the sort of strength required, and the only thing I know to tell you about that is that the strength required is more, much more, than I ever had by myself.

We also know that this thing that was hard for us allowed her to breathe and grow and thrive and turn into this smart, hilarious, determined little girl—and for that, I’d do it all again. I’d do it all again.

Today is day eight of my girl without her trach, and she’s doing great. She’ll tell you it feels “different” without her trach, but she is proud to show all her people that she doesn’t need her trach anymore. She is busy doing all her favorite things—digging in the dirt, playing doctor, “helping” me run errands—and her breathing is quiet, unstrained.

For her, it’s a big all-at-once change. For the rest of us, it’s a slow dawn.

For big sister, it’s a slow return to things that feel normal. We don’t have to pull out medical supplies after bath and tell A to “Wait, wait.” Just yesterday, she asked if we would still need night nurses; when I told her no, it was like watching a physical weight come off her little shoulders. She’s also been thinking of things she can teach her little sister—how to swim, how to build a sandcastle, how to play in the lake.

As for Lee and me, I don’t know that we’ll ever be the same, ever feel “normal” again—as if normal is a thing. But, that’s just as well. We’ve had to learn together, fight together, hold the heavy things together. Right now, we hold our breath together, waiting for some indefinite milestone that will show us this is it, that all is solidly behind us, that we can set this all the way down. But, we also celebrate together because there is no one else who understands the exact language of lovely and hard and poignant that God whispers in this story.

Today, it is a simple song of praise in my heart.

Psalm 67 says, “May God be gracious to us and bless us; look on us with favor so that Your ways may be known on earth, Your salvation among all the nations. Let all the peoples praise You, God; let all the peoples praise You.”

I feel His favor today. I feel His blessing. Today, I have what I’ve prayed for. We have what so many have prayed for us. And it’s not our right to have it. It is simply grace, simply grace. For that, I am thankful.

It has been trial for the purpose of God’s glory, trial for the purpose of joy.

Today, it is favor and blessing for the same purpose. To God be the glory.

To the NICU Mom: Stop Trying to be Strong

Decisions, Decisions