A poem for Owen

Patient Stories |

02/08/2024

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Over the past year, an Evansville mom has put words to paper to share the joys and fears of caring for a medically complex child: “Loving you is so simple, it’s everything else that’s so hard.”

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Rachel Mattingly didn’t know how life would change with the birth of her second child, Owen. Born with multiple heart defects, her medically complex son has spent a great deal of time at Riley Hospital for Children, but the Evansville mom finds joy in big and small moments as her little heart warrior grows.

Below is a poem she began writing for Owen when he was a newborn, coming back to it many times over the past year, usually late at night when she couldn’t sleep.

Owen, who came home from the hospital for the first time last Valentine’s Day, recently celebrated his first birthday. In his first year, his mom said, he spent 114 days in the hospital, had three surgeries, received more than 20 diagnoses and had roughly 110 outpatient appointments.

Through it all, he has remained “our joyful, resilient little guy.”

In honor of Heart Month and her little sweetheart, Mattingly shared this poem:

———

“Complex and Simple”

By Rachel Mattingly

I sit here and study your tiny features,

Memorize the lines that run across your skin,

Watch as your sleepy eyes begin to flutter

And your purple lips rise into a grin.

For a moment, I almost let myself relax,

Soaking in the peaceful silence here,

But I know lurking just beneath the surface

Is every quiet thing I fear.

I listen to your breathing.

Was that breath different than the last?

I scan across your chest to make sure

It’s rising but not too fast.

Around and around, my mind goes

From one anxious thought to the next

Because there’s never a lack of worries

When your child is medically complex.

I hold tight to you, my precious boy,

So full of joy and cheer,

And in my darkest moments,

There’s one thing that’s always clear:

Loving you is so simple.

It’s everything else that’s so hard.

All the what ifs, all the unknowns,

Intrusive thoughts keeping me on guard.

Because in our circumstances, it feels

Like there’s a predator at our front door.

It whispers “tomorrow’s not promised”

Too loudly to be ignored.

I stress… I cry… I research…

I advocate as we weather every storm.

In and out of the hospital again,

This pattern has become our norm.

And these things have permanently changed me

As a wife… mother… daughter… friend…

My world looks so different now,

It’s difficult to comprehend.

But you, my sweet warrior –

So brave, so strong, so tough –

You’re teaching me to be brave too,

To rely on faith and love.

So I’ll savor this moment, looking at you,

Asleep smiling with your dimples,

Knowing no matter how complex things are,

Loving you will always remain this simple.

❤️