From a Mother’s Heart:

49 EEGs.
Forty-nine.
Every single one reading abnormal.

A neurologist, epileptologist, brilliant, seasoned, persistent. After years of trial and error I finally asked the question that had been burning in me:

Have you ever encountered seizure presentation like hers? Ones that the outward signs weren’t textbook. Ones that read as abnormal epileptic form discharges. Persistently change shape, pace, and pattern every time? Ones that are complicated by her brain tumor?

The answer was no. There were of course similarities to other’s stories but there was nothing textbook about Lowin.

We walked a path as unique as Lowin. A path of trial and error, except the errors came at the risk of my baby’s brain. Over five different medications. Five different hopes. Five different heartbreaks.

But we weren’t walking alone.

Two very specific doctors refused to ever give up. Dr. Welch and Dr Abel. They listened to every plea. They believed me, even when Lowin’s symptoms didn’t look like anything in the textbooks. They respected my instincts as her mom. They answered midnight emails when fear stole my sleep. They turned every stone. Explored every option. And when every road led to surgery, they stood beside us in the hardest decision of our lives.

Because how do you choose to remove part of your child’s brain?

You only do it when you have trust. When you have hope. When you have experts fighting in boardrooms, insisting that even though the risks were real, the potential reward, her future, was worth it.

Forty-nine abnormal EEGs in the past 5 years.
Forty-nine moments that confirmed our fear.

And then….one.
One normal EEG.
A result that dropped me to my knees.

In that moment, doors we never thought she’d reach suddenly swung wide open. A future we only allowed ourselves to dream about now within reach. Independence gifted back to my wild, endlessly joyful girl. The girl who wakes up every single day as if it’s the best day ever. She is full of sparkle and giggles and light, no matter what her body tries to throw at her.

Her resilience is unstoppable. Her joy unshakeable. And now. Finally. Her brain gets to join her in that freedom.

To our extraordinary medical team, our Heroes in scrubs, thank you. To the entire nursing staff on 6 EMU, you loved my girl like your own. You celebrated the small wins and carried us through the hard nights. And to Drew, the unit director, her best friend, thank you for being her laughter, her joke sharer, candy thief. We are forever grateful for your dedication, compassion, and heart.

Through it all, every fear, every prayer, every sleepless night…God was moving. He was working while we were waiting. And now we get to see the goodness of His plans unfold right before our eyes.

We believed.
We fought.
We never stopped praying…
And here she is.

***The light***

To every person involved with UPMC Children’s Hospital Foundation, every staff member, every volunteer, every donor, every heart behind this Foundation, you may never fully see the light you bring to families like mine. But I promise you… it shines.

It shines in the moments when fear feels endless. It shines in laughter that breaks through hospital walls. It shines in hope the kind that reminds families like ours that even in the darkest night, the light still wins.

Thank you for being that light. 

Thank you for being our light.

With gratitude and hope,

Krystal
Lowin’s Mom