Peeking Through the Window: 20 Weeks of Joy and Fire

My darling Lizzy,
Papa wrote this on July 3rd, 2025 — the day we had our 20-week ultrasound and saw you up on that big screen for the first time. You were 13 ounces and already showing off. Papa cried. Of course he did. That morning had been hard — ALS was stealing more from papa’s body, and he was scared. But then there you were, and everything got quiet and beautiful for a little while. This post is about holding joy and heartache in the same two hands. About mummy glowing and papa fighting. About how much we wanted you, how much we loved you before we ever held you. Carry that with you, my girl. You were worth every single fight.
I love you my beautiful girl!

Originally written on July 3, 2025

Wilmette, IL

What a day. What a life.

e tech moved the scanner across Grace’s belly, warm gel caked across her skin. Much like the dance moves I’d forgotten during Grace’s reception dance — the ones I was supposed to perform with her — I stood mesmerized while we were peeking through the window of her belly. She’d never looked lovelier. Exactly 30 days shy of meeting each other seven years ago, Grace and I were meeting our baby. I was shifting my gaze from the vision of loveliness on the table up to the tiny screen where the tech was taking measurements of our baby — 13 ounces, 83rd percentile in growth. The calculated due date of November 19th was congruent with the date already communicated to us. Grace pointed her head directly above her, which prompted me to turn my head up to the left — where a massive flatscreen had our baby on center stage.

I started to cry.

“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” — Psalm 34:18

It had been a hard morning. I discovered further declining motor skills trying to shower. Each week, I learn something new that I cannot do. I was already having a difficult time drying myself in previous weeks, and learning that I couldn’t lift my arms to wash my scalp sank my spirits. My gait continues to get more stunted. I was visibly gasping for air walking the length of Evanston Hospital.

I’m scared.

This afternoon, we had our 20-week ultrasound. Mama and baby are healthy. That sentence alone fills me with a joy I’ve never known. I’m going to be a dad. A dream that once felt so far away is now growing right before our eyes.

And yet, beneath the joy, there’s heartache. Because I don’t know how much of this future I’ll get to witness. And more than anything, I want this season to be all about Grace and our baby.

She is a warrior. She has never looked more radiant.

In 30 days, we’ll mark seven years since the day we met — and somehow, I love her more today than I did then. Which feels impossible. But it’s true.

Yesterday, I told my team. One of the hardest conversations I’ve ever had. ALS is a cruel and relentless companion. My arms are weaker. My hands tremble. Even holding my phone to text is a challenge. Writing — something that once poured out of me — now only comes in the quiet hours when the world is asleep.

Still, I feel strong. Mentally. Emotionally. Spiritually.

But in the quiet moments, I waver. I break.

And then I build again.

There’s so much to live for. So much to fight for.

Physical therapy starts next week.

I’m going beast mode.

I’ve doubled up on my meds — wiped me out earlier, but now I’m wide awake, full of thoughts, full of fire. The fire is still there.