Living in the Unknown

Listening to “Roar” by Tim Timmons, and it’s hitting every corner of my heart today.

We’re standing on the edge of another season of unknowns — the kind that press in on you, whisper fear, and try to steal your peace.

Unknowns like:
How long will we be gone? Will Dawson be accepted into the gene therapy trial? Will we have to separate the boys again — this time with even more distance? How do we prepare for the school year that’s already racing toward us?

This is the life Duchenne forces on families like ours — living in the tension of not knowing. We live day by day, moment by moment, doing everything we can to soak in the time we have. To make it matter. To give our boys a full life despite a diagnosis that tries to say otherwise.

But this I know deep in my soul:
My boys are stronger than Duchenne.
We are stronger than Duchenne.
And as a family — as a community — we will continue to rise up, stand together, and fight this war against Duchenne.

This song is becoming our battle cry — into the fear, into the waiting, into the ache of uncertainty. I’m shouting into the darkness that Duchenne brings: YOU ARE NOT WELCOME HERE.

And in the middle of it all — the fear, the hope, the fight — I hold to this truth: Lord our God, with You beside me, I can rest. Even when I don’t understand. Even when it hurts. Even when the unknowns feel heavier than I can carry.

With You beside me, I will trust Your timing.
And through it all — every step — I will still sing,
Hallelujah.