She can’t rewrite the future, but she can fill today, so she does, with love loud enough to quiet fear and strength delivered one day at a time. She moves through life; one foot is planted in today, and the other is reaching for a tomorrow she can’t see. She’s a mother of three, one bright little girl growing stronger each week, and two brave boys living with a disease that slowly takes strength away.
Her days are full of board games, belly laughs, and homeschool moments at the kitchen table. They’re also full of a quiet ache that never entirely leaves. She watches her daughter learn new things while her sons work to hold on to skills they once had. Duchenne feels like a fight she can’t throw herself in front of; it’s helplessness mixed with love so fierce it hurts.
On good days, the present is enough. She plays another round at her five-year-old’s request and smiles at the giggles. There are playdates with cousins, the gift of being home together, and the comfort of sharing her story at Bible study, where people listen and lift her. Those moments steady her feet and remind her what’s still beautiful. But sometimes the quiet that Duchenne brings knocks the wind out of her. In the stillness before sleep, her thoughts slip ahead to the future, and she wipes away tears for things she already knows but can’t stop grieving. She knows her oldest can’t walk anymore, but that truth hits like it’s brand new every so often. It’s not a surprise; love collides with loss randomly.
One memory won’t leave her. After a move, drained from unpacking, she drove to the store and a vivid image flashed across her mind: a silent bedroom, an empty bed, dust on the furniture. It felt like her son’s room. The picture struck without warning, and she had to pull over as waves of grief broke open. She cried until the fear loosened its grip. Years later, that vision still hangs around the edges of her mind. She’s learned fear grows when she gives it space.
It will visit, of course, but it doesn’t get to own the day. If she lets those jolts bring her back to right now, they become a nudge to notice small goodness: a shared joke, a steady breath, a tiny win no one sees. Hope doesn’t mean ignoring the complex parts; it means meeting them and choosing the next step.
People ask where she finds hope. She prays for a cure; she will never stop. But her anchor isn’t only in medicine. It’s in God’s hands, in the belief that He sees the whole road even when she can’t. She believes that strength arrives when needed, not months in advance, like a ticket handed right before the train departs. She may not know what tomorrow brings, but trusts the One who does. So she keeps returning to the present, again and again, because worrying about what might happen doesn’t lighten tomorrow; it drains what she needs to get through today.
Most days are a blend: wheelchair chargers humming in the background, little sister racing across the yard, brothers side by side in motor chairs, a mother standing in the doorway, and memorizing the moment. She loves all three with the same relentless, ordinary devotion, snacks packed, meds measured, laughter encouraged, tears met with soft shoulders. She celebrates progress that looks small to others: a good stretch, a calm morning, a task finished without help.
In this house, those are fireworks. She doesn’t pretend to be fearless. She just keeps choosing. When the future roars, she takes a breath, touches the present, and focuses on the next right thing: one prayer, one lesson, one hug, one deep exhale. It isn’t easy. It is faithful.
