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(Age 4)


I am here to tell the story of a little boy with one big secret. At first, this secret was so little that no one could notice it, not the ultrasound or the first blood work after he was born. Not even the doctors who saw him on regular checkups over and over again.

As this boy grows, this secret grows as well. It becomes somewhat noticeable, but yet you can’t just put a pin on it.

And you just want him to be like everyone else. You worry, so you take him to the doctor, but then they tell you everything is fine. Now you think you are just going crazy.

You have this beautiful boy, and now you feel ashamed of thinking something bad about him, so you ignore it. And you dream, like all parents do, about how their kid's life could be.

We dreamed how we would all ski together on our favourite ski runs or spend hours and hours sitting in a skatepark watching our boy learn the ollie trick. We thought we would watch our son get stronger and bigger, while we would be getting smaller and weaker, as it should be.

Ollie was born in April 2019. They called him fast and furious as he was making his entrance into this world.

After getting through the first 4 months of constant crying, our boy finally settled. Oh, and those cheeky smiles began. He was always just a step behind the other kids. We just thought he was cautious, and it wasn’t until he was three and started tripping and falling to the point where he even had a scary head injury.

On July 9, 2022, doctors shed light on the hidden part of his being. Duchenne muscular dystrophy. With those words, the images of our future dissolved into tears. We grieved for a long while after that day. I cried for hours in darkness on the bathroom floor, numb with heartache and pain, convinced I could never be happy again. But slowly, by taking one day at a time, I spent less and less time on that cold floor.

Finding joy in the smallest things and simplest moments became the necessary fuel to mend my broken heart.

This past summer, I was wide awake on a warm August night. There was a meteor shower, and I was obsessed with thinking, what if this was Ollie’s only chance to see a falling star. I could not let the opportunity pass.

“Ollie,” I whispered. “Wake up.” I stroked his curls, and he opened his eyes. “There’s a meteor shower outside. Do you want to watch it with me?” He reached out his arms to be picked up.

His four-year-old superhero mind envisioned explosions and cars strewn through the air as we stepped into the night. Ollie scouted for monsters. He was nervous and excited but trusted me to guide him on this adventure. We laid down on a blanket, his tiny body still warm from sleep. I snuggled in and smelled his damp little head, tucking him in even closer. A falling star appeared.

I wished: May this moment never end.

It ended exactly 5 seconds later when Ollie realized that a meteor shower didn’t mean explosions and buildings collapsing and wanted to go home, away from the monsters.But that moment, that feeling, that smell of his hair, I will keep it right here in my heart, and I hope I never ever forget any of it!

Notice those moments, I think to myself. I want to remember this feeling, this joy, this moment forever. This change of perspective, the change in how we feel the moment and try to memorize it, is what saved us.

We still can bike, swim, and ski in some way. We go camping, and we take the kids everywhere. Now is the time to live, to feel joy, and oh, we are!

And this is how we go on. We can’t save our son; only the doctors and science can, so we fundraise. We raise awareness, and we hope that one day, our efforts will pay off. Until then, we will live in our little precious moments.