Kiko is five years old.
He loves to play. He’s sweet and full of life. He’s silly. He’s stubborn, but so smart beyond his years. He loves music and dancing. He’s shy, but once he’s comfortable, he’ll talk your ear off.
When you first meet him, you just see a little boy. What you don’t see right away is his diagnosis.
You don’t see the strength it takes for him to exist in a world that wasn’t built for his body.
But you will see his smile.
You hear his laugh.
You notice how determined and resilient he is.
Living with CLOVES syndrome means searching for shoes that won’t hurt him. Shoes wide enough for his extra-wide foot and that fit with his prosthetic. It means modified activities. Weekly therapy. Adjustment appointments. Driving 2+ hours for doctor visits that feel too big for such a small body.
It means that one-second-too-long stare from a stranger that makes your heart scream.
It means knowing how to swallow a pill at four years old.
It means watching him work twice as hard just to keep up.
And as his mom… it means holding my breath more than I’d like to admit.
It means advocating when I’m tired.
Researching when I’m overwhelmed.
Carrying the weight of “what ifs” while trying to make his childhood feel “normal” and light.
Every hard moment of his life, I wish I could take instead.
Every ache, Every pain.
Every appointment.
Every unknown about the future.
If I could switch places with him for even a day, I would.
I feel as though I’m an imposter writing his story because here’s the thing about Kiko…
He doesn’t see himself as different.
He doesn’t see himself as limited.
He just sees himself as a kid.
He is brave in ways that break my heart and rebuild it at the same time. He adapts. He keeps going. He overcomes.
He teaches me strength I didn’t know I had.
CLOVES is part of our story. Not the whole story. And definitely not the end of it.
Awareness matters. Every one fighting the unknown deserves their diagnosis. We were lucky to get a diagnosis when he was just three weeks old. (Much love for Dr. Denise Adams) So many families are still fighting for answers. Every child deserves to be understood. Every parent deserves to be heard.
He is not fragile.
He is not broken.
He is not weird
He is not weak
He is extraordinary.
And I am so proud to be his mom. 💚