I’m Oliwer. I can’t yet tell you about my day in my own words, so Mum and Dad piece it together for me — from looks, movements, play, and moments we really share. They don’t know exactly what is going through my mind. But they know my world is full of things worth exploring, and that sometimes all of us need to slow down.
My body is learning at its own pace. Low muscle tone makes it harder for me to stay steady and move with confidence. Something that seems ordinary to another child can be a whole task for me. So Mum and Dad don’t only watch how quickly I reach a goal. They notice each attempt, each new bit of confidence, and the moment when I need to rest.
One of our games is with blocks. I used to knock the whole tower down at once; now I sometimes take it apart, one block at a time. I don’t need to build a tall tower for it to feel like a big moment to us. Mum and Dad see that I learn in my own way — and that a small change can mean a great deal.
Words are still taking their time to find me. I can’t yet say everything I want, so we are learning to understand one another through a look, a movement, or the things I return to. Meals need special care too: some textures are difficult for me, and most of my food is smooth and puréed. Mum and Dad adapt it to what I can manage, making sure there is care and calm around the table.
Rehabilitation, exercises, and appointments with specialists are part of our week. Some days are shaped around what my body needs; on others, an ordinary moment at home or outside matters most. Mum and Dad put medical reports together, arrange my care, and look for experience from specialists in other countries. There is still a lot we don’t know about the change in my KDM6B gene or what it means for me.
Mum and Dad would like a clear answer for every next step. Often, they don’t have one yet. Still, each day they return to what they can do now: stay close to me, seek care that fits, and share in what I am learning. When a moment is hard, they try to go through it with me slowly, one small part at a time.
As the day grows quiet, not everything that matters fits into words or a medical report. There is me, Mum and Dad — the moments we share, their patience, and the world we are discovering together. They call these little steps. For me, each one is the beginning of something big.
