Living without the answers and support I needed meant navigating life while holding on to hope.

When a child doesn't know they're living with a disability, they spend their childhood trying to work themselves out instead of understanding what they're living with.

When you don't know you're living with something, you don't live in a Cinderella, happily-ever-after world where everything magically corrects itself. You don't live in a magical world of peaches and cream, where things simply go together and eventually fall into place. You live in a very different world.

You live in a world where, every day, you have to work out how you're going to survive and how you're going to be interpreted by others. At the same time, you're trying to understand yourself. When there is no emotional support support and no explanation for why you experience the world as you do, you are left to internally work 'you' out.

I've lived that life. I've sat quietly, observing, thinking and trying to make sense of things I didn't known about, or understand. I've had to navigate situations without knowing why they felt difficult, why I responded differently, or why others chose to interpret me differently. Without answers, I simply had to keep going.

And through all of that, I never gave up on hope. I used hope to live, to believe that one day I would come to know. In the hope that 'hope' would never let me down. It became my guiding light. When I didn't have answers, I had hope. When I didn't have the support I needed, I had hope. When life felt frightening and uncertain, hope gave me something to hold on to. But hope shouldn't have had to do all the heavy lifting.

Knowing what you're living with matters. Understanding yourself matters. Having other people understand you matters too. Without those things, you can spend years adapting, compensating and surviving, without ever really knowing why life feels as difficult as it does.

That is exhausting.

Some of the articles you read on The CP Diary come from those lived experiences. They aren't observations made from the outside, or experiences I've imagined and then written about. They come from a life lived without the understanding that could have made that life easier.

Given half a chance, much of what I've lived through would be something I would willingly have traded. I would have traded it for a life made easier. A life with less stress. A life with support. A life where I didn't have to continually work myself out. I would have traded it for a life where someone else might have helped me to understand what I was dealing with, instead of leaving me to find those answers for myself.

Most of all, I would have traded it for a life that hadn't and still doesn't feel quite so scary.

There is sometimes an assumption that because we eventually make something meaningful out of difficult experiences, those experiences somehow become worthwhile. Turning our experiences into something that may help ourselves or others doesn't erase what those experiences cost us. I live with that cost every day.

The CP Diary gives me a place to make sense of those experiences and put words around things I once couldn't explain. It allows me to take what I've lived through and turn it into understanding. But that doesn't mean I wouldn't have preferred the understanding first. I would have preferred the answers. I would have preferred the support. I would have preferred not to have spent so much of my life trying to work out 'me' on my own.

Hope carried me when those things weren't there. It gave me something to believe in when I couldn't see what was ahead. Perhaps that is why I held on to it so tightly. Hope didn't magically correct everything. It has never given me the Cinderella ending where everything suddenly falls into place. Nothing has. But it kept a light on.

And sometimes, when you're trying to find your way through a life you don't yet understand, that small light is what helps you keep going until understanding finally begins to find you.

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Ilana Estelle is a mental health and wellbeing advocate who combines educational insight with her personal experience of living with physical, mental, and emotional disabilities. She holds diplomas in Counselling, Diet and Nutrition, Nutritional Therapy, Psychotherapy and Counselling, and Stress Management. Through her writing, Ilana supports others in navigating their emotional, mental, and physical health challenges. In addition to writing for The CP Diary, her work has appeared in healthy lifestyle magazines. Ilana is also the author of three books: Cerebral Palsy: A Story – Finding the Calm After the Storm, Spirituality, Healing and Me, and Survival: The Covid Years – Time for Change.

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