REFLECTING ON THE JOURNEY

I had a moment this week where i found myself remembering my daughters journey as a young child with ASN.

Talking with Spotty Zebras brought back a whole host of memories, hospital appointments, challenges and the constant push to advocate for her rights. I was her voice when she couldn’t speak for herself. I had to fight for everything she needed.

Looking at where we are now I see all the stages we have gone through as a family. so many mile stones and accomplishments and i know there are still more to come. they will be different again but no less important.

We become experts at each stage then like child birth we somehow forget the intensity of it as we move on. Not because it wasn’t significant but because we are always adapting, always moving forward, but these experiences are never lost, they live in us tucked away in the storage spaces of our memories.

As parents of ASN children and young adults we have walked roads that others are just beginning, That is why we need to come together to share our knowledge, our experiences and our support with the next generation of families starting their journey.

IF WE DO, MAYBE JUST MAYBE THE PATH WILL BE A LITTLE SMOOTHER FOR THEM AND THAT IN IT’S SELF IS SOMETHING WORTH FIGHTING FOR.

Sincere as Always - Claire x