I recently attended a Leadership Symposium run by the charities Genetic Disorders UK and Global Genes. Alongside me were many men and women who spend their time fighting for the rights of those affected by rare genetic disorders; be they parents, scientists, doctors or advocates, all of them working to make the lives of children with rare diseases better.
I came away with a head full of inspiration and information, but what is left now as I write this blog, is a heart full of the pain and hope of the mothers I met.
Many of these amazing women have chosen to face outwards to the world, in order to find ways to change and improve on what they had to fight to achieve.
I felt so proud to be part of this group, trying as I do to raise awareness and stand up tall. Alongside my TV day job and mothering of my boys, one of whom has two rare disorders, I have chosen to help run the charity Chromosome 18 Europe and write children’s books, one of which is now a musical ebook called The Treehouse at Number 9, created to raise awareness for GDUK and all the rare gems out there.
The Treehouse Genies featured in The Treehouse at Number 9
So instead of being asked how I find the time, as is often the case, this weekend I was in the happy position of wondering and asking other women how they managed. Managed to change the law, run a foundation, form a charity, build a network, create a science programme, put on a conference and strengthen a global movement.
I basked in the glory of this room full of champions, and realised that while there were 100 different conditions represented, what we have in common as parents, and mothers is bigger than all of that. I believe strongly that it is our commonalities that will help us to go from a group of individuals, to a movement of many.
As parents of special kids we exist to navigate the world for our children and fight to keep them healthy. We don our armour to smooth the path and battle with the systems in order to give them the best future we can. We often choose to do this by forming charities and finding others, pushing to make things easier for those that follow, often knowing that the benefit won’t be felt by us at all.
These are the things that we do, outside of the day to day, shape our lives as special parents, with no palpable reward. However just knowing we might have helped even one person to have it a little bit easier is kind of priceless.
So Happy Mother’s Day to all the mums out there, special or otherwise, and all the dads and grandparents, siblings and friends who help us to do what we do.
Why not sign up for Jeans for Genes Day 2015 on Friday 18th September and help to transform the lives of children with genetic disorders.