The journey towards acknowledgement
Last night the Treehouse Genies met for the first time since our book launch. We struggled to work out how much time had passed since we were last together. The book launch was so significant and momentous that it felt like yesterday and yet so much has happened since that night that it feels like a lifetime since time has marched us forward.
Such wonderful opportunities are presenting themselves to us. We have had so many on-line and face-to-face conversations that have confirmed what we already knew – that our Treehouse Genies are filling the gap, the space where conversation about difference among young people should be taking place.
And whilst we have been discussing and welcoming all these exciting business and commercial opportunities. For me, the most significant and meaningful outcome from the last two weeks sits in a very different place.
I am the parent of a 15-year-old child who is pain every day and it is devastating to acknowledge that this will be her reality, always. There is no cure for her rare genetic condition. She is stoic, brave and articulate. Yet despite this, opening up to her friends and brother about her condition initially was a huge challenge and burden. It is her journey over these last few years to the point of acknowledgement at our book launch, that has been so powerful, so moving and so extraordinary for me over these last few weeks.
As Jess explained to the audience at our book launch, when she first created Pip for the Treehouse Genies it gave her a channel to start communicating about how it felt to be her with her diagnosis. She explained that whilst Pip has the same rare genetic condition as her, Pip was still charming and comical, she wanted to continue laughing with her friends and being part of ‘the gang’. Her genetic condition was something that Pip had, but not the one thing that defined her. Despite the fact that Jess actually created Pip, somehow this fictional character, has given Jess the courage to find her voice.
I watched Jess, three years on from diagnosis, stand in front of an audience at our book launch and introduce herself: ‘I am Jess, I am the Treehouse Ambassador. I have a rare genetic condition, but I don’t mind’.
It was amazing Mel – you guys rock! Love you & so impressed by your strength. Great blog post xxx