I’ve had the pleasure of meeting so many amazing people through Cure Rett. Friends who’ve dropped everything to support each other and the girls, friends who’ve cried with, who’ve pushed, pulled, organised, supported, donated, put themselves through agony and have just been there for anything.
Honestly, it can be tough being a friend to someone who’s child has just been diagnosed, what I mean by tough is that you want nothing more than to take away the pain and fix this, to be a shoulder to lean on, someone who can help work out what to do next. You also don’t know what to say, you don’t know how to express yourself, you don’t know how to help someone deal with the devastation of Rett syndrome, when you struggle to understand it. Some friends struggle so hard to say something, that they say nothing at all. Day’s and weeks of being silent eventually lead to guilt and the weight of the guilt puts so much pressure on the friendship that eventually it’s crushed by misunderstanding.
Other friends form a circle of support, stepping into the gap and holding you up and I’ve had the pleasure of dealing with so many of these amazing friends recently.
Friends are such a vital part of support, when you decide to do something, generally it’s your friends that stand up next to you and say “me too”. In all the races you run, parties you organise, cakes you sell, you can be guaranteed that there’s a friend somewhere who wants to help. Friends who run races with Erica and organise parties for Holly, friends who sell out HollyFest before it’s even opened properly, who climb on bikes and arrange parties for Ade and Emma. Friends who show up in force to attend Ruby’s curry nights and quiz show’s for Laura and John. Or the lovely ladies from Sophie’s Stragglers out running for Sophie, Paul & Faith. There are so many examples of great friends, who are not only there emotionally for the parents of our girls, but are there in so many different ways.
Over the past few months I’ve seen the Olive’s Army push into gear and arrange everything, from Festivals to fun days, I’ve seen them mobilise the community and bring tons of people out to support events for Olive, Paul and Janie. Beaumont.
I’ve seen an entire Town rally around Emlyn, pushing themselves far beyond any expectations. Watching people step up, start organising, running away with ideas and just filling weeks with events for Emlyn and Cure Rett. Spending their nights and week ends raising awareness and shaking buckets at people. Driving around to Kori and Darren’s house for meetings, but stopping off to buy some M&M’s for Emlyn because they know she loves them. Team Whitby has filled places in the Triathlon without a fuss, just because it’s the kind of people they are.
I’ve seen the A-Team, form a ring around Ava, Matt and Laura Carter, then just basically smash anything down that’s in front of them. The dirt from Tough Mudder wasn’t even properly washed off and they were planning an assault on the London Triathlon. Baking cakes after 13 hour shifts for a bake sale to raise money and awareness. The A-Team have already started to organise multiple events for next year, 19 people did Tough Mudder this year, I’ll be very surprised if that figure isn’t doubled, at least, next year.
I was watching as the A-Team were attempting the second last obstacle at Tough Mudder, called Everest, and Laura was struggling to get to the top of it, she was exhausted. One of the many friends doing it with her, ran back down took her hand and said, you can do this, you just get up there and we will catch you. A big group of tired, muddy friends hung over the edge of Everest, and cheered Laura on as she charged the ramp. They caught her, and held her, and all then they pulled her up and over Everest to go and beat Tough Mudder. If there ever was a perfect metaphor for friendship, this is it.
I can’t express my admiration for these friends enough and I know how much the families you’re supporting appreciate this. The love that the families express when they talk about their amazing friends is obvious, they are so thankful and grateful for all the big things friends do, but I think that what makes great friends extra-special, is all the little things they do.
True friends are there to lift you up when you’re are down, to help you take a step forward when you don’t think you can. To be caring enough to bring an M&M when you need it, or build and army when you think you don’t.
Sometimes being a friend doesn’t mean you have to say anything at all, it means just being there.