This is a first. Using a song twice – never done that here before. But for all the searching, I just kept coming back to this song again and again. When the lyrics are this good I guess they have a right to be re-purposed.
Hold on, to me as we go
As we roll down this unfamiliar road
In December 2002 I moved to the beautiful seaside town of Whitby North Yorkshire in England. Whitby is a close-knit community where it’s not uncommon for people to have roots that go centuries back. People often grow up in Whitby, move away for a time but are drawn back like the waves on a beach. The pull of home is stronger than the adventures they might find out in the ‘sea’ of the wider world. Whitby pulled my husband back from Canada and me with him. Whitby is the home of fishermen – casting nets far from here yet longing for return to the safe harbour of home. Whitby is not a large place – but it makes people with large spirits.
I’ve always known that the people of Whitby were big-hearted, family centered, loyal, generous and courageous but recently the local community have awed me with just how incredible they truly are. Let me tell you about it.
On July 27th – 30 + extraordinary individuals will be traveling from Whitby to London to compete in the 2013 Virgin Active London Triathlon for Cure Rett and specifically for my daughter Emlyn. 30 people from Whitby – a small seaside town. 30 people – most of which have never done a triathlon before. 30 people who – when asked – said ‘I can do that!’. 30 people who have hearts as big as the sea they live beside. 30 people.
That’s pretty awesome right? But that’s just the beginning. These 30 + people aren’t content to just train for a triathlon – heck no! They’ve planned a series of events leading up to the triathlon that’ll set your head to spinning. Every week for the next 12 weeks has something or other planned. Events to raise awareness of Rett syndrome in the community and beyond. Events to help raise funds to contribute to the team target of £10,000 by July 27th. The team will be bag packing, spinning, rowing, growing and having bad hair days. The team will be dancing, dressing up, dressing down and changing the colors of the town – all to make a real difference.
That’s pretty inspiring right? But that’s not all. The team have been tweeting, sending out sponsor forms, making collection tins, putting up posters and asking their family and friends to donate to their Just Giving pages. They have been giving interviews, encouraging each other and signing up new – unsuspecting victims err, scratch that – signing up new volunteers almost daily. They are gathering the most amazing momentum.
You’re getting excited right? But there’s more. The team have asked in many of the local businesses for sponsorship – they never get turned down. They’ve asked for help with poster printing, for counters to put tins on, for walls to put posters on, for help with equipment they need to train – they haven’t been refused yet. The local community is amping up the momentum, spreading the word and giving the team a large dose of ‘true Whitby spirit’. It’s fair to say…we’re all feeling just a bit emotional.
Just know you’re not alone
Cause I’m gonna make this place your home
Tonight is the first event in our countdown to London. It’s in Emlyn’s school and it’s been organized by the staff who make every part of Emlyn’s education experience incredible. The school – East Whitby Primary – where the teachers are so compassionate they have visited Emmy in the hospital (on the weekend no less!). The school where Emlyn’s Head Teacher – Mr Mok – wrote, composed and recorded a song exclusively for her (he will be performing it tonight…I will need a full box of tissue!). The school where children generously donate some of their pocket-money to Cure Rett because they want to see Emlyn have a long, full and free life….and because they love her ‘just the way she is’ as well. That’s part of what I love the most – these people see Emlyn for who she is and they love her just like that, but they also love her enough to want her to have the same opportunities, and the same good health that other – more typical – children her age have. I couldn’t have asked for more if I’d known what to ask for.
Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found
Just know you’re not alone
Cause I’m going to make this place your home
One of the events in our Team Line-up is called Walk a Mile in my Shoes.
That is Emlyn’s own personal challenge.
On the 14th of July Emlyn will attempt to walk a mile. A mile might not seem like a terribly long distance but it’s more like a marathon if you have Rett. A good friend of mine aptly called it ‘Emlyn’s Everest”.
Emlyn struggled very hard to learn to walk (something the majority of girls with Rett can’t do) and has worked hard to maintain that ability despite numerous setbacks. Next year Emlyn will be having surgery to correct advancing hip displacement. She will have her hips and both of her femurs broken, reset and rigidly cast for months. We’ve been advised that it’s unlikely she will walk again after this surgery – however, with Emlyn I have learnt to NEVER say never. Only time will tell what she can and can not do. But while she still definitely can, we wanted to give her an opportunity to use that skill. So that’s what she has indicated she wants to do. She will – of course – have the whole team doing it with her, and should she get too tired there will be many heroes to take turns carrying her towards her own finish line. Eye Of The Tiger will be playing as she crosses it…and the cheering will be heard for miles. This isn’t a big town – but it’s home to big people.
Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found
Just know you’re not alone
Cause I’m going to make this place your home
