Say Anything

 

If I could say anything, anything
What would it be?
Good question for our destined reality
I would tell you that I love you
Even when it didn’t show
I would tell you that I love you, baby
By now I hope you know.

 

For 7 days my son Cameron hasn’t said a word. Neither has his little sister Emlyn. Tomorrow Cameron will speak, but his little sister won’t. Tomorrow Cameron will be able to tell anyone who’s interested what he likes, what he loves, what he thinks & what he dreams of. He’ll be able to say ‘this was hard’ or ‘it hurt when___’. He’ll be singing if he wants to, whistling because he can. Tomorrow Emlyn won’t. She won’t be speaking. She can’t tell anyone what she likes (cucumbers!), loves, thinks or dreams of. She can’t say ‘this IS hard’ or ‘it hurts when____’. She won’t be singing although I know she wants to, she won’t be whistling because she can’t. Emlyn has Rett syndrome. She can’t say anything.

 

If you could go anywhere, anywhere
What would you see?
Take a step in any direction
It’s make believe
If your mind is always moving
It’s hard to get your heart up off the ground
Yeah, your mind was always moving
Your thoughts never made a sound

 

This is what Cameron says about ‘Not Speaking’

 

My name is Cameron (or Cam or Cammy depending on who’s talking to me) and I’m 15 years old. I’m a pretty sociable guy, I hang out with my friends and I like to talk… a lot. I have a large family (there’s 6 of us) and together we make a bunch of noise, well…5 of us do. One of us is mostly quiet. That’s my sister Emlyn. Em is 8 years old and she has Rett syndrome. When she was really little she used to talk a bit. She said my name (she called me Cammy) for the last time when she was 18 months old and I’d give anything to hear her say it again. I love Emlyn so much.

I feel really strongly that treatments and a cure are graspable. They are just out of reach and now is the time to do whatever we can to help. I want to help. I already try to help with the charity my parents are involved with but when my mom told me about Rettland Foundation and the ‘Not Speaking’ campaign I knew I’d found the thing that was a good fit for me. I love to talk so staying silent will be tough, but not as tough as every minute or every day with no voice must be for my sister.

I’m not speaking because I want to scream. I’m not speaking because I want to be as loud as I can about Rett and the science and the trials and the possibilities of a cure. I’m not speaking so I can make a difference.

I’m not speaking for 7 days. I’m doing it for Rettland Foundation. I’m doing it for research and science and all the steps along the way. I’m doing it for my little sister.

This is my link [ click here  ]  – would you help?

 

If I could have it go any way, any way
It’d go like this
Take it back to a couple years yesterday
To our first kiss
In that moment I loved you
This isn’t how I ever saw it going down
In that moment I loved you
I wish I knew then what I know now.

 

In our family we talk a lot! When we are all together around our kitchen table there is laughter and shouting and interrupting. We talk over the top of each other sometimes in our eagerness to just communicate. I wish I could bring you to my kitchen, to the noise and the warmth and the love of our family when we are together. It’s every dream I ever dared have…in my kitchen. Me, Darren, Ryan, Grace, Cameron, a friend or two here to eat and drink and be part of our noise, the talking and debating and articulating EVERYTHING…and Emlyn, silent. Emlyn full of thoughts, silent. Emlyn with something funny…unsaid. Emlyn with a great point…a point she can’t make. I want to hear what she has to say. I long for the sound of her voice. I want to hear her silly ‘knock knock’ jokes. I want to HEAR HER. Oh God I want it so bad.

 

Knowing Emlyn, she would be the loudest in the room. She would talk and talk and talk. She would speak as much sass as her eyes express. She would have great jokes because oh my, does she ever love to laugh. And tomorrow….she would say ‘Cameron, I love you. Thank you for being the coolest big brother. Thank you for staying silent to try and give me a voice’. Then, she would say ‘Can you get me a cucumber?’

 

 

Day 1

 

 

Day 2

 

Day 3

 

 

Day 4

 

 

Day 5

 

 

day 6

 

Cam day 7

 

 

We won’t break if we let go
You and I already know
We were bound to be set free
Eventually, so here we are now
You can say anything

 

Categories: Music | Tags: , , , , | 1 Comment

Been a Long Day

 

People are like pieces of beautiful fabric.

 

Woven together skilfully with masterful attention to detail. Each pattern unique, designed with subtle flaws to enhance the finish with quirks and unexpectedness. Over the course of its life the fabric is more or less fashionable. More or less cherished. Sometimes on display,  sometimes in a cupboard. Sometimes praised, sometimes critiqued. With age and use, good fabric becomes softer. With use and age, good fabric becomes more valuable to those that love it well. I have a blanket… I’ve had it all my life. My name stitched in grass-green thread by my grandma. There aren’t many things I own of greater value. I don’t keep it on a shelf, or in a cupboard…it gets used. I took it to Italy with my family this summer, and when my heart broke last week I wrapped myself in it for comfort. This blanket’s been to hell and back. It knows my scars.

 

My blanket is threadbare. With patched rips and frayed edges. Like life, the fabric has experienced trauma. Each heartache a thread pulled. Each sadness widening the weave. Harsh words like sandpaper wearing away the strength.  Loss and grief and disappointments alter the fabric irrevocably. Absorbency changed by tears shed. Bias pulled out of shape by, well…bias. The binding un-picked, the elasticity stretched. The fiber, once so finely spun becomes matted.

 

People are like beautiful pieces of fabric.

 

CARE-SYMBOLS1

Categories: Music | Leave a comment

Give a Little Bit

 

We’re almost half-way through October and I’m feeling deeply inspired by the people in my life. I’m going to tell you about some if you’ll let me (click the links in bold PURPLE for Rett Syndrome Awareness, please)

 

The brave mother who started the #nomoremptyarms campaign on Facebook and Twitter to encourage people to take a minute and focus on the feeling of holding your child in your arms. This mother knows the joy of embracing her children, and tragically, also knows the ache of empty arms and a broken heart. Please read more here.

 

Give a little bit

Give a little bit of your love to me

Give a little bit

I’ll give a little bit of my love to you

There’s so much that we need to share

So send a smile and show you care

 

The boy who loves his sister and wants to go #roundtheworldforRett. He’s challenged anyone skilled with a football to video themselves and nominate others. The friends who’ve joined him near and far. Please check out his challenge here and if you can #roundtheworldforRett film it and share it with that hashtag.

 

The friends who organise Stollathons (check it out with this link!!), and the ones who survive flooding over and over yet still manage to give it up (what did they give? click another link). The wholehearted friends who tell the truth, bearing laughter or tears equally. The all weather, all terrain, Goodyear tyres (or tires). The ones in their Wellies bailing out water with well worn buckets.

 

The parents who share information, who share awareness in uncountable ways…all year. The parents who share love, and knowing how hard this particular month is, prop each other up. The friends and families of the parents who cast the message out like ripples on water, reaching further and further. You can’t see how far that message has gone until you feel it coming back like waves on a shore…someone new knows about Rett, BECAUSE OF YOU!! Take that in for a second….you changed the world.

 

The scientists, clinicians, researchers and therapists…..that’s a whole different blog full of awe and gratitude. Your work is passion and integrity and energy and enthusiasm and belief…all wrapped up in humility, discipline, and commitment. You give so much more than you can ever be thanked for.

 

I’ll give a little bit

I’ll give a little bit of my life for you

So give a little bit

Give a little bit of your time to me

See the man with the lonely eyes

Take his hand, you’ll be surprised

 

The girls. The girls we have now, the girls we’ve lost but won’t ever forget. The girl diagnosed in the time it’s taken me to write this post, and the ones who follow after…every 90 minutes – another one, and another one, and another one….

 

Give a little bit

Give a little bit of your love to me

I’ll give a little bit

Give a little bit of my life for you

Now’s the time that we need to share

So find yourself, we’re on our way back home

Don’t you need to feel at home?

Yeah, we gotta sing!

 

This is what I’m giving for my #WWYG challenge. It’s a very small part of What I Would Give to change the world for Emlyn and all the girls with Rett now and in the future. It’s a small part, but it’s bound to result in a ripple or two on some water somewhere.

 

https://www.justgiving.com/FundRAZOR4/

 

me profile

Categories: Cure Rett, Love | Tags: , , , , | Leave a comment

Fever to the Form

An hour ago my brother called to tell me that our father died. Not my dad, but my father. Not my home, but my origin point. The cells that make me up. The reason there’s red in my hair. The cause of a void. Without him there would never be me. Without him I always will be. I am now, illegitimately, an orphan.

Farewell Don.

Categories: Music | 2 Comments

What Would You Give?

 

 

It’s September 30th and here we are on the brink of another October. For anyone who doesn’t know, in awareness circles, October is the month designated for Rett Syndrome Awareness. That means every October, as a community of parents, family, friends and supporters we do our best to raise the public consciousness of Rett syndrome. For most parents of children diagnosed with Rett, right up until shortly before the point of diagnosis if not directly AT the point of diagnosis, Rett syndrome is a combination of words they’ve never heard before. When they tell their friends and families, those friends and family have also never heard of Rett syndrome. Sometimes, even when they tell their doctors, the doctors are largely unfamiliar with Rett syndrome. This is astonishing. Why? Because Rett syndrome occurs once in 10,000 female births. That’s something people should know about. That’s more often than Huntington’s disease but chances are those very same people who haven’t heard of Rett HAVE heard of Huntington’s. So, every year, we all work hard to change that. We share pictures and stories and facts. We change our worlds in a hope to change THE world. And every year we make a difference. Every year we get the story a bit further out there.

 
This year we want to get LOUDER. And we hope you’ll join us. In a minute I’ll tell you how, but first I want to tell you about how this idea started.

 

*warning for new readers * I write the way I think, especially when I’m excited, so you’ll have to use your imagination and a lot of patience to follow me…but please don’t lose hope…I get to a point eventually.

Earlier this year I went to Washington to attend the Rettsyndrome.org conference and when I came back to the UK feeling restless and impatient I knew I needed to do something. I mean personally DO something. Something bolder. I felt like what I was already giving was lacking a personal commitment and I was impatient with the rate at which I was raising money and the typical methods I was employing to raise it. I felt stale I think.

 
So…go forward a few weeks and somehow I find myself offering to shave my head. As in..shave all the long hair on my head…off. *read more or donate by clicking this link* For me, a change in hair style usually involves like 1 shade variation or 2 inches maximum, so this was a bit radical. Initially I wondered if I’d gone a bit too far but as the evening went on I thought ‘why not?’ It’s just hair, it will grow. Clinical trials don’t grow on my head for free.

 
You might be wondering at this point ‘why hair, why shave your head?’ That’s easy. When Emlyn was a few months old, way way before we’d ever heard of Rett, she started doing something none of our other kids had ever done, she started pulling her hair out in clumps. It was one of those things that looking back I can see was pretty atypical but at the time we just thought was an Emlyn-ism. She had her first head shave at 5 months. She started pulling it again not long after being diagnosed with Rett and has had all of her hair cut off a total of 3 times to prevent the pulling that we now know is not just an Emlyn-ism but something frequently reported in young girls with Rett. Shaving my head will be nothing compared to the pain and sadness associated with shaving Emlyn’s head, or the pain and sadness other Rett parents have felt when they’ve had to make that same decision for their daughters. No one ever expects to shave their little girls hair off to stop her from pulling it out. Put it up in ponytail’s, sure, braid it, absolutely…but shave it off…never. By shaving my head I’m honouring Emlyn, it’s as simple as that.

 
The more I considered it the more right it felt…I guess because it felt like action…it felt like getting into the Arena.

 

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”  ~ Theodore Roosevelt

 

 
Then the idea grew. My friends Colleen and Erica from The Rettland Foundation also said ‘why not?’ and suddenly the 3 of us were all in the Arena about to get radical and bold and BALD together. And it’s about then that I started to feel like a gladiator. That might sound silly, or melodramatic or outrageous but that’s how I felt. And that….well, it felt really good!!

 
ok…so fast forward to a week later…I’m driving and mentally going over a few things like – as a charity how are we going to make October interesting, what can we do at curerett.org for awareness month, how am I going to make this head shave work, how do I make it relevant, what is the story, why should people care?

 
Oh gosh – bear with me…..I should back up a second here and say that Shannon Starkey-Taylor from Rettsyndrome.org and I were already discussing how to do something different for October. My gut was saying that the last few years had taken a pretty big toll on Rett parents. It’s hard to explain how much asking friends and family to take a whole month to share, like, comment and care about all things Rett on social media can cost us as parents. By the end of the month it can feel like this huge, depressing, soul sucking, rejection inducing mess. It takes so much energy and speaking personally here, has left me feeling inadequate every October 31st for the past 4 years. I didn’t want that to be the case for 2014.

 
…anyway, like I said, I’m driving in my truck and thinking and I thought ….(after many meandering boring thoughts I won’t share because this is already terribly long and you don’t even know what the heck I’m on about yet)…..anyway…I thought ‘it’s all about giving something up, it’s about the joy of the sacrifice, the pay off from giving is a rush…but what would other people give, not everyone wants to shave their head….what would you give to make a difference’…and that my friends is the germ of the idea that was watered and fed and led to this….

 

 

twitter_shareable_Oct

 

 

People say all the time that they would give anything to sleep in; for a night out; for a trip to the spa. In the world of Rett we say we’d give anything to hear our children speak; to see them walk; to find a cure. This made us wonder, What Would You Give? What Would You really Give to make a difference? Would you give up your daily cup of coffee? your monthly trip to the nail salon? your TV addiction? your Friday nights out with the gang? your hair? your voice?

 
We are asking you to get radical, get loud and get un-ignorable. We’re asking you to give something up, and ask others to join you. So, HOW can you give?

 
Give Something UP & Raise Awareness : Give something up for a day, a week or even the whole month and be loud about it so people will ask why – then tell them about Rett and about why Giving something up is important to you.
Give Something UP & Donate: Give something up and set up a deposit to Rettsyndrome.org (US) Rettland foundation (US) or Curerett.org (UK) to cover the expense you would regularly pay for this added luxury.
Give Something UP & Get Sponsors: Give something up and ask people to support you by sponsoring your efforts. Set up a fundraising page to raise funds, then share it and watch your support grow.

 

We’re all in on it! Rettsyndrome.org, Rettland Foundation, Curerett.org and O.R.S.A. (Ontario Rett Syndrome Association) have teamed up for the cause. We would never ask you to do something we weren’t willing to do ourselves. Here are a few examples of how our organisations are giving it up for Rett.

 
Shannon Starkey-Taylor, Rettsyndrome.org’s COO, will be giving up her daily trip to Starbucks and donating the money she would have been spending back to Rett syndrome.
Kori Dryhurst Coates, Curerett.org’s Executive Director, will be giving up her vanity and shaving her head on the 31st of October. She’s busy getting sponsorship right now.
Colleen English, Erica Bessey Robertson & the whole team at Rettland Foundation are Not Speaking for Rett. They have kits to purchase if you want to join them.
Darcy Balak, O.R.S.A. executive board member, will be shaving his head in honour of this campaign.

 
There will be plenty more stories to follow and lots of inspiration to share. Please join us and share YOUR story. Use these campaign hashtags
#WWYG – this is our main campaign common tag, What Would You Give

#notspeaking – if you’re not speaking this one’s for you

#LOUD – nothing is LOUDER than silently taking a stand

#unignorable – we want to make a big difference, we want to be unignorable.

#getwhatyougive – you’ll be surprised by how much you get when you give it up

#WHYNOT – What’s stopping you? Why Not give it up and get involved.

 

on Facebook you can find us at Rettsyndrome.org Rettland Foundation Curerett.org O.R.S.A.

on Twitter you can follow @Rettsyndrome @rettland @curerett @OntarioRettSA

 
This year, instead of just raising awareness we want to ignite. We’d like you to join us – in the Arena – Daring Greatly. We think you’ll be amazed because as the song says…. You Get What You Give.

 

But when the night is falling 

and you cannot find the light
 
If you feel your dream is dying 

Hold tight 

You’ve got the music in you 

Don’t let go 

You’ve got the music in you 

One dance left 

This world is gonna pull through 

Don’t give up 

You’ve got a reason to live 

Can’t forget you only get what you give 

 

Categories: Cure Rett | Tags: , , , , , | 1 Comment

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