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/

 

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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….

 

 

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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

On Top of the World

 

Once upon a time there was a woman who feared she’d felt her last laugh. She was SO wrong. She didn’t know what she didn’t know, but now she does and oh boy, does she! Sometimes you need to see the bottom to know the top.

 

Last week I had breakfast in America. I had 11 breakfasts in America, and some lunches and dinners too. It all started like this…

 

Saturday the 21st (June) Darren drove me to Manchester Airport and dropped me off at the airport hotel. I went into the – fairly basic – room and the luxury of all that space to myself was intoxicating! I fell on the bed laughing, watched some nonsense on tv, then slept, woke up and headed off to the check in desk. All went swimmingly until the flight was cancelled for ‘mechanical problems’. 24 hours, some new friends, and another night in the hotel later I repeated the whole process – this time successfully – and a further 7 hours after that I landed in Washington DC (which we all know stands for D’Capital, right Gracie?).

 

Pure, exultant JOY. I had 22 hours with my beautiful friend Anna (was meant to be 48 but the ‘mechanical problems’ blah blahed that) and we only slept for 2 or 3 of those. We ate Peruvian in a local restaurant and tasted a little bit of every dessert on the Appleby’s menu. Walking back to the hotel we shared a moment with 2 deer on the side of the road and although our time was short it was lit up with laughter.

 

I think we all have a tank that needs filling, we tend to run it low and then it coughs and splutters and things get ugly. My tank wasn’t just low, it was inside-out, upside-down, barren, arid and rusty. Anna made the first drop, then the gush of fuel began and my soul rejoiced.

 

‘Cause I’m on top of the world, ‘ay
I’m on top of the world, ‘ay
Waiting on this for a while now
Paying my dues to the dirt
I’ve been waiting to smile, ‘ay
Been holding it in for a while, ‘ay
Take you with me if I can
Been dreaming of this since a child
I’m on top of the world.

 

The reason for my American adventure? The rettsyndrome.org family conference and science symposium. The place for hope. The place for discovery. Where the key is & the unlocking begins. Where you belong when your heart beats to a drum out of time but in harmony with countless others who know your song. Tegan and Sara put it best in Where Does The Good Go – ‘where do you go with your broken heart in tow, what do you do with the left over you, how do you know when to let go, where does the good go, where does the good go?’ The good goes to conference to get a full tank.

 

After Anna went I had the room to myself, until Eri showed up the next morning and just never left. That was bonus gift no.1 no.2 & no.3 because she is on my most loved list and makes the best roommate ever.

 

Erica, Sherry, Lauren and I went to the White House – completely epic! I was – certainly – embarrassing in my loud appreciation. There was a ‘situation’ and ‘security’ and it felt a bit like an episode of Homeland. We shopped a bit and visited local bars a bit (more) and returned in time for greeting friends arriving early. Let me tell you, there’s nothing that compares to that. The greeting friends part. The familiarity and shared sorrow, shared hope and expectation. The light of knowing eyes, that see so much deeper than any others. Much more epic than a white house.

 

The next morning I had breakfast (one of the 11) with Colleen. My authentic classmate. My WH journey companion. My cup was running over. Sometimes the highest expectations are exceedingly abundantly surpassed.

 

The conference was incredible. Others have written about what was said and who said it (I’m linking). Connections & knowledge. Discovery. Expectation. Hope. Anticipation. Effort. Empowerment. Tenacity. Resilience. Persistence. Team.

 

 

conf14-1edit
Deposits were made, over and over, throughout the days that followed. Beautiful names are sparkling in my thoughts as I type this up, each name representing a friend, each friend representing a life full of love and laughter and strength you can not imagine…unless it’s your life too.

 

‘Cause I’m on top of the world, ‘ay
I’m on top of the world, ‘ay
Waiting on this for a while now
Paying my dues to the dirt
I’ve been waiting to smile, ‘ay
Been holding it in for a while, ‘ay
Take you with me if I can
Been dreaming of this since a child
I’m on top of the world.

 

The need for refuelling? That’s a batter you just can’t over egg. The results? A great big cake full of awesome. Awesome Cake.

 

 

 

And I know it’s hard when you’re falling down
And it’s a long way up when you’ve hit the ground
Get up now, get up, get up now.

 

My Awesome Cake had icing! When the conference ended I took a train to New York to visit Jen, Paula and their families. How much happy can one person hold? I thought I was full but the tank took in some more. These are my people. They’ve made me their family.

 

NYC14-01edit

 

 

 

We watched the Suffern fireworks. We took the ferry from New Jersey to Manhattan. We took a bus, a taxi, the subway and another ferry to Staten Island…falling in love with the beautiful Lady of Liberty. We walked past Pace University and over the Brooklyn Bridge (and back again!). We laughed and laughed and laughed. We shopped and waited in hour long lines to buy Coach bags. We stood on a pier and admired the most beautiful city in the world (don’t argue, it’s subjective). We sang and took selfies and my overflowing cup Got Up.

 

And I know it’s hard when you’re falling down
And it’s a long way up when you’ve hit the ground
Get up now, get up, get up now.

 

I left in torrential rain…even the sky was overflowing for me. I am renewed.

 

‘Cause I’m on top of the world, ‘ay
I’m on top of the world, ‘ay
Waiting on this for a while now
Paying my dues to the dirt
I’ve been waiting to smile, ‘ay
Been holding it in for a while, ‘ay
Take you with me if I can
Been dreaming of this since a child
I’m on top of the world.

 

 

 

Categories: Cure Rett, Love, Music | 9 Comments

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