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

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 | 10 Comments

Silver Lining

 

I heard this song on Thursday. I’ve played it over and over since. My skin prickles when a song has this effect – like each lyric’s been highjacked from the insides. I won’t over egg the batter…listen for yourself – if the song fits, wear it.

 

 

I don’t want to wait anymore I’m tired of looking for answers
Take me some place where there’s music and there’s laughter

 

I don’t know if I’m scared of dying but I’m scared of living too fast, too slow
Regret, remorse, hold on, oh no I’ve got to go

 

There’s no starting over, no new beginnings, time races on
And you’ve just gotta keep on keeping on

 

Gotta keep on going, looking straight out on the road
Can’t worry ’bout what’s behind you or what’s coming for you further up the road

 

I try not to hold on to what is gone, I try to do right…what is wrong?
I try to keep on keeping on
Yeah I just keep on keeping on

 

I hear a voice calling
Calling out for me
These shackles I’ve made in an attempt to be free
Be it for reason, be it for love
I won’t take the easy road

 

I’ve woken up in a hotel room, my worries as big as the moon
Having no idea who or what or where I am

 

Something good comes with the bad
A song’s never just sad

 

 

There’s hope, there’s a silver lining

Show me my silver lining

Show me my silver lining

 

I hear a voice calling
Calling out for me
These shackles I’ve made in an attempt to be free
Be it for reason, be it for love
I won’t take the easy road

 

I won’t take the easy road
The easy road, the easy road

 

Show me my silver lining, I try to keep on keeping on
Show me my silver lining, I try to keep on keeping on

 

keep on, keeping on  – the road less easy has better scenery  xo

 

Categories: Music | Tags: , , | Leave a comment

A life that’s good

 

Here we are again, it’s the 23rd of May. In our house that means it’s D-day. D for diagnosis. Count them up and you have six. It’s shaky hands that type those words. Hands linked to a heart doing it’s best to be at ease, but still, honestly, struggling a little not to find the passage of time remarkable. Wanting to wake up on the 24th realising the 23rd passed without note. This isn’t the year for that.

Rett is just unavoidably big. My friend Collen wrote earlier today in her blog

I want to live there, where Rett Syndrome is a little tiny thing, floating in a huge sea, not creating any waves or inconveniences. Yet each morning, I find myself inland, tripping over it  in the family room. You can’t get around it or forget that it’s there. You have to plan for it and take great measure to make sure that it doesn’t get damaged by carelessness.

…that says it better than I ever could. Each morning I find myself tripping over it, and on May 23rd I usually stub my toe.

On this day I have a habit of looking at where we were, where we are, and where we’re going.

 

May 23rd 2008 – ‘where we were’ is simple. We were in despair. We were in an uncomfortable office with a geneticist. We were in confusion. We were in agony. We were in fear. We were in shock. We were in Scarborough North Yorkshire. Later that day we were in each others arms. We were in silence. We were in Emlyns eyes.

 

May 23rd 2014 – ‘where we are’ is pretty ok. We are blessed. We’ve learnt how to be in the moment. We’ve been down dark and difficult roads and found our inner gangster. We know how to hustle when we need to act fast, and how to slow down when there’s time to appreciate the quiet. Emlyn has been doing ok – up until this week where she’s struggled a bit. The changing nature of Rett means you shouldn’t ever get too comfortable, or uncomfortable, where you are

 

 

May 23rd 2015, 2016, 2017…..’where we’re going’ – not so easy. We just don’t know and that’s a little exciting, and a lot scary. We hope to see further developments in research and treatments for Rett. We are looking forward to working with Emlyns Tobii eye gaze computer, giving her another way of communicating with us. We pray Emlyn stays with us for the full journey, but we know that’s not a certainty.

 

So we live in the day we’re in. We do our best. We know we’re blessed and we try to let go of all the rest.

 

Sittin’ here tonight,
By the fire light,
it reminds me I already have more than I should.

I don’t need fame, no one to know my name,
at the end of the day,
Lord I pray, I have a life that’s good.

 

Two arms around me, heaven to ground me,
and a family that always calls me home,

Four wheels to get there, enough love to share
and a sweet sweet song

At the end of the day,
Lord I pray,
I have a life that’s good.

 

Sometimes I’m hard on me,
When dreams don’t come easy,
I wanna look back and say,
I did all that I could,

At the end of the day, Lord I pray,
I have a life that’s good.

 

Two arms around me, heaven to ground me,
and a family that always calls me home,

Four wheels to get there, enough love to share
and a sweet sweet sweet song

At the end of the day, Lord I pray
I have a life that’s good

 

Emlyn 2014

 

 

Categories: Cure Rett, Love, Music | Tags: , , , , | 4 Comments

Just be

 

What makes a love song? Is it the one that reminds you of ‘the first time ever you saw his face’, in the frantic ‘getting to know you’ stage? When ‘every little thing he does is magic’? Is it the ‘you’re so perfect I want to take a bubble bath in your eyes’ song? {ok, so that’s not a real song…but you get the idea}

 
Is it a song that sings about newness and mystery and ‘falling’ in love? I love those songs….but that’s not where you’ll find my song. This is my love song and I’m sending it out to my husband for our wedding anniversary. One of the many reasons I love him – he will love this song.

 
This is not your typical love song. But I do think it’s honest. I think the lyrics should be read with a half smile, a sense of humour and tissue.

 
Let’s get old together
Let’s be unhappy forever
Cause there’s no one in this world
That I’d rather be unhappy with
Let’s be exposed and unprotected
Let’s see one another when we’re weak
Let’s go our separate ways in the night
like two moths
But know that you’re flying home to me.

 

 

Marriage after grief is like a jigsaw puzzle. There’s all these pieces and you don’t know exactly where they fit but you know that if you can just find the energy to sort them out – well, you know you’ll have a decent shot at making something whole. That’s been my experience anyway. You have to sit at the table for a while and flip things over, you need to really look and decide where each piece belongs…then you get active, you start trying things this way and that way and the tiny thrill when you make a connection…that’s what it’s all about.

 
I love that I can be unhappy with Darren. Not unhappy with him…but unhappy in his company. I love the way he accepts it isn’t his job to fix me, that unhappy isn’t scary, permanent or a judgement call on our life together. I love that I’m trusted to navigate the map of my own emotions.

 
I love that he never exploits my weakness. Never judges my pain or tells me to get over it. I love that he knows my heart but doesn’t lay claim to it, that he recognises – for it to be his it must also be mine.

 
More marriages might survive if the partners realized that sometimes the better comes after the worse. ~Doug Larson

 

Let’s let go together
Let us unfold one another
And watch all the little things that
once drew me to you
Eventually get on my nerves

 
There’s nothing like this – knowing you’ve been to the worst places inside yourself and that you’ve had a witness to the journey. That someone has seen your rage, fury, guilt, self pity, fear, shame, despair and STILL – they love you. Except maybe this…seeing their wasteland and still loving them.

 
The triumph of commitment and partnership is in the little things. It’s letting those little things stay little things. I know for a fact that I’m seriously irritating on a wide variety of issues. I am a woman of extremes – cleanliness or utter slobbery – feast or famine – incessant chatter or silence. There are rarely half measures in my habits. Endearing in a girlfriend, infuriating in a wife. The triumph is this – liberty. Freedom to be extreme and irritating and infuriating because the Me-ness of me is whats loved. That makes me feel balanced and less extreme. Big win. No other person has ever given me that gift, it’s that rare.

 
I wear you out with frustration
and heartache and anger
But we wait for the wave just to wash it away

 
Chains do not hold a marriage together. It is threads, hundreds of tiny threads which sew people together through the years. ~Simone Signoret

 

I never know what to get you Darren, you’re not so easy to buy for. On our anniversary this is what I have to offer.

 
You will always be my favourite person…come what may. You will always be the arms I’m safest in. You will always be the strongest, most authentic and genuine man I’ve ever met. You will always be the one I weathered an apocalypse with. You are my centre. You are my undoing. You are my love song.

 

Don’t say nothing
Just sit next to me
Don’t say nothing
just be, just be
Just don’t say nothing
Just sit next to me,
say nothing
Just be, just be, just be.

 

wedding carriage

 

 

 

 

 

Categories: Love | 3 Comments

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