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

Gracious

 

Dear Mom,

Today is a day I’ve been dreading since the day you died; it’s Mothers Day on the anniversary of goodbye.

 

It’s been 7 years. 7 years of experience without you. 7 years of muddling my way through recipes that only live in my memory. I still can’t get chilli right…though I did work out the cocoa trick! It’s been 7 years of missing your voice in my ear. 7 years of stories to tell, songs to share, pictures to laugh about and arguments to get over (slowly). In fact, I’d give anything to have a fight with you today.

 

That’s 84 months…lots has happened. I’m not sure how much you know – if any – where you are but to summarise …(I can hear you laugh at that, ‘Kori, you don’t ever say a thing the short way’)…

 

*we didn’t realise it right off but when Em & I came back to Canada to be with you and say goodbye Em was starting the regression stage of Rett syndrome. She stopped speaking the day you died, we never heard her say ‘pretty’ again. It took a year to get the diagnosis, and that was a year I sure did need you. I started to type – I hope that was the hardest thing I’ll ever go through – but we both know that’s not going to be the hardest thing, so I stopped myself.

*we bought a new house, you would love it!! It’s very English. It’s got enough land around it for the kids and the dogs to have a measure of freedom – Darren has filled the barns with more JCB’s than they can hold…we’re happy here.

*Ryan & Grace have both moved out – (pausing here to apologise for the speed I flew with and the callous way I never considered for even one minute how awful that would have been for you, I left the country for heaven’s sake…I am SO sorry mom!!) – Ryan is in Scarborough, and Grace is in Sheffield…our house is very much quieter, and cleaner without them. I miss the noise, and mess.

*Cam is so tall! You wouldn’t believe it. Dad came to visit in February and we made a video of Cammy in Emlyn’s bathing suit, it was hilarious and we were all together making it, Darren, Ryan, Grace, Cam, Emmy, me & Dad…I felt you there, I hope you were.

 

7 years is 365 weeks, and little things make me think of you during every one of them…

 

When I drink my coffee black | if I do a crossword | every country song | cold beer | backgammon | looking in a mirror | back-combed hair | lighthouses | fiberoptic lamps | Hearts & Souls | Sound of Music | Alan Jackson | Paloma Piccasso | the scent of Dior’s Opium | every single elephant | my children | your mother | and countless millions of unnamed things.

 

2556 days have passed and not one has gone by when I’ve not missed you Mom. I hope you’re beautiful, and laughing, and dancing in Heaven. But I hope you get to be here sometimes too. I’ve felt you, so I’m pretty sure your around. There’ve been these odd things that give me pause…

 

*the way you took your very last breath 30 minutes before midnight, meaning you died on the 11th instead of the 12th (my wedding anniversary).

*the sound of your voice saying ‘move, move move’ in three right before the car tire blew up as I was filling it with air. If I hadn’t responded to the authority of your voice and shifted quick, well, Darren says we would be having this conversation in person.

*Chinese takeaway restaurant, the magazine I didn’t want to read, your voice in my head telling me to read it – over and over – and finding the doll you said you wanted to buy Emmy but didn’t get a chance to. I bought it.

*Walk like a Man from the radio on diagnosis day

 

2556 days where I feel your ghost graciously guiding. So I hope you’re spending 98% of your time in heaven – especially since Grampa got there, that must be so great for you – but I also hope you’re spending some of your time here or else I am really cracking up.

 

me & mom

 

‘Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night.’

I love you. Happy Mothers Day.

Categories: Love | 15 Comments

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