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

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10 thoughts on “On Top of the World

  1. Awesome cake with icing, extra eggy, I LOVE THIS, lick the bowl and the scrapper and the pan it was baked in xx

    • Awesome cake has sprinkles too, and sparklers and other awesome additional no-added-cost extras. AND it has no calories!! xx

  2. As ever, feel like I’m there with you !

  3. love. love. love. love. infinity love!

  4. Anonymous

    LOVE THIS…..and YOU! XOXO

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