Lyric-less

A blog about lyricality, lyric-less. That’s a new one. It’s what you do though when down is up and up is down and nothing feels the way you expected it to.

“We are the music-makers,
And we are the dreamers of dreams,
Wandering by lone sea-breakers,
And sitting by desolate streams.
World-losers and world-forsakers,
Upon whom the pale moon gleams;
Yet we are the movers and shakers,
Of the world forever, it seems.”
― Arthur O’Shaughnessy, Poems of Arthur O’Shaughnessy

for my tribe; music-makers, dreamers of dreamers.

Categories: Music | Leave a comment

Fragile

I’ve discovered a shiny new treasure. His name is Patrick Rothfuss. Looking for something to read over Christmas, and wanting that ‘something’ to be as unconnected to my reality as possible, I came across a series of books called The Kingkiller Chronicals. From the opening – “It was night again. The Waystone Inn lay in silence, and it was a silence of three parts.” I was hooked. Patrick Rothfuss writes lyrically. He is music, and hence, perfect for me.

I made my way through The Name of the Wind (book one) and before I was finished (2 days) I downloaded the second (The Wise Man’s Fear) as well as the third (The Slow Regard of Silent Things…what a title!!). As I started The Wise Man’s Fear I was delighted to discover 1375 iBook pages lay before me. Big fat books make me ridiculously happy, knowing there’s time to linger with the characters, I can settle in for a proper visit. At the end of those delicious 1375 pages, I went straight to The Slow Regard of Silent Things, immediately checking out the number of pages I’d be merrily journeying with my new friends…and was horrified to find 147. Not 1477, only 147! “Well”, – I thought –  “there must be some mistake”. Surely I’d downloaded it wrong. I cursed my iPad. Then I read the first sentence in the Author’s Foreword ‘You might not want to buy this book.’ I was intrigued. I kept reading for all 147 pages. Past a sentence and back again to savour it, sometimes 4 or 5 times. I read “He was emberant, Incarnadine. He was bright with better bright beneath, like copper-gilded gold.” (I read that at least 10 times – highlighted, tweeted and saved it). And the almost final lines “Auri spun about three times. She smelled the air. She grinned. All around her everything was proper true. She knew exactly where she was. She was exactly where she ought to be.” 147 iBook pages of perspective-changing wonder.

Patrick Rothfuss says, in an Authors Endnote “i cannot help but wonder how many of us walk through our lives, day after day, feeling slightly broken and alone, surrounded all the time by others who feel exactly the same way…….This story is for all the slightly broken people out there. I am one of you. You are not alone. You are all beautiful to me.” I put my head in my hands and cried. They were not sad tears.

If blood will flow when flesh and steel are one
Drying in the colour of the evening sun
Tomorrow’s rain will wash the stains away
But something in our minds will always stay
Perhaps this final act was meant
To clinch a lifetime’s argument
That nothing comes from violence and nothing ever could
For all those born beneath an angry star
Lest we forget how fragile we are

A little bit broken. Fragile. Full of wonder. Copper-gilded Gold. Bright with better bright beneath. Bad-ass, brave, bold and broken.

“The you who you are tonight is the same you I was in love with yesterday, the same you I’ll be in love with tomorrow. I love that you’re fragile and tough, quiet and kick-ass.”
― Gayle Forman, If I Stay

Beautiful.

On and on the rain will fall
Like tears from a star like tears from a star
On and on the rain will say
How fragile we are how fragile we are

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

Guiding Light

Yesterday was the 11th of December. That makes it 2 years since my Grampa died and I can hardly believe that’s true. The sharpness of missing him is duller now, but it still stabs me. I cried a lot yesterday (i cry a lot a lot, I’m okay with tears) and in the evening I spoke to my Gram which helped so much, but then that too made me cry for missing her. Living in England means I’m always missing people. People who are 1000’s of miles and 1000’s of £’s away. Family & friends who’s lives I miss so much of. Then there’re the people I won’t see again in this life, the ones no airplane or lottery win can take me to. The missing is a physical ache, the longing for one more conversation, one more laugh. It’s hardest during the preparation for Christmas (I’m sure this is something everyone deals with to some degree or another).

For me, as a kid…Christmas was just magical and wonderful. I had my family and couldn’t have asked for more. My Grandparents, my Mom, and her 2 sisters…beautiful and fun Auntie Susan (who one year hand made me dozens of Barbie outfits, she’s only 15 years older than me and I thought she was the most perfect person on the planet), my honest and protective Auntie Cheryl (who gave me a sense of strength and safety in every situation, who baked for, cooked for and nurtured everyone she could get her hands on). I had my Uncles and my little cousins and we would be together on many Christmas mornings. As I got older we weren’t always ALL together, but every year I had my mom and my Grandparents. Mom, Gram and I would (every year without fail) watch The Sound of Music and sing along to each song. Our family history is bright with traditions and memories of repeating them are precious to me.

Then I had my own children and that made Christmas even more full of wonder. I delighted myself with their joy. I love the anticipation and pleasure of giving gifts, so that too was made even better as the years went on and I could find that magical special gift that would light my children’s faces. They joined in our old family traditions and we made some new ones of our own. Christmas time was all about being together…the gifts were only the cherry on top of that – already awesome – ice cream sundae of wonderful. If I did cry at Christmas, they were almost always only tears of happiness.

The year my mom died that changed for me, and the next year we knew Emlyn had Rett. The year after that I realised that when I watched The Sound of Music it was the most bittersweet feeling. I sang the songs (it’s impossible not to) but tears ran down my smiling face as I did. Each year since I’ve found that the joy is rimmed with sadness. Like the emotional equivalent of a Margarita – salt on the edges. The happiness of now makes me long for then. The nostalgia chokes me and yet also soothes me. I miss home, I miss home as it was and will never be again. I miss childhood and the people who filled it.

Yesterday a friend lost a friend. Today my tears are also for her.

There’s no way to avoid losing the ones we love, there’s no life worth living that escapes loss. To love is to risk. I don’t think there’s any way to protect your heart that doesn’t involve hardening it and bending it out of shape. As each year goes by, and the tears fall when I hear O Holy Night, or Away in a Manger…I thank God that my life has had – and does have – so much home in it.

When I need to get home you’re my guiding light, you’re my guiding light.

Categories: Music | 1 Comment

Higher Love

 

I haven’t done 7 Songs for the Weekend in a long time. This isn’t 7 songs, but it’s 2 in 1. This is James Vincent McMorrow live at the Paradiso performing Higher Love and If I had a Boat. I’m doing 2 songs because together they completely describe my feelings this weekend. On Friday night I shaved my head for Emlyn (link here if you want to read why I did it). I wasn’t sure how I would feel after – I had no frame of reference. Yesterday I cried on and off through the day. I don’t even know why I was crying. I was simply overwhelmed. Partly because of the beautiful messages of support from people I respect so much. Partly from the very raw feelings of vulnerability. I forced myself to go to our local grocery store, with no hat and no make-up on…I reckoned if I could get through that I would be okay…and I did get through it (though my head was cold!!). My heart was bursting at the seams with love for Emmy, and with profound admiration for my tiny warrior who braves 1000 times more vulnerability than I would have felt if I’d gone to that grocery store with no hair, no make-up and naked as a jaybird.

 

This blog is about life, love and lyricality. The lyricality that takes over when the heart is overwhelmed and can’t find an expressive outlet…except through music. This music today…it’s everything my heart can’t find a way to say.

 

Higher Love

 

Think about it, there must be higher love
Down in the heart and in the stars above,
Without it, life is wasted time.
Look inside your heart, I’ll look inside mine

Things look so bad everywhere
In this whole world, what’s fair?
We walk blind and we try to see
Falling behind in what could be.

Bring me a higher love
Bring me a higher love,
Bring me a higher love
Where’s this higher love, I’ve been thinking of?

Worlds are turning and we’re just hanging on
Facing our fear, standing out there alone
Oh a yearning, and it’s real for me
There must be someone who’s feeling for me
Things look so bad everywhere

In this whole world, what’s fair?
We walk blind and we try to see
Falling behind in what could be

Bring me a higher love
Bring me a higher love,
Bring me a higher love
Where’s this higher love, I’ve been thinking of?

I will wait for it, I’m not too late for it
Until then, I’ll sing my song
To cheer the night along

I could light the night up with my soul on fire
I could make the sun shine from pure desire
Let me feel the love come over me
Let me feel how strong it can be

Bring me a higher love
Bring me a higher love, oh
Bring me a higher love
I could rise above for this higher love.

 

If I had a Boat

 

Golden, golden, golden river run
To the East then drop beneath the sun
And as the moon lies low and overhead
We’re lost

Burn slow, burning up the back wall
Long roads, where the city meets the sky
Most days, most days stay the sole same
Please stay, for this fear it will not die

If I had a boat, I would sail to you
Hold you in my arms, ask you to be true
Once I had a dream, it died long before
Now I’m pointed north, hoping for the shore

Down low, down amongst the thorn rows
Weeds grow, through the lilies and the vine
Birds play, try to find their own way
Soft clay, on your feet and under mine

If I had a boat, I would sail to you
Hold you in my arms, ask you to be true
Once I had a dream, it died long before
Now I’m pointed north, hoping for the shore

Splitting at the seams
Heaving at the brace
Sheets all billowing
Breaking of the day
Sea is not my friend
And everyone conspires
Still I choose to swim
Slip beneath the tide

Once I had a dream
Once I had a hope
That was yesterday
Not so long ago
This is not the end
This is just the world
Such a foolish thing
Such an honest girl

If I had a boat, I would sail to you
Hold you in my arms, ask you to be true
Once I had a dream, it died long before
Now I’m pointed north, hoping for the shore

 

1 day after

 

Some dreams die, but others are born. Some hopes burn brighter than any dark and fear-filled night. I’m pointing north, and I believe the shore is closer with every passing stroke of these hope filled, love filled, commitment filled oars.

 

If you would like to donate, which I very much hope you will, you can do so by clicking on the link below.

 

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

 

kori x

Categories: 7 songs for the weekend, Cure Rett, Love, Music | Tags: , , , | Leave a comment

Geronimo!

 

I don’t think anyone expects to shave a 5 month old baby’s head. It’s not on the list of ‘new mom’ tasks. Feed, wash, burp, change diapers…shave head. But I took Emmy to my hairdresser in April 2006 and quietly cried as she shaved what was left of the glossy black hair Em was born with. We had absolutely no idea why our sweet girl was pulling her hair out, but several times every day day we would find her baby fists full of hair. Her tiny head, covered in patches of stubble, and wisps of dark hair. She looked like a lunatic monk. We read that there are certain cultures where babies are routinely shaved to cultivate a thicker, fuller head of hair so we said ‘okay, why not?’

 

She sure did look a funny kind of cute with her new ‘do’ and it grew back as blond as her Norwegian cousins. We didn’t forget the feelings we’d had, but we moved on. Her hair came back and we didn’t really think about the shave except to tell it as a story of what a magically unusual child she was.

 

Then, 2 years later she was diagnosed with Rett, and within a month she started to pull her hair out again. This time, each handful felt like a knife in my heart. I begged her to stop. I held her hands and pleaded with her to stop. But once again, her fists were full of shiny stands of femininity. This time we cut it short enough that her fingers couldn’t complete the twine-ing action she needed to get a good grip. Once again it grew back, but a year later she pulled it out again. Girls with Rett do this sometimes, pull their hair out. I don’t know why exactly, but I can imagine.

 

Rett syndrome is a thief. A bold, brazen, bullying thief. It doesn’t steal under cover of night, it steals while looking you in the face. It mocks you as it takes the most precious things. It steals these things from your child. If someone came to your little girl in the playground and stole her toys, you’d be angry. If they stole while looking right at you, taking toys, and shoes, and coats and food…you would be enraged. Rett takes your child’s laughter. Rett takes their words. It takes their achievements, mobility, focus, security and health. It takes their safety. It takes their future. And you, well….you’re powerless to stop it. You are literally powerless to do one single damn thing. It’s like being tied up in that playground as your child screams and cries…it’s worse.

 

Then someone tells you that there might be a way to catch that thief. And you would do anything.

 

Treatments for Rett are a very real possibility. They aren’t some hope we whisper to help us sleep, they are real. Potential treatments are in clinical trials, now. And I would do anything to move that along. To (as we say at Rettsyndrome.org & curerett.org) accelerate research & empower families. Anything.

 

Emlyn lost so many things, and only the smallest of those is her hair. I can’t lose the things she lost. I would take each of those loses and make them my own if it meant she could have them back. I would swap places with her in a heartbeat, giving her my future and my potential. But I can’t. As small and insignificant a thing as this is, I can give up my hair. I can take something from myself and by doing so, I can try to give something to her. It’s not just hair. Rett stole her confidence. You can call it vanity but my confidence will be diminished with no hair. I will feel vulnerable. I will feel naked. When I take Emmy out in her wheelchair, people stare at her. I might get a taste of what that feels like. It will be nothing like what she lives with, I’m not even ruffling the surface of the water she swims in…but it’s something.

 

Tomorrow night at 9pm I’ll close my eyes & I’ll picture her face. I’ll make an emotional leap & think ‘okay, why not?’, and when the razor starts my heart will shout ‘GERONIMO!’ and I’ll hope she feels my love.

 

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

 

 

Categories: Cure Rett, Love | Tags: , , , | 5 Comments

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