Music

Sweet Disposition

Posted on March 19, 2013 by koco

 

Sweet disposition

 

sweet  [swēt]

 

Adjective

having the pleasant taste characteristic of sugar or honey; not salty, sour, or bitter.

 

Noun

used as an affectionate form of address to a person one is very fond of.

 

Synonyms

nice – lovely – pleasant

 

 

dis·po·si·tion [dis-puh-zish-uhn] 

 

Noun

the predominant or prevailing tendency of one’s spirits; natural mental and emotional outlook or mood; characteristic attitude: a girl with a pleasant disposition.

 

 

My nickname for Emlyn is Sweetie-my-heart. It’s the perfect nickname for her. She IS sweet. She IS my heart. And she most certainly does have a Sweet Disposition.

 

It’s something I hear quite regularly from parents of girls with Rett Syndrome – “She has the sweetest spirit”, “She has such a sweet countenance”, “She is just so sweet-natured”.  I also hear “She’s a flirt” and “She’s a terror” and “She certainly knows how to get what she wants” ….but ‘sweetness’ crops up again and again.

 

That really amazes me given the struggles I know these girls face.

 

If something stopped me from speaking, using my hands purposefully, moving with ease and making hundreds of daily independent choices I hardly think ‘sweet’ would be an accurate reflection of my character. Frustrated, enraged, terrified maybe – but sweet? I doubt it.

 

Emlyn just came along – in her eccentric way – and changed the meaning of sweet. She’s re-defined many words for me. Unique. Typical. Special. Brave. Strong. She tore up the dictionary and started from scratch. Actually – she did, once, literally tear up the dictionary.

 

 

Emlyn has especially changed my perception of what beauty looks like. Beauty from within. Sweetness. The radiance that transcends physical attributes. She’s radically altered the way I think, feel and experience life. The things I ‘d historically overlooked – until she shook me up and set me on a better path.

 

 

 

A moment, a love

A dream, a laugh

A kiss, a cry

 

 

A moment – like the one I get every night when I creep into her room and check that ‘one last time’ before I go to bed. When she half smiles in her sleep and it feels like she’s saying ‘that’s my mom, all is safe, all is sound, I am loved’ before she nestles in and really settles for the night.

 

A love – like the explosive BOOM of my heart when I see her coming down the hallway at school and her face is lit up with delight … because she sees me!

 

A dream – like the recurring one in which she says ‘I love you mommy’

 

A laugh – like the contagious giggle that always follows ‘I’ve got a lover-ly bunch of coconuts’ or anything else I sing.

 

A kiss – like in the morning, as I drop her off for school, when I pick her up, when I ask for one, when I’ve soothed a bad breathing episode, after a seizure, if I’m sad, when I cry, when we dance. Hands on either side of my face, looking deeply into my eyes she brings her sweet face close, leans in and shows me love…huge heart squishing love.

 

A cry – like when her lip wobbles and her face comes undone. When she is trying so hard to be brave but sad wins. When she is scared because she lost her balance and knows the pain that could follow. When she can’t stop her hands from disobeying her thoughts. When she feels a seizure closing in on her. When she can’t breath. When she wants to say something but the words are trapped in her mouth.

 

 

 

Stay there

I’ll be comin’ over

 

 

My daughter brings out the warrior in me. She took a lifetime of skills and distilled them into a fire of pure determination. I don’t know what I was meant to be when I grew up, I don’t know what I would have been without her – frankly I don’t care. What I am now is all that matters. Everything I’ve ever done, or known or learnt the hard way is a tool fashioned for this purpose. To give her the best Today. The best Tomorrow I can manage and the best Future possibilities. In that order.

 

 

 

We won’t stop til it’s over

Won’t stop to surrender

 

 

Emlyn’s inspired me to write this blog. She’s inspired me to learn sign language. She’s got me out of myself. She’s motivated me to co-found 2 charities. She’s made me work up the courage to write speeches, research teaching methods, fundraise, knock on doors and lay my heart bare. She’s taught me to look beneath the surface, and then look beneath again for another 4 or 5 layers. She’s taught me when to compromise and when not to. She’s taught me the value of silence. And the value of a voice.

 

If music is the voice of my heart, she taught me a new tune.

 

A tune about a brave little pirate princess, with the heart of a giant and the sweetest disposition.

 

 

A moment, a love

A dream, a laugh

A kiss, a cry

A moment, a love

A dream, a laugh

A kiss, a cry

 

 

Won’t stop to surrender

 

Categories: Cure Rett, Love, Music | Tags: , , , , | 14 Comments

Don’t You Worry Child

Posted on March 5, 2013 by koco

 

There was a time

I used to look into my father’s eyes.

In a happy home

I was a king, I had a gold throne.

 

Last night I dreamt of my Grampa. He was young in the dream and so was I. He looked handsome and healthy, dignified yet sparkling with mischief. I don’t remember what he said or what we did in the dream, but when I woke up I cried. The need for his wisdom and calm steady familiarity made me ache with sadness. I wanted to remember his words, to have one last nugget of ‘Grandpa-isms’ to carry me through a life now devoid of his physical presence. But I couldn’t remember.

 

 

Those days are gone,

Now the memory’s on the wall.

I hear the songs

From the places where I was born.

 

 

So I decided to think back and recall all the things he’d said, things of remarkable influence anyway. There were funny things, profound things, ordinary things. There were things that became family jokes – getting better with each retelling. There were sad things, happy things, irritating things. A lifetime of words to treasure.

 

But none as powerful as these “Kori, God has big plans for you.”

 

He said those words so many times they’re tattooed on the invisible skin that makes up my character. He said them and he lived them and he meant them.

 

He said them to me when I was so small I can barely remember. He said them after the death of my sister when I felt like our family was made of glass. When I wanted to know – why her and not me?. He said them when the first boy I loved made me cry and I asked him how I would know if love was real. He said them when I moved away from home – leaving Canada for England – and I was suddenly afraid I’d made a terrible mistake. He said them to me when I became a mother and gave him his first grandson. He said them when Darren and I left England to move back to Canada. He took me for a drive around Kelowna (where they my grandparents lived and I’d grown up), just the two of us. He drove me to every place of historic importance to our family. We didn’t look at the time, we just drove and drove. I cried and told him how scared I was of all the changes in my future – so he showed me my history. At the end of this perfect drive,  we went to the lake. He reminded me of all the times I’d been afraid and all the times God had brought me through.

 

Okanagan

 

Upon the hill across the blue lake,

That’s where I had my first heartbreak.

I still remember how it all changed.

My father said…

 

“Don’t you worry, don’t you worry, child.

See heaven’s got a plan for you.

Don’t you worry, don’t you worry now.”

 

 

Darren and I lived in Canada for just short of 2 years. We lived close to my grandparents and saw them almost every week. We spent weekends at their house and vise versa. I purposefully soaked up every minute with them – aware that I was so fortunate to have this beautiful adult relationship with the people I loved most. Emlyn was born while we lived in Canada and after Darren and I, Grampa was the first person to hold her in the hospital…she was minutes old. I could see him looking into her tiny face and I knew in his heart he was saying “God has big plans for you!”

 

 

Don't you worry child

 

There was a time

I met a girl of a different kind.

 

 

By the time Emlyn was diagnosed with Rett Syndrome we were living in England again. When I told my grandparents about the diagnosis we cried together over the phone and they prayed for me. They prayed that God would give me strength. They prayed that God would guide me in the best ways to care for Emlyn. They prayed for many many things. Then Grampa said “God has big plans for you both”.

 

 

“Don’t you worry, don’t you worry, child.

See heaven’s got a plan for you.

Don’t you worry, don’t you worry now.”

 

Grampa is gone but his legacy endures. His words and his faith, his love and direction.  God had BIG plans for him and he more than lived up to them.

 

 

See heaven’s got a plan for you

See heaven’s got a plan for you

See heaven’s got a plan for you

 

“Don’t you worry, don’t you worry, child.

See heaven’s got a plan for you.

Don’t you worry, don’t you worry now.”

 
Categories: Love, Music | 21 Comments

Say What You Need To Say

Posted on February 3, 2013 by koco

 

I’ve been a bad blogger. I’ve let all the words build up in my head with no outlet for far too long. This post might be a bit rusty and overly verbose but given the topic I think that’ll be ok.

 

It’s not that I haven’t wanted to blog, it’s not that I’ve had nothing to say – I’ve just been really busy listening instead. My new job’s filling up a lot of my time…and I love it. I love my job!! How many people get to say that? For anyone who doesn’t know what I do, here’s a brief description.

 

I’m the Director of Family Support and Advocacy for a very special Charity called Cure Rett. Cure Rett was created to address 2 important needs in the Rett Syndrome community. We provide care for families dealing with a Rett Syndrome diagnosis. We also raise funds to support researchers in their efforts to develop treatments and find a cure for Rett Syndrome. This is a pretty incredible task so we have an awesome team working super hard to makes those goals a reality.  Some of the team have daughters with Rett – like me – and some of the team do it because they know and love girls with Rett. Everyone does it because they really believe they can make a difference. It makes for a pretty inspiring work environment.

 

So what does the Director of Family Support and Advocacy do? Why does there even need to be a Director of  *insert long-winded title here*? Well, mainly it’s about having someone to listen. It’s about having someone who’s been through a similar situation and can relate compassionately to what you’re going through. It’s about having someone on your side. It’s about being able to say what you need to say.

 

 

Say what you need to say

Say what you need to say 

Say what you need to say 

Say what you need to say

 

 

Why is it important to have all that? Because sometimes the words build up – the pain and frustration, the sorrow and fear, the anxiety, the guilt – the words piling on top of each other like bricks as they go unsaid for days, weeks, months…years. Clogging up in your throat until you’re choking on thousands of unspoken words.

 

Walking like a one man army

Fighting with the shadows in your head

Living out the same old moment

Knowing you’d be better off instead,

If you could only . . .

 

Say what you need to say 

Say what you need to say 

Say what you need to say 

Say what you need to say 

 

 

When you speak a fear – it losses strength. When you speak of pain – you share it’s burden. When you let the words fly out of your mouth – they stop choking you. This is especially poignant for parents of children that can’t speak. Having a child who struggles to communicate through unconventional means, who has no spoken words – like Emlyn – makes me so aware of the power of speech. It makes me appreciate everything I say, and the fact that I have this ability makes me determined to use it for good.

 

So when I have the opportunity to speak to the parents of a child with Rett Syndrome – I value each one of their words. I listen, without judgement, to their fears. I listen to what they can’t say as well, hoping that as time goes by, and they gain confidence they’ll be able to say what they need to say.

 

Say what you need to say 

Say what you need to say

Say what you need to say

Say what you need to say

 

Eleanor Roosevelt said ‘You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’

 

Curing Rett Syndrome is as much about the journey as it is about the destination. Even if the hope we have for a cure were to become a reality tomorrow, I would consider the journey only partly over. The struggle would go on. The rehabilitation would be extensive. The steps forward – though filled with joy – would be arduous. The cure wouldn’t be the end,  but it would be a brighter beginning to the second half of the road trip.

 

If this is a journey, it’s vital to pace yourself. It’s vital to stay healthy physically and emotionally as you go the distance. Saying what you need to say – when you need to say it – is a big part of staying healthy.

 

 

Have no fear for giving in

Have no fear for giving over

You know that in the end

Its better to say too much

Then never say what you need to say again

 

 

It’s not always the easiest thing in the world to pick up a phone, or write an email to someone you don’t know. It’s scary to show your vulnerabilities to a stranger – but once you’ve taken that step the stranger can become a friend. I’ve seen it happen time and time and time again. I’ve been on either side of the coin. I’ve been the one with a mouth full of words, a pounding heart and a phone clutched in my fist as I worked up the courage to make that call. I’ve poured out my heart to a stranger, worried about being judged and worried that if I started to cry I wouldn’t be able to stop. I’ve mentioned this before but it bears repeating – that stranger is now my good friend Paige, and phoning her was one of the best decisions I’ve ever made. I’ve also been on the other side of the phone, listening to the tentative first words of a broken-hearted mother. I’ve watched that mother grow in confidence as she learns, is heard, and has a chance to say what she needs to say.

 

 

Even if your hands are shaking

And your faith is broken

Even as the eyes are closing

Do it with a heart wide open

 

 

Say what you need to say 

Say what you need to say

Say what you need to say

Say what you need to say

 

Categories: Cure Rett, Love, Music | Tags: , , , , , , | 7 Comments

One Life

Posted on December 5, 2012 by koco

 

My Mom was a smart lady. She had some great sayings and a tremendous amount of wisdom. That doesn’t mean she always lived it – she was the master of  ‘do as I say, not as I do’.

 

Regardless, plenty of her sayings had a profound effect on me. These sayings shaped who I am and how I perceive the world around me. That’s one small part of her enduring legacy. In fact, the women of my family all influenced me positively – I had great role models.

 

My beautiful Grandmother – Ruby – taught her daughters, who taught their daughters, who are teaching their daughters (and some sons…the first boys in 3 generations) about living – and living right.

 

One of Mom’s sayings was “you can be bitter, or you can be better – the choice is yours”. She undoubtedly heard this from someone else as it’s not an uncommon saying….either that or she read it on the back of a coffee tin.

 

Bitter or Better.  She had me apply that to situation after situation. A friend let you down? Bitter or Better? Bitter would be to wall off part of your heart and decide to trust less – Better would be to stop and consider why that friend let you down; realize that people are fallible and will often let you down with no ill intent; try to avoid letting others down but accept that sometimes you will and not be too hard on yourself when that happens. Bitter is to judge, Better is to learn.

 

Bitter or Better?

 

Time after time I’ve looked at the choice and rejected Bitter. Sometimes that choice has been easy and I’ve come to it quickly. Other times that choice has been hard and I’ve had to re-make it everyday for weeks until it wasn’t a choice anymore. Thoughts become feelings and feelings become actions. Actions define us – to ourselves and others. So which do you choose? Bitter or Better?

 

If I knew yesterday 

What I know today

Where would I be tomorrow?

 

I won’t let my soul slide away

I’ll do whatever it takes

Coz this time’s only borrowed

 

I got One life, One life, One life

And I’m gonna live it

I got One life, One life, One life

And I’m gonna live it – Right

 

Joy is tarnished by bitterness. Love is corrupted by bitterness. Life is shortened by bitterness. Why accept it when it’s so corrosive?

 

I got One life, One life, One life

And I’m gonna live it

I got One life, One life, One life

And I’m gonna live it – Right

 

I don’t know exactly what’s fair and what’s unfair. I don’t know if I’m right or mistaken – but I know my intentions. I know why I do the things I do. I want to choose Better. I want to take my One life and live it the best way I can. I want to let my heart be full.

 

They say the more you think you know what’s right

The less you do what you feel inside

 

So I won’t pretend that I always know

I’ll just follow my heart wherever it goes

 

And I may not always get it right

But at least I’m living coz…I’ve only got this

One life, One life, One life

I’ve got this One life…

 

I don’t know many of the answers, or even the questions….but I do know this

 

Bitter or Better?

 

definitely Better.

 

If I knew yesterday 

What I know today

Where would I be tomorrow?

 

I won’t let my soul slide away

I’d do whatever it takes

Coz this time’s only borrowed

 

I got One life, One life, One life

And I’m gonna live it

I got One life, One life, One life

And I’m gonna live it – Right

 

 

Thank you Mom

 

Categories: Love, Music | 5 Comments

The Power of Love

Posted on November 22, 2012 by koco

 

Love.

 

How do we define it? Experience changes our perspective. Age deepens our understanding of it. When I was a child love was a simple thing. I loved my family, and our dog Suki. I loved Strawberries, French Toast and Ronald Reagan. I loved Saturday morning cartoons and those necklaces you could eat. I loved my Grandmas kitchen and Sunday mornings in church. I loved Star Wars and the boy down the road – he had the Millennium Falcon.

 

When I was a teenager I loved Ralph Lauren clothes – still do – and black eyeliner. I loved hairspray and back-combing. I loved Robert Downey Junior and the boy with the freckles in the year above me. I loved my friends and Wrestle Mania Marathons with Ray. I loved parties, and driving in cars with no destination – music turned up so loud! I still loved my family, even when I didn’t like them that much.

 

Dreams are like angels

They keep bad at bay

Love is the light

Scaring darkness away

 

When I had my son Ryan…that was love. I sometimes think he and I were born on the same day. My heart was full, crushed, expanded and overflowing. Every single thing about him was perfection.

 

With each child my heart grew, the definition of love became a list of names. My husband & my children. Love.

 

Darren, Ryan, Grace, Cameron, Emlyn.

 

Romantic love and maternal love are so different.

 

The love I feel for my husband is a gift, a blessing. It feeds me and sustains me. Darren stands beside me – an equal.  This love is empowering. This love encourages me to become more than I am. This loves fires my heart with warmth. This love is orange.

 

I’m so in love with you

feels like fire.

 

The love I feel for my children is frightening, dangerous in it’s vulnerability. This love leaves me exposed and off-balance. This love fuels dreams…and nightmares. Nightmares of loss, or failure. This love terrifies me in it’s intensity. I look at my children and sometimes I can’t catch my breath. This love, for all it’s joy, has the power to destroy me.

 

The power of love

A force from above

Cleaning my soul

Flame on burn desire

Love with tongues of fire

Purge the soul

Make love your goal

 

I know I would do crazy things to protect my children. I DO crazy things to protect my children. Ryan moved out early this October – I haven’t slept properly since.

 

I’ll protect you from the hooded claw

Keep the vampires from your door

When the chips are down I’ll be around

With my undying, death-defying

Love for you

 

My favorite lyric in any song, from any genre is…‘With my undying, death-defying love for you.’  I feel those words in every cell.

 

The power of love

A force from above

Cleaning my soul

The power of love

A force from above

A sky-scraping dove

 

Flame on burn desire

Love with tongues of fire

Purge the soul

Make love your goal

 

‘Love is danger, love is pleasure, love is pure – the only treasure’.  How do we define love? We can’t. Love defines us.

 

 

Categories: Love, Music | 17 Comments

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