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: , , , | 2 Comments

Say Anything

 

If I could say anything, anything
What would it be?
Good question for our destined reality
I would tell you that I love you
Even when it didn’t show
I would tell you that I love you, baby
By now I hope you know.

 

For 7 days my son Cameron hasn’t said a word. Neither has his little sister Emlyn. Tomorrow Cameron will speak, but his little sister won’t. Tomorrow Cameron will be able to tell anyone who’s interested what he likes, what he loves, what he thinks & what he dreams of. He’ll be able to say ‘this was hard’ or ‘it hurt when___’. He’ll be singing if he wants to, whistling because he can. Tomorrow Emlyn won’t. She won’t be speaking. She can’t tell anyone what she likes (cucumbers!), loves, thinks or dreams of. She can’t say ‘this IS hard’ or ‘it hurts when____’. She won’t be singing although I know she wants to, she won’t be whistling because she can’t. Emlyn has Rett syndrome. She can’t say anything.

 

If you could go anywhere, anywhere
What would you see?
Take a step in any direction
It’s make believe
If your mind is always moving
It’s hard to get your heart up off the ground
Yeah, your mind was always moving
Your thoughts never made a sound

 

This is what Cameron says about ‘Not Speaking’

 

My name is Cameron (or Cam or Cammy depending on who’s talking to me) and I’m 15 years old. I’m a pretty sociable guy, I hang out with my friends and I like to talk… a lot. I have a large family (there’s 6 of us) and together we make a bunch of noise, well…5 of us do. One of us is mostly quiet. That’s my sister Emlyn. Em is 8 years old and she has Rett syndrome. When she was really little she used to talk a bit. She said my name (she called me Cammy) for the last time when she was 18 months old and I’d give anything to hear her say it again. I love Emlyn so much.

I feel really strongly that treatments and a cure are graspable. They are just out of reach and now is the time to do whatever we can to help. I want to help. I already try to help with the charity my parents are involved with but when my mom told me about Rettland Foundation and the ‘Not Speaking’ campaign I knew I’d found the thing that was a good fit for me. I love to talk so staying silent will be tough, but not as tough as every minute or every day with no voice must be for my sister.

I’m not speaking because I want to scream. I’m not speaking because I want to be as loud as I can about Rett and the science and the trials and the possibilities of a cure. I’m not speaking so I can make a difference.

I’m not speaking for 7 days. I’m doing it for Rettland Foundation. I’m doing it for research and science and all the steps along the way. I’m doing it for my little sister.

This is my link [ click here  ]  – would you help?

 

If I could have it go any way, any way
It’d go like this
Take it back to a couple years yesterday
To our first kiss
In that moment I loved you
This isn’t how I ever saw it going down
In that moment I loved you
I wish I knew then what I know now.

 

In our family we talk a lot! When we are all together around our kitchen table there is laughter and shouting and interrupting. We talk over the top of each other sometimes in our eagerness to just communicate. I wish I could bring you to my kitchen, to the noise and the warmth and the love of our family when we are together. It’s every dream I ever dared have…in my kitchen. Me, Darren, Ryan, Grace, Cameron, a friend or two here to eat and drink and be part of our noise, the talking and debating and articulating EVERYTHING…and Emlyn, silent. Emlyn full of thoughts, silent. Emlyn with something funny…unsaid. Emlyn with a great point…a point she can’t make. I want to hear what she has to say. I long for the sound of her voice. I want to hear her silly ‘knock knock’ jokes. I want to HEAR HER. Oh God I want it so bad.

 

Knowing Emlyn, she would be the loudest in the room. She would talk and talk and talk. She would speak as much sass as her eyes express. She would have great jokes because oh my, does she ever love to laugh. And tomorrow….she would say ‘Cameron, I love you. Thank you for being the coolest big brother. Thank you for staying silent to try and give me a voice’. Then, she would say ‘Can you get me a cucumber?’

 

 

Day 1

 

 

Day 2

 

Day 3

 

 

Day 4

 

 

Day 5

 

 

day 6

 

Cam day 7

 

 

We won’t break if we let go
You and I already know
We were bound to be set free
Eventually, so here we are now
You can say anything

 

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

Been a Long Day

 

People are like pieces of beautiful fabric.

 

Woven together skilfully with masterful attention to detail. Each pattern unique, designed with subtle flaws to enhance the finish with quirks and unexpectedness. Over the course of its life the fabric is more or less fashionable. More or less cherished. Sometimes on display,  sometimes in a cupboard. Sometimes praised, sometimes critiqued. With age and use, good fabric becomes softer. With use and age, good fabric becomes more valuable to those that love it well. I have a blanket… I’ve had it all my life. My name stitched in grass-green thread by my grandma. There aren’t many things I own of greater value. I don’t keep it on a shelf, or in a cupboard…it gets used. I took it to Italy with my family this summer, and when my heart broke last week I wrapped myself in it for comfort. This blanket’s been to hell and back. It knows my scars.

 

My blanket is threadbare. With patched rips and frayed edges. Like life, the fabric has experienced trauma. Each heartache a thread pulled. Each sadness widening the weave. Harsh words like sandpaper wearing away the strength.  Loss and grief and disappointments alter the fabric irrevocably. Absorbency changed by tears shed. Bias pulled out of shape by, well…bias. The binding un-picked, the elasticity stretched. The fiber, once so finely spun becomes matted.

 

People are like beautiful pieces of fabric.

 

CARE-SYMBOLS1

Categories: Music | Leave a comment

Give a Little Bit

 

We’re almost half-way through October and I’m feeling deeply inspired by the people in my life. I’m going to tell you about some if you’ll let me (click the links in bold PURPLE for Rett Syndrome Awareness, please)

 

The brave mother who started the #nomoremptyarms campaign on Facebook and Twitter to encourage people to take a minute and focus on the feeling of holding your child in your arms. This mother knows the joy of embracing her children, and tragically, also knows the ache of empty arms and a broken heart. Please read more here.

 

Give a little bit

Give a little bit of your love to me

Give a little bit

I’ll give a little bit of my love to you

There’s so much that we need to share

So send a smile and show you care

 

The boy who loves his sister and wants to go #roundtheworldforRett. He’s challenged anyone skilled with a football to video themselves and nominate others. The friends who’ve joined him near and far. Please check out his challenge here and if you can #roundtheworldforRett film it and share it with that hashtag.

 

The friends who organise Stollathons (check it out with this link!!), and the ones who survive flooding over and over yet still manage to give it up (what did they give? click another link). The wholehearted friends who tell the truth, bearing laughter or tears equally. The all weather, all terrain, Goodyear tyres (or tires). The ones in their Wellies bailing out water with well worn buckets.

 

The parents who share information, who share awareness in uncountable ways…all year. The parents who share love, and knowing how hard this particular month is, prop each other up. The friends and families of the parents who cast the message out like ripples on water, reaching further and further. You can’t see how far that message has gone until you feel it coming back like waves on a shore…someone new knows about Rett, BECAUSE OF YOU!! Take that in for a second….you changed the world.

 

The scientists, clinicians, researchers and therapists…..that’s a whole different blog full of awe and gratitude. Your work is passion and integrity and energy and enthusiasm and belief…all wrapped up in humility, discipline, and commitment. You give so much more than you can ever be thanked for.

 

I’ll give a little bit

I’ll give a little bit of my life for you

So give a little bit

Give a little bit of your time to me

See the man with the lonely eyes

Take his hand, you’ll be surprised

 

The girls. The girls we have now, the girls we’ve lost but won’t ever forget. The girl diagnosed in the time it’s taken me to write this post, and the ones who follow after…every 90 minutes – another one, and another one, and another one….

 

Give a little bit

Give a little bit of your love to me

I’ll give a little bit

Give a little bit of my life for you

Now’s the time that we need to share

So find yourself, we’re on our way back home

Don’t you need to feel at home?

Yeah, we gotta sing!

 

This is what I’m giving for my #WWYG challenge. It’s a very small part of What I Would Give to change the world for Emlyn and all the girls with Rett now and in the future. It’s a small part, but it’s bound to result in a ripple or two on some water somewhere.

 

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

 

me profile

Categories: Cure Rett, Love | Tags: , , , , | Leave a comment

Fever to the Form

An hour ago my brother called to tell me that our father died. Not my dad, but my father. Not my home, but my origin point. The cells that make me up. The reason there’s red in my hair. The cause of a void. Without him there would never be me. Without him I always will be. I am now, illegitimately, an orphan.

Farewell Don.

Categories: Music | 2 Comments

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