go your own way

 

For 18 months I’ve been coming undone. I’ve unraveled. I have tried to knit myself back, but – too lazy to master knitting – the efforts of repair have largely sucked. So, I’m undone, unravelled, disentangled and trying to straighten myself out.

The word unravel is a verb. It means – to unwind, undo, untangle. It also means – to separate, extricate and free.

When you have a tiny baby the last thing you’re thinking about is what it’ll feel like when they grow up & leave you. This must be – at least partly – because it feels very different to be the child who’s leaving than to be the parent who’s left. Often, when you’re having your first child, it’s not been that long since you left your parents…so you’re still in that mindset (even if it’s been a decade or so). Also, we’re likely just not programmed to think that way…we’re thinking about the sleepless nights and the aching breasts and the thousand other details that make up a new life.

When you have a toddler you think about potty training and fingerprints, about the joy of new words and the delight of crayons on lined paper. You think about night lights, and Lego. Paper airplanes and ‘did you eat the cat food?’. You think about how it’ll feel when this Awesome Person you made goes to school and sometimes that’s a happy thought and other times it scares you. You think about the thousand other details that go into growing a thriving human.

When you have a teenager you think about phone bills and facebook, about dating and waiting and cleaning up after. You think about headaches, and heartaches and mistakes.. You think about band names and brand names and you try to remember their friends names. You think about so many things you hardly have time to think about them leaving – but when you do it scares you…so you stop.

and then it happens.
and you need to learn to separate, to extricate…to free.

 
You can go your own way
Go your own way

 
First Ryan left. *I actually tear up typing those words…* He left and for months I moped around, barely able to listen to music. I can’t really explain it – he was messy, and frequently out, he ate everything and cleaned nothing. But my soul felt shredded and I haven’t stopped missing him yet.

Then Grace left. Packing up her room, her life and my heart. Boxes everywhere, her laughter nowhere. Silence on the second floor.

 
Tell me why
Everything turned around
Packing up
Shacking up’s all you wanna do

 

There is an ache inside me that simply will not go away. It’s a physical pain in my chest – tangible like a chunk of something spiky and rusted. I feel it with far too many of my breaths.

I NEVER expected this. I want my children to grow and thrive and live thrilling independent lives. I want them to experience freedom and adventure and success as well as failure. I want it just that extra bit more intensely for Ryan and Grace and Cam because it’s something I fear Emlyn may not get the fullness of. I want them to wring the everything out of life. The EVERYTHING.

 

If I could
Baby I’d give you my world
Open up
Everything’s waiting for you

 

But here I am, trying to knit up my broken bits. Trying not to hurt with this absence that’s swallowing the sound from our lives. I still cook for 6, but there’s only 4 eating. I’m frightened I’ll always be partly empty where these fingerprints are meant to be. The lyrics are usually the most compelling part of the song for me, and certainly for this blog…but tonight it’s the sounds Lissie makes…the noise of grief.

 
You can go your own way
Go your own way

 
There’s no positive spin at the end of this post. No moral, no lesson I’ve learnt…not yet.

Unravel is a verb that also means – to straighten out, resolve, clear up, explain.

When all this hurting is done, I hope I can unravel a bit more.

 

You can go your own way
Go your own way

 

 

Categories: Love | 4 Comments

favorite things

 

20140402-180508.jpg

Categories: Love, Music | Tags: , , , , | Leave a comment

Invictus

 

I may be on my knees, with my palms cut and bleeding on the ground. I may be bruised and wounded but I am not broken. I am imperfectly enough for today. My soul is unconquerable. I am free.

 

I don’t do yoga, never tried pilates

Not many people want me at their parties

Tryin’ ta find my place, some place, oh I, oh I, oh I

I drink a little more than recommended

This world ain’t exactly what my heart expected

Tryin’ ta find my way someway, oh I, oh I, oh I

 

See, whoa, c’est la vie

Maybe something’s wrong with me

But, whoa, at least I am free, I am free

Yeah, whoa, c’est la vie

Maybe something’s wrong with me

But, hey, at least I am free, I am free

 

If you ask the church then I am no believer

Spend Sundays asleep I’m just another dreamer

Still tryin’ ta find my home sweet home, oh I, oh I, oh I

I guess I ain’t too good with money neither

I got two left feet, no, I’m no Jackson either

Just tryin’ ta find my way someway, oh I, oh I, oh I

 

See, whoa, c’est la vie

Maybe something’s wrong with me

But, whoa, at least I am free, oh, oh, I am free

Yeah, whoa, c’est la vie

Maybe something’s wrong with me

But, whoa, at least I am free, oh, oh, I am free

 

Just tryin’ ta find my home sweet home, sweet home, sweet home, sweet home,

I drink a little more than recommended

This world ain’t exactly what my heart expected

 

Whoa, c’est la vie

Maybe something’s wrong with me

But whoa, at least I am free, oh, oh, I am free

Yeah, whoa, c’est la vie

Maybe something’s wrong with me

But, whoa, at least I am free, oh, oh, I am free

 

Invictus

 

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

 

William Ernest Henley

 

 

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

Everybody’s Changing

 

I think all my readers know that my daughter Emlyn has Rett syndrome and have some idea of what that means for us {if not here’s a blog post about it}.  Rett is a complicated disorder and sometimes those complications lead to misunderstandings about spectrums/scales/levels and the varying degrees of effect Rett has on the girls. That can lead to fear, judgement and hurt feelings. Here’s why.

 

A child with Rett usually develops typically for the first 6 – 18 months. During that time, or anytime after, signs of difficulty begin to appear. These range from mild to severe.

 

Symptoms may include:

Breathing problems

Regression of acquired skills

Excessive saliva and drooling, biting, chewing, or swallowing difficulties; may grind teeth or     have involuntary tongue movements

Floppy arms and legs

Shaky, unsteady, or stiff gait, toe walking, muscle rigidity, spasms

Seizures

abnormal sleep patterns

Loss of purposeful hand movements, repetitive hand motions like clasping, wringing or constant placing of hands in mouth

Loss of interest in social engagement

Poor weight gain, severe constipation and gastroesophageal reflux

Poor circulation

loss of speech, no development of speech.

Osteoporosis (weak bones) is common in individuals with Rett syndrome

Developmental regression or delays vary. A child with Rett syndrome may sit up but not crawl.

Some children learn to walk independently, others don’t walk at all. Those who do learn to walk may keep that ability their whole life, while others lose the skill.

Some children {or adults} with Rett have heart complications, others do not.

Some have visual difficulties, others do not.

Some have an element of preserved speech, others have no speech at all.

 

 

There’s a lot of  ‘some do, while others don’t’ in that list. There’s a lot of might, may, and could with Rett in general. I’ve met girls with Rett who run. I’ve met girls who barely move at all. I’ve met tiny girls with relentless seizures, I’ve met adult women who’ve never had a single one. I’ve met girls who speak, who used to speak, and who’ve never spoken a word. One of the cruelest things about Rett is it’s diversity. It’s like a lottery. A Russian Roulette of symptoms.

 

What I haven’t met, is a girl who has ‘GOOD’ Rett syndrome.

 

 

You say you wander your own land

But when I think about it

I don’t see how you can 

You’re aching, you’re breaking

And I can see the pain in your eyes

Says everybody’s changing

And I don’t know why 

 

 

A few months ago Emlyn learnt to walk up stairs independently. I was so insanely proud of her. Emmy was a very late walker, before she was 2 1/2 she’d never stood up or held her own weight. She shuffled around on her bum {sweeping the floor as she went} and got around pretty quickly…but she didn’t walk. When we found out Emmy had Rett, we knew that the chances of her walking weren’t great but she was lucky and she worked hard…

 

{…quick break to point out that if it were only down to hard work I think every girl with Rett would walk. These are some seriously gritty kids, and if they could, they would…but they have a syndrome that makes controlling their bodies extremely difficult and in some cases almost impossible, so if they don’t walk it’s because they can’t, NOT because they don’t try hard enough or because their parents aren’t committed enough. Just saying, for the record…..}

 

….and when she was 4 she took her first steps. Since then she’s been working on her balance, her co-ordination and her confidence. That’s hard work when you have motor control issues. This summer Emlyn walked a mile and a half with around 300 friends to raise money for Cure Rett. You can see the video if you click the link here. So, when she managed the stairs we were already pretty proud {did I mention she also got an achievement award in school…is that bragging?}. Like many proud modern moms I shared it on Facebook. 321 likes and 93 comments later I was riding high on the shared joy of my friends and family…until someone said to someone else that I was wrong to share it because it was like bragging and rubbing peoples noses in how well Emmy was doing and…OUCH.

 

I was hurt. I kinda still am, but I’m working on it. The thing is, it’s made me think about perception and when I say perception I kinda mean judgement, and when I say judgement I kinda mean that thing we ALL do, which is to gauge & measure our own situation in relation to others.

 

So my first thinking was…’you what?…you think I’m bragging and that Emmy has what…good rett???…oh ya, sure she does!!…her long qt, fabulous!!..her brittle little bones that are like straws, awesome!!…her total lack of speech, wonderful!…her seizures, fun times!…her breathing that’s so bad it gives me anxiety let alone what it does to her, super!…her hips, her back, her hand mouthing, her loss of freedom, her fear, her pain….yup…the walking up stairs makes all that seem pretty trivial buddy, I’m ashamed of myself’….ya, I stayed there for a while.

 

I stayed there and then I thought about hurt feelings and how hurt feelings aren’t much help unless we use them to get a better perspective.

 

I said at the beginning {doesn’t that feel like a long time ago?}…’Rett is a complicated disorder and sometimes those complications lead to misunderstandings about spectrums/scales/levels and the varying degrees of effect Rett has on the girls. That can lead to fear, judgement and hurt feelings’…Rett is complicated. Some of the elements of Rett are very outwardly visible and obvious. Some are less so, like osteoporosis or long qt. If we spend our time comparing one thing is certain…we won’t be spending our time empathizing. And that…that would be a real shame.

 

 

 

So little time

Try to understand that I’m

Trying to make a move just to stay in the game

I try to stay awake and remember my name

But everybody’s changing

And I don’t feel the same 

 

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

HAPPY

 

It might seem crazy what I’m ‘bout to say

Sunshine she’s here, you can take a break

I’m a hot air balloon that could go to space

With the air, like I don’t care baby by the way

 

 

Because I’m happy

Clap along if you feel like a room without a roof

Because I’m happy

Clap along if you feel like happiness is the truth

Because I’m happy

Clap along if you know what happiness is to you

Because I’m happy

Clap along if you feel like that’s what you wanna do

 

 

I’m guessing you’ve heard this song already. It’s a pretty epic hit right now…and so it should be. This song feels so good! – so good I’m struggling to type as I groove away at my keyboard, snappin’ my fingers, clappin’ my hands, wigglin’ my torso…sittin’ here trying to write a post :D

 

 

Here come bad news talking this and that, yeah,

Well, give me all you got, and don’t hold back, yeah,

Well, I should probably warn you I’ll be just fine, yeah,

No offense to you, don’t waste your time

Here’s why

 

 

This song is lighter than light and sometimes…isn’t that exactly what we need? Don’t we need to just put that burden down and dance in the rain? The worries that’re part of our every day – some of them aren’t going anywhere but that doesn’t mean we can’t set them in a corner for a few minutes and just give in to the joy. Joy doesn’t exist in a pain free, worry free, fear free environment…it exists in spite of all that. It exists because of all that. The high isn’t high if you don’t know low. The sun isn’t bright if you don’t know dark. The goosebumps you feel when joy bubbles under your skin – that’s because you know the vulnerability of wearing your skin inside out. Clap along…

 

 

Because I’m happy

Clap along if you feel like a room without a roof

Because I’m happy

Clap along if you feel like happiness is the truth

Because I’m happy

Clap along if you know what happiness is to you

Because I’m happy

Clap along if you feel like that’s what you wanna do

 

 

Today…I’m a room without a roof. Are you? Then Clap along :D

 

Categories: Music | 1 Comment

Blog at WordPress.com. Customized Adventure Journal Theme.

Follow

Get every new post delivered to your Inbox.

Join 4,906 other followers

%d bloggers like this: