here comes the sun child

Here comes the sun little darling, here comes the sun, and I say…it’s alright.

This should have been the last day of the school year for Emlyn, but she decided to start the summer holidays a day early. I can understand her eagerness to do that – it’s been a tough year. Sickness, surgeries, back braces and exhaustion from a constant struggle to breath regularly. But it’s summer now, in more ways than one. Here comes the sun.

Little darling, it’s been a long cold lonely winter

Little darling, it feels like years since it’s been here

Here comes the sun, here comes the sun and I say…it’s alright.

There are days – lots of days – when it’s hard to see the sun. When it’s not easy to remember the reason to believe. Days of clouds. Days of rain. Days when the howling winds of fear obscure the certainty. The certainty that the sun is always coming back. To shine. That in fact, the sun is always there, even when you can’t see it.

Little darling, the smiles returning to the faces

Little darling, it seems like years since it’s been clear

Here comes the sun, here comes the sun and I say…it’s alright.

O-o-h child things are gonna get easier

O-o-h child things’ll get brighter

Someday we’ll get it together and we’ll get it undone

Someday when the world is much brighter

Someday we’ll walk in the rays of a beautiful sun

Someday when the world is much lighter

Here comes the sun, here comes the sun and I say…it’s alright.

sun sun sun – here it comes!

* with special thanks to the ones who made this week brighter. Here comes the sun.

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

Just The Way You Are

Don’t go changing, to try and please me
You never let me down before
Don’t imagine you’re too familiar
And I don’t see you anymore

I wouldn’t leave you in times of trouble
We never could have come this far
I took the good times, I’ll take the bad times
I’ll take you just the way you are

Don’t go trying some new fashion
Don’t change the color of your hair
You always have my unspoken passion
Although I might not seem to care

I don’t want clever conversation
I never want to work that hard
I just want someone that I can talk to
I want you just the way you are

I need to know that you will always be
The same old someone that I knew
What will it take till you believe in me
The way that I believe in you

I said I love you, and that’s forever
And this I promise from the heart
I could not love you any better
I love you just the way you are

I don’t want clever conversation
I never want to work that hard
I just want someone that I can talk to
I want you just the way you are

Happy Anniversary Darren, head and heart…both engaged for only you xxx

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Build it Better

“Do the one thing you think you cannot do. Fail at it. Try again. Do better the second time. The only people who never tumble are those who never mount the high wire.”

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I don’t suck, and neither do you.

A few days ago I was talking with some friends, my tribe of weirdo’s, and in a moment of frustration said “I want to write a blog post and call it ‘I Don’t Suck and Neither Do You'”. As you can see, the idea took root. And it’s true. I don’t suck. You don’t either. Chances are good we’re both just doing our best.

Here’s an admission. Emlyn is 9 years old and we still don’t have an eye gaze. I could have bought her one by now. I haven’t. And I’m not going to justify why. I don’t need to. Do I feel guilty? Sure. Do I feel inadequate? Yes.

Emlyn doesn’t get enough physio. I feel bad about that too. She doesn’t get as much hippo-therapy as I want either. Another tick in the growing guilt column. Emlyn watches more tv than her sister or either of her brothers did. Check the box with a bold mark under ‘fail’. There are lots of columns and bold ticks. Guilt. Failure. Discouragement. ‘Not good enough’. ‘Not smart enough’. ‘Not advocating enough’. ‘Not raising enough awareness’. ‘Not raising enough money’. ‘Not keeping up with friends as much as I should’. ‘Not giving my other children enough attention’. ‘Neglecting my husband’. ‘Failing my dogs’. ‘Getting distracted’. ‘Losing perspective’. ‘Failing’. ‘Failing’. ‘Failing’.

Somehow, there’s all this pressure to always be and do more. There’s all this judgement. Or the perception of judgement. Self judgement. We look at other people’s projected image and measure ourselves against it and we always come off the loser.  Of course we do, it’s a projection. How can you possibly measure up against something so nebulous?

Take Facebook for example. Most people (me included) share their good moments and their triumphs far more often than they share their heartache and insecurity. For instance – most of my Facebook friends have no idea that Emlyn hasn’t been in school since October. That each day she’s struggling just to breathe. That watching her struggle to breathe, I can’t breathe either. That she’s seizing more, her heart is worse and she doesn’t much want to walk.

They don’t know that the pictures I shared of my newly decorated bedroom make it look great – for the length of time it took to take the picture. My bed isn’t made right now and there is dirty laundry on my bathroom floor. Tonight I didn’t cook for my family. I didn’t cook last night either. But I do cook on weekends and when I do I share a picture of my culinary masterpieces and if you just looked at that you might get the impression that I’m this uber homemaker lady, which I’m not….but seriously, should I share all that with everyone? No way. I have my tribe and my husband and my kids for that. What I AM saying is that if you only looked at my projection you might think I’ve got my shit together…and I don’t. I’m betting neither do you. And that’s okay.

You don’t have to try so hard
You don’t have to, give it all away
You just have to get up, get up, get up, get up
You don’t have to change a single thing

So we don’t have an eye gaze yet. Not the gold standard but no one is sending me to mommy prison for that. I communicate with Emlyn and she communicates with me and we work it out. We use a lot of intensive interaction, a lot of intuitive communication; attuned-nurturing-attachment based communication. She gets her point across fairly clearly. She makes herself known. Of course I want her to have a louder and more effective voice, but I have not completely failed her by loving her and spending time being ‘in touch’ with her. Not at all. There are so many ways to do it right. We judge ourselves, or think others are judging us and handing down a verdict of ‘wrong’. Maybe it’s not wrong, maybe it’s just different. Maybe it’s just what we can handle at the time, or afford at the time. And maybe it’s time to stop pointing the finger…even when we’re pointing in the mirror.

I will always want to do better and be more productive, effective, attentive. But I am not going to beat myself up for failing to be perfect, I will not look around and compare myself critically with others I know only the surface of. I’m done believing that I’ve  failed or that I lack. And I won’t be defined by my weaknesses or my strengths in absolutes. I’ll embrace the mosaic mess of it all and give my heart a break.

When you spend time counting your fails, you miss out on celebrating the things you’re doing okay at, and even the few things you’ve really succeeded at. When you measure yourself by anyone else yardstick you miss out of the texture of your own.

Take your make-up off
Let your hair down
Take a breath
Look into the mirror, at yourself
Don’t you like you?
‘Cause I like you

Categories: Music | 3 Comments

you + me

“We are more alike, my friends, than we are unalike.” ― Maya Angelou

Yesterday was Rare Disease Day. I watched on social media as friends and family shared pictures and facts. I watched [and joined in] as the various organisations representing Rett syndrome [and many many other rare diseases] shared information. I was humbled by the similarities, by the kinship we share.

You and me were always with each other
Before we knew the others was ever there
You and me we belong together
Just like a breath needs the air

Before Rett [circa BR] there were people I didn’t know and would never have met. People who’s paths wouldn’t twine with mine if not for our shared odyssey through these waters. These teachers; would never have taught me.

I told you if you called I would come runnin’
Across the highs the lows and the in between
You and me we’ve got two minds that think as one
And our hearts march to the same beat

There are people who are so significant, so concrete, it’s impossible to imagine life without them. Some as close as sisters. Some less so. But even those as distant as second cousins [twice removed and never met] are more like me than different from me.  They cry the same tears. They have the same hope.

You and me we’re searching’ for the same light
Desperate for a cure to this disease
Well some days are better than others,
But I fear no thing as long as you’re with me

There is a Japanese art called Kintsukurio. It’s the art of repairing something broken [typically pottery] with gold or silver lacquer. The flaw, the break – unavoidable. Already done. But the flaw can have purpose, beauty. The break making room for the gold to strengthen and reinforce.

They say everything’ it happens for a reason
You can be flawed enough but perfect for a person
Someone who will be there for you when you fall apart
Guiding your direction when you’re riding through the dark

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