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

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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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Both Sides Now

I moved from Canada to England when I was 18 years & 7 months old. I picked up and packed up and transferred my life 6,733 km from where I started. I was not very bright about a great many things, but I wanted my life to be an adventure and that was my grand beginning. I left everything but what I could carry in a suitcase. I knew a little about England [My Gram is English – you’ll hear more about that later] and I’d done my homework. I’d read everything written by all the Bronte sisters, by Jane Austen and Charles Dickens. Just for good measure I’d also watched a few episodes of Coronation Street on CBC [that’s the Canadian Broadcasting Company]. Still, I was surprised when I arrived. Heathrow bears no resemblance to Victorian England.

Rows and flows of angel hair
And ice cream castles in the air
And feather canyons everywhere,
I’ve looked at clouds that way.

Time moved on and I adjusted but nothing prepared me for the hollow feeling of missing my family. Especially my Gram. I had to walk to the end of the street from where I was living to call home. I had almost no money and the pay phone ate every penny. I usually spent the first 2-3 minutes just crying. Then the voice would come on the line telling me I had credit enough for 60 more seconds and I would rush to say and hear ‘I love you’. I would walk back to my room and know that this did not feel like a grand adventure. This felt like purgatory.

But now they only block the sun,
They rain and snow on everyone
So many things I would have done,
But clouds got in my way.

My Gram was born in England and moved to Canada to marry my Grampa immediately following WWII. Although her parents passed away long before I completed the migration circle moving Canada to England, her sister Joyce lived less than an hour from where I ended up in Hampshire. Joyce was a slightly sterner, more British version of my Gram. She drove up one Sunday, walked into my pity party and sobered me up.

I’ve looked at clouds from both sides now
From up and down and still somehow
It’s cloud’s illusions I recall
I really don’t know clouds at all

When I was expecting Ryan, Joyce ran the roost. She rearranged my cupboards, tended my garden, painted my kitchen and knit enough for 10 babies while I spent a month in the hospital waiting for Ryan to arrive. And once he did she also managed that. With her no-nonsense approach she had him swaddled and feeding on a schedule before 2 weeks were out. I can hear her voice singing to him now ‘…amazing grace, how sweet the sound….’.

Moons and Junes and Ferris wheels,
The dizzy dancing way that you feel
As every fairy tale comes real,
I’ve looked at love that way.

Last week my mom’s younger sister Susan called early in the morning. I always worry when the phone rings before 7 am – that’s night time in Canada – fearing the worst, anticipating pain. She called to tell me that the day before Gram had received a letter, and in it, the news that Joyce had passed away. She was 95 years old.
In her life, my Gram has lost [like many of her age and generation] more than I can comprehend. She lost her childhood to war. She lost her home and family to follow the man she loved. She mourned the loss of grandparents, parents, 2 sisters, multiple sisters-in-law & brothers-in-law, cousins, relatives and friends. She suffered the devastation of losing a grandchild and a child, and her best friend – her husband. I look around at the people I love and imagine losing them one by one over decades. How does a heart keep beating after such a battering?
We talked about it once. About life and love and loss. She said something like this…
“When you’re young Life is giving, life is always giving. Firsts of everything everywhere. First crush, first kiss, first love. First home, first child, first tooth. Friends, success, youth and beauty. Laughter, happily-ever-after. The scales are weighed for Life. Then – they tip. And instead of giving, suddenly they’re taking. Losing. The scales have tipped the other way. There’re still firsts – like grandchildren *here she smiled* but in the taking time that’s how life goes. It’s how you gain your substance, your wisdom, your depth.”

Well something’s lost, but something’s gained
In living every day.

I think about those scales. I wonder if I’m on the taking side? I wonder if my firsts are diminishing and my losses weighed heavier? Disability gives unique perspective to the way you register balance. Mark Twain, in 1896, lost his eldest daughter Susy [age 24] from spinal meningitis. In an excerpt from a letter to a friend he writes…
“I did know that Susy was part of us; I did not know that she could go away, and take our lives with her, yet leave our dull bodies behind. And I did not know what she was. To me she was but treasure in the bank; the amount known, the need to look at it daily, handle it, weight it, count it, realize it, not necessary; and now that I would do it, it is too late; they tell me it is not there, has vanished away in a night….”
The fragility of Emlyn’s life, Rett syndrome, ensures I do know what she is. She is treasure in my hands. The amount known and looked at, weighed daily, counted and calculated with interest…daily. And it’s not just Emlyn. I have learnt to count my blessings. To know them and appreciate their value. My scales have measured much, and the bounty is undeniable.

I’ve looked at life from both sides now
From win and lose and still somehow
It’s life’s illusions I recall
I really don’t know life at all

Auntie Joyce, for picking my lip up, for stacking my tins and fixing my roses. For all that and so much more. Thank you.I hope you’re singing xoxo

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