A life that’s good

 

Here we are again, it’s the 23rd of May. In our house that means it’s D-day. D for diagnosis. Count them up and you have six. It’s shaky hands that type those words. Hands linked to a heart doing it’s best to be at ease, but still, honestly, struggling a little not to find the passage of time remarkable. Wanting to wake up on the 24th realising the 23rd passed without note. This isn’t the year for that.

Rett is just unavoidably big. My friend Collen wrote earlier today in her blog

I want to live there, where Rett Syndrome is a little tiny thing, floating in a huge sea, not creating any waves or inconveniences. Yet each morning, I find myself inland, tripping over it  in the family room. You can’t get around it or forget that it’s there. You have to plan for it and take great measure to make sure that it doesn’t get damaged by carelessness.

…that says it better than I ever could. Each morning I find myself tripping over it, and on May 23rd I usually stub my toe.

On this day I have a habit of looking at where we were, where we are, and where we’re going.

 

May 23rd 2008 – ‘where we were’ is simple. We were in despair. We were in an uncomfortable office with a geneticist. We were in confusion. We were in agony. We were in fear. We were in shock. We were in Scarborough North Yorkshire. Later that day we were in each others arms. We were in silence. We were in Emlyns eyes.

 

May 23rd 2014 – ‘where we are’ is pretty ok. We are blessed. We’ve learnt how to be in the moment. We’ve been down dark and difficult roads and found our inner gangster. We know how to hustle when we need to act fast, and how to slow down when there’s time to appreciate the quiet. Emlyn has been doing ok – up until this week where she’s struggled a bit. The changing nature of Rett means you shouldn’t ever get too comfortable, or uncomfortable, where you are

 

 

May 23rd 2015, 2016, 2017…..’where we’re going’ – not so easy. We just don’t know and that’s a little exciting, and a lot scary. We hope to see further developments in research and treatments for Rett. We are looking forward to working with Emlyns Tobii eye gaze computer, giving her another way of communicating with us. We pray Emlyn stays with us for the full journey, but we know that’s not a certainty.

 

So we live in the day we’re in. We do our best. We know we’re blessed and we try to let go of all the rest.

 

Sittin’ here tonight,
By the fire light,
it reminds me I already have more than I should.

I don’t need fame, no one to know my name,
at the end of the day,
Lord I pray, I have a life that’s good.

 

Two arms around me, heaven to ground me,
and a family that always calls me home,

Four wheels to get there, enough love to share
and a sweet sweet song

At the end of the day,
Lord I pray,
I have a life that’s good.

 

Sometimes I’m hard on me,
When dreams don’t come easy,
I wanna look back and say,
I did all that I could,

At the end of the day, Lord I pray,
I have a life that’s good.

 

Two arms around me, heaven to ground me,
and a family that always calls me home,

Four wheels to get there, enough love to share
and a sweet sweet sweet song

At the end of the day, Lord I pray
I have a life that’s good

 

Emlyn 2014

 

 

Categories: Cure Rett, Love, Music | Tags: , , , , | 4 Comments

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4 thoughts on “A life that’s good

  1. Reading through my tears, I gulp air through the ah-ha moments .. I wish I could click my heels through cyber world and over seas to hold you hand and give you a hug. I simply love your work Kori. Tx

    • I wish that heel clicking was a real thing – really looking forward to the day we meet in person Trish xx

  2. Britt Van Giesen

    Beautifully written

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