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Tuesday, 3 January 2012


First time I listen to this since Estella died, curiously starts saying
Just shoot for the stars
If it feels right

If you like maroon five and it’s awesome singer you know already I mean Jagger. While I’m writing this I’m crying, writing, singing, laughing and trying to be quiet for Tom’s sake because he gets very emotional every time he listens to anything it meant a moment with Estella, and we have plenty as we both, better said, we three love music and we sang and danced anything and everything to her, from Puff the magic dragon to cabaret to jose merce… you name it.
You say I'm a kid
My ego is big
Estella always since the day she was born, knew very well what she liked, for instance she never liked Michael Jackson, not even the motown period. She would frown in despise. She loved lady Gaga and Beyonce though.

Since she was diagnosed we spent an awful time with physiotherapy, mainly my mum and me… she would sing funny songs she made up on the go and that Estella found amusing sometimes annoying others. I would use the chart as I always said I had a teenager trapped in a baby’s body.

Physio as all the mums with a child with a neuromuscular disease know, is crucial, it helps coordination and allows abilities to be lost at a slower pace, also helps bonding and something I discovered makes the child and the mum feel “normal”.

I treasure every moment I “danced” with Estella, I used to move her arms and legs for her while I sang to her. Not long ago I visited some good friends at Bluebell Wood who still remember my off tune version of “All the single ladies”… God bless their souls and their ears. It was moments of pure happiness, my baby wasn’t going anywhere then, there was no masks, vents, ng tubes. Only Estella and crazy mummy laughing their heads off.

Estella had a rare complication of SMA, bradicardia, that is her heart rate could go downhill very fast, but when we danced she always was great, oxygen 100 % heart rate 140... Perfect healthy baby. Music is a powerful thing.

When she died, last thing I sang to her was Cabaret… would it be inappropriate to say she was the happiest corpse I have ever seen?. Happy, happy little tinker surrounded by love, laughter and songs.
Maybe it's hard
When you feel like you're broken and scarred
Nothing feels right
But when you're with me
I'll make you believe
That I've got the key

Now is me who needs healing and feel normal, and for the first time I am laughting and dancing with Jagger, she is with me smiling at my impersonation of Mick, blowing kisses in the air so she can catch them.
You wanna know how to make me smile
Dance like nobody is watching, sing like there are no neighbours, live like there is something amazing around the corner, because there is always something. And when is over just be like Elsie in Cabaret, like a Queen. We are the salt and the earth. WE ARE THE MOTHERS OF THE ANGELS, OF THE TINKERS and SMA cant take that away from us x

We’ve got the moves like Jagger

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