HOW DID IT HAPPEN?

This week very soon, we have two very important meetings, one with SMA milk and the other with Mr. Nick Clegg, and I still wondered, how did it happen?

I started blogging when Estella was diagnosed, as a therapy sometimes, as a denial of her condition others. When Estella was diagnosed (it seems so far away now)  we had a plan, she was going to be a type II whose life expectancy is considerably longer and in the meantime a cure would be found and we would live happily everafter. That is what the first part of the blog was about.
Then one afternoon in June Estella went into respiratory arrest and I had to call 999. It was so sudden than when it happened I was Skyping with my dad who was in Spain, he was the one who told me to call the paramedics, because he is a doctor and he could see how his only grandchild was getting worse in a question of seconds. I describe that day as the worst of my life and the beggining of the "journey".
We made it through hospital somehow, she was a fighter, and although her body was getting weaker she had such a will to live... from that period I just wrote one blog to thank staff at the Children's for giving us more time with her.
I didn't know then but we barely had 3 months left, the last two we had to spend at Bluebell because Estella was too fragile. There was when we really started the SMASH SMA campaing. 10 days before she died Tom started writing in twiter and I followed in facebook, the day before she died Estephen Fry retwited. When Estella passed away in my arms I remember telling her "Twinklebell, the clapping is for you" because Tom's phone wouldn't stop ringing, one bell, one follower...
And then, you know the rest, more than 12,000 followers in both social networks, and everytime we get a new follower our Tink smiles, I know she does.
So how did it happen? I took for granted that getting meetings with multinationals and the Deputy Prime Minister was easy... aparently is not only difficult but almost impossible. So how did it happen?
 I think that even when Estella has very stubborn parents who won't give up because they don't have nothing to lose (just the smile and nobody can't take that from us), and the Tink's eyes are magical and make people melt and help her and feel her as part of their own family (we have been fostered by many of you). I think that all this happened because of you, the more than 12,000 people and counting that want to kick SMA where I'm not allowed to write. All this Mayhem, all this hope, all this opportunities to change things that we seem to keep on having is thanks to you all

Thank you for making it happen x

RYANAIR, MUFFINS AND SQUIRRELS

We are flying over the North of Spain now, heading towards Manchester, the steward won’t keep on speaking about some raffle tickets. No need to say we are flying with Ryanair, I could say for the same matter I’m flying on a coach, because that is what low cost is, a bus with wings. No wrong with that, it allows me to visit the family as often as I have holidays so even when is annoying and I can’t listen to music with the noise of the raffle is not so bad if I look at the prize.
Funny enough I’m listening to Muse “New Born”, that is how how I feel more or less .
I gave myself time, time to live with Estella’s condition, time to come to terms and enjoy what we had left, time to let her go with dignity and time to grief afterwards.
Today is 8 weeks since she died, I had gone through days not wanting to go out of bed and others in which I needed to control everything because otherwise the world would follow apart over our heads. I also cried a lot and I laughed, because not all has been despair, there have been good moments too when Tom and I got amazed at people’s generosity and we achieved signatures for SMASH SMA, money for JTSMA and Bluebell Wood, and awareness of this not so rare disease so more families can ask for the tests. We also shared some very nice times with the family and at our own by the fountain telling Estella what is going on and leaving helium balloons in the free air.
Anyway, since Estella was diagnose till now life has been on hold and now I feel I run out of excuses to stay still. I feel I keep on looking at the world as an spectator but not really taking  part of it, as If this bus was too fast, or better said, as if I kept missing the bus just because I don’t feel like getting in it.
I’m running out of excuses not to live, and that is not fair on our daughter because she didn’t have the chance of experiencing life.
So the rest of my life starts as soon as this plane lands, I own it to her and to me. Somebody told me that, even when there are situations we can’t control, most of the time people make their own luck, well I’m going to make good luck for me and my own as If I were making muffins (Tom laughs every time I say muffin because I pronounce it /muh’fin/ also when I say squirrel /skuihrel/). By the way my muffins are quite good because I put lots of chocolate and nice calories in them… same recipe for life.

First of all is the IVF project, baking a nice baby for Tom and me so we can eat him/her with lots of kisses. Estella will be the responsible of this new SMA free healthy life and this new life will give us happiness to us as well as our family, this baby will be a new hope (like in Starwars… gosh that is geeky) and will have his/her own guardian angel looking after him/her… I bet Estella can make a very good eldest sister (she was always very bossy, as me and I’m the eldest too).
Also we are going to get those 100,000 signatures and convince SMA milk to help us with the campaign. We are going to make more noise than this Ryanair steward (he’s leaving me deaf… but I may buy a ticket for the raffle after all).
In a smaller scale I’m going to lose a stone, I’m going to start using all the wii games I have to make exercise (I have them all, zumba, wii fit, wii fit plus, my personal trainer…), I’m going to be the positive me that started working at Learning Disabilities a few years ago and I‘m going to stop saying why me and change it for a why not.
Above all I’m going to be happy again. 2012 starts as soon as we land…my diet maybe a few days later J

Whatever it takes to be happy

I have to trap this feeling before is gone, a feeling of redemption and hope bigger than me, bigger than life itself.
It's half past one in the afternoon. We are by the fountain, Estella's ashes still there, and floating in it's waters, the little toy Tom and I bought for her .
I am wondering how different today would have been if we had her, 3 Wise Men morning.
I sing Cabaret for her when a White dove approaches listening from a nearby branch.
Suddenly I see a gorgeous little boy, no more than 2 years old with his Mum running after a ball. The ball gets in the fountain and he reaches for it, and laughs and plays and I know he is playing with Estella.
Just before leaving he stops on his tiny feet for a second to look back at the fountain, he nods with a serious expression, is he saying goodbye to her?
Right after  an Irish Setter (exactly as the one I had as a child) comes and runs to the fountain, he is playing with Estella too...
and the birds sing, and the sky is blue and the air is warm and my Daughter is whispering in my ear, "Don't be sad, don't you see how happy I am?"

 Miracles are around the corner if you listen and look with your heart. Hand made miracles to suit your needs. Everyday stuff for some, signs for others. As my Dad told me once, whatever it takes to be happy.

MOVE LIKE JAGGER

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