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Monday, 9 January 2012


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


  1. I just read that and am amazed at the positivity, its truly amazing. It's a short 8 weeks and you've coming so far, realised so much and have achieved many things already. Estella tink would be so Proud, as am I, of what you've done. And I am yo say I've learned so much too, in this short time, about SMA, about humanity, how people are so generous, and kind, and their altruism.... In times when we hear nothing but gloom. I just wanted to thank you. Thanks for sharing, for raising awareness, and many thank yous, for sharing your journey and I hope you continue to do so

  2. Your attitude, and Tom's, does you credit. What you have done already is remarkable, and if you can do what you want, you will be another brilliant star along with your Estella. Please feel the love...

  3. I love reading your blog and Tom's blog. You guys are such an inspiration to all of us, I'm so amazed at your strength and courage, so much so that you have inspired me to make my own changes this year.
    Personally for me I'd like to say thank you for sharing all you have shared with us all. I have been deeply moved by things I've read, heard and seen. You are both amazing people who just inspire us all to do more. Lots of love to you xxxxxxxx (Poiplekitty Tink Army x)