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Friday, 30 December 2011

NEW YEAR'S RESOLUTIONS

Last year I was massive, I even didn't know for certain if Ryanair would let me fly to see my family for Christmas because It was very obvious I was very pregnant... they not only let me flight then but later on January when I went back home to give birth to Estella three weeks after.

I remember New Year's eve as one of the happiest days that year, so full of promise in the future. We had a party at our flat in Spain, the only night I can be the hostess, and Tom and I bought far too many sweeties, and one year more the vegs where cold, but nobody would tell me because is very bad taste upseting a massive, hormonal pregnant woman. My resolutions were simple, 1. Become the best mum I could possibly be 2. Loose all the weigh I got before the Summer 3. Stop getting bothered about the future.

In february Estella was born, in April we went back to Uk, later that month She was diagnosed with SMA and although I tried to deny the evidence my time with her was running out. In June I had to rush Estella to ICU where we spent the next 2 months... no need to say my second resolution came to nothing thanks to the hospital food. In September we went for a week respite to Bluebell Wood that became two months. In November Estella left, leaving my lap and my heart empty, and she took also my 3rd resolution because ever since all I wonder is how to face a future without her in it.

I have spent all Dicember trying to be "normal", trying not to be an object of pity, trying to smile as much as I could, trying to be the best mum I could be. I have learnt lots about my strenght and about people's generosity, and I keep on learning everyday to smile because it happened instead of crying because is over as Dr Seuss, Estella's favourite writer, said. Some people would say that that mania of me to talk to her pictures, putting fresh flowers near her, lighting candles, burning incense and singing "Cabaret" everytime I feel sad is insane and that I'm in denial, maybe they are right, but you see? there's no word for a mother who loses her child because she is always a mum, and that is my way of showing it.

2011 Started with Estella inside me, in my womb and it finishes with Estella inside me, in my memories and my heart. I can't answer about how this year was, I always say the same "strange" it gave me the biggest happiness and the biggest misery and in betweens good and bad days. A part of me wants it to be over and another doesn't know how to let go the one and only year that my Star, mi Estrella, saw. I am not a very religious person but every night I say my prayers and they are always the same, Let be my family healthy, Let Estella be happy wherever she is and if possible send me a sign every now and then and let me hug her again when I die.

In the meantime I have to keep on living, because i promised her and because I wouldn't be a good mum if I gave up in the future, that is the best present for our children (even when I'm childless)

So here there are my New Year's Resolutions:

1. SMASH SMA and if I can't this year at least kick it in the balls (sorry)
2. Look at the Future without fear but with hope, getting the best of the gift of live.
3. Loosing the weight I piled on this year... (this is the first resolution that will go down the gutter)

To all of you, have a happy 2012, full of adventures and dreams, and if you have 30 secs please keep on signing the petition so I can futfill my first resolution

All the best

Estella's mum

Monday, 26 December 2011

... and winter came

We always said Estella was a Summer child so it was obvious she wouldn't stay to see snow.
She was born in Seville, where oranges grow wild on the streets and all you can smell in the Spring is orange blossom. The day she came into the world was sunny, and warm. It was a massive thing as she was my parents' first grandchild and they had been working more than 25 years in the hospital she was born, she was everybody's child. Presents, flowers, embroided bibs, cards... you name it and she had two :)
We had 8 weeks of happiness, 11 days of future in uk, and then the diagnose, and then the choices. And we chose, I chose. To live Estella's life with a smile making each day count, to start writing a blog full of hope wishing for a miracle, to grab each second of her life and make it meaningful. In that way this blog was born as Estella, happy.
I remember in the hospital the jokes with the consultants "C... are you going to section me today?" because most people thought I was in denial as I wouldn't stop smiling, even once I had to explain that was my choice as I would have time to be sad for the rest of my life.
And one November afternoon the rest of my life arrived. Estella died in my arms while I said to her how much I loved her. 8 months 19 days of wisdom, happiness, goodness. And I learnt I don't have the rest of my life to be sad, I choose to keep on smiling to keep on going. The days of fighting for my daughter's life are over but not the days fighting for other kids' lives, and their families, and my own family. My parents who lost their only grandchild, my husband and myself.
I choose, as I did that time months ago, love and laughter to honour Estella's life and all she taught me, and, once again, there are dear friends who want to section me because they think I didn't come to terms with the lost.
I did and I choose not to loose the smile.
This blog doesn't intend to equal Tom's, he really can write, I'm just a mum trying to make sense of the nonsense of SMA.
And I believe we can win the war. I believe we can SMASH SMA. Maybe this deserves to get me sectioned, after all one of my favourite movies is One Flew Over the Cuckoo's Nest.
99,233 signatures to go x

Wednesday, 20 July 2011

Guess who's back, back again

On the 16th of June I was supposed to become an angel…. Good evening world I’m Estella and I’m still a bugger (did I spelt it right?)
17 days intubated in ICU, 3 almost death experiences and another 17 days in HDU took me where I stand now, almost home. Tomorrow I’ll be going home for the day and then for a whole 24h, and then the D word, the one no doctor nor nurse nor physio dares to say.
I’m taller now and bigger, 5 kilos and 370 grams of stubbornness and cheeky smiles. I talk about home but I don’t remember much to be honest, I remember mummy and daddy’s big bed, the big 42 inches TV and that’s about it.
For somebody who hasn’t been in hospital before this may sound funny but HDU is the closest to home that kids like me have sometimes. I made lots of friend here, I’m spoilt rotten by everybody, I have long baths and still go to the park to check on my feather ducks… I still prefer the ones with the lights though. This is a happy place where miracles happen everyday, kids are kids and are strongly grabbed by the ankles to avoid them from becoming angels.
My grandparents are also here, they have been here all the way, like mummy and daddy, till I felt better and learnt how to breath by myself again.
From this month in hospital I got a Vpap machine to sleep with and a feeding tube which is the best invention since the smarties… not that I know smarties are good but that is what people with actual teeth say.
Although I could eat by myself I prefer the NG tube, a device worth of Homer Simpson as you are fed without having to swallow nor suck. Mummy is giving me little tastes so I get use to eat normally again, but to be honest I cant be bothered. Also I discovered I don’t like Greek yogurt nor orange juice but I would love a bit of mummy’s chicken pesto sandwich… I know I know you will say I have no teeth… yet
Anyway from now on I’ll try to write more often as I intend to live a long time, just for the sake of ruining statistics or for being in Science books or just for the hell of it.
I’m going now, tomorrow will be a big adventure and I need to be rested.
Thank you Sheffield Children’s hospital for each of my breaths, for painting a smile on my family, for returning me to my mother’s arms and giving her back her hope on a brighter future. For kidnapping angels from Heaven everyday and make this life worth to fight for

Thursday, 2 June 2011

Today could be the best day of my life

Today was a really good day, I had two baths and I drank my 5 bottles, I played with my friend zack at Weston park museum. Mummy helped me with my physio and daddy played lots with me after work. He also took pics of me in my new superbaby pijamas. The sky was blue and it was warm so I didn't have to wear my socks. I didnt stop smiling the whole day. What else can I ask for? except For many more days of good health to enjoy like this? Life is good indeed, I even saw real ducks. Until now I thought ducks had lights and were made of yellow rubber like the ones in my tube, but instead they have feathers... I like feathers but I don't think I would enjoy having a real duck in the bath, I would have to feed it bread and it would make a mess... And I'm the only one entitled to make a mess, I don't want to be shadowed by a duck!

Help me to have many good days, cure SMA
www.justgiving.com/estella-sweetman-lopez

Wednesday, 1 June 2011

The God of Little Things

Mummy wrote this poem a few weeks ago
The god of little things

You are blind to my day to day miracles
You ask for proof as thomas, hurting himself with meaningless blood 
You want something grand, that makes stop the world, stop gravity, men's laws... And you say that faith moves mountains.

But mountains my son are made of sand, so are your hands and your dreams.
Atoms, protein, cells, small things invisible and magical
I offer you daily miracles as the touch of her little hands on your chin
Her smile that stop your tears from falling, her wise eyes that worship me in all my Magesty small as I am.
You ask for years and I give you a lifetime, a meaningful second, hours of love that will stay after the skies fall.
You ask me for certainty and I give you the freedom of the minute you live in 
You ask me for answers but I give you the wonderment and the thrill of the unknown in all her beauty
She moved her hips today as the waves, as the hours as the rocking of mother earth in her womb
You asked your questions and I gave you my answer: love, human, imperfect, magnificent, breathtaking love, for your seed, for her earth, for life with it's everyday tiny miracles

I'm the god of little things

Maybe if you help to find a cure for SMA the world could save my mum's bad poetry :) make yourself a favour and donate
www.justgiving.com/estella-sweetman-lopez

Tuesday, 31 May 2011

manic tuesday

Hi there!
Today has been busy, very busy, I would even say hectic if that word wasn't too posh for a baby. This morning I went to the Neurologists Dr Baxter, really nice guy. Mummy couldn't understand a single word of what he was saying because as daddy said he talked proper English and mummy has a mixture of Yorkshire with Manuel from Falwty Towers. Anyway after lots of translating the conclusion is that I'm doing pretty well.
Also I went to the Physio, Helen, Gina from the Helena Nursing Team also came. Gosh I love those mirrors they have and that glossy paper and that they played with me almost for an hour... for some reason they kept stretching my legs but I liked that too. Mummy was very proud of me, I could see that in her eyes and her smile everytime somebody said how pretty I am.
After physio mummy and I went for a walk and after that we talked to grandpa, well mummy did the talk and I did the noises. I'm very excited because they will see me in 3 weeks and that only means one thing...Helium Balloons!!
when daddy arrieved home I  was comatose already, I didn't even have a bath tonight. I just lied in my hammock watching Britain's got Talent. It is true what mummy says that life is just a full circle, when you are tiny like me you enjoy noisy and colourful stuff on tv to keep you awake, like babiestv, when you are elderly  you enjoy noisy and colourful stuff on tv to keep you awake, like Stricktly come dancing.
I think I have a wise old person in me and every now and then it shows when I look at my parents, is when I tell them not to worry, Everyday is precious and you only have to see it through my newborn eyes to understand that.

If you want to cure SMA just donate to
www.justgiving.com/estella-sweetman-lopez

Monday, 30 May 2011

Twinkle twinkle little lamp

Today mummy and daddy took me to ikea as it was raining and I'm getting far too big for my Moses and my bathtub. At first I didn't get why that commotion, so many people trying to buy furniture in foreing that you have to make yourself and there are always too many pieces left (that's what mummy says). And then the light department, I absolutely adored it! It was like being in space, well at least as I imagine space, an infinite room full of low consumption bulbs. When I grow up I'm going to be a sales representative for tiffany's :)
If you want to donate to the Jennifer Trust
www.justgiving.com/estella-sweetman-lopez

Sunday, 29 May 2011

What do you do so they like you...the twitter junky

Mummy is trying to get people to know about my blog so she is trying twitter and facebook. It is weird how people you don't know suddenly become so important... 4 followers made her day. My day was made by the fact that daddy is home and I can have a nap on him, he doesn't seem to worry about me ruining his t-shirt

Saturday, 28 May 2011

What is that coming over the hill...

At first I thought it was the pipes, a high speed train, a tsunami... Then when I saw my mum's eyes all bloodshoted I realised... That's just daddy snooring!

good evening world

Today I have tried to improve my blog, I didn't want my mum to put that picture of hello kitty but my mum is bigger and knows how to use the internet better than me... it's the sort of picture that can report mummy to social services or send me to a psychologist when I grow older.
I had a moral dilemma also, probably my first... if you are half British, half Spanish, who do you support Barcelona or Manchester United? after a lot of thinking...around 90 minutes, I decided that whoever wins :)

Friday, 27 May 2011

3am

3 am and I wet mummy's bed again... Nobody's perfect :)

today I'm writing my first post

Hi!
My name is Estella and I may be the youngest blogger in town with 3 months 3 days and 10 hours in this world I find amazing.
The reason why I'm calling my blogg no more angels is because is a term used for babies like me, with Spinal Muscular Atrophy Type I. Well in my case, I dont want to be an angel, I preffer being a buggar, a garden pixie as mummy call me. I want to have the time to learn from my mistakes and try all the ice-creams available, and have a pet, and not clean the pet... well all the things that normal kids do.
My famely and I are very hopeful a cure will be found but funding is needed as is a quite rare disease.
Can you help me?
From now on my bloggs will be about happy normal things, I promise... I don't want to depress anybody, psychologists have enough funding already :)