IN THE NIGHT GARDEN

For a little girl who was only here for a little while Estella sure made some friends. One of the days I will remember all of my life is the day that Iggle Piggle from the Night Garden came to visit our little Tinker at Bluebell Wood.

I had been extremely lucky to come across a wonderful lady who had an Iggle Piggle suit and one Saturday she came along to spend an hour with Estella. She had fallen asleep and one can only wonder what went through her mind when she awoke to see Iggle Piggle standing by her bed. Iggle Piggle with his big red blanket and eyes that Estella stared at goggle eyed. She made her ooh ooh ooh face. She raised her little eyebrows

It was one of the last times I saw her beautiful smile.

Iggle Piggle came to her funeral a few weeks later and draped the big red blanket over Estella's little white coffin. Iggle Piggle waved her goodbye and gave us all balloons to release into the sky. Iggle Piggle skipped away from the funeral leaving us all laughing..and crying..and laughing

Imagine Estella looking down at that room. People sat there with tears in their eyes. Daddy and Granddad carrying in her coffin and on the back row a giant Iggle Piggle crying into a hanky. Estella would have laughed.A lovely sense of the absurd. Imagine the scene.

'And Who Are You ?'
'Yes - may name is Iggle Piggle....

She would have been a year old tomorrow.

I would be getting ready now to spoil her. There would be a party and my stupid theatrical nonense brain would have arranged some cartoon character to pop in to see her. I would have bought her a new dress and far too many toys. There would have been cake and a candle. There would have been disbelief that a year had passed.

There is disbelief that a year has passed.

She has not been here for over three months now and there will be no birthday party tomorrow. There will be no cards. there will be no wrapped presents. There will be no tales and no songs. The dearest treasure of my life has gone and will never have a birtnday.

Never Ever

Instead

We have bought her a toy wooden monkey. One of those that dances on a set of gymnastic bars.
We have bought her some Chinese lanterns. Lights flying to the heavens.

Tonight when it is dark we are going to go to the park where her ashes are spread. We will cast the monkey into the pond to shock the ducks and make Estella laugh. We will release our souls on chinese lanterns to try to float them closer to our daughter and we will sit

on a bench
in the dark
in the rain

In the Night Garden

and just maybe somewhere off into those trees Iggle Piggle will be watching.

It's time for bed Iggle Piggle

So much has happened in that year. So many laughs. So many tears.

And tomorrow she will be one year old.

She should have toddled
She should have sang
She shoudl have danced
She should be excited and breathless with anticipation of tickles

Instead she was breathless with SMA

And nothing will change that
And nothing will bring her back
And I will never hold her again

I get that
I honestly understand - I know.

But tonight I am going to sit In The Night Garden and watch the stars.

Tonight I am going to watch the stars

And tomorrow ?

We're catching the Ninkey Nonk and getting away for the day

All across the world hundreds of you will be

Lighting Candles
Tweeting and retweeting
Getting celebrity retweets
Making Stars
Writing SMASH SMA on your bodies
Releasing balloons
Singing A Horse With No Name and Puff The magic Dragon
feeding your kids far too much cake and letting them stay up later than normal

Whatever you do for the Tinker please please let us know and post photos

Please

I woudl be grateful if you would all raise a hell of a noise tomorrow.

I know you will

A year ago today i did not know any of you. And yet so many people have helped us with this whole journey. So many people who have gone so far beyond anything that I had ever thought possible.

Thankyou

I have met some amazing people

but

forgive me this

I met one person who was amazing beyond amazing. A gentle soul with an ironic lifting of an eyebrow who could melt your heart. A little girl who believed in stars and rainbows and dreams and Iggle Piggle and The Cat in the Hat and.. . .me

She believed in me

Thankyou Estella for making me a Daddy - if only for a moment

Happy birthday my absolute darling.

I'll see you in the Night Garden


the night is black
and the stars are bright
and the sea is dark and deep

someone i know is safe and snug
and they're drifting off to sleep
round and round
a little boat no bigger than your hand
out on the ocean
far away from land
take the little sail down
light the little light
this is the way to the garden in the night


She will be there waiting for me

In the garden in the night

because

Someone I know is safe and snug

In the garden

In the night

HOPING FOR A DREAM

So here we are three months to the day after Estella left us.

I know there is a lot that has happened in that three months.
I know that we ( and I include you in that ) have managed to get the SMA message out there.

We have raised thousands of pounds for various charities
We have managed to get over 15,000 followers on Twitter and Facebook
We have met with the Deputy Prime Minister who has started an enquiry into SMA
We have challenged one of the biggest drug companies in the World to have  a social conscience
We have received over 100,000 messages of support about Estella
We have seen SMA mentioned in school assemblies and placed into curriculums
We have had hundreds of people telling us they had never heard of SMA before
We have managed to be in a position to raise awareness about other diseases

There are days when I think we have achieved nothing but the list above tells me that in three months we have done a lot to raise awareness about SMA

but

That's not what today is about.

We have been lucky enough to win the support of some of the loveliest people that I have ever know, I dont think that is because of anything to do with us.

It's to do with Estella

So please - today - permit this Muppet Daddy one indulgence.

Today I'm not smashing SMA or howling about the ignorance of drug companies. Today I'm not asking for a petition to be signed or genetic testing for all.

Today I'm not campaigning about anything

Today I am back  there in that room three months ago.

We lay her on her bed and she watched an episode of the Night Garden.
She smiled at Iggle Piggle.

but something was wrong

and we knew

And we placed her in her Mummy's arms and I knelt by their side and I held her hand and I looked in her eyes and all we had ever hoped for and all we had ever dteamed and all we had ever wished for in those long lonely nights came true

It came true

She told us

She told us with her eyes and her little hand that held my finger and her troubled and tormented breaths. She told us with the machines and the numbers and the bleeps and the sounds and the looks of Nurses who hoped that we would not be foolish and start to make the wrong decisions

and in the greatest blessing I have ever known Maria and I shared exactly the same thoughts at exactly the same moment

and we knew it was time to say goodbye

It was time to hold my breath and say goodbye to my daughter

We took off her mask and she looked at us and we kissed her and we held her and she left us in total peace and without pain and with all dignity.She left us with her breath on Maria and holding my hand. She looked into our souls and her eyes said cheerio

It was a beautiful death

And now three months on I am back in that room again.
I am living that day and that night and the time I sat by her holding her hand and reading the Cat in the Hat
and singing Puff the Magic Dragon

and saying goodbye

Goodbye to the wisest , kindest , most beautiful soul I have ever known. A little girl who has inspired so many of you to amazing acts and beautiful moments.Goodbye to my little daddy's girl. Goodbye to my Estella

I can't feel her anymore

For a few weeks there were signs. There were elements of nature and happy coincidences and a glow that pervaded so many of the dark moments. She seemed to be everywhere.

I can't feel her anymore

It could be that she has moved on now. it could be that I am not deserving, It could be that senses numb and life moves on.

There is not a  single moment my little Tinker when I do not miss you with all I am and all I will ever be. There is not a single moment when I do not think of your beautiful little face and how weak and innocent and wretched your tender body became as all movement was taken from you. There is not a moment when I will ever forget holding you in my arms , rocking you , with a  motion that would calm the world, There is not a moment when I will ever forget your eyes filled with mischief as you snuggled into the big bed.Cheeky Monkey.

There is not one moment

I can't feel her anymore
I no loger have signs

and maybe , just maybe - that's because I never did. Maybe there is no such thing as signs . Maybe all there is is the complete and utter devotion and love and happiness that that little girl brought into my life. Maybe there is no need for signs. Maybe its all about the awful and permanant reality that I will never see her again.All thoughts and memories and desires melt into that one hard fact.

That I will never see her again

Except

Now

If i close my eyes and I open my mind then every one of those incredible moments comes flooding back. Every heart rending night and every beautiful day before we were told thar she was fated to die. The pride as we pushed her pram, the bath times , the blanket wrapped moments, the fun clothes and the eternal joy of simply holding her and rocking her.

I remember her lay on my chest one evening as I sang Moon River. She fell asleep and I looked up seeing Maria watching us. She said that she would remember that moment all her life. Days later we were told that Estella would not be staying with us. I remember that feeling as I sang Moon River and just for five minutes I was a perfect Daddy - just for a moment

So please permit me this indulgence

I am going to spend tgonight thinking of my Tinker and remembering every smell and sound and touch

and maybe

Just maybe

If i am lucky - she will come back for a moment. Concrete and eternal into my mind Maybe when I sleep at night I will see her in my dreams ?

Then I will see her again

Then I will feel her again

That would be fair wouldn't it ?

That would be fair.

That would be kind

That would be right.

I miss you Estella,

Please

TIME TAKES TIME TO PASS

When I think of Estella now it's usually something related to the SMASH SMA campaign.

I think of what's happening on Twitter or Facebook or sit trying to think how to get the petition moving. She has becom something gigantic and immense. Estella Star the baby with the thousands of followers , the baby who inspired celebrities to tweet and organisations to donate support and money.

 The thunderstorm power of her campaign and the amazing spirit , generosity and compassion of her supporters. Estella Star -shining super baby and kick SMA in the nuts campaigning angel. I write about her power and her spirit and her dignity and her passion and her wit and her charismatic charm.

Estella - an icon.

And then I remember

It's two months ago today since she died in her Mummy's arms.

 Two months since I held her for the last time and looked into those beautiful eyes. Two months since she watched the Night Garden and then told us that she needed holding and helping and releasing. Two months.

  And she was so oh so very little
And her legs bent in a froggy style
And she had little chubby fingers
And she had my nose - poor thing
And she loved watching bubbles
And she sometimes got awful wind
And she was a cheeky monkey
And she could squeeze your finger
And she watched balloons
And she had a haloween costume
And sometimes she slept in the big bed
And she had a birthday every month
And when she cried there was no sound just a single tear

Just a single tear and a look that would melt my heart.

People say I am brave and they think what we are trying to do is amazing. I always say its just what I promised her on the day that she died.

  But Once

I was walking into work at 7 in the morning.

My office was at the end of a long corridor and because I was so early there were no lights on. I had to walk very slowly with one arm outstretched trying to make sure I did not stumble. Total darkness and a foundering arm for stretching ahead. It was a couple of weeks before Estella died and as I walked down the corridor I thought of her. I thought of the journey she had to make. The journey that she had to make alone. I thought of her without Daddy and Mummy and her toys walking towards darkness and I thought that she could never turn and never come back and never come home.

All alone.

And I howled inside

What kind of Daddy can not hold her hand and walk with her and protect her and help her? What Daddy would let her walk down that corridor and not move mountains and seas and storms to help her come back home ?

And as I stared into the darkness I knew that here would come a day when I thought of my tiny darling walking that impossible walk.

Well that's today

Just a single tear and a look that would melt my heart.

I love to think of Estella now free of that tired body. I love to think of her running and dancing and singing and laughing But there are days when I see her as a 8 month old baby trying to toddle. Trying to walk down that dark corridor with her arms stretched out. Stretched out hoping to be picked up. Hoping to be cuddled. Hoping to find her Daddy.

  And I can't be there

So instead I try to hurt the dreadful disease that hurt her.

So instead I stare at clouds and wish for rainbows

So instead I think if her very day.

So instead I try to remember her not as Estella Star smasher of SMA but as my little Tinker who I love now as I loved then and will love tomorrow. This corridor us very very dark but Tinker is down there and if I keep walking

Just maybe I can pick her up and hold her and whirl her around and tell her

That I absolutely love her And that maybe one fine day

One fine day.

If I keep walking

IN THE HOUSE

I have recently been touched by a campaign that has started to raise awareness of Spinsl Muscular Atrophy (SMA) and wanted to bring this to your attention. The campaign is called SMASH SMA and is dedicated to raising awareness of a disease that is the number one genetic killer of children under two years of age. One in Forty adults carry the gene that causes SMA and there is no cure for the disease. SMA came to my attention because of a little girl called Estella. Estella died last November aged 8 months. Since then her parents ,Tom and Maria, have made it their mission to raise awareness about the disease. Research into a cure is well advanced and there is hope that a solution will be found in the next three years. For the moment the parents are trying to raise awareness and to get screening for the disease. A simple blood test tells would be parents if they are carriers. With this in mind a petition has been started on the government web site and this has raised over 2,000 sigs in 3 weeks. Could I please ask if you would look at the SMASH SMA website for more details about the disease and the campaign. Www.smashsma.blogspot.com I think you will find the story compelling and persuasive. It is very sad but also offers so much spirit and hope for the future. In coming weeks the call for SMA prevention is going to become more and more pronounced. I would ask that you contact these parents to express your support for their awareness raising campaign. Anything that can be done in your own constituency to raise awareness would also be wonderful. This disease kills babies. It is preventable and it will one day be curable. I would like to be assured that my local MP is aware of the disease and dedicated to solving it. Tom and Maria are available at estellameansstar@gmail.com Thankyou for your attention. I hope you find time to go and learn about Estella. You can make a difference.

THE FOUNTAIN AND THE BALL

We made it through the festive season. Don't ask me how. They always talk about One Day at a Time and I guess that's what worked in the end.

The thing that people find very hard to believe or understand is that even in these horrible days and nights there are still bright moments. I always imagined that life without Estella would be a single note. One long chord of despair that never fluctuated or changed. I could not have been more wrong. Life without Estella is a classical piece of music - at times mournful , at times spirited and at times a mighty convulsion of unleashed passions.Joy and despair. Despair and joy.

Then there are the moments

We went to her fountain yesterday. It is beautiful situated in the park where we got married under palm tress and parrots. We went to say goodbye as we are heading back 'home' now. It is a place of beauty but also a place of reflection and sadness. I talk to her there like the crazy people I saw in cemeteries when I was young. I tell her whats going on and how I feel and how much I miss her and love her.

We took her a toy and some sweeties. She never tasted sweeties.

Yesterday was hard. Wrenchingly hard. It was the Spanish equivelent of Christmas day and all the children were riding their new bikes in the park. Everywhere you look life goes on with families who seem to have perfectly happy lives. We wander through them like timeless ghosts who should already have left the party. What they have we had. What they celebrate we fear. Footsteps in the sand.

We sat by the fountain. It has been turned off for the winter and Estella's ashes are just visible inside the dust and the sand where the water flowed. I look at them and see the little girl that I held and the eyes that shone like forever and I see the dust and the grey and I sometimes feel that is all that is left. We are but dust. The chubby fingers, the rosy cheeks , the liquid , loving eyes. Dust.

We sat down and a small boy - probably between one and two years of age walked by with his Mother. Strikigly blond - unusual for Spain. As always you may take what happened next as crazy thoughts from a Muppet Daddy whose eyes are blurred with too many tears or you can take it as fact. I would not have believed it either - not before I met the timeless soul that is Estella.

He turned and looked at me. That happens a lot because I look so un-Spanish. Nothing strange there. Then he threw his small ball into the warm air and it went straight into the centre of the small fountain.With no fear he put his leg over the cement ridge and climbed in to collect the ball. the ball that lay exactly on top of Estella's remains. He had thrown the ball to her and now I was watching a perfectly blonde lad striding out of the stone that surrounded Estella. It was a moment of re-birth and achingly beautiful. From the spot where our daughter rested ran a child healthy and vibrant and cheeky and all smiles. And that's when he did it. He turned and looked back at the fountain. Stood perfectly still and nodded at the monument. Then he waved at it and ran off to play.

He bid her goodbye

I sat stunned and silent.

A massive park
One small boy
One tiny ball
Onesolitary heartbeat of a  moment
One echo of immortality

And will she walk, and will she run and will she sing and will she dance?

And will she play ?

She played.

So that's how we get through some of these moments. The same way we did when she was alive. Estella sends signs when we are at our lowest. Estella is still looking after us.Estella always will because she always did.

And will she laugh and will she cry and will she remember and will she breathe the deep majesty of life and time ?

And will she play ?

She played

People think it is hard for me to see other children everywhere. It's the opposite. When I see other children I see the release and the joy and the pleasure that Estella never knew. I see them enjoying life and that does not make me sad. How could it ? If children being happy made me sad then I would never have enjoyed Estella.

And will she watch and will she listen and will she hear and will she clap ?

And will she play ?

She played

We made it through Christmas and New Year because our daughter is still here. She was there in the Firework sky on New Years Eve. She was there in the moments when we sat with her Grandparents in silent reflection and she was there in the park yesterday calling to a soul that could hear her to come and play ball.

If you do not believe me that the little boy could see Estella or feel her spirit then I feel either sorry for you or glad for you. Sorry because maybe you have to have loved so deeply to understand that this is true - glad because maybe you have to have lost something very very special to realise that there is no such thing as loss at all.

And as we go home and leave her in that fountain, in that park , in that town, in that country I do not weep becuase of loss or distance. I do not weep because of death or regret. I do not weep because of the unkind lost years.

I weep because of a little boy - and  a ball - and  a little girl they call Estella

We are going hoime now

We will be back one day

We will see you again

We will retuirn

We are going home now

Where Estella is waiting for us

TIME NEVER CAN ERASE

It comes to something when hearing a song by the mighty Val Doonican can make Muppet Daddy start crying about the life not led


From pigtails to wedding veils
From pinafores to lace
And in between are the special years
Time never can erase

From play toys to college boys
From little girl to wife
And in between are the special years
You remember all of your life

The special years are filled
With sweet promises and pain
But love will never taste
Quite so wonderful again

So slow up, don't rush to grow up
You'll be a woman before long
So stay awhile in the special years
Their magic will soon be gone

Just stay awhile in the special years
Their magic - will soon be gone...

SMA - OUR WAY OF THINKING

This isn't an entry where I am writing about Estellas as such. It's more a sort of FAQ for the type of questions I tend to get asked the most.

If you want the whole story in two minutes then this video tells all

http://www.youtube.com/watch?v=34RmmLWhr80

Remember please the only expertise or experience I have is the events that happened over eight months last year with Estella. These are well documented. Much of what I say may be wrong and I am open to new ideas but this is where I stand today.

The most common reaction when people hear about Estella and our experience is that they have never heard of SMA. This is not just people in  the street it is health professionals , midwives , carers , - so many people who have never heard of the disease.

So that explains the first simple philosophy of the SMASH SMA campaign

IF SMA IS THE NUMBER ONE GENETIC KILLER OF BABIES AND 1 IN 40 OF US CARRY THE GENE THEN WE HAVE TO ENSURE THAT EVERYONE HAS HEARD OF IT.

This is the awareness raising stage. We are not doing a bad job here. We could do better if we really went for it with the media but I have explained my thoughts on that in another blog SMA AND THE MEDIA. Put simply we do not want this to be a half page story about us and a little girl who died. The story is bigger than that and we will make more of a commotion and have more impact if we avoid the obvious routes. I am convinced of that.

The second thing we want to do is to try to make sure that what happened to us does not happen to you and to others who are becoming parents. This is linked with awareness raising but it is also to do with PREVENTION - its a petition to the UK Government to introduce testing for SMA for all.

This is the wording

SMASH SMA Free screening for Spinal Muscular Atrophy

Responsible department: Department of Health

Spinal Muscular Atrophy (SMA) is the number one genetic killer of babies. Our daughter, Estella, died aged 8 months from this awful disease. 1 in 40 people carry the SMA gene. We want the government to ensure that every woman is offered free genetic screening for this disease in the same way that they are currently offered screening for cervical cancer. This one off blood test should be provided for free to all women.

http://epetitions.direct.gov.uk/petitions/25997

Please sign the petition and get everyone you know to sign the petition.

The thinking behind this is simple.

If 1 in 40 carry the gene then all women need to be told that they could be carriers and that a FREE test is available. The test is a simple blood test. If they are carriers then they have this information and can ask for any future partners to be tested. Remember it needs both parents to be carriers to have a 1 in 4 chance of an SMA baby.

If both potential parents are carriers then they may wish to examine IVF as an option to ensure that their child does not have SMA.

There is a test that can be done when the foetus is 10 weeks old that identifies if the baby has SMA. Obviously this introduces moral, ethical and religious debates. To be honest we want to stay out of such debates as we believe that parents have the right to make their own choices. Other tests are done at various stages that identify significant possible defects so why should SMA be any different.

As I said I do not want to get into the debates about 10 week testing which is why we are petitioning for a simple test that means people do not have to get to that stage. What I will say -and this is my personal opinion - is that knowing what we know now about Estella's life we would certainly have gone ahead with having her and knowing her. She was never in pain or distressed and was very loved.

Hope that clarifies the petition, We do need 100,000 online signatures which is an unbelievanle amount. Every single hurdle that can be placed is put there to ensure you do not get them but we have some big actions in the pipeline to ensure that SMA profile is raised and that we do get the sign up.

The third way that we are trying to help involves raising research funding.

From the start we did not want to raise money for Estella - we thought that this was a far bigger issue. There are fantastic organisations out there and there is research already taking place. I believe that if we did nothing the cure for SMA is three to four years away on the horizon. I have a simple philosophy if Estella can bring that cure forward by one day then there will be less children and families who are touched by SMA and some of the children who have SMA already may be cured or have their lives considerably improved. Too late for Estella but what a legacy it would be if she and her story brought that cure closer.

We therefore support anything and anything that raises funding for SMA. There are many amazing organisations out there - all you have to do is google Spinal Musculat Atrophy and they pop up. An example of the success we are having is that the SMA milk company have contributed £ 25,000 to one of those organisations ( the Jennifer Trust ) and there will be much more in the pipeline. There is a seperate blog entry on this.

The link below will take you to the Jennifer Trust home page. The reason I include them here is that they helped us when we needed them. If there ar any other organisations that would like their link here then please let us know at

estellameansstar@gmail.com

The Jennifer Trust are available at the link below. They also have outstanding information on what SMA is. Its where we got our grounding from .

http://www.jtsma.org.uk/

So that's awareness , prevention and research funding

We hear every day from parents who have children diagnosed with SMA. What I would say is that every case is different and every journey will be different. We will gladly talk about our own experiences and we will give any amount of time needed - but they are our experiences. They are documented well enough on the other pages here but please believe me I answer every single message we receive asking about SMA and Estella.

There are three ways we are trying to keep people up to date.

One is our twitter account. You can follow us on @estellastar1 - I answer evrey single DM and follow people who follow us. There are over 10,000 followers which makes this the single biggest SMA related Twitter account by far.

Two is our Facebook account - look up Estella Meansstar and you will find us

http://www.facebook.com/profile.php?id=100003101507661&ref=tn_tnmn

Third - you are reading it now - there is an even better blog available though from Cuddly Mummy
which is called NO MORE ANGELS

http://estellasweetman.blogspot.com/

I used to be very cynical about social media. I now see that it will help bring about a cure for SMA. We have had amazing celebrity support but also a number of people who have made #smashsma their mission. We have met some wonderful people on there. Intelligent and resourceful people who did not know Estella but fight for a solution to SMA every day. They know who they are - they are exceptional.

On a personal level I have to mention BLUEBELL WOOD as they were the hospice where Estella lived her last two months. I have said that fund raising is a seperate issue but if anybody wants to send any funding in their direction then please read the story below and send them zillions. Estella had a childhood because of Bluebell Wood - simple.

http://www.bluebellwood.org/estella.php

Last of all - you. If you are reading this then I thank you. You are obviously well into SMASH SMA mode. If you have any ideas let me know.

Thanks xx