EVERYTHING I OWN

On Sunday it was six months since Estella passed away. People were very kind as always and we had thousands of messages and photos and balloons and candles. We spent the whole day keeping up to date with all of the very kind support.

How different to the dark November Sunday evening when we sat by her bed. She had died that afternoon and we had bathed her and dressed her for the final time. If I had to choose one moment from the whole of my experience with Estella that will live with me forever it was watching Maria bathing her little body and preparing her for her final journey. I have never seen anything as heart rendering and sad. I would give the world not to have had to see that.

The reason I am trying to smash SMA is because I do not want other parents to be there in that room holding their child for the last time. Watching the water wash over legs that can no longer splash and eyes that can no longer see. The dearest person I have ever known silenced and stayed by the most evil and damned of diseases.

I sat by her bed that night in that cold cold room and read her her story book and sang her her songs and then I got down on my knees and I apologised. I apologised to my little Tinker that there was nothing I could do to have saved her and there was nothing I could do to protect her and comfort her. There was nothing I could do.

As a Daddy that makes me feel weak. As a Daddy that means I failed. I failed because the most hideous monster that could exist came to take my daughter away and nothing I could do could win that fight. I know I tried but I was nothing compared to Maria and the amazing 24/7 care and love that she gave Estella. I could not save her. And as I knelt I promised her that i would try my very best to make sure that people heard about this disease and I would not rest until it was something that people no longer needed to hear about.

Six months on and awareness has been raised. We are putting politicians and celebrities and scientists in the same room and moving towards solutions.

That did not matter last week though.

Last week we went to the park in Spain where half of Estella's ashes sleep in a lovely fountain. We took her toys and sweeties and a balloon and sat and had a few words. A family came up, as always, and took the gifts away for another child. For another time. For another place.That felt good.

Sat there feeling warmth on my skin and cool breeze in my hair I thought of Estella and how she had always seemed to be so wise and so knowing. I looked at other children and for a moment I wondered why she could not have had more time, more experience, more life. I know the philosophical debate that she lived a full life and one without pain and that she was very loved but she deserved more- she deserved so much more.

Six months on and life is starting again. The shadows of the night are not always laced with fear and there are still rainbows and there are still moments of beauty and peace. The world is an amazing place and I was gifted for a short, too short, while with the most perfect little daughter. Her little body did not work. Her little mouth could not speak. Her little legs could not run

but

Once when I was sat by her side at three in the morning - trying to think of reasons to go on I sat with my head bowed. I looked up and saw that she was awake and I remember one thing.

Her little eyes could cry.

A single tear ran down her cheek and she looked at me with such love and such care and such concern. She was crying because I was sad. She was crying because I was crying. She was longing to cuddle me and make it all right.

Last week when we sat by her fountain Maria said to me that it was OK to cry but she tried her best not to because if Estella was watching she may think that we were crying because we were annoyed at her or diasppointed that she left us - and that broke my heart.

Wherever she is - six months on - wherever she sleeps - wherever she dreams she has to know one thing ... My darling little Tinker , I could not have been more proud of who you were and who you are and who you will be. No Daddy ever had a daughter so beautiful, so wise, so perfect and so capable of love.You came here for a reason little monkey and if that reason was to bring SMA to an end one day sooner and to ensure that other babies live and that other Daddies dont cry then all is fine and all is fair and all is peace.

Adn if I tell myself that then I feel Ok
And if I tell myself that I dont cry
And if I tell myself that then I will SMASH SMA

Even though its never - never- never fair.


I miss you with every heartbeat and every breath. I love you with everything I am.

I could not be prouder of the changes you are making to this world.

Maybe I failed but I know one thing. Tinker didnt think so. She forgives me

You wonderful people are helping to keep her spirit alive.

Thankyou

Six months on. What do I think we have achieved ?

Love

Just love

And I would give anything I own

Give up my life, my heart, my home I would give everything I own

Just to have you back again
You taught me how to love

What it's of, what it's of

You never said too much but still you showed the way

And I knew from watching you
Nobody else could ever know

The part of me that can't let go
And I would give anything I own

Would give up my life, my heart, my home

I would give everything I own

Just to have you back again
Is there someone you know?

You're loving them so

But taking them all for granted
You may lose them one day

Someone takes them away

And they don't hear the words you long to say
And I would give anything I own

Will give up my life, my heart, my home

I would give everything I own

Just to have you back again

Just to touch you once again

Just to speak to you - words again