Monday, February 13, 2012


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


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



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,



  1. Please keep hoping, one day you will feel her again and maybe like me you will see her in a dream, toddling across the floor with a big smile on her face. You see, now she can run and play, she is whole again. Love and Light to you and you family.
    Andy's Nana

  2. I cannot begin to fully understand your loss or your grief.
    I am very lucky that in my life ,so far, only one person who really meant everything to me passed away.
    I can honestly say that the pain diminishes, that although the signs maybe harder to spot, your baby is with you and will remain with you always.
    She is with you through all your campaigning and she lives on in all your efforts and in your heart.
    She is immortal, as she as held in your mind and in your love.
    Estella Star, your little Tinker is at peace and in time this terrible disease may be conquered because of her.
    Be Strong.

  3. You will always have the support of your tweeters! Enjoy this day and remember her to the full. What a time to reflect and look and what you have achieved in a small amount of time, well done, be proud and good luck with the future. SMA will be defeated!

  4. Am so so sad that she is not here on earth with you and Maria. I wish so much that every parent, every person who has lost someone can feel their loved ones again, but we have no way of knowing how or what that means and I cry for your wistfulness and your pain and I am so sorry that there is no way of making this happen for you. She is gone, but she is not gone. Whether you can feel her or not, your tinker will always BE. Time cannot be rewritten. This is all part of grief. And you have done so much in her name. Estella, beautiful Estella, we don't know you, yet we know her name, your lovely daughter. My thoughts are with you.