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
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,