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