Saturday, December 24, 2011


As a child I always used to love snowglobes. I remember having one that had a miniature Dickensian village inside. I would shake the crystal and then press it close to my eyes to watch the snow fall on cobbled deserted streets. Cold crystal echoing beauty into my developing sensitivity. One of my favourite Christmas memories. I would hold the snowglobe so close and watch the swirling maelstrom settle into a beautiful and unique restfull panorama. Because I have such bad eye sight the globe would be held so close until all the rest of the surrounding world became the blur and there was nothing but the snow and the miniature and the dreams. The reality was the storm. The world danced by.

During the last few months that snow has been swirling around and around and all of my focus has been on the thousands of snowflakes that made up our journey with Estella. So many messages and signs and hopes and forebodings and so many moments whirling around that sometimes you could not see the storm because of looking at the flakes. Dizzy and aprehensive - snow blind. Looking for footfall paths and solutions. Every snow flake is unique and their symmetrical beauty compunds to become the drift that settles on enchanted branches. Lost in confusion - troubled by time.

Its Christmas Eve now and its time to see how the snow has settled.

Christmas Eve. The day that was always so important to me. No exaggeration to say that I saw the magic of Christmas Eve. I believed in the dark night choir song and the ice crack sleep that left the world white and crunch snuffled under snows that drifted forever. I believed in the expectation and the beautiful mystery of the muffled silence. I believed in teh Silent Nightand the voices of Angels.

So what can I believe now ?

It aint Christmas if there aint no snow ?

One of the things that people dont understand about what happened with Estella is how she lived her life. We get so many messages from people sorry for her pain and telling us that she is not suffering any more. People are so kind but I wish I could take them into a room and show them Estella.

I will try.

One of the things that you have to understand about SMA is that it limits the body. It does so much harm and attacks movement and swallowing and breathing. We watched Estella change daily from a baby that loved splashing in a bath and held a rattle almost from birth to a little girl who could move only her hands to grip your finger. The thing to keep in mind though is that inside her head there was nothing wrong. More than that - SMA children overcompensate for their lack of movement with improved intelligence and sensitivity. When we first heard that we thought it would be part of the pain to see an agile mind trapped in a body that would not respond. To be honest it was my major fear. Would Estella be screaming inside and unable to tell us ?

It was the exact opposite.

Estella developed a way of communicating with her eyes and her eyebrows that defied all sense. If a Nurse was the one who administered any treatment that she did not like she would remember that Nurse and look at her with such steely eyes that she soon knew she was not wanted. If you dared to step between Estella nd her programme on TV ( In the Night Garden ) then the raised eyebrows and the look of defiant consternation would soon tell you to move. She could communicate alright.

One of the most heart rending memories I have of Estella is that sometimes when you sat by her and talked or sang or told tales there would be a single tear that would well in her eye and fall onto her rosy cheek. She could not cry to make a sound and her tears would come in this way. It was never through pain though - I believe it was because she would see me in pain and she knew that I was hurting.

And thats the truth. She was the most sensitive, loving and caring person I have ever met. I would think that I was a very biased and confounded Daddy who saw things that were not there were it not for one thing. The support that Estella has managed to gather since she passed away has been so unbelievable that it denies rational explanation. The only way you can see why it happens is by looking into her eyes. When you do that I know that I am not talking crazy - there genuinly is a wise, knowing, pedantic, cheeky and charismatic soul there.

Somehow within a few months she seemed to develop an understanding of what was happening around her. Please believe me when I say this because its the most important thing I can ever say about my daughter. Maria looked after Estella 24/7. I contributed with some songs and some entertainment


Estella looked after us.

There were times when we saw her turn blue. There were times when we saw her turn bleached white. There were times when we saw her eyes roll up into her head. There were times when it was so obvious that we were losing her - right there - right then. We would panic and mend and try and cry and hearts raced and then... the little tinker would suddenly come back again. And when she did we would be on our knees and breathing as if there was no air - and then.. and then the little Tinker would laugh and smile. She would look at us with those liquid compelling eyes and smile. She stayed for us because we were not ready.

I have mentioned elsewhere how Estella left us and believe it or not this is meant to be a Happy blog today so I will simply remind you that we always said that when she was ready to leave she would tell us. I was at the shops topping up on baby products and she fell ill but she waited. She waited until she was in Mummy's arms and until I was there by her side. She waited until we were ready and both told her that if she was tired she could go to sleep with our blessing.

Did Estella feel any pain?
Only when she saw us unhappy.
Did Estella suffer ?
Only when she saw us suffering.
Did Estella have a sad and horrible life ?


I'll show you Estella

She was an absolute bugger of a tinker who knew very well how to melt her Daddy's heart.
She loved poetry and stories and music and games
She danced with her Mummy every morning
She loved physio with her Grandma
She loved her Grandad beyond words and beyond time
She had favourite toys
She would get angry if you fussed her too much
She would fall asleep whenever I sang Horse with No Name
She did paintings with her fingers and toes
She looked straight into the camera
She looked straight into your heart
She tasted banana
She went to the theatre to watch one of Daddy's plays
She went on an aeroplane
She stroked a skunk and had a row with a meerkat
She rolled off the settee and fell on the floor when she was not supposed to be able to move
She woke up every morning at 3 to get into the big bed
She had a wicked smile
She won the heart of everybody who met her
She managed to get equipment for Bluebell wood by making a video
She had far too many clothes and far too many toys
She loved The Cat in the Hat and would raise her eyebrows at exactly the same places
She could grip your finger until it hurt
She loved lights and sounds
She loved watching Fantasia - mesmerised by the orchestral dreams
She saw fireworks
She dressed as a skeleton on Haloween and smiled as I bobbed for apples
She dressed as Supergirl
She went to Spain
She convinced a milk company to give £ 25,000 to a charity
She flirted with Stephen Fry
She had some good friends - all of whom are now playing with her
She had the prettiest eyes
She made people laugh at her funeral which was attended by Iggle Piggle and a Baloon Bender

She waited until we were ready before she said goodbye

She waited until we were ready

She absolutely loved her Mummy - beyond all words - beyond all time

She was my tinker

So there you have the settled snow flakes. The parts of Estella that remain in our hearts.The storm ceases to spin and whirl and the houses and streets of the snow globe lay still and blessed and holy. The calm surrounds us and we see crystal clarity and pure beauty. Settled.

It wasnt a bad life

Its Christmas Eve and I am sat thinking of the most amazing soul I have ever met

Its Christmas Eve

Its not a bad life after all is it ?

Its Christmas Eve

Its a Wonderful Life

Its A Wonderful Life


  1. Know this is a positive blog, but that was beautiful and so moving. I'm reduced to tears again. She packed an awful lot into her short life. So glad there was no pain. So glad she waited until you were ready xxxxxx

  2. So sad , but so true .Have a wonderdul xmas and im sure ur little tinker will be by ur sides . Adorable little girl .
    Merry xmas to u both and to the brightest star twinklin tonite .
    Love Theos nana (lesley)

  3. @alifloob / Eileen floodDecember 24, 2011 at 1:31 PM

    Thank you for sharing this !! And for reminding people what's Important in life (including me!!)
    You have touched my life little Estella in a way I didn't think was possible for someone I didn't meet! But I promise you that I will help your mummy and daddy smash SMA!!!

  4. I see more and more how she helped you through this, and how her personality made such a difference in this whole experience. Thank you for again so eloquently describing Estella to those of us who never met her, and for making us smile.

  5. This has given me goosebumps. What a truly beautiful post. Thank you for sharing x