Thursday, February 23, 2012


For a little girl who was only here for a little while Estella sure made some friends. One of the days I will remember all of my life is the day that Iggle Piggle from the Night Garden came to visit our little Tinker at Bluebell Wood.

I had been extremely lucky to come across a wonderful lady who had an Iggle Piggle suit and one Saturday she came along to spend an hour with Estella. She had fallen asleep and one can only wonder what went through her mind when she awoke to see Iggle Piggle standing by her bed. Iggle Piggle with his big red blanket and eyes that Estella stared at goggle eyed. She made her ooh ooh ooh face. She raised her little eyebrows

It was one of the last times I saw her beautiful smile.

Iggle Piggle came to her funeral a few weeks later and draped the big red blanket over Estella's little white coffin. Iggle Piggle waved her goodbye and gave us all balloons to release into the sky. Iggle Piggle skipped away from the funeral leaving us all laughing..and crying..and laughing

Imagine Estella looking down at that room. People sat there with tears in their eyes. Daddy and Granddad carrying in her coffin and on the back row a giant Iggle Piggle crying into a hanky. Estella would have laughed.A lovely sense of the absurd. Imagine the scene.

'And Who Are You ?'
'Yes - may name is Iggle Piggle....

She would have been a year old tomorrow.

I would be getting ready now to spoil her. There would be a party and my stupid theatrical nonense brain would have arranged some cartoon character to pop in to see her. I would have bought her a new dress and far too many toys. There would have been cake and a candle. There would have been disbelief that a year had passed.

There is disbelief that a year has passed.

She has not been here for over three months now and there will be no birthday party tomorrow. There will be no cards. there will be no wrapped presents. There will be no tales and no songs. The dearest treasure of my life has gone and will never have a birtnday.

Never Ever


We have bought her a toy wooden monkey. One of those that dances on a set of gymnastic bars.
We have bought her some Chinese lanterns. Lights flying to the heavens.

Tonight when it is dark we are going to go to the park where her ashes are spread. We will cast the monkey into the pond to shock the ducks and make Estella laugh. We will release our souls on chinese lanterns to try to float them closer to our daughter and we will sit

on a bench
in the dark
in the rain

In the Night Garden

and just maybe somewhere off into those trees Iggle Piggle will be watching.

It's time for bed Iggle Piggle

So much has happened in that year. So many laughs. So many tears.

And tomorrow she will be one year old.

She should have toddled
She should have sang
She shoudl have danced
She should be excited and breathless with anticipation of tickles

Instead she was breathless with SMA

And nothing will change that
And nothing will bring her back
And I will never hold her again

I get that
I honestly understand - I know.

But tonight I am going to sit In The Night Garden and watch the stars.

Tonight I am going to watch the stars

And tomorrow ?

We're catching the Ninkey Nonk and getting away for the day

All across the world hundreds of you will be

Lighting Candles
Tweeting and retweeting
Getting celebrity retweets
Making Stars
Writing SMASH SMA on your bodies
Releasing balloons
Singing A Horse With No Name and Puff The magic Dragon
feeding your kids far too much cake and letting them stay up later than normal

Whatever you do for the Tinker please please let us know and post photos


I woudl be grateful if you would all raise a hell of a noise tomorrow.

I know you will

A year ago today i did not know any of you. And yet so many people have helped us with this whole journey. So many people who have gone so far beyond anything that I had ever thought possible.


I have met some amazing people


forgive me this

I met one person who was amazing beyond amazing. A gentle soul with an ironic lifting of an eyebrow who could melt your heart. A little girl who believed in stars and rainbows and dreams and Iggle Piggle and The Cat in the Hat and.. . .me

She believed in me

Thankyou Estella for making me a Daddy - if only for a moment

Happy birthday my absolute darling.

I'll see you in the Night Garden

the night is black
and the stars are bright
and the sea is dark and deep

someone i know is safe and snug
and they're drifting off to sleep
round and round
a little boat no bigger than your hand
out on the ocean
far away from land
take the little sail down
light the little light
this is the way to the garden in the night

She will be there waiting for me

In the garden in the night


Someone I know is safe and snug

In the garden

In the night


  1. This is beautifully written and I am typing though tears.

    You will always be a daddy, Estella's daddy and her mam will always be Estella's mammy.

    She will be looking down so proud of you both.

    Much love and happy birthday to Estella for tomorrow.



  2. You'll always be a daddy, you'll always be her daddy x

  3. Happy Birthday precious Estella. Can't type for tears. I am sending you and Maria SO much love Tom. Xxxxx Lou xxxx

  4. We will be making lots of noise for Estella tomorrow. God bless you and the love you have. :')

  5. this is beautiful i lost my 1st grandson to SMA 5 months ago im sure your beautiful daughter will sit with you both in the night garden and smile at her lights floating up i will send a balloon for the little angel and post the picture on facebook keep strong has im sure your daughter was. SMA babies are the strongest most beautiful babies born and though their lives are short they make more of an inpact on people then some who live a life time on earth thinking of you all xxxxxxx Alfie angels nana Sam

  6. Happy birthday princess you have made your mummy and daddy very proud. Goodnight god bless. X

  7. Beautiful as always, we will be making cakes and celebrating Estella's first birthday and will sing Happy birthday to your lil star will take a pic of the messy cake decorating that occurs

  8. Our thoughts will be with you tomorrow. Estella's story has really touched my heart. I lost my godson to SMA 15 years ago and it still breaks my heart. Tears are dripping off my face as i right this. As i watch In the night garden with my 2 girls tomorrow i will show them the stars and let them pick one for Estella and Lee and give them an extra big hug. Happy 1st birthday for tomorrow Estella in our thoughts and hearts always xxxxx

  9. Beautifully written by a beautiful daddy for a beautiful little girl. I have no right to cry, sorry. Kx

  10. i dont know you or have ever met you but i am sat here crying right now that was one of the most beautiful things i have ever read and a beautiful thing to right, i am so sorry for your loss, i hope she had a fantastic birthday in the clouds xxx

  11. This is so sad. I'm sorry for your lost. I know your pain. I lost my angel also. My prayers are with you.