Sunday, December 11, 2011


There is a tiny church in a little village named Baslow. For reasons we cannot remember this has become a place where we go when we want to ask for anything or when we are thankful for anything. We are not particularly religious or church goers but somehow in that chapel we always find peace and vestiges of tranquility.

When Estella was first diagnosed we had a wait until we would be told whether his was SMA 1 or 2. If it was SMA1 she would only be with us for about a year. If it was 2 she would be severely disabled but would live for longer. I rang the Vicar and he said that there would be prayers for Estella at all their services. I told him something Maria had said - that it should be like Estella was Tinkerbelle in Peter Pan. When you see the pantomime the children clap to show that they believe in Fairies. If thy clap loud enough then Tinks gets better. He did an amazing thing for us and rather than just prayers said he would invite the congregation to clap for Estella. They did. A beautiful moment.

We took Estella there once with her grandparents and we sat as the Vicar stroked her head and blessed her. We knew then that she was SMA1. We knew that we would never see her walk or dance or hear her talk or sing. Life had stretched before us and now as the Spring flowers bloomed it felt as if the world was closing down around us. There in that chapel we wept as we held her and we silently prayed for miracles.

We sat there today without her. Time had moved on and it was dark. No prayers today just words of thanks

Thanks that she never felt any pain
Thanks that we had so many lovely days with her
Thanks that her death was peaceful and that we were all together
Thanks that she had been so loved and so wanted

We had eight months with our little girl. For six of those we knew she was dying. We knew there was no tomorrow and no forever. We got something right though. We understood that these days were here for love and that these days were here for cherishing our very special gift. I look at photos that we have of her and she is looking straight at the camera but more than that she is looking at a spirited future when her eyes stare from picture frames into our hearts and our memories. She knew we would need her and you can see that in those eyes. She protects us and was there today watching us as we watched the space where we once sat watching her.

We have been so blessed.

I promised her that we would smash SMA and at the moment that promise is giving us focus and direction. You are all helping and I can never express enough gratitude.

So that's it. A church. In a meadow. By a river.

A little girl with eyes that shine forever.

We sat there today without her. We sat there today missing her. We sat there today howling inside at our loss.

She's here though. We knew that when she was being blessed and we knew that today.

One month ago today my little darling.

One month ago.

Puff the Magic Dragon lived by the Sea
And frolicked in the Autumn Mists in a land called Honalee ...

Repeat and fade.


  1. Absolutely beautiful and heartbreaking. She's definitely shining on xxxxxx

  2. How's not only Estella who is winning everyone's hearts, it's her wonderful parents as well. I will send out a link to this, since it says better than any words I could use where you have been and where you are going.