Archive | April, 2013

Saying Goodbye

24 Apr



How can I write about Sunday and Monday? The emotions over the last few days have run the full gamut and on Monday night, Simon and I collapsed into bed completely drained. Only a fraction of what Nicole and Peter must have felt. Sunday was a beautiful celebration of Jack with photos and videos, music and prose and Monday was the more formal but equally beautiful Greek Orthodox service with the burial at the cemetery.

How to write about any of it? Seeing Jack’s casket. Nicole’s tears. The huge number of people there to support and grieve. Watching the casket go into the ground. Releasing blue, orange and teal balloons  – Diego colours of course and teal for Batten. Feeling heartbroken for Nicole . And for us. Knowing what is to come.

Words are completely useless at this time. The only thing I can do is wrap my arms around Nicole as much as I can and be here for the next bit of the journey which is the complete unknown. What to do now?

Thank you for all the lovely messages of condolence, it is very much appreciated.



15 Apr

Jack passed away peacefully this morning. My heart hurts.

To my dear friend Nicole who has gone through this most horrific of journeys with the most amazing fortitude and grace, I send to you all the love in the world. Know that there are so many people thinking of you and wishing you well. You are not alone.

To the beautiful Jack, you have touched so many people’s lives, we are all the better for you having been in the world.

May you rest in peace.



12 Apr

A few days ago, I wrote a post that I didn’t publish. It was pretty sad and sorry and I really just needed to get the words out. I was writing about how it is getting harder and harder to make Tilda laugh and how Batten disease is stealing her away before our eyes.
But true to form, her resilience has shone through. Almost as soon as I finished writing, I heard a noise from her bedroom that I hadn’t heard in a while. Tilda giggling at one of her shows. The most delightful sound there is.

And although it is getting harder to get a smile, one trick still seems to work everytime.

But this a cruel and heartless disease and it is winning in its current battle for the beautiful Jack. We wait for his final breath with the worst pain in our hearts. True to his form, he is not going without a fight. Please have Nicole and Peter in your thoughts in the days to come.

We love you Jack.


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