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.



6 Responses to “Resilience”

  1. Mandy Bruton (new Ashby) April 14, 2013 at 12:07 am #

    Thank you for sharing this beautiful post. Our thoughts are with Jack and his family. Xx

  2. cally berryman April 14, 2013 at 6:20 am #

    I loved the photos of the gorgeous and beautiful Tilda.
    Thank you.
    What a strong soul Tilda is and how she teaches us about life.
    The Batten’s is a physical nightmare – but Tilda’s spirit is magnificant.
    It must be heart breaking to see Jack’s condition.
    Love and hugs Cally xx

  3. Kat varcoe-Cocks April 14, 2013 at 8:54 am #

    Hi Laura, sorry I missed out on visiting you yesterday. We’re all thinking of Jack and his family. Thank you for sharing. I hope you have a giggly Sunday. Lots and lots of bigs hugs, you know those annoying ones where people hold on that little too long and hard and as well as getting a little painful they’re just quite awkward 🙂 Treen xx

  4. Daryl April 14, 2013 at 12:31 pm #

    Our hearts go out to Jack and his family at this heartbreaking time Laura, and always to you and Simon and the family as you and Tilda together all daily confront and battle this most horrendous and cruel disease. She is a gorgeous girl with wonderful spirit and she has an amazing and courageous family …I just wish words could do more to move the mountain and fix the pain ….love Daryl

  5. Juliet April 15, 2013 at 8:11 am #

    My heart goes out to you all, including Nicole and Jack. All my love.

  6. Irene April 15, 2013 at 8:17 am #


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