The Tildaness of Tilda

24 Aug

I have been putting off writing this post because I know it is going to make me cry. But there are thoughts swirling around in my head that I think should be set down.

The complete bastardness of this disease is not just the fatality of it. It is having to watch her no longer be able to do the things she used to.  It is watching her lose her words, her ability to walk and play, even sit. I can feel strong at the moment because the Tildaness of Tilda is still there. We get the cheeky smiles, the giggles, the jumping and of course the roly poly’s. Her personality is still shining through and I am hanging on to it with all my might. My greatest fear about all of this is losing the Tildaness of Tilda. Most of the time, my coping mechanism is pure denial. I think that is the only way to live through this. Day by day, not thinking too much about the tomorrow.

Some days though, my thoughts drift to the past and is it at these times, that my grief overwhelms me.

I wanted to show my very favourite video of Tilda. It was taken on her third birthday, exactly 1 week after her first seizure at the pool. At that time, we were in ignorant bliss and believed that it was a febrile convulsion, never to be repeated. A childhood anecdote that we would talk about in years to come. She is bright-eyed, she is tanned and blonde . She is wearing her favorite dress  and those bright red shoes. She is totally delicious.

This morning, I carried Tilda from her room to her play area. I carried her because she was seizing so much, she couldn’t stand up straight. She sat in her chair, whilst Simon spooned her cereal into her mouth, a bandanna around her neck to stop the drool from getting her soaking wet. She is still Tilda but I don’t know how long for and it is that thought that wakes me in the night, that thought that sits on my chest and squeezes my heart until I can’t breathe.

Fuck you Battens.


9 Responses to “The Tildaness of Tilda”

  1. Kylie August 24, 2011 at 10:42 am #

    Oh Laura……xxxxxxxx

    Fuck you Battens. Exactly.

  2. Elizabeth Chapoton August 24, 2011 at 11:18 am #

    She is a beauty – inside and out. This is a fuckermonster of indescribable proportion. I so deeply wish I could offer something of value.

    • teamtilda August 24, 2011 at 11:25 am #

      Your love and support is of immense value.


  3. Treens August 24, 2011 at 11:58 am #

    Tears are flowing. Love the video, what a treasure.
    If only our collective wishes could make this horribleness go away. I’ll keep wishing, just in case.

  4. Waidehi August 24, 2011 at 12:10 pm #

    Oh Laurel, nothing to be said except to send you all my love. What a horror. Absolutely love that video. Thinking of you all. xoxoxo

  5. Tim August 24, 2011 at 5:05 pm #

    What a lovely video Laura, it’s perfect.
    She’ll always be Tilda, especially for anyone lucky enough to have known her for a long time.

  6. jackie goulden August 24, 2011 at 6:07 pm #

    The video of Tilda is gorgeous, what a beautiful memory to have. I had tears! Thinking of you as always xx

  7. Mish August 25, 2011 at 8:18 pm #

    Oh Laurs, I don’t know what to say except that you’re all in my thoughts. Sending my love and good thoughts out into the universe for you, Tilda and Simon. Xx

  8. Dianne September 8, 2011 at 8:49 pm #

    Hey Laura,
    Your Tilda is so precious. This video, priceless!!!!!!!!!! No amount of Battens could steal these beautiful memories from you.
    Your strength and courage amazes me. You, Tilda & Simon will will always be in my thoughts.

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