Home again

4 Jan

Christmas and New Year are behind us. We spent time with our families and friends and had some more time down at the beach. Thoughts continue to be random and changeable. There is an ache that never completely goes away. In my mind, I say her name over and over again. Tilda, Tilda, Tilda.

I try and remember everything. Get frustrated when her early years escape me. Worry that I didn’t tune in enough then. Wish I had recorded more, more, more. I am greedy for the videos I have of her. Ironic that many of them come from trying to capture a seizure on film for her neurologist. Before we knew about Batten. A catch in my throat as I realise there will be no more new photos of Tilda. No more videos to come. What I have is all there is. Such a simple thing to realise but such devastation.

The anger has dissipated somewhat but it is still there. I hope that it will be the drive to, at some point in the future, become very involved with the Batten Association. There has to be a way. I need to understand more. More about how this disease works and more about how cures and treatments are discovered.

I focus a lot on memorials. How to honour her, how to keep her name going. I will think of the right thing.

Next week will be hard. Simon starts back at work. Normal life resumed. Except of course, it isn’t normal at all. We will also be saying goodbye to Tilda’s equipment. Her wheelchair, her bed. Hopefully going to someone who needs it. Knowing that these things did not define her but letting go of anything that is part of her is hard.

Joyous Maggie. Bringing us smiles and laughter and hope. Sometimes, I look at her and I cannot believe that I get to watch her grow up.












Thank you so much to everyone who has supported us over the last weeks. I have been very remiss of late in replying to messages and for that I am very sorry.

Much love to all.



8 Responses to “Home again”

  1. Maria Munro (friend of Marg Dowling's) January 4, 2014 at 1:16 pm #

    I wish you a gentle 2014, one that will give you time to grieve they way that you want. Can you seen a little of Tilda in Maggie?

  2. Jennifer Medley January 4, 2014 at 1:28 pm #

    Sending more love and prayers. I wish I could do more. Maggie is just as beautiful as Tilda.
    XO Jennifer

  3. Irene January 4, 2014 at 1:39 pm #

    Good 2014 to you Laura and Simon and Maggie I hope your break was somewhat refreshing. I dont know what else to say to you except to wish you all well and I hope to see you back at Healthlink this year? XX

  4. Kirsten January 4, 2014 at 5:41 pm #

    You have been so very much in my thoughts. Xxoo

  5. Juliet January 6, 2014 at 7:40 am #

    The ache will never go, but Maggie, a Real Person in Her Own Right will be a joy, as she already is. All my love


  6. Danielle January 8, 2014 at 10:28 am #

    I love you! xxxx

  7. Laurie January 9, 2014 at 12:51 pm #

    Still loving on your family in thoughts and prayers. May peace fill your home.

  8. Emily January 13, 2014 at 3:14 am #

    Beautiful Tilda, I looked after her on Sugar Glider. What a smile, and what a laugh. Thinking of you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: