School Holidays Update

5 Oct

I approached the holidays with a fair amount of trepidation, knowing that too many days just spent at home will result in an unhappy Tilda and an unhappy me. But also knowing that outings bring with them rather a lot of complication – feeds and medicine to be packed, naps to be worked around and most of all, my expanding girth and ungainliness to battle! My plan was to do at least one outing a day, counting even going to the shops. This has proved to be a very good idea although we have had a couple of at home days just to have some time out.

The absolute game changer has been our wonderful, wonderful van! Without which, I do believe I would be a cabin-fevered mess. The ease with which I can now get Tilda out and about has been absolutely invaluable and I want to say a massive thank you to everyone who has played a part in making this possible. All those people who have bought and sold raffle tickets – we are very much nearing our goal of paying the van off which is amazing. I would like to give an especially huge thank you to the gigantic hearts of Matt, Kylie, Adam and Chezzie, who started the fundraising arm of TeamTilda and got this ball rolling. Not a day goes by that I don’t think of you guys and thank the universe for giving us such amazing friends. oxxoxoxoxo

We have spent our days visiting friends, swimming, going for drives, going down to Anglesea and enjoying the wonderfulness that is Springtime in Melbourne. Sunshine has finally graced us with its presence and we are making the most of it. Thank you to Millie for coming over last week and attending to our garden and to the delicious Clementine for “helping”!

In very exciting news, Millie’s book is now for sale, featuring our Tilda on the front cover! It is a fantastic read (even for a complete garden numpty like myself!) and I am proud as punch to see my lovely friend in print. Available in ABC shops and good bookstores everywhere!

We have been able to spend time with our Batten friends, Nicole and Jack. There is something about watching Jack and Tilda together which is really gorgeous to watch.

I am so grateful to have Nicole in my life as someone who absolutely understands what we are going through. The shitty days and the good days, we are able to share with each other which makes the load just that little bit easier to carry.

We have made a new (gigantic) friend! Thank you to Nancy for sending her to Tilda!



There has been few sad moments though. And a few days of self-pity for me. I guess the thing about the school holidays is that I get to spend extended periods of time with Tilda and sometimes it highlights just where we are. I look back to the September school holidays from last year where we experienced the absolute joy of the roller coaster for the first time! Which eventually led to Matilda’s Amazing Wish Day. Kylie and the boys and Tilda and I returned once again to the awesome Wonderland yesterday afternoon, where the very kind and gracious Melissa remembered exactly who we were and showered us with free vouchers for food and rides and everything we could possibly want. The last time we tried to go back to Wonderland, Tilda was not in a great place. It was the summer school holidays and she had just had the nasogastric tube inserted. I was keen to see whether her recent stretch of good days would mean a return to that absolute joy.

Unfortunately not.

She had a good sleep when we first got there.

She woke up looking pretty refreshed so we thought it was time for roller coasting action. Because of my delicate condition, I wasn’t able to go on the roller coaster myself so Kylie and the boys took her.

And it just didn’t work for her. She didn’t hate it but she didn’t love it and when she got off and we put her back in her chair, she had a look on her face that broke my heart. It was a look of bewilderment and sadness. I am not sure just how much Tilda takes in but it seemed to me that she recognised where she was and she recognised that she could no longer take part in this activity that once brought her such pleasure.

Fuck you, fuck you, fuck you, fuck you Batten disease. The cruelty by which by you have stolen my child infuriates and devastates me in equal measures. Just as I start to cope with what you throw at me, you turn around and break another piece of my heart. How to bear the unbearable?


This is how I bear it. Because if she can, then I can. This was taken only moments after we left the park. I pulled a face and made a stupid noise and was able to make her smile. And as long as I can do that, I will be alright.

Much love to all



5 Responses to “School Holidays Update”

  1. morrisonpix October 5, 2012 at 2:50 pm #

    oh much love to all of you! so happy Dora has been received to Tilda’s loving arms xoxo

  2. Adz & chez October 5, 2012 at 5:29 pm #

    Good to see you have been out for adventures on the holidays! Loved seeing Tildas new top in few shots too, way cool. Maybe not as cool as the huge Dora, awesome, looks like two little mates together lying there! And thanks for the thanks (?) ha, but easy job with many helping hands, everyone is keen to see the best we can get
    for Matilda and her pretty awesome parents!!!

  3. Stella F October 5, 2012 at 6:08 pm #

    Much love to you guys. Gorgeous Tilda is blessed to have such amazing parents.
    Enjoy the rest of the holidays xxx

  4. cally berryman October 5, 2012 at 7:27 pm #

    Thank you for the beautiful photos of Tilda.
    It is fabulous to hear about the van being so great.

    I agree with you totally – bloody aweful Batten’s disease.
    Unfair horrible stinking, ghastly disease.
    I hate the disease and its destruction.
    It robs beautiful Tilda of so many things – but not her spirit, nor her smile.

    Enjoy the sunshine

  5. Juliet October 8, 2012 at 8:52 am #

    That last photo says it all. Despite all that’s been thrown at her and the disappointment of the roller coaster, Tilda still really appreciates being entertained! The Dora doll is marvellous. All my love.

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