Kind of a crappy weekend

8 Sep

And not just because the Tigers lost and Tony won. The vomiting has returned and with it, all the anxiety about the last week.

When things went downhill last Sunday, I went to a place that I hadn’t allowed myself to go yet. This is what I wrote that night:

This is the first time that I have allowed myself to go there. It feels like this is the sickest she has been. It feels like its enough. It is too much for a small one to bear. I know how strong she is and I know that she could rally. But for what? For a life marred by sickness, by seizures, by pain, by the loss of all the things that she held dear. Gone already the ability to walk, to talk, to jump, to eat. I fucking hate you so much you horrible fucking disease. Let her go. Let her go. Let her go.

That was the tired and stressed me.

I don’t want to let her go. I want to keep her. For as long as possible. But not at a cost that would cause her any distress, or discomfort. I will be led by her.

And in true Tilda fashion she has rallied amazingly well and showed me just how much she has in her.  We left hospital last Wednesday and things had been going pretty well until yesterday. And even since then, it has just been a couple of  small vomits. I should be used to it. But I’m not. The questions remain. Was it just because we had increased her feed? Will she aspirate and get another chest infection? The cough still sounds pretty awful and I don’t like it.

There is nothing to like about Batten disease. There is no light at the end of a tunnel. The only light to hold on to is her amazing smile, delectable laugh and always her tenacity.

Tilda turns 7 on Tuesday. 7 somehow seems so much older than 5 or 6 – perhaps because now I shop in the 7 years plus section at Target!

7 also scares me. Too many Batten kids have died at age 7. A year or so ago, Simon and I had a no holds barred conversation. She had just come through her first chest infection and honestly, at that point, we didn’t think we would get to see her at 7.

So, we are thankful to be here. Thankful for all the days that we have. Terrified of what is to come but doing what we do and living each day as it comes. Even through a crappy weekend, a crappy prime minister and a crappy footy result.

Watching the footy


Tilda watching the 1st half of the footy, before we started to lose!

Bring on Tuesday. Tilda’s amazing school is holding a party for her – a morning to celebrate, rejoice and bask in her awesomeness. Thanks to her beautiful teachers for putting it on, we can’t wait!


PS I am sure Simon would like me to add that he thought the footy result was fantastic!



9 Responses to “Kind of a crappy weekend”

  1. Cally Berryman September 8, 2013 at 9:07 pm #

    I hear your sadness and exhaustion. To watch a beloved child slip into unrelenting
    illness is so terrible. I cannot give any platitudes. Only to say -hold on.
    May tomorrow have more brightness and more giggles and smiles. Warm hugs Cally xx

  2. Louise September 8, 2013 at 9:15 pm #

    We are going to party in style on Tuesday, celebrating our Tilda’s 7th birthday, AND, sorry to say, Carlton’s win!!!!!!!! I am with you Simon, GO BLUES!! (Sorry Laura)
    Hope our Tilda has a good night and we can’t wait to have her back at school!!
    See you on Tuesday, XXXOOOXXX

  3. Joanne Clay September 9, 2013 at 2:15 am #

    Hi, just wanted to let you know I have been following your ups and downs, my son has juvenile battens, he too attended Glenallen for 2 years. Hang in there, sounds like you are doing a fantastic job …..🌺

  4. Juliet September 9, 2013 at 8:23 am #

    I hope you all have a wonderful birthday with Tilda tomorrow! I agree with everything you say about that horrible disease.

  5. Nicole September 9, 2013 at 8:29 am #

    Sending you all a HUGE Happy Birthday!! message and hopes that the big day is all you deserve it to be.. Birthdays, for me, are more for my Mum than myself, after all – she’s the one that took care of me and made my life it all it was as a child, just as you are for Tilda. Make sure you get a special ‘mummy’s treat’, I can’t think of a mum who deserves it more.
    Your strength and willpower never cease to amaze and humble me. Take care and know that you’re an incredible person and mother. xx

  6. Jennifer Medley September 9, 2013 at 11:44 am #

    Oh Laura, your words emulate all my thoughts! Many thoughts and prayers to you all!!! Happy 7th to Tilda! Jake’s 9th is in a couple of weeks…wow!! Hang on there!! Let me know if you need anything (questions?).
    xxoo J

  7. Ben Smith September 9, 2013 at 6:29 pm #

    Hey Loon, don’t forget 7 is a lucky number, I Love you so much , you’re kind of inspiring, not even kind of , you are Amazing. I’m Very Lucky to have you as a Sister. Here if you need me. Kiss Tilda and Maggie for me. I’ll talk to you soon. Love Benx

  8. karla akehurst September 9, 2013 at 8:53 pm #

    Laursy your honesty astounds me and makes me proud and honoured to be your friend. We will be singing loud and pround for Tilda tomorrow!!! Happy birthday delicious child xxxx Love ALL the Akehurst boys and a special big squeeze from me xxx

    ** *byron bay artist* *mob: 0437 856 065*

  9. Fiona September 9, 2013 at 10:05 pm #

    Much love to you all xoxox

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