Losing the positive

12 Oct

Simon and I are both pretty positive people on the whole but the last few days have left me wondering whether I have lost my positive completely. On Sunday, I realised that I hadn’t heard Matilda say Mama for quite some time. After a few futile attempts to try to get her to say it, I am wondering now if I have missed the last time. I cannot even explain how terribly, terribly sad that makes me feel.

Denial is great but reality has an awful way of rearing up and slapping you in the face. It is very difficult to remain positive when you have to watch your child struggle to call for you, struggle to sit, struggle to  do everything. I am hoping that it is because we are getting used to being back at school and in this new routine but Tilda has also been particularly moody and cranky of late. I have been used to her waking up in the morning with a smile and a giggle but the last few days have been a battle. She seems less able to get herself about and yesterday afternoon I watched her do her usual roly poly’s on the carpet but noticed that she was using them as a way of getting from one place to another rather than actually getting any great joy out of them.

It is an absolute fucker.

The enormity of what is happening to us also hit me with full force. We are living a parents worst nightmare. When people hear our story, they thank god it isn’t them. We are going to lose our child and worse than that, we are going to watch her slowly slip away from us. I cannot even comprehend how enormous this is but the last few days have left me with a permanent lump in  my throat, constantly on the brink of tears and without a single positive thought to break out of my moroseness.

I hate this feeling. I hate being sad and I hate not being able to see a light. I know that I have every right to feel this sad and I know that I should ALLOW myself to feel this sad because it is all part of the grieving process but fuck it all to hell and back, it is bloody shit.

Chocolate has helped. As has the kindness of friends and family. I do know how lucky we are to have so many amazing people in our lives. We, 100%, could not do this without you all. My positive will return but in the meantime, I will allow myself to wallow about in this self-pity festival for just a little bit longer.


The very lovely Palliative Care team from the Royal Children’s Hospital came to see us yesteday afternoon. They are another addition to Team Tilda and will assist us throughout this journey – from sourcing equipment, liaising with other services and generally being another support. We talked about equipment that we need for Matilda. Most immediately is a bath chair. She loves her bathtime but it is becoming more and more difficult to support her in the water (and very bad for our backs!). We also talked about a new seat for her that might support her better.

I have also been speaking to our wonderful Speech Therapist from Glenallen about Matilda’s eating and will be arranging for a videofluoroscopy swallow study to get a better understanding about what is happening when she eats. I am coming to terms with the PEG. I actually think that it will be of great benefit in many ways, not least of all, making mealtimes less stressful. It is an emotional decision though, and one I have not come to lightly.

Matilda’s New Wish!

In much happier and more exciting news, there has been some decisions made regarding Matilda’s new wish. It is yet to be finalised but will hopefully involve as many of you as possible and will be a wonderful day to share – I ask that you tentatively keep the morning of Saturday the 26th November free with details to follow!

To end this rather sad and sorry post, I would like to show another video of Matilda that I love. It was taken up in Darwin when she was about 2 1/2.  She is a crankypants here too but as is her nature, she manages to snap out of it. As she will now. As I will now.




12 Responses to “Losing the positive”

  1. M October 12, 2011 at 3:20 pm #

    love you….

  2. Treens October 12, 2011 at 3:24 pm #

    I’m available to cry with you 24/7. Or laugh with you. Whatever is appropriate at the time. xo

  3. jackie October 12, 2011 at 4:04 pm #

    My heart is breaking for you all and I am happy to provide alcohol and a shoulder to cry on anytime! Simon and I mentioned a catch up/play. I would love to finally meet Tilda and for the girls to meet her as well. I will get in touch with Simon and hopefully we can work something out. We will definitely keep the 26th free! I wish as I am sure so many of your family and friends that all of this would all just go away and you would wake up from this nightmare. Always in my thoughts Laura! x

  4. kylie October 12, 2011 at 9:29 pm #

    Oh Loon…….this is so hard. Worst Case Scenario. xxxx Love you

  5. kylie October 12, 2011 at 9:29 pm #

    I remember that video. Loved it then too.

  6. Cally October 13, 2011 at 9:36 am #

    It stinks, is shitty, horrible.
    I am angry too.
    I want to throw things around.
    Kick a door or two.
    It is so unfair.
    Then I want to hug you and try to make the hurt go away.

    Hang in there dear one.
    There are a lot of us baracking loudly for you and Tilda in the sidelines.

  7. Natalie Waghorne October 14, 2011 at 7:00 pm #

    Another post that has made me cry. Your stregnth is amazing, even when you sometimes feel low. We are always thinking of your beautiful little family. All our love Natalie & Locky

  8. Heather Jackson October 16, 2011 at 1:26 pm #

    I love you honesty! I love you! Nothing I can say will help. But know that you are constantly in my thoughts and prayers!

    • teamtilda October 16, 2011 at 7:49 pm #

      Thanks lovely one. You are doing amazing things in Dooseland – I am still following and blown away by your energy! Thank you for the thoughts. xoxox

  9. Diane October 16, 2011 at 4:53 pm #

    I’m on a promise to forward you 2 email addresses from friends of yours who want to join the teamtilda blogs. Lizzie Thomas and Sue Batagol. They are: bsbatagol@bigpond.com and apeaThomasat bigpond.com. (maybe that’s a small ‘t’ for Thomas, but she’s written it down for me as a capital.
    I thought long and hard about this (Oct 12) very sad posting from you. I do know how hard it is, but of course, I really don’t. And yes, there is a small degree of ‘there but for the grace…etc., but I’m sure that everyone, like me, just weeps for you and what YOU are going through right now. Nobody knows what’s around any corner, and if there was any way to change things for Tilda, we would. I think about you all, very often, and hope, and wish, and want you to know, constaantly, that I care. And I will certainly make it to her wish day. My brother Neil will be over from Perth staying with me, and I would like to bring him along, but will check that out with you before the day. All my love as usual. Di

    • teamtilda October 16, 2011 at 7:53 pm #

      Fantastic that you will be able to come along Di and absolutely bring your brother Neil, it will be great to meet him. I am very happy for Lizzie and Sue to join in on the TeamTilda action! I will send them the link.
      Thank you so much always for your thoughts and wishes. Can’t wait to catch up. oxox

  10. Emma October 18, 2011 at 4:52 am #

    You, Simon and Tilda have shared some intimate family moments with us all and along the way you have captured the words you’re wanting to hear – the beautiful videos and images you have taken of Tilda are priceless and you can hear her gorgeous, husky little voice over and over and over and over and over and over again – I’m sure she’s saying it, when she looks to you both.

    We are very keen to share the fun and excitement of Tilda’s day, especially looking forward to watching her on the roller coaster over and over and over and over again!

    E x

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