30 Jan

I am sorry to report that things are not a whole lot better with Tilda. And we still do not have any news regarding the PEG surgery. I am feeling all manner of things so bear with me as I try and gather my thoughts into some kind of comprehensive post.

The main thing that is troubling me at the moment is Tilda’s loss of general Tildaness. The thing that I feared most in the world. She is not particularly happy, nor is she inclined to do the things that she once loved – like swimming or trampolining. The only thing that she wants to do is watch Dora. I would do anything in the world to make Tilda happy and if she wants to to watch hours upon hours of Dora a day, then I will do it but I hate it. I find it so unbearably sad. I am desperately hoping that either the PEG surgery or the return to school, with all its stimulation, will revive a bit of the Tilda of old – enough for me to feel that she is living some semblance of a life. This is not a life at the moment and I am angry, and heartbroken, that this disease, which will take her completely, has already taken too much.

I see sparks. In the mornings, when she wakes, she smiles and reaches for a cuddle. She will put up with me trying to take her outside to the pool and splash about for a few minutes before whimpering to go back inside. Riding in the car, listening to The Wiggles stills brings a smile to her face.

We returned to the scene of Wish Day on Friday, with friends who were down from Sydney who weren’t able to make it for the day itself. There were sparks there, as we went round the roller-coaster. But, her energy levels are very low and we only stayed 1/2 an hour before it became clear that she wasn’t coping.

This ever constant grieving is ever constant. And although I hate to even put it down in words, there are some days when I wish that it was all over and that I could let my grieving pour out of me like a torrent. At the moment, there is a wall which says that I must focus on the moments, focus on the day to day, focus on the now. But the now is shitty. Shitty, shitty, shitty. I want my Tilda back.


Watching videos of her, from even just a year ago is simultaneously heartbreaking and wonderful. I am so glad I have them.

I gather strength from my friends and family, from the support we receive. All we can do is forge on. Hope that tomorrow will be better. Hope that I will have the strength to face what is ahead.




19 Responses to “Grieving”

  1. Kell January 30, 2012 at 3:06 pm #

    We are thinking of you guys and though it cant take any of that pain away, we love you all… xxx

  2. Pippa January 30, 2012 at 3:16 pm #

    Sending you a big virtual hug. I know I don’t message often but it’s not because you are not in my thoughts. I’ll keep my fingers crossed that the PEG surgery helps her and that you get some sparks back soon. With love, Pippa xx

  3. Lauren Read January 30, 2012 at 3:30 pm #

    Sweet Laura, I am constantly in awe of you – your amazing strength and your ability to spread sunshine on your days, no matter what the circumstances . I can ‘t pretend to know what you’re going through and I know there’s nothing that can be said that makes this situation any easier, or eases the pain you guys must feel. But know that when you’re happy and you have your good days, I smile with you. And when you’re sad and your heart is breaking, mine breaks for you. We are always asking Dan how you are and how’s Tilds and we are on this journey with you. So know that you are not alone in this process and that there is constantly a stream of love and warmth and hope and strength being sent to you from the MAW office, every day. And I’m sure we’re not the only ones. And if nothing else, know that Tilds is so incredibly lucky to have this amazing, fighting, loving, warrior woman as her mum.
    Love, Lozzy @ MAW

  4. rubydphotography January 30, 2012 at 3:58 pm #

    Fingers, toes and everything crossed that you have some news regarding the PEG surgery soon!

    Thinking of you all honey.

    You are amazing.


  5. jackie January 30, 2012 at 4:17 pm #

    there are no words…well except ‘it’s all FUCKED’!!!!!!

    • jackie January 30, 2012 at 4:19 pm #

      thinking of you all as always xx

  6. Jac January 30, 2012 at 5:28 pm #

    Our hearts are breaking for you all, Laura.

    This disease is bullshit and I’m so so sorry that you’re going through this.

    It’s not fair at all. Not fair.

    Keep holding on to those beautiful moments – you are clearly making the best of an unbelievably shitty situation.

  7. Nadia Packer January 30, 2012 at 6:07 pm #

    Laura, stay strong my friend, u will have the strength to face what evers ahead, ur strength and positivity throughout this shitty shitty hand has been amazing, u r one of the most amazing people that I know. I am hoping with all that I have that Tilda’s sunny cheer will be restored very soon and she will once again enjoy her favourite things. Love and hugs x x x

  8. Emma January 30, 2012 at 6:15 pm #

    Hey Laura,

    You have been absolutely flawless in your approach to this heartbreaking circumstance; your inner strength to overcome each battle is inspiring to us all. Despite these challenging times, I am sure that Tilda thrives on those special times that you create together – and on the love that only a mother and daughter will know.

    Keep on breathing that fire…..and look forward to that yummy morning cuddle coming your way tomorrow!

  9. Clare January 30, 2012 at 7:44 pm #

    Hey Laura- this shit is really shit isn’t it…so wish we could have a magic wand and make it all better. Hang in there, your doing amazing and I’m sure Tilda just loves hanging out with you even if it is watching Dora!

    take care

  10. Anne Bunting January 30, 2012 at 11:42 pm #

    You poor darling – life is not fair and you have been dealt the most unfair burden of all. It seems trite to tell you to keep your strength up when I cannot have any real idea of what you are going through and all I can offer you are my thoughts and intangible support – I wish I could do more. Take care and remember hat the one constant in all of this is the fact that Matilda has got the best mother in the world.

  11. Juliet January 31, 2012 at 7:21 am #

    Dearest Laura. All our hearts are breaking for all of you. Like you, we must all hope that school and the PEG can bring Tilda a bit more joy. All my love

  12. Judy January 31, 2012 at 9:36 am #

    Dear Laura
    What a fabulous mother you are. Wish we could do or say something to ease the pain for you and the beautiful Tilda. You are giving so much to all of us in sharing so honestly your feelings from day to day. Thinking of you and sending our love to you all and the hope for a better day tomorrow.

  13. Daryl Linnane January 31, 2012 at 4:19 pm #

    Laura…..we grieve for you and with you but we can barely imagine the heartbreaking pain and sadness that is yours . Yet we feel it intensely and deeply even though we are helpless to lighten your burden. At the same time your strength, resilience, your insights,your hope and optimism, your inspirational mothering and so much more……mean we have utter admiration for you. . All we can do is hope with you that each tomorrow is better for you and Simon and Tilda and to remind you that Tilda has thrived to the extent she has and in spite of her condition because she has such an incredible and loving mother sharing the journey with her. You are all always in our thoughts and hearts…… Daryl

  14. chloemay08 February 1, 2012 at 8:04 am #

    Laura – you have some amazing strength and determination, I can’t imagine what you are going through, your posts are so heartfelt and gives is us the ability to grieve for you and to be supportive to you. Big love to Miss Tilda xxx Big love you and Simon xxoo. Than you for keeping us updated.

  15. adz&chez February 1, 2012 at 2:51 pm #

    Laura, Simon and Tilda,
    we read on to your honest heartfelt posts on here. always be honest and. Ever feel ashamed you want more for Tilda, every parent would want the same for their child/ren. Enjoy Tilda’s beautiful smile when she has it, her one laugh is worth way more than a days pain or sadness.
    Only 30 more sleeps till we are back. Chez and I cannot wait till we are back in your lives and look forward to many a BBQ, beers and Tilda outings!
    take care and speak to you soon…

  16. adz&chez February 1, 2012 at 3:01 pm #

    Lovely Laura, Simon and of course Tilda,
    Laura your ability to speak from the heart is amazing. We can’t comprehend how hard it is for you guys each day, but we get a visual of it each time you write on here.
    Stay strong, we are proud of you guys. It must be hard, but remember that Tilda’s beautiful smile and infectious Laugh will out weigh any days pain or sadness.
    We only have 30 more sleeps till we are home, we look forward to being back in your lives (whether you like it or not!!!) and having bbqs, beers and Tilda adventures with you all.
    Till then, take care and see you soon…
    Adz and chez

  17. Diane February 2, 2012 at 12:45 pm #

    The three of you are constantly in my thoughts. If I had a magic wand, or just ONE wish, they’d be yours. Keep your chin up. Di XXX


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