25 Nov

On Thursday morning, I was told in no uncertain terms that Matilda had very little time left. Frantic calls were made and friends and family gathered. But our little one had other ideas.
True to her feisty self, she refuses to give up and so neither do we.
She battles laboured breathing, increased seizures and high temperatures. Each night, I lay in my mattress next to her bed, listening to each breath. Sometimes she stops.
In my mind there is a battle too.
Don’t give up……Let her go……Keep fighting…….Be at peace.

We live in limbo. And are so thankful to have our amazing friends and family around us. Thank you also for the messages of love and support that are coming in. It means the world.


28 Responses to “Defiance”

  1. Melissa November 25, 2013 at 9:18 am #

    Keep fighting baby girl Xx

  2. Jackie November 25, 2013 at 9:18 am #

    Oh shit!!! Laura, Simon and your families sending you strength, love and hugs to you all!!! You have raised a fighter just like yourselves! Always in our thoughts. Go Tilda an inspiration to us all xx

  3. Kimmi November 25, 2013 at 9:19 am #

    Keeping fighting Tilda, thinking of you & your family always Xx

  4. Stella F November 25, 2013 at 9:20 am #

    Love you all deeply and thinking of you xx

  5. Julia, Brian and Tobias November 25, 2013 at 9:22 am #

    Keep Fighting Tilda, we all love you very much.xoxoxo

  6. Irene November 25, 2013 at 9:27 am #

    thinking of you all and sending more hugs OOOOOOOOOO

  7. Laurie November 25, 2013 at 9:37 am #

    sending more love your way. we don’t know each other, but your family has touched my life. peace be yours.

  8. Emma Dodd November 25, 2013 at 9:39 am #

    Lots of love and hugs to you all. You are constantly in my thoughts. Emma xx

  9. FiFi November 25, 2013 at 9:42 am #

    Sending so much love xoxo

  10. Rick Loos November 25, 2013 at 9:55 am #

    I’ve wanted to write comments many times and imagine how I would react if my little boy had the same condition…. and that’s where it breaks down for me. All I would want is for his room to be filled with love and for him to always feel surrounded by it. I know that Tilda is feeling that. Keep pouring it on Laura! You really inspire me! xox

  11. Garry and Carole laird November 25, 2013 at 10:24 am #

    Sending our love to you all.

  12. Anne Bunting November 25, 2013 at 10:31 am #

    If ever a child was surrounded by love, Tilda is. Both from you, Simon, Janet, Bob and all your extended family and all those who are not physically with her but love her from a distance. Love from all the Robinsons

  13. Wendy M., Doose Mama November 25, 2013 at 11:05 am #

    So much love sent your way! And prayers of strength and more love.

  14. Sandy, Maria, Ruby Poppy and Lulu November 25, 2013 at 11:20 am #

    All our love and thoughts are with you guys…you’re just the most delightful, wonderful, lovely team of bloody champions xxx

  15. Pete November 25, 2013 at 12:10 pm #

    Hey guys, just out in Morwell for another (quiet) shift, and keep thinking about you four. Lots of love to all of you…

  16. Jac November 25, 2013 at 12:14 pm #

    What an incredibly tough position you are all in.

    Try to take care of yourselves, too, so you can keep taking such good care of tilda.


  17. Juliet November 25, 2013 at 12:53 pm #

    A heartbreaking time for all of you. All my love

  18. Daryl Linnane November 25, 2013 at 1:19 pm #

    Always in my thoughts……strength and love to you all

  19. Ken and Wendy Brown November 25, 2013 at 3:06 pm #

    Staying with you on your journey and sending our love and prayers.

    x Ken and Wendy

  20. JessB (Kate's friend) November 25, 2013 at 3:10 pm #

    Love to you all Laura, Simon, Tilda and Maggie. I’m asking people to pray for Tilda and her family on Facebook – I hope you don’t mind, and I thought the extra prayers wouldn’t hurt.

  21. Jennifer Mars November 25, 2013 at 3:59 pm #

    I am so sorry. I wish that I had better words for you but I am at a loss to find the right ones.

  22. Eleanor November 25, 2013 at 6:07 pm #

    We wait each day to hear your updates and talk about you in between, sending hope, love, hugs, strength and whatever else you guys need xxx

  23. Adam, Chez & Jack November 25, 2013 at 7:11 pm #

    Our thoughts with you all, you really are the awesome foursome. Stay strong, everyone is behind you. Love to Tilda!

  24. Adam, Chez & Jack November 25, 2013 at 7:20 pm #

    Thinking of you all, truly you guys are the awesome foursome. Stay strong, lots of love to Matilda. Love the Radleys

  25. Kylie November 25, 2013 at 7:50 pm #

    I am so sorry to read about what is happening for your darling Tilda. I don’t know you but from your beautiful blog I know the depths of you love for your children. Thinking of you. Kylie

  26. Anne Ngawati November 26, 2013 at 12:40 pm #

    Dearest Laura & Simon, Tilda & Maggie….Our prayers & love are with you all. You are a true testament to enduring strength & hope & infinite Love. God Bless You All. Much Love Always, Anne, Murray, Shannon & Regan xoxo

  27. Vicky Katsavos November 26, 2013 at 8:12 pm #

    Hi Laura, We met through Nicole and jack and i have followed Matilda but have never commented… Wishing you all love and strength during this difficult time..Always and forever in our hearts and thoughts… love from Vicky and family… Keep fighting little Miss Tilda xxxxx

  28. Stella and Kirsten B November 27, 2013 at 7:18 am #

    Love you Tilds stay strong xx

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