Her story

16 Jan

It has been 7 weeks. Only. Already. I feel a bit lost. I want to write but thoughts are jumbled. There is nothing to report on. Where to focus? Only on the past. I want to relive all her days even the painful ones.
There are triggers to this grief. And they come out of nowhere. We were in a shopping centre last week and I saw a women in a wheelchair with her mum/carer. The wheelchair was not remotely like Tilda’s and the woman was a fair bit older but something struck. It occurred to me that my look could have been interpreted as rude staring. I wanted to tell her that I understood. That I was part of her world. But visibly I am not anymore. A lovely friend mentioned to me how when she first had her baby and left her at home for the first few times, she had to tell people that she had a child at home, she couldn’t bear that people didn’t know such a significant part of her. It is exactly that.
Instead of I’m smiling on the inside, I need a t-shirt that tells everyone about my beautiful girl.
For many people now, Tilda’s story is complete. A sad tale of illness and a life over too soon. But her story is not
over. It continues in the hearts and minds of all those who love her. We remember her courage and her fearlessness and her Tildaness. Her legacy is her strength and I hold on to that. I dream of a day when a Batten diagnosis is not a death sentence. Her story continues in the faces and lives of all the other Batten children still fighting.
Mia, Jake, Kiaana, Olivia, Jazzy, Katie, Casen, Nora, Kane, Nolan, Austin, Nick, Emily, Rex, Kate, Mary Payton, John, Amy, Sara, Cassidy, Hannah, Tatyanna, Mackenzie, Mike, Destiny, Zala, Jovan, David, Joliene, Elijah, Sarah, Kelsey, Nicholas, Ali, Samantha, Luke, Jenna, Jacob, Scott, Curtis, Westley, Alisa, Charlee, Taylor and far too many more.

I miss her.



13 Responses to “Her story”

  1. Jac January 18, 2014 at 12:36 pm #


  2. Cally Berryman January 18, 2014 at 12:46 pm #

    I wish I knew the words that would help. The story about the wheelchair is such a sensitive one. A cure for this dreadful disease would be a magical idea. Love Cally xx

  3. Amy January 18, 2014 at 1:26 pm #

    Laura, I am a friend of Jo’s and I have followed your blog almost since the beginning. I can’t tell you how profoundly your beautiful words about the gorgeous Tilda have affected everyone who reads them – I feel like I know Tilda, yet I never met her. Your strength and your bravery, and the loss of your girl are beyond any understanding, but know that Tilda, the girl with the amazing smile, is not forgotten. X

  4. Scott Curtis January 18, 2014 at 1:36 pm #

    Your posts are always so moving. I hope it helps you a little to write things out. Wish there was something I could do or say that would actually be helpful.For what it’s worth you have my deepest sympathy.

  5. Daryl January 18, 2014 at 2:12 pm #

    Tilda’s story is not over in many, many ways Laura & never will be , She is not forgotten & nor are you, Simon & family. She indeed lives on in our hearts. And reaches beyond in simple perhaps unexpected ways….. as messengers even like me ( to a cousin only moments before reading this) tell her story of courage & strength to inspire. others as they struggle with their own sadness & pain. Her legacy is far reaching & forever…..love Daryl

  6. Anne Bunting January 18, 2014 at 3:10 pm #

    Dear Laura, of course you miss your beautiful Tilda with every fibre of your being but her story will never be over. She is so much a part of you and the qualities which we all loved and admired about her will always be there in your relationships with Simon, Maggie, Janet, Bob – the list is endless. Allow yourself to grieve when the moments hit, you no matter how unexpectedly and know that you are loved and supported by so many
    Love always Anne

  7. Louise January 18, 2014 at 8:06 pm #

    Tilda’s story is not over Laura, she will live on in our hearts forever. I am sure I speak for everyone at Glenallen when I say that we will never forget her and we will recall all our precious memories and special stories often. Never fear that she will be forgotten. NEVER EVER! Much love to you, Simon and Miss Maggie. Louise.

  8. Jon January 18, 2014 at 11:47 pm #

    Your words are perfect.

  9. Danielle x January 20, 2014 at 7:49 am #

    That photo of our gorgeous girl makes my heart swell. What a beautiful image to have in my head to start the week. Love you all beyond words, Dan xxx

  10. Kirsten January 20, 2014 at 12:02 pm #

    Dear Laura, your words really struck a chord with me! Tilda’s story will never be over! She has left such a legacy and such an imprint on all of our hearts / lives; so much of what we do, how we feel and act is now altered thanks to your brave little girl and your family. Sending you a big hug xxoo

  11. Juliet January 20, 2014 at 2:37 pm #

    She will indeed live on in the memory of all who knew her. And we WILL find a cure for that bloody disease. Love to you all,

  12. Laurie January 21, 2014 at 6:26 am #

    Her story is not over indeed. Still thinking of you and praying for peace and hope and comfort.

  13. A parent. January 23, 2014 at 2:54 pm #

    Your beautiful daughter helped to change my childs life. I met Tilda in Andreas classroom. She was so happy, so courageous, so gutsy and clever and her relationship with Andrea was so warm and beautiful that I knew Glenallen was the place for my child. I was so stressed that day it is really only Tilda that I remember. That 15 minutes changed our lives for the better. What a special gift ! I will be forever grateful to Tilda.

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