Archive | January, 2014

A big wave

30 Jan

I am experiencing a big wave of sadness today. It has been two months. And school starts. At almost exactly this time of writing, I should be putting Tilda on the bus and sending her off for a day of fun and cuddles.

But if we are going to go down that path then actually she should be starting Grade 1, full of excitement for a new year, surrounded by friends, chattering to me about her day and running and jumping and playing and all of those other things that fucking Batten disease took away from her.

I miss all the Tilda’s.

It’s hard to be sad around Maggie. Not just because she is so cheery and delightful that you can’t help but smile. But also because I don’t want her to see me sad. I know it’s ok to show emotion around her but she doesn’t understand at the moment. There is time for that later.

Maggie is sleeping at the moment and I am taking the opportunity to indulge my sadness. Anger. Pain. Ache. I watch videos and cry.

I am still ok but today hurts.

Tilda in New Zealand, age approximately the same as Maggie now.

Tilda in New Zealand, age approximately the same as Maggie now.


We are ok

28 Jan

Thank you for asking and for the continuing messages of love and support.

Today I am feeling very grateful to Emily Eaton for her blog – Creating New Normal. She writes about her grief experience after losing her 4 year old son to leukaemia, only 15 days after diagnosis. What is wonderful about this blog is how it recognises that grief is different for everyone and more than that, it is ok to feel ok.

For the past little while, I have been struggling with the idea that perhaps I am not grieving as I ought. Perhaps I am still in denial. Surely, if I loved Matilda, I would be falling apart without her. But I haven’t fallen apart, I have carried on. I have days and moments where I am happy. And that left me feeling like I was doing this all wrong.

I had discovered Emily’s blog early on in Tilda’s diagnosis – when I googled How to Plan a Child’s Funeral. I read her determination to seek happiness and joy in her life even after such a devastating loss and I was comforted that perhaps I could be the same. It has taken me until now to go back and re-read and I am so glad I did.

This post made me nod along and thank god that someone else had been feeling this and had written it down. The fact that we are also nearing our 2 month anniversary is no coincidence I think.

The good news is that for most of us, grief is not overwhelming or unending. As frightening as the pain of loss can be, most of us are resilient.We may be shocked, even wounded, by a loss, but we still manage to regain our equilibrium and move on. That there is anguish and sadness during bereavement cannot be denied. But there is much more. Above all, it is a human experience. It is something we are wired for, and it is certainly not meant to overwhelm us.

It is a relief to me to know that it is ok that I am feeling ok.

I miss her. I think about her almost constantly. My intense moments of grief are still happening. I wish she was here. But I carry on. And I carry her with me. Her resilience powers my own.

Smiling, gorgeous Tilda

Smiling, gorgeous Tilda

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.


Home again

4 Jan

Christmas and New Year are behind us. We spent time with our families and friends and had some more time down at the beach. Thoughts continue to be random and changeable. There is an ache that never completely goes away. In my mind, I say her name over and over again. Tilda, Tilda, Tilda.

I try and remember everything. Get frustrated when her early years escape me. Worry that I didn’t tune in enough then. Wish I had recorded more, more, more. I am greedy for the videos I have of her. Ironic that many of them come from trying to capture a seizure on film for her neurologist. Before we knew about Batten. A catch in my throat as I realise there will be no more new photos of Tilda. No more videos to come. What I have is all there is. Such a simple thing to realise but such devastation.

The anger has dissipated somewhat but it is still there. I hope that it will be the drive to, at some point in the future, become very involved with the Batten Association. There has to be a way. I need to understand more. More about how this disease works and more about how cures and treatments are discovered.

I focus a lot on memorials. How to honour her, how to keep her name going. I will think of the right thing.

Next week will be hard. Simon starts back at work. Normal life resumed. Except of course, it isn’t normal at all. We will also be saying goodbye to Tilda’s equipment. Her wheelchair, her bed. Hopefully going to someone who needs it. Knowing that these things did not define her but letting go of anything that is part of her is hard.

Joyous Maggie. Bringing us smiles and laughter and hope. Sometimes, I look at her and I cannot believe that I get to watch her grow up.












Thank you so much to everyone who has supported us over the last weeks. I have been very remiss of late in replying to messages and for that I am very sorry.

Much love to all.


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