Outside the bubble

22 Jun

I was trying to explain to someone the other day, what it was like during Tilda’s illness. Not the shit bits. But about the feeling of being inside a protected bubble with Tilda’s happiness at the core. Day to day living cocooned us from the outside world and inside our bubble was fear and anxiety; sure. But mostly there was a whole lot of love and support. Inside that bubble were our beautiful friends and family, there were the followers of this blog. Supporters from the sidelines. There was a focus – whatever we could do to make Tilda’s life better. It was simple. Heart-achingly so. That bubble intensified in the weeks leading up to her death. A surreal two weeks living in an alternate world.

It has been a year and a half since Tilda died. 569 days actually. And there is now a feeling of being back in this world. Outside that bubble. And I’m not sure how I feel about it. This world seems grittier, harsher and tainted with sadness. Politics seems meaner. Closer to home, the faded bubble sees The Tilda effect which once seemed so powerful, having worn off for some. Arguments allowed to fester, a focus on the petty. It is reality, I understand. But I hate to think that things can just go back to normal. Wasn’t there something to be gained from this shittiness? A recognition of the importance of family and friends and love and support? These things matter. Hang on to them.

I finish my placement in 8 days. I will be launched into the working world, hopefully sooner rather than later. I take with me all that I have learnt from this course. I take with me a profound memory of that bubble that surrounded us during a time of terrible sadness. I take with me a knowledge of the genuine goodness and the genuine kindness of people which I know will sustain me for the rest of my life.

In the Bubble. Tilda on her magical Wish Day.

In the Bubble. Tilda on her magical Wish Day.


5 months into 2015

18 May

It’s been 5 months since last I wrote. Busy. Maggie. Friends. Family. Uni. All those things that make a life. 

One of the hardest things about meeting new people through uni or placement or just through the happenings of the day is that they don’t know Tilda. They don’t know me as Laura Smith, Matilda Berger’s mum.  And they won’t ever. They might not realise that Maggie has an older sister and that she died when she was 7. Why should they? And how do you bring that up? Do you? Do you pronounce yourself to those newly met people as a mother of a child that is gone? When is the right time to talk of her? 

The dreaded question – how many children do you have? Such an innocent question. I have struggled with my answer to this , how to not make the person asking feel terrible. How to honour Tilda. 

I have two daughters. Maggie is 2 and Tilda was 7 when she died in November 2013. She had a rare genetic illness called Batten Disease. Which is a shitty fucky shit of a thing. 

 She was amazing. 

For me, I am always happy to talk about Tilda. Always. Ask me about her. I will never want to stop talking about her. 

End of 2014

17 Dec

I’m quite happy to say goodbye to this year. It has been a pretty rough one. There have been some good things most definitely. Starting uni has been fantastic and that is all going really well. Darling Maggie is growing and becoming more delightful each day. Friends and family have been around to laugh, eat and sing with. But the milestones of firsts have been hard. Moving away from where Tilda died was hard. Living a full year without her has been hard.

I also broke my ankle last week! I have 6 weeks in a cast which is absolutely not fun at all, especially given that I live up a steep, slippery, narrow little staircase! Again, my friends and family have rallied so I am being taken care of. I started off very poorly but I am getting MUCH better at manoeuvring myself about on crutches and Maggie has proved herself to be very useful, fetching my phone and carrying plates to the table.

IMG_3003 IMG_3023

So good-bye 2014, I bid thee farewell. Bring on 2015 which sees the end of my degree and the start of my Social Work career, it sees a much longed for and much anticipated overseas trip to visit my dearest and oldest friend. It sees me turn 40. It promises some hope and some future dreams.

I would like to say a huge thank you to all those who follow this blog. Those who read, those who comment, those who send their love. I am pretty hopeless at writing back to people but I read each and every comment and they fill my heart with love. Thank you for caring about Tilda, for remembering her. Thank you for giving me a place to vent, cry, laugh, remember and document the story of an extraordinary little person I was lucky enough to call my daughter.

Thank you.

Thoughts from this week.

23 Nov

There has been a lot of loss in the last year or so. Up until the beginning of 2013, I had not experienced much death. Grandparents. Another elderly relative. 2013 and 2014 saw the loss of darling Jack, my best friend’s father, a much loved colleague, a dear friends twin sister, another friends daughter. My own beautiful Tilda. Each death wrong and before the expected time. Sometimes I feel quite numb to all this loss. I recite the names and cannot process how they are actually gone. Forever?
I am lying in bed awake. I can’t sleep. It’s been a fraught day and my mind won’t settle. I’ve been going through photos and videos. I’ve been trying to recapture the feeling of a Tilda hug. I’m remembering how hard it was. How frustrated I got. I wish I could go back and change some things. Do better. Even in those last days I wish I had done more. Practical things like making sure her tongue was not dry.
I wish that I had washed her body after she died. Sometimes I feel so fucking rational. Unable to let go with the passion and ferocity that would feel like a release. Wailing. Screaming. Ranting.
Writing soothes. Takes the twisted thoughts and sets them down.
This year has gone too fast.
I am having a day to myself. A bit of pampering. Prettying and fortifying myself for Sunday. Placement is over. A sense of relief but also a what now?
Maggie has been a bit unwell. Old anxieties rear up. She is snuggly and cheery aside from her hot head and refusal to eat. This morning no fever. Relief.
Devastated to hear about the death of the cricketer Phil Hughes. I’m so sad for his family and friends. So sudden and unexpected. Feel desperately sorry for the bowler too. My thoughts are with all affected.
I miss her. I missed her when she was here. Our grief began with that first seizure by the pool. Our grief will change and morph and have moments of intensity but it will never be gone. She will never be gone.

I miss that smile.


Batten Family Meeting

15 Oct

I had the privilege and heartbreak of meeting a whole bunch of Batten families over the weekend. Families with children who were still here and families with children who had passed away. It was surreal and challenging and emotional and wonderful and terrible.

These are families  who understand myoclonics, feeding tubes, drop seizures, epilim, hospital stays, suctioning and wheelchairs. These are families who understand loss and grief. There were tears but there was also laughter. It was overwhelming at first, I knew a few faces but not the majority. I was mistaken sometimes for a friend of a family rather than a mum of a Batten child who had died. Most people there never got to meet Tilda. I found that hard. But as I settled in, I started to speak one on one to mums and dads. I got to catch up with my friend Peta and cuddle her beautiful Mia.


I caught up with another friend Lisa and finally got to meet her gorgeous Katie, someone I had been longing to meet, her love for Dora and swimming resonating strongly with me. I met other families and children, names on Facebook turning into real people and real connections, new friendships forged.

I went with Nicole and Maggie. Nicole met and fell in love with Max, a beautiful boy born 6 days after her own Jack. It was uncanny how similar they were.


Maggie, as is her wont, was a social butterfly who combated any descent into sadness with her utter delight-fulness.

On Sunday, there was a memorial service.


It was hard. It was battering to listen to the names of children who had died. So fucking many. Name after name, waiting to hear Tilda’s, waiting to hear Jack’s. Which names will I hear next time?

It is coming up for a year since Tilda died, which is so unfathomable to me. I feel like these next few weeks leading up to the dreaded day will be hard. I am teary and emotional. Stoic and unmoveable.  Unlike her birthday which could be celebrated, I don’t know how to mark the day. I don’t want to organise anything. But I don’t want to do nothing.

I have often heard that the second year is sometimes even harder than the first. The realisation that it is forever hits. You spend your first year just getting through each significant date. The first Christmas, the first Mother’s Day, my first birthday, her first birthday. It is the second year which cements the fact that she is not coming back and you have to get through it for the rest of your life.

It is not all sadness and sorrow. Friends made over a shared weekend help shoulder the pain. And my friends and family, my darling wonderful excellent friends and family who have always been there. They help everyday.

You just keep going.

For Tilda

10 Sep

She would have been 8 today. Should have been 8 today. It is bittersweet to celebrate this day but it needs to be celebrated. Today being the day she came into the world 8 years ago is absolutely cause for festivities.

So we thought we would jump out of a plane.



It was amazing and exhilarating and beautiful and emotional.

I am knackered.

Keep an eye on channel 7 news tonight as they were there filming, hopefully we will get a plug in for Glenallen and for Make a Wish and be able to raise some awareness of this bastard disease that took away our girl far too soon.

A special day celebrated with truly special people. Thank you.

Update: Here is the link to the story channel 7 did. A big thanks to Paul who did a wonderful job.
Charity skydive for Matilda

Five years. One week.

3 Sep

Five years ago today marks the start of Tilda’s journey. Five years ago today, she experienced her first seizure at a local swimming pool in Darwin. That seizure led to more. Which led to even more. Hundreds a day. She lost the ability to talk, to walk, to eat, to play. She lost her life. And we miss her so fucking much.
I can’t do anything to bring her back but I can learn from her fearlessness and courage. I can try and bring awareness to a shitty, shitty disease called Batten Disease. I can pay tribute to the organisations that made her life better.

This time next week, Simon and I will take our leap into the sky. If you would like to be there as we land, we would love to see you.
Date: Wednesday, 10th September
Time: Weather dependent we should be landing around 10:15am
Where: Moran Reserve, Marina Pde, St Kilda


There is still time to donate, if you feel you would like.

To donate to Make A Wish, visit –https://give.everydayhero.com/au/laura-36

To donate to Glenallen School, visit https://give.everydayhero.com/au/simon-21

Thank you so much for your continuing messages of love and support.

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