Archive | December, 2013

There are no words

13 Dec

I have heard this and used it myself so many times over the last few weeks. How to put into words the sadness, the helplessness, the immeasurable loss that has happened. Somehow though, so many have been able to. We have received so many beautiful and heartfelt letters, messages and emails, I cannot even begin to thank those who sent them. They have meant so very much. It also meant so much to have so many there last Monday to support and join us in our celebration of our beautiful girl. Thank you so much especially to those who spoke. I know that my father’s words will stay with me for a long time. 

It was beautiful and terrible all at once. It amazed me how intense the grief could be one minute followed by uproarious laughter as we recalled a ‘Matilda moment’. Thank you to Greenhaven and to Wonderland Fun Park for making such a heart wrenching occasion one to be proud of and one to remember.

The service was filmed and if there is anyone who wishes to view it, please send me an email – and I will send you the link and the password.

Simon, Maggie and I have spent the last week down at the beach trying to make sense of our new world. At times, it is totally fine. Other times, the sadness takes my breath away. How can she not be here anymore? I have such random thoughts and feelings. Some moments, I am intensely angry. After living day to day and moment to moment for so long, I look back over the last few years and the thought that runs through my head is What the Fuck? How could this have happened? This disease is so unbearable. It will take your healthy 3 year old and it will take away her ability to walk and talk and eat and play and then it will take her completely.  I am so angry that this disease is not even on anyone’s radar. How can such devastation continue?

Other moments, I am so intensely sad. It is an overwhelming feeling when it strikes. Moments from the last few weeks come into my head, memories surge into consciousness. Sometimes, it is a realisation. For the last few years, we have been unable to go to the back beach because of the steps, it was not possible with Tilda. Taking Maggie down those steps and on to the beach for the first time brought forth a whole host of different feelings. Happiness as I watched Maggie enjoy the rock pools, tremendous sadness that Tilda wasn’t there too, guilt that we were able to enjoy such a moment.

The realisation that there are no more hospital appointments, no more medicine, no more feeds. Ever since the day we were told that Tilda had a fatal disease, there were two questions that hung over our heads – When? and How? These have been answered.

And I am left with I don’t know what. How do I not be Laura Smith, Matilda Berger’s mum anymore?

The beach has provided such a safe haven for all these emotions and more. We have had some time alone and time with friends and family. I don’t expect this to get easier any time soon. But there is also a myth surrounding grieving mothers. One  I thought I might subscribe to – the loss of a child is so unthinkable and such a fear that most people believe that if it happened to them, they would just die.

I haven’t died. And I will not. The sadness is a part of life but there will be happiness too. Our Maggie, who turns 1 today, makes us very happy. Our friends and our families who continue to support us, make us laugh, feed us – they even cleaned our house while we were away, they make us happy.  And memories of Tilda. Baby Tilda, toddler Tilda, laughing Tilda, happy Tilda. These make me very happy.


Celebrating Tilda

3 Dec

At the moment I can pretend that she is at school or at VSK. Enjoying her intensive interaction with Louise and Amber or covered in baby chicks.
The empty room though, makes my heart ache.
It has not hit me for real yet. I have had moments where I know it to be true. The moment she stopped breathing. The moment they took her away. But, in other moments, I can quite easily believe that her absence is temporary and that the bus will be dropping her off any minute now.
Organising her celebration has been torturous and heartwarming at the same time. We know we want to celebrate her. Going through the hundreds of photos and videos we have, has allowed us to relive all those wonderful moments that captured who she was.
It seemed very fitting to us that we celebrate her life at the place where she experienced so much joy.
Together with Greenhaven Funerals, we invite you all to join us in a Celebration of Tilda at the Wonderland Fun Park, 120 Pearl River Rd, Docklands on Monday the 9th December at 1:00pm. We ask that you wear her favourite colour blue and donation envelopes will be available for the BDSRA, VSK and her amazing school Glenallen.
We would be delighted if anyone would like to speak at the service and ask that you let me know,
Thank you for the beautiful letters, emails, flowers, messages and phone calls. It has been overwhelming but in such a positive way.
We dread saying the final goodbye but know that Monday will also be a time of joy as we remember our beautiful, amazing, indomitable and delicious Tilda.

Thank you

1 Dec

Thank you so much for the beautiful messages of love and support. We are heartbroken and cannot quite believe that our delicious girl is no longer with us. Your words have brought comfort and strength.
A special thank you to my parents who have been amazing, looking after Maggie for the last week and a half. I’m not sure we will get her back from them! Her smile has absolutely been a light in this very dark period.
We will know more tomorrow evening about the details of a Tilda celebration and will let everyone know. We invite all who loved her.
Thank you again so much. It is so heartwarming to know how much our
beautiful girl was thought of.

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