Sunday, 29 November 2009

Building memories...

It's funny how the weeks turn in to months and I realise that I haven't really talked about much else on this blog than cake and quilts for ages. Way back in July I mentioned that I had done some training at Helen House to help support other bereaved parents. I haven't been allocated a family yet but I have helped facilitate a workshop for more newly bereaved parent with the theme of 'How grief changes over time.' In spite of being nervous about talking about my experiences to a room full of strangers, I found the whole day extremely fulfilling.

Yesterday I helped out at another workshop at the hospice, this time for parents who are using the hospice now for their children, called 'Building Memories.' My biggest fear this time was that I was a bereaved parent rather than a parent of a life-limited child and I was worried that this may seem insensitive. I hope it wasn't.

When Tom first became ill, it felt a bit like we had become public property. That sounds so ungrateful now, but I felt that I owed a lot of people something for the support we received. After the first three months in hospital, Tom was transferred to The Children's Trust in Surrey for rehabilitation on the unit for children with an acquired brain injury. He arrived there in October 1997 and that was when I started writing a diary for him. It had the most unoriginal title of The Secret Diary of Tom D******, aged 4 1/2. Pilfered straight from Adrian Mole! I wrote it in the first person, as though Tom were telling his story and each month I posted it out to all the people who had helped us get through the first few months. I designed a little logo heading and set myself boundaries of 2 sides of A4 paper in a generous pt.14 font.

Little did I know when I started it that I would continue writing it monthly for the next 8 years, sending out over 60 copies around the world. Some of the copies I sent were to people I didn't even know but had somehow got wind of it through other family and friends and showed a genuine interest. It never felt like a burden to write it and the actual writing process was surprisingly cathartic. As I became more experienced with the computer and technology allowed, I began to include photos and so nearly a lifetime was recorded in those pages.

I talked yesterday of Tom's diary and of my plans to maybe self-publish it so that it is more than 5 folders from WHSmith full of memories. I have been looking at Blurb and Lulu and it remains on My List of Things to do.

I also shared my other book with the parents who attended and I hope it will inspire them to do similar things for their children.

Then I got onto the subject of blogging! I suppose had I known about blogging, or had it been around back then, Tom's diary would have been online. How times change. I talked about the sense of community I had found as a result of being a blogger and that the world is there at your fingertips. When you have a disabled child, time is precious and isolation is a real issue and so being able to connect with people who have similar interests or experiences is sometimes difficult. In the early days of my life without Tom, the Internet became my friend: always there and something I didn't have to make an effort for, other than to switch my PC on.

It's all about sharing for me. I shared Tom's life with people through his diary and I am sharing my life and others through blogging. That is what does it for me. Sharing.

Yesterday, my day was rounded off perfectly by sharing a welcome latte with a friend I have made through my blog - Julia. Julia and I have been reading each others blogs for quite a while now and we finally met in person. A last-minute arrangement, hastily made by email on Friday evening! We talked of blogging and how I had covered it during the workshop, and also of all the pros and cons we have both experienced from our own blogs. We talked of sharing. I have a feeling we could have talked for hours.

It was so lovely to meet you Julia, and no, I didn't mind driving an extra 5 miles! I drove back to London with a smile on my face having had a Good Day.

I just noticed that this is my 200th post, and probably my first post without a single photo. Quite a milestone!

ps. have a look at the Christmas cards on the Helen House site, I thought they were really nice and bought all mine from there this year... Or why not have a look at these...


  1. I'm often at a loss to explain adequately why I blog, and why I enjoy it so much. But sharing and friendships are certainly at the heart of it.

    Another good book creating site is Bob Books. I think that would be a great thing to do with Tom's diary.

    N. xx

  2. I so admire the work you're doing with Helen House. I think it's such a good thing...for you and for all the families you are and will be helping. And I think publishing Tom's diary as a book is such a wonderful idea.

    K x

  3. I have no doubt at all that you'll be helping the parents you meet - and hope it helps you in return.

    Your idea of publishing Tom's diary is wonderful. I'm sure it will be a hugely comforting to other families facing what you've already gone through.

  4. When you mention Tom I want to comment but don't really know what to say. I bet you have touched and helped so many people by openly talking about your feelings and Tom would be extremely proud of his Mum. x

  5. It is wonderful to think that you have been sharing stories in your blog for over 2 years and in that time you have made so many friends. I am know that the special people that you meet at the Hospice will value your experience and be really grateful to you for having the courage to share it. I so admire the work that you are doing.

  6. I can only imagine how much your experiences must help others in a similar situation but I'm sure they do help others at Helen House enormously. I think publishing Tom's diary would be a wonderful thing to do.

  7. The reasons to blog are so many, but always that sense of community and shared experience is a primary reason to continue. I also love that blogs are a summary of true human experience - sometimes filled with worry or anxiety, sometimes exciting, but often just a documentation of day to day life. Although each of our experiences are unique there is a common theme of family and love.

    I am certain that your diary of Tom's life was filled with family and love. It will make a book well worthy of reading.


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