Catch up Time ……..

Oh my Goodness, where does time go? It feels like forever since I sat down to actually type a full blog post……

So here is a small catch up…..

One of the factors in my non blogging has been the fact I have had a chest infection which took me completely by surprise, as did the fact it took me a while to recover. In fact it took 2 lots of antibiotics – this is unheard of for me – I’ve always been lucky in being able to shake off infections (I always insist I’m too busy to be ill), but, like so many people this year, this time I really struggled – a sign I’m getting older? Anyway I’m now back to being fighting fit – well, my version of fit anyway!

Cerys was also poorly over Easter, but now she too is back to being her usual bossy, funny, determined self. She is working so hard at school and has started her own ‘small business’ of handmade cards and canvases. You can see some of her work on her Facebook page Cerys’ Art  and they are proving very popular with family and friends, earning her some pocket money. Maybe we have a mini entrepreneur on our hands! She has also had the excitement of seeing the painting she did with Russian artist Alexey Firsov raise an enormous amount of money for Gracious Hearts and the Brainwave Centre. The people who work at the Brainwave Centre have always been so wonderful to us that it is fantastic when we can give something back.

Nathan has been working on his assignments and finishing his 2nd year at university. His time there seems to be going so quickly. Alongside his Carers I have also been supporting him with typing, etc. It got a little stressful for a time, but now they are all in he is breathing a sigh of relief, and already thinking about the subject for his dissertation next year! Supporting my family will always come before blogging so this is another reason why I have been a bit quiet. He also had a very successful work placement at our local council where he ended up helping to devise and run a disability awareness workshop. This is an area he is very informed about – having started campaigning when he was 10!

Somewhere we did manage to get out to as a family was to see the ‘Weeping Window’ at Hereford Cathedral.

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Also, Andre and I went to see Wicked – Nathan had bought me the tickets for my birthday and it is a show I have wanted to see for a long time. It didn’t disappoint.

In other news… I was honoured to be invited to and take part in a workshop to look at the research priorities for single ventricles. It was wonderful to be in a room with Cardiologists, Cardiac Surgeons, Researchers, Geneticists, Representatives of Charities, Parents and, most importantly for myself, other single ventricles including us ‘Oldies’. For once I was simply ‘Donna’ (not mummy or ‘the wife of.’) and I am grateful that I was made to feel that my opinion counted and that the ‘experts’ could learn from my experiences.

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Finally I would like to pay tribute to Louise from Little Hearts, Big Love for her strength since the devastating, unexpected passing of her little girl Jessica. Although I have never met Louise, Jessica or the other members of their family Michael and Sophie; through Louise’s blog I feel that I know them. Jessica was a fellow single ventricle, and it was reading Louise’s blog on Jessica’s Journey that inspired me to start my own blog and Louise has always been so supportive. A Justgiving page has been set up in memory of Jessica raising money for Little Hearts Matter – a charity that supports families with members who have a single ventricle condition. It was this charity that I wrote my very first blog for. Jessica will never be forgotten and I am sending all my love to her family.

 

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