Holly's practical Drama exam went well she thinks, although she wont know if she passed until August. The examiner was laughing so that's a good sign.
She is off school at the moment with a sickness bug but she is starting to feel better now cos she is getting cheeky!
Jack has had a couple of days of really bad seizures but they seem to have calmed down now. Wednesday was a particularly bad day and he was so exhausted that he hardly moved. Yesterday he was a different boy and his eyes were wide open and he was taking everything in. I love it when he is like this, he was even smiling at me with the odd chuckle thrown in though I am not sure I want to know why he thought I was so funny.
I have two very cheeky kids.
Maz from Unique, the support group for families who are affected by chromosome abnormalities has put together a video to highlight their work. She did this in her spare time and it took her a nearly a year, not surprising when she was trying to fit it in on top of working and looking after a child with a rare chromosome abnormality. See if you can spot my gorgeous boy.
Unique supports 8000 families in 81 different countries and is not government funded. Their work is so important because having a child diagnosed with a chromosome abnormality is so isolating and the future can seem quite frightening and there is usually very little information the geneticists can give you about your diagnosis as it is often so rare. Unique brings together families with similar conditions and professionals who are able to learn more about these chromosome abnormalities which in turn makes them better informed and more able to support families during the initial diagnosis.
It feels good to have a network of families who understand just how hard life is at times.
My friend Angie (who was the encouragement behind yesterdays post) is doing the Race for Life this weekend. These are events run by Cancer Research UK that take place across the UK which consist of 5k and 10k races. You can run, walk, hop, skip....whatever floats your boat, all for charity. It's a great event, one my niece, Diane took part in 2 years ago.
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| She ran it for me! |
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| at the finish line |
I was a very proud Auntie, especially so when I learned that it was my name on her back. I was quite emotional!
So best of luck to Angie, her two daughters Debbie and Shelley and their friends this weekend and I hope you have a great time while raising money for such a great cause.
