Hi Chloe and everyone!
Thank you for thinking of me. I am okish, starting to really understand what was going on with my sisters diagnosis and why she was ready to qualify for her Angel Wings.
I have been following the story about that beautiful baby boy on the news. His illness and subsequent journey, was quite similar to Jenny albeit the initial diagnosis was different, the outcome and the consequences were the same.
I realise now when I look back on the months leading up to the final seizure, that Jenny was finding it difficult to see and hear. She was finding it hard to swallow also. Had she woken up which was very unlikely, then she would have most likely been blind, deaf and needing a feeding tube. None of her family would have wanted that for her, having no quality of life, being frightened and unable to do the things she wanted.
Her not being here is unbearable, but a little easier. We are still clock watching, still dread weekends, but we have made ourselves get out and about.
We have just completed the first two modules of a Makaton course, as we want to help others, like Jen Jen did. We feel being able to communicate with others is a fitting legacy to our Jen Jen as she taught us so much in oh so many ways and will also help us to move on and handle our grief.
We have raised over £800 so far for the Epilepsy Society with donations from all of our family and friends, so that is a massive tribute to Jenny and we are so proud that she brought so much love to others.
Basically we are taking one day at a time.
How are you all coping, how are you all feeling?
Thank you again and take care xx