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
Written by
JOLLYDOLLY
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9 Replies
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Hi Jollydolly
Lovely to hear from you.
Losing your sister so young and caring for her must be so incredibly hard and leave a massive hole in your lives.
It must have been heartbreaking realising the prognosis and true consequencies of JenJen's health condition.
Jollydolly, it sounds like you are getting the support you need and are coping living one day at a time and making yourselves go out. Keep doing the same.
Communicating using Makaton will be such a useful skill to have and use. This together with donations for Epilepsy are a fitting legacy to your sister's memory.
I think feeling positive puts us in a happier place and lets our bodies recuperate from the stress and upset. We never forget but it gets a tad easier to cope with. Always here for you Lottie xx
I'm so very pleased to read that you are taking positive steps to help yourself and others, that's brilliant news! you should be so proud of all you did for your Jen during her lifetime and now, raising awareness and funds.
I'm very interested and impressed with your understanding of Jen condition Jolly and I'm sure that's made a huge difference to how you have coped.
Hi JOLLYDOLLY I'm overwhelmed by the love you have for your sister and turned it all into something very positive for people who suffer the same as you do with the loss of your sister and to raise money and be there like that to support others is very brave with you still grieving your sister would be so proud of you and your family for what you have done for others aswell for her memory this is fabulous I for one think you are brill...keep up the good work in raising awareness
I never knew what real grief was like until I lost Jen. She always knew I loved her very much as I said to her every day, "Why do I love you so much?" and her reply would always be "Because I am your bestest sister" - little did I know that she would go so quickly and so suddenly and I would never hear those words again whilst on earth.
I am on the floor to be honest and each day that passes, is a huge chore. BUT, in order to move on, I have to do something positive, Jen liked to help others and she taught us so much, so I want her beauty to live on, through us
Jen never liked anyone being poorly or sad, so again raising money in her memory is another way of coping and hopefully go towards research for a cure and hopefully no one else has to go through what we have gone through.
Hope you are coping and are ok. Sending love and best wishes
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xx
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