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Life Chez Dee Episode #21: Spreading the word

So this weekend has been all about Edward again. We’ve been in a local store, raising awareness, and a group of NCS Students have been at Lytham Hall fundraising for The Edward Dee Fund too. I’d suggested to William, who is in this NCS Group, that they split up so that they could sell raffle tickets in both places, therefore reaching more people. So William, and another, joined us in Booths.

It was lovely to be in St Anne’s Booths, right on the doorstep of Edward’s school, near to where some of our family live, and indeed not that far from where Edward is buried.

It’s nice to be out and about and chatting to people. I know I reach many people via social media, but it’s nice to meet people face to face; and those not on social media. We had lots of support and lots of great feedback as to the work we do.

We took with us the living selfie frame. For those who don’t know about this, I had an idea about a living frame. I chatted through my idea with Tony Ford, who manages St Anne’s in Bloom, The South Fylde Community Railway Line, and Friends of St Anne’s Stations; and he with the help of Fiona BoisMason, St Anne’s in Bloom and Friends of St Anne’s Stations turned my vision into a reality. The frame was planted with alpines, representing the growth of the charity, the connection with nature, out in the community, community groups working together, making something beautiful which was a talking point, raising awareness for a long time. The frame has longevity, it is a talking point it is fun, it connects people, it engages people, we have raised awareness. It is everything I hoped it would be, and more.

Lots of people stopped to comment at how beautiful it was; we even featured in lovely piece in the LSA Express this week. Many stopped to have a photo taken in the frame, including lots of Booths staff, and indeed the lovely Fiona from St Anne’s in Bloom, who grew and nurtured the plants to go in the frame.

Troy came along today. Troy is doing his Duke of Edinburgh and for his work in the community, he wanted to help the charity. Playing to Troy’s strengths I asked him to make me a video of all the great things the charity was doing in the community – a sort of promotional video.

Troy came along and filmed us raising awareness, and some of those who were using the selfie frame; he then went along to film the NCS students doing some fundraising at Lytham Hall. You may see Troy out and about filming the Tree #forEdward in Lowther Gardens; or the Garden #forEdward in Lytham.

To have the impact of raising awareness, I can't do it all without help, and today was no exception, so to have Aiden, Alex, Ralphie, Hugo helping was wonderful too. Many leaflets were handed out; much talking was done; and the public generously gave donations to support the work of the charity.

I chatted to so many people; it was lovely. Jill for example, told me about her brother who died when she was younger, and her sister who died when she was older. We talked about the profound effect on her of losing siblings.

We talked about how not everyone can do what I do, not everyone can raise awareness, not everyone can set up charity, not everyone can talk publicly, about the diseases, about the person who has died, about coping with the loss of that person. We talked about what was cathartic for one person was not for another, we do what we feel is right, how we find our own way. She was saying how she followed all the work I do with interest; how she admired what I do, and how she cannot cope with anything to do with breast cancer and the loss of her sister, and how she runs a mile at the thought of race for life and other such things.

I talked about all the charity was trying to achieve, not just about raising awareness, but by keeping Edward alive and at the very heart of the community, which is where he would be were he still here; how this "Spirit of Edward" is at the very core of all we do, and is the essence we try and capture as we engage with and inspire others in so many ways. We talk about breaking down the taboos surrounding grief, and surrounding child death. We talk about how our loved ones died. We say exactly that. They died. They didn’t pass; we didn’t lose them …. if they were lost, we’d have found them.

Keeping loved ones with us, and alive, is important. Important as a parent, important as a sibling. How so often we talk about grief and loss, from the perspective of the child, or the parent, but as she had gone through it, she talked about from the perspective of a sibling, and how she felt for my boys, for William and Oliver, and how important it was for them for me to be doing what I’m doing. To keep Edward’s spirit alive, give him a legacy, talk about the memories, keep him in the family, for ALL the family, including his brothers.

We talked of coincidence, and of no coincidence, of signs, of incarnation, of spirituality, of the people who cross my path these days. I could go on … this might be the subject of another blog though. I felt really uplifted talking with Jill, and our goodbye ended with an inevitable hug.

I spoke to a lady, who I knew personally, and recently widowed … a young widow, with two young children. We chatted, each other knowing the pain the other deals with daily. And through the smiles and the chit chat we know how it is, we don’t really need to say anything about how things are … we know. We know that one day is not the same as the next; that one hour is not the same as the next, that each and every day we live with the grief, through the tears and through the smiles it is there … always there… with us, around us, in us, our very beings changed by it.

We talked to so many who had been affected by meningitis and sepsis. The diseases portrayed as rare, but the number of people who talk to me who have been affected by them is frightening. Those who knew people who had lost their lives to meningitis or to sepsis; those who have fought sepsis; those who have fought viral meningitis; and those who have fought bacterial meningitis; those we remember, and those who remember the disease as are living with the after effects.

All those affected by these diseases saying how much they thought what I was doing was so valuable, and thanking me for doing what I do. I felt incredibly humbled. I do know I’m doing valuable work, but it still makes me feel very humbled hearing it, from those who really understand why I’m doing what I do. I know there isn’t enough information out there about the diseases and the signs to look for; so telling people, spreading the word, raising awareness about the diseases, knowing the signs, trusting instincts, acting fast, the importance of vaccination is such an important message to get out there.

And I make you all this promise, that as long as I live and breathe, I will keep on telling people, keep making them aware, keep them up to date with information, and keep telling my story, and all about my boy – the wonderful, enthusiastic, energetic, determined firecracker of a boy; the inspirational Edward Dee.


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