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Life Chez Dee Episode #31: Forever days

We’ve just spent the day with Meningitis Now at one of their Forever Days, to support families who have been affected by meningitis in some way. The day was held at Alnwick Castle, Northumberland. We knew it was a bit of a trek for us, but given that it was ages since we had been on a support day, and given that we had nothing planned this weekend, we decided to apply to attend the Forever Day, and make a weekend of it. We managed to get a very cheap deal with a Premier Inn not too far away, so we visited Bamburgh and Warkworth on Saturday in the glorious sunshine; and Alnwick Castle with Meningitis Now on Sunday … so it was quite a “castley” weekend all in all.

We arrived along with the other families to be greeted by Meningitis Now staff. The family support days not only allow the families to spend time together, which is so important, but to be together in a safe place, with others who understand; a non-judgmental place, with people who will listen, and who can provide support wherever needed.

The theme of the day was Harry Potter, and I think the highlight of my day was when the “real” Harry Potter turned up. I know, I know, it wasn’t Daniel Radcliffe, but the guy playing HP was as good as the real deal … and I’m not easily swayed when it comes to impersonations. He was fabulous; posed for photographs, did some magic to demonstrate to us muggles how it’s done … I was mesmerised … so much so, it was I who wanted my photo with him, more than the kids!

There were plenty of activities on offer, including making a pottery tile, wand making; there was time to get stuck into storming the castle, do a bit of broomstick flying, we even squeezed a quick tour of the house.

All these activities were interspersed with time together to chat to staff and other families, and of course time to warm up, drink tea, and have cake, cake and more cake.

I knew some of the staff there, including Chris, who was in fact one of the first few people from the charity to visit us after Edward died. Some of the staff there I knew the names of, or because I’d had conversations with them on the phone. All it seems though knew who I was, clearly my name infamous within the charity!

I spoke to so many about my writing, my blogs, my charity work, how we all were, the support I’d received, and how much more we could rely on them should we need any sort of support at any point in the future, which is incredibly supportive, generous, and touching.

This took me to a point of reflection of those days, weeks, and months following the death of Edward. In the darkness of the black hole we were in, when we were desperate, numb, traumatised, helpless, grieving, shocked … it was Meningitis Now who reached out to us to help, support, visit and care. So many charities, groups, healthcare professionals could have been there for us and offered help; healthcare professionals, bereavement charities, counselling services, grief charities, meningitis and sepsis charities … but they weren’t … none. The care and support was there from just one charity, and that was Meningitis Now. They wrote, they phoned, they visited, and they have continued to do so ever since.

I chatted with Steve and Jo, a lovely couple, there at the support day still raw from the death of their beautiful daughter Primrose, who died in May this year, just a week before her 2nd birthday. They don’t live near me, otherwise I’d be chatting more with Jo, but sadly, as there are quite some miles between us, messaging will have to suffice, but I know it will not be the last I see of them, nor indeed the last contact I have with them. I wanted to tell them so much, and yet what could I tell them. Nothing. There is nothing I could offer them other than a knowing of their pain, a complete understanding. What touched me was that like us, they talk of Primrose all the time, as we talk of Edward all the time. Edward is as much a part of this family now as he ever was; we speak about him; we speak to him; and so that will always be.

And he was here again today with us. Many reminders as we walked around the castle; memories of when we were last there with Edward. He sent a robin to greet us as we arrived; and the rain to spritz our faces as the day went on. Even the wand colours chosen by Oliver, were orange and blue … I noticed straight away …. Oliver commented on this to me later.

Speaking at length today with so many who care, who know what we’ve been through as a family, and indeed still go through, there were tears. Tears which are deep within me, but come out so easily. That hurt, pain, trauma, grief and love doesn’t go away; it will never go away. The Forever Day may be just one day, but our life has day after day living with the void which Edward has left, forever. For us, every day is a forever day.

On the journey home I took out my notepad and made some notes of my feelings. All was quiet in the car, it was a long journey, Justin was driving. I had time to think about the day, to reflect on the day, to reflect on why we were there, and I relive all the sadness again …and my love pours out in tears for my boy yet again.





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