Grief, the Life Raft….and this is what it feels like

I had a fab day on Sunday with the Life Raft. It wasn’t our usual get together. This one was a special one. We all went to Malmaison in Oxford, for lunch to celebrate Becca’s birthday. All arranged and paid for by her lovely husband…such a treat! life raft

We chatted about how we’d all met…all recalling different “when we first met” stories. The fact is we’ve done this for so long now how it all started doesn’t really matter…that it happened at all was sheer luck and good fortune. We laughed and talked about who would play us in our movie/TV series of the book…the book we’ve yet to write (but needs writing)…bit ahead of ourselves really but made for a funny conversation.

Reese Witherspoon, Meryl Streep, Holly Hunter and various other well know actors featured…It was suggested I’d be Joanna Lumley…which related more to her Patsy character than it did my looks (and coincidentally was a nickname I’d already acquired from my daughter T and a couple of friends a number of years ago…can’t think why?!?)

I’ve always loved it when we all get together…always fizz, food and fun! But, it’s been a tough old year (as tough as it gets…hopefully!) and as Clare put it … “We’re paddling like mad at the moment, sticking our fingers in the holes of the life raft, to stop us sinking”

It’s pretty bloody amazing we can still all laugh like we do!

Obviously, much of the conversation was around the #justiceforLB campaign, plans for a big party to fundraise and celebrate Connor’s life. The shit Sara has had to deal with is too much to bear and is all consuming for all of us…I think I can safely say here, it fills our waking hours. Well it certainly does mine.

In the past when we’ve hit the odd bit of choppy sea, the life raft has rallied and focussed on the occupant that needed the help at the time…that’ s how we roll. It’s been shared occasionally because of what’s happened and what’s been needed, but generally it’s been a bit spaced, bit of breather in between before the next pile of crap descends from a great height and the next big wave hits!

A tidal wave hit last year… a fucking enormous tidal wave!

None of us could have predicted what would happen in the space of just 6 weeks.

On 21st of May, my husband Bob died, suddenly and unexpectedly in his sleep. No warning signs, no obvious illness (clearly he was ill, you don’t just die in your sleep if everything is okay, we just didn’t know it and neither did he)...leaving me completely devastated! You hear the word “devastated” a lot and it’s used flippantly far too often that it loses some of the real meaning…it wasn’t until Bob died I understood what being devastated really meant!

The Life Raft kicked in. Daily phone calls from Clare (designated key worker) “just checking in” …Fran popping round and then the shared phone calls etc.

Sara popped round….gorgeous “rescue box”…wine, chocs, lavender candles etc…(beautiful)…she wouldn’t come in, because the house was full….(it was full a lot then) I asked how Connor was (knowing he was still in the unit)… “don’t even think about it” she said.

Just over a month later, on the 4th of July Clare rang to tell me the news about Connor. Still reeling from what happened to Bob, I struggled to take this in…what?….what the fuck?…how the hell?

Connors funeral was the day of Ollie’s 21st birthday and two days after my 50th. It’d been tough celebrating these significant birthdays without Bob. I was an emotional wreck. Again the life raft did what they do best. I didn’t want to miss the funeral but couldn’t face going to the actual burial…still a bit too raw. So Becca came and collected me so I could have a drink and help make sandwiches for the “do” afterwards. I was sick twice before I went and felt sick throughout the day thinking about Sara and what had happened and still desperately grieving for Bob and my own loss. And it was my baby girls 21stthis should have been a happy day. The life raft supported me to feel as though I was supporting Sara. I’m glad they did. I’m glad I went….I nearly didn’t

9 months later… I’m now on the countdown to the one year anniversary since Bob’s death. It’s occupying my thoughts a lot at the moment. One minute I can’t believe it’s almost been a year already and in the next breath it feels like yesterday. The spring weather set me off again. The daffodils appearing in the garden, the evenings getting lighter…this time last year he was here.

Everyone tells me that time is a great healer but I feel like I’m going backwards at the moment… maybe that’s an anniversary looming. Maybe it’s just the thought of the anniversary and when it gets here it won’t be as bad as I’m anticipating (bit like Christmas)

I’m trying to keep busy and during the day its fine because work is pretty full on at the moment (and I think I’m holding it together for work). But, the evenings are tough and weekends even tougher (whether G is here or not) I go out quite a bit and get lots of invites because I have amazing, supportive friends but, it’s struck me recently just how lonely you can feel in a room full of people….and then I come home to an empty house, with no one to talk to and dissect the evening with, like we always did.

Feeling a bit sorry for myself at the weekend, I got into a conversation on twitter with @GeorgeJulian (justice for LB’s campaigner extraordinaire!) George has written about grief and the death of her Dad (another Bobby)

photo twitter “it aint linear this grief thing….just takes time…and let’s not forget it is shit, can’t fix it”....yep! just about says it all really




I’m acutely aware that what happened to Bob doesn’t compare to what happened to Connor…Bob had almost 64 years of life…an amazing full and varied life. He died in his sleep and felt nothing…I try to take comfort from that, but the truth is I miss him more as each day passes. I’m lost without him.

The Life Raft of course totally get this… and as we left the restaurant on Sunday Becca and Clare put their arms around me and told me they hadn’t forgotten me too. Of course I knew this anyway but it was lovely to hear…and made me cry (again!)….fingers in the holes, stopping the water flooding in…what a bloody amazing bunch of mates I have.

Feeling inspired, I’ve decided I’m going to start writing the book – title decided “THE LIFE RAFT” (don’t hold your breath it’ll take years) A true story…every bit of it true with no embellishments needed…only the names will be changed to protect the innocent…or should that be guilty!

In the meantime I’m allowing myself to grieve….wallow in the shit that is grief and the heart ache and  pain of missing someone. I want to get some of this stuff out of the way before the anniversary because If I’m feeling like this now I can’t bear to think how I’ll be feeling on the 21st of May…so here’s a little video, and even if you don’t like the song, the words say it all…. This is what it feels like

About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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