Sharing my story - that's the common theme in everything I've been doing recently, not just to simply share my own story but in doing so hopefully encourage others to share theirs or even be a voice for those who cannot share theirs. I want to share our story because talking about Daisy and Andy keeps them alive, it helps people to know them as people, not the pieces of an awful tragedy.
I find it therapeutic but it is also emotionally draining, I watch the faces of the people in the audience and I see their reactions as I speak. Some people inevitably cry. But the more I share the more people open up with their stories and that must be a good thing.
I've been involved in a couple of "Was this in the plan?" versions of Death Cafes over the past few weeks. Amending the traditional "Death Cafe" format to include conversation starters and an opportunity to share my story to demonstrate to the attendees that it's OK to talk about death, it's actually quite liberating. There was a lot of laughter at both events and there will be more, I promise.
I gave a keynote speech at the Carer's UK annual member's conference. It was great to be able to speak to to other carers and encourage them to find their voice, to help break some of the stereotypes that exist about carers and who we are.
I was also invited to give a parent's perspective to palliative care nurses attending an education day at Great Ormond Street. How nice to be able to comfortably slip back into medical speak without having to explain the complex terms, I was honoured to have been asked. I'm really looking forward to being involved in more sessions like this with medical staff, it's good to share what the experience of caring for a child as complex as Daisy was like. The realities of life in the goldfish bowl.
|When Chris Patton is your warm up!|
I love sharing our story. I love talking about the lessons it has taught me. The resilience I have gained as I came through each unimaginable event.
I hate coming home to the empty house afterwards.
It's the quietness of our home which is the stark reminder that Andy and Daisy are dead.
My other children are at that age where the moments where they want to be in the same room as me are less and less. Evenings can be long. I try to fill them but nothing really fills that void late at night.
These were the times when Andy and I would be chatting or he would be checking in by phone from his hotel on a business trip. I would doing a hand over with a night nurse or preparing a tray of IVs for the overnight shift.
I would be getting uniform ready for the children's school week and sorting out the inevitable last minute project or form that was handed to me on the night before school.
Now I fill the time by keeping busy, afraid that if I sit still for too long the quiet will be overwhelming.
I can tell that the children are a bit disconcerted by all the time I now have available for them.
Thank goodness for social media. At least I can see into the outside world. But sometimes that glimpse is too raw. Those reminders of the world I lost. No more planning wheelchair friendly trips. No time spent away as a couple now our children are growing older.
I have always focused on what I have , not what I don't have. When Daisy was born I don't think I ever once dwelt on what she would have been doing had she not had a rare genetic disease. I just did not allow myself to think about that, we could not change the situation and Daisy was Daisy and that was it. But now the loss is so huge and the hole they both left behind so large it's hard not to find my mind wandering to what my life would have been like.
For twelve years our lives revolved around hospitals. The main people in our lives were involved with supporting Daisy or from the children's schools or then later on Andy. I struck me very poignantly the other day that so many of my friends have established social lives, they are in book groups or arrange day trips or weekends away - I had to turn down invitations or cancel at the last minute so many times that I just fell off the radar. Now I'm having to learn how to be sociable again after a long absence, at a time when I don't want to do it on my own. I want my old familiar back but instead I'm having to find a new familiar.
Snakes and Ladders. That's what my bereavement counsellor says it's like. Grief. None of this five stages of grief that I could never quite believe anyway. My life is like an ongoing game of snakes and ladders. Slowly, slowly inching forward. Sometimes I hit a ladder and I'm buzzing, then along comes the snake. The relentless march is forward though. One foot in front of the other.
We are four now but we will always be six.
"I don't know how you do it" people say.
"I have no choice" I always reply.
I just keep trying to land on those ladders.