"The illusion of infinite time clouds our understanding of the preciousness of one another. That value grows in death as we realise all that was lost".
On Grief and Grieving by Elisabeth Kubler-Ross and David Kessler
"Giddy up horsey. Come on stop slacking. Do as you're told! You won't get anywhere in life if you don't learn to take orders."
Ah so she was listening to her Mother's wisdom after all.
Ten year old Chloe taking charge of her imaginary horses in the garden. Pink coat with a white fur trim. Blue/Green eyes fixed in steely concentration (she'd need all that steeliness later). The dimple - right cheek. Brown curls teased into two, oh so sweet, bunches. Long slender limbs. A colt like joy of life; joy in the moment. Felt like we were at the beginning of something.
Shafts of sunlight broke through the sturdy oak trees and fell on her perfect face. I never imagined in my wildest dreams that our precious time together would be limited.
I stole some memories as I watched half hidden by the curtain. I don't think she saw me. It was a beautiful day. I remember it well. I wish I'd stayed there all day/all week/all year. I wish that life had stopped forever that day.
"The illusion of infinite time clouds our understanding of the preciousness of one another....."
Fast forward four years. Already a young woman; and what a beauty. I was transfixed; others were too. The power to grab centre stage, just by appearing. So comfortable in her own skin; giddy with power. That holiday in Corsica was perfect. We were dumped early, of course (way too old and boring), as she took her place with the other teenagers. Got drunk, kissed a boy who was too old at 16 (confessed to that one later) and basked in the early summer of youth.
Another four years. My husband and I stood ashen faced in our hallway. With irritation I noticed how Ralph the dog had chewed the carpet on the bottom stair. The nonsense of every day life, eh. As if it mattered. The sweet, kind palliative care nurse looked away as she handed us a book. "I never know when the time is right," she looked unsure. I had the feeling she'd played this scene before. In contrast we were blissfully unaware of where the storyline was going next."
"Oh thank you. Fantastic. This will be really helpful"
What a ridiculous thing to say. I took it breezily as if it were the latest best seller, but I glanced down at my trembling hand. At least my hand registered what was going on. The title evades me; the subject is etched deep into my soul. How to help your child die - something like that.
I read the book. I read many others too. Cover to cover; night after night. Apparently it's "good" to prepare when a love one is close to death. I tried; I really did. I read all the literature; listened to all the advice "Be honest". "Never hide the truth". "Allow the person a chance to talk about their fears".
However, do people really know what's best for us families.
I tried. I really did. But every fibre of my body screamed that they were all wrong. So wrong. I would not give up on my daughter. Not now; not ever. How dare they tell me to. How dare they accept that she would die. The bastards!!!! Why weren't they fighting with me. Shoulder to shoulder. For God's sake she was 18. This was so not right.
Hindsight is a wonderful thing; or so they say. I've still no idea who was right. Maybe non of us were. Maybe there was no "good" way to help an 18 year old girl die. What I'm most glad of however is that I did it my way. My family did it our way. And ultimately I think that has to be the right way.
As time marches on and Chloe's life slips a little further into the past I feel the season on the brink of change and know that I too must move, flex and adapt just to survive. Again I read widely; I read avidly; I read books on grief .Cover to cover. Night after night. Once I was fixated on finding that message/those words of wisdom that will tell me in an nice orderly fashion how to live when your heart and soul have been pummelled to pieces.
Haven't found them yet.
So who am I do write this blog. To set out to try and show the world that one can live with the deepest and bitterest of pains and still come out triumphant. That (I'm embarrassed to admit) was my intention. I'm one of those annoying glass half full types.
I have no answers. And what I hate most of all is people telling me how to cope with all this.
They don't know any better than me or you - not the doctors; not the nurses; not the self-help authors. None of them.
So I was about to write today to urge everybody/the whole world to cherish what you have now. Hold your love ones so close/so tight and be greedy with those moments that can turn into memories. To remind that we all have limited time; and we may not like what's round the next corner .... and then I thought who the hell am I to preach to anybody else. My life/my heart's in pieces - and I certainly wouldn't listen to me...sometimes I can't even put one foot in front of the other.
And then I received another email from a bereaved parent and she thanked me for writing as it made her feel a tiny bit "less alone". And my heart lifted and suddenly I knew exactly what I have to keep doing to keep going and it's very very simple.
In truth I write my blog as it helps me. It's cathartic. I do hope very much that it helps you too. I have nothing of much importance to share. No earth shattering insights. For me the loss of my daughter feels like being run over by a ten tonne lorry and then lying there as the lorry reverses and runs over you again and again and again. There is little respite from the pain.
But maybe sharing the truth is enough. Maybe that helps us all feel a little less alone.