A lovely pair of legs

This week the hospital where Goldy died returned her personal items. Some of them I'd already taken home, but amongst the things which got left behind were her long leg splints and her body brace. Put them together and you've got a Goldy-shaped three dimensional hollow, but with no Goldy inside it. Sort of describes my heart at the moment. The question is, what do I do with these things? Stashed in a cupboard I now have three old body braces, each individually moulded to Goldy's body shape, each discarded as she grew and changed. I have two sets of long leg splints, splints which start at her toes and end mid-thigh, capturing the contours of her legs and having done sterling work in slowing down the slow deterioration caused by her spasticity. The leg gaiters and arm gaiters, the sleep system and the wheelchairs, these things can be recycled and used by other children, eventually used by Mog and Little Fish as and when they get bigger. Much like second hand clothes, but without the going out of style (disability living aids have a timeless unfashion all their own). But the ones which are custom fitted, what do I do with them? They won't fit anyone else, the orthotics clinic won't take them back, although I believe they could be heat treated and remoulded to an extent. I can't just throw them away, so there they sit, a hollow empty Goldy-shaped hole.

I can't believe it is now over two months since she died. I still have her headphones and walkman, favourite toy and collection of stories sitting in the passenger seat of our van. I haven't had a passenger in the van since I returned from hospital, I've had no need to move them. Some of these things will be buried with her at the request of her relatives, but what about the other things? The pile of batteries, they'll go into other toys, but what do I do with chewed old story books with pages missing and defaced? Just throwing them out feels so wrong, impossible. But to keep them feels wrong too. So in the meantime they sit in the van getting ever more battered and causing my heart to drop every time I catch sight of them. Her handbag, her purse with her dinner money in it, the music box she listened to her entire life, what do I do with them? How do you dispose of a life? How do you not?

I dream eulogies. But when I wake up I can't remember them. How do you sum up a life? We find ourselves saying "Goldy would have wanted this to happen, would not have wanted that to happen". But the truth is, Goldy wouldn't have cared about any of this at all, provided her songs and stories and cuddles kept on coming and no one shouted. Trying to plan a funeral in the knowledge that Goldy only managed to sit through church services if she had a constant supply of fruit and crisps, and a story whispered in her ear. I'd like to hand out raisins and read her favourite story but that would upset other people who knew a different Goldy.

Goldy was just Goldy. She believed the rest of the world existed to serve or entertain her, and ignored anyone who failed to provide either service or entertainment. She wasn't smart, she had no couth at all. She wasn't kind, she didn't care for other people's feelings except how they impacted on her. She was just herself. There was no pretence to her, she didn't hide things, she didn't know how to be two-faced. She didn't hold grudges, she didn't stay angry about things, she was rarely so upset that whispering rude words in her ear didn't cheer her up.

But this isn't the child her other family knew. So now Goldy is being reinvented, her past history is being reinvented, and I am being reinvented to fit other people's requirements. Or perhaps they're right, I'm wrong, and I didn't really know her at all. It's possible.

I think it's entirely possible that we all knew different aspects of Goldy, just as we all have our own opinions about what happened to her, how and why it happened, and what should happen next. I know that although I still don't understand how this happened, I still bear no ill-will towards the carers involved. Perhaps I should. I am being told I should hate them, that they
should be killed and die painfully, that they need to be imprisoned and should somehow pay for what they did? Do the people who tell me this really think they aren't paying already? How do you live with the knowledge that your actions led to the death of another human being? I don't think anything anyone can do could possible add to that. And in any case, there but for the grace of God go I. This could have happened on my watch - I hope it never would have, but it's not beyond the realms of possibility. How can I hate someone for making a mistake?

In the eyes of some people this means I love Goldy less. I also love her less because I can get out of bed every morning and get on with the day, I can laugh and sing with Mog and Little Fish, make chocolate brownies and knit blankets and I have (for now) rejected the offer of bereavement counselling, and I can (most of the time) talk with the funeral director without breaking down completely. Trust me, I mourn. I loved her when she was alive, I love her still now that she is gone; I keep trudging along with our day and then little things catch me out; her handbag still in my van is one. I'll sneeze and still expect her to be laughing. The number for her care home is still on my speed dial. I have started Christmas shopping and it's automatic to be keeping an eye out for things she might actually enjoy, automatic still to start hunting out that perfect photo for her to send to her other family. There are pizzas in my freezer bought for when she comes to visit and how can I eat them now?

I love my oldest daughter dearly and I miss her every day. Her absence wakes me in the night on the rare occasions when Mog and Little Fish fail to do so. But my love is not measured by my outward appearances; nor is my grief.

Tia