Sunday, 6 January 2013

The thing is...

So here's the thing.

Something odd has happened in an internetty group, and posts from several years ago have apparently become current again. Which means that members of this group believe my daughter has just died. And have been sending messages of sympathy all over again.

Not a problem really; I don't believe prayer is ever wasted, and whilst I feel bad that people were feeling bad on my behalf without need, I wasn't unduly upset about it.

And then I read back what I'd written at the time, and I had a hunt around for a decent news link so I could post it for anyone not sure what had happened. And there is too much news, too much analysis, too little Goldie.

This is the start of the sixth year without her. Only another year to go and she will have been gone for longer than I had known her. And I am losing her. I have a big collage I made, full of photos of her and her part in our lives. And I filled in the gaps with her scribble-talk; words and phrases she loved. And some things I haven't forgotten - sneaking up behind her and whispering "Bum!" in her ear and watching her dissolve into giggles is a sweet and precious memory. But other things are fading.

I can hear a voice saying "The fing is...."and I don't know. Is it Goldie, is it a child I used to know before I started fostering? I read back the phrases I wrote down, and I remember her saying them, but I had forgotten I had written them. I hear squeaks and see toes dancing, and I'm not sure if it's Goldie I remember or one of the many children in the school where I used to work. And even as I type this, I realise that tLP has been imitating Goldie, and not a child she never knew, when she lies in bed and flaps her arms wildly to make the bed creak. She knew Goldie for just a few months as a toddler; how can she remember things I've forgotten? Or not forgotten, but misplaced in my own mind, waiting for her to remind me?


Before I started fostering, I worked in a boarding school for children with profound and multiple learning disabilities. In my interview, I asked what proportion of the children there died; "None" was the reply. My first key pupil had a fatal heart attack on the floor of the school hall the very first week I was there. I see her twisted smile, remember her grin as we were introduced, and her long graceful fingers pointing in an entirely different direction from her chin, which was in a different place again to her feet, impossibly wrapped around each other as they were. Or were they? Am I seeing another child in a similar chair and conflating the two?

I remember three precious children, all with the same condition, one much frailer than the others. As two wandered around, needing a bit of support and balance, this third sat back, exhausted, in an armchair carefully padded to prevent sores. The others shouted and gesticulated, whilst he just gazed on with eyes which spoke volumes. And yet he lived six years longer than the healthiest of the three. More recently, another child with the same genetic quirk also died; the genetic twists which shortened life creating a child with such similar features that it was as if those three lived again. I remember sharp-toothed hugs, but from which child?

Two girls with the same name, both so similar to Miss Mog, both very different from each other. But when Mog was a baby, I could see her future self in either of them. And she does have aspects of both of them. I see echoes of one of them in Mog's smile, and echoes of the other in her grimaces. Both now dead.

One beautiful little girl with Leigh's who I met as a child, and who helped me to see where my future would lie. A precious precious child, much loved by all those who cared for her. And again, dead too soon. I have no problems remembering her smile or the way her body snuggled in for cuddles. And I can still smell the Worcester sauce and pasta sensory bath we gave her and another equally precious little boy. I don't remember his name though.

One child we only ever met at hospital or hospice, but who we met all too often in both settings. And who is now drumming in heaven instead of marching the hospital corridors. Mog's friends, my friends, my friends' children. Children from school, children from home, child on child on child. Children I only ever knew through their parents, and children whose hair was too irresistibly curly not to run my fingers through it at every available opportunity. Children I've holidayed with and children I've lived with, and how can I have lost count of them all?

And the thing is, it doesn't end. Children get frailer, get more complex, and this is happening again. And children die without any kind of a warning, and that will happen again too. And now I have tLP asking me "When I die, will I still be able to go to school?", and a tLP who has been present at too many of the informed consent discussions with Drs who forget that she may not actually need to be present when all the risks are spelt out, and who now asks if she's going to die every time she has an anaesthetic. And she knows too many children who have died, and she knows it's a possibility, and so she fights me and the anaesthetists all the way under. And I'm not convinced I want "I hate you Mummy don't make me no no no NO!" to be her last words if it does turn out that this next bit of surgery is in fact too much for her.

But they are still here. Both my precious girls. Two out of three though really, and I'm sure the hole gets bigger as memories I thought were safe fall into it. And I am so scared that the other two will fall into the hole with Goldie, and I will lose not only them but also memories of them; the way Mog's curves fit my body, or how tLP tells me I am the best mummy in the whole wide world and  can she have a lollipop, or the smaller things currently too unimportant to even think about trying to preserve as memories. And I want to look at them and enjoy them, but I keep seeing the gap they will leave. And no, neither of them is (as far as I can tell) likely to be leaving us very soon.

Too many memories, too, of last days I think I'd prefer to forget. A child being bagged over their ventilator, deep suction on a child who had never needed any kind of suction before. Stupid disposable aprons and gloves getting in the way of comfort and touch; harsh plastic chairs and unforgiving hospital lights and pain. And why can I remember this (even when I'm thinking of something else entirely) and yet forget "achAAAAAAOOOOWWWWW!!!!!!" until I hear its echo after pummeling my mind for something more pleasant?

And how can it possibly be right that I now know more children who have died than adults, despite having a wide extended family and despite having worked in nursing homes? 

I wouldn't change this. Well, yes I would, I'd rather have my girl back I think, and if I can't, then I'd rather have some nice peaceful memories about her last days. But I wouldn't change who she was or who I am, I wouldn't rather not have known her and this army of others, however much it hurts. I'll take this hurt since it comes with such love, I'll take this life above any of the others I might have had. But just now, just this evening - and unexpectedly so; this wasn't the post I set out to write - I'm drowning.



Anonymous said...

Thinking of you (long time lurker here). What a brave, beautifully written post; a real testament to your girl.

I am sorry you have seen so many children die. I'm sure they all knew they were so loved. Goldie in particular.

Tina said...

Not sure why but your post was comforting possibly because it confirms I am not crazy. I share do many of your thoughts obviously with my own slant.
Sending you a big hug xxx

Alesha said...

Ditto Tina's comment...and I hear my own thoughts echoing the ones you shared here. So good to know I am not alone. <3


Caz said...

Thank you for writing this. I hope that today the earth feels more solid.

Anonymous said...

Thank you Tia for once again managing to articulate what had previously been feelings.



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