Friday, 19 December 2008

All the world's a (radio) stage.

And all the men and women merely players.

And tonight I had the somewhat surreal opportunity to listen to someone else playing me. Or rather, playing someone else's interpretation of me. It was an odd experience, hearing echoes of things I have said, seeing memories from someone else's point of view. And then having them all played by someone who only knows me from the lines written on the script in front of them.

As I listened memories washed over me. Memories of that little girl lost, the reality of events as they unfolded (the play being fictionalised), working out what I remembered, and what had been created, abridged, altered to fit.

And I remember holding that precious bundle and walking away from hospital with her, breathless with the trust placed in me, with the responsibility of this little tiny baby. And I remember that first night, with her lying in the carry cot beside me (our Moses basket being in serious need of a clean), listening once she had finally fallen asleep, just listening to the softness of her breath.

I remember waving her off on her contact visits and listening to the peace in the house, no longer echoing to her cries. And I remember watching the clock when the time came for her to return, wondering if this visit would be the one where her parents realised how wonderful she was and chose to take her home.

And as I listened, that larger girl less lost now woke up and started crying again, and I held her and I rocked her, a big long stiff pretzel of a child rather than that raging ball of fury. And I realised how far we've come, and also how little progress we have made. True, she doesn't cry all the time any more, I don't have to carry her around all the time any more, she knows how to smile, and she can make choices. But for the last few weeks, we seem to have lost that. Her personality has disappeared, retreated into herself, and we are left with a larger version of that little baby. She is stiff, sore, spasmy, crying, screaming, sobbing, raging, struggling for breath. She doesn't vomit any more - she can't, thanks to the world's tightest fundoplication - but we've swapped that for suction and an inability to swallow. When she is like this I wonder at her predicted life expectancy, and hold her even closer - every snort and gasp she makes in her sleep I wait for the next intake of breath, and as it did when she was a baby, it sometimes takes too long.

But as I listened, so did she. And she heard the music playing. Angry voices make her upset, but the music had her calming down. Soft chords on the piano, a repeated nursery rhyme, children's voices singing - and she was cooing too. And I realised she's still in there. It's buried deep; she's concentrating on overcoming whatever it is which has wiped her out so much. But she's still there, and I hope she'll be back with us properly soon.

After a long and frustrating day chasing different medical people and getting nowhere fast, we do finally have a treatment plan. We are working on the theory that her newest anticonvulsant is causing her current problems. And so, fitting in neatly with the circularity of comparing her now and then, we are going to go back to her very first anticonvulsant, and hope that it works for her now as it did then.

I hope so. I miss my happy kicker, my laughing at every cough-er, my stick my arms out as we go through the door just to collect bruises and be awkward child, I miss her laugh, and her song. And I miss my sleep.

So if the great Script Writer and Author of my life could just tweak the next chapter in our favour, I would be very grateful.

From this

to this
again please.

ps- I mentioned it a few days ago, but if you'd like to hear the play you will find it here for one week.


Almost American said...

Thank you Tia for posting the link to the play. I've managed to get about halfway through it and am sitting here bawling as I listen to it. I think I will have to stop and listen to the rest of it tomorrow.

Robyn said...

{{}} tia..i hope shes back to her smiley self soon too...

Anonymous said...

Oh Tia,
I can imagine that that was quite an experience -to hear your story through someone else's eyes and interpretations etc.
Sorry to hear that she is still experiencing so much misery --I know it has felt like this has gone on forever. Hope and pray that she will be feeling better soon.

Anonymous said...

shes still in there .. and I am certain she is all too aware that you are on the outside .. waiting patiently and loving her all the while . .. I hope she will be able to show you again very soon .

X Sandy

Elinor said...

Get better soon, Mog.


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