My still point

At the still point of the turning world. Neither flesh nor fleshless;
Neither from nor towards; at the still point, there the dance is,
But neither arrest nor movement. And do not call it fixity,
Where past and future are gathered. Neither movement from nor towards,
Neither ascent nor decline. Except for the point, the still point,
There would be no dance, and there is only the dance.

    -T.S. Eliot

I recently finished reading “Still Point in a Turning World” by Emily Rapp. If you are looking for something to read that will make you think, I recommend it. The author wrote the book after learning that her son had Tay Sachs disease – a rare, degenerative genetic disorder that is always terminal.

But don’t read it if you want a voyeuristic look into her son’s short life – that isn’t what the book is about at all. Instead, Rapp explores her grief at her son’s diagnosis and also the significance of his life – devoid of ambition or achievement – and her role as his mother. She uses literary, spiritual and religious references to delve into the meaning of life and grief. The book is raw and beautiful and thought-provoking.

But it isn’t a book I can really explain. I tried discussing it with QB and fell well short of any real meaning. It is probably the first book I’ve read since becoming a Kindle convert where I thought that I really needed to have the book in hard copy, so that I could go back and re-read sections and highlight passages.

Although I finished reading the book a few weeks ago, it is on my mind today. Perhaps because after nearly six months of battling Miss Z’s chest infections and two very sobering appointments with Z’s Respiratory Consultant and Paediatrician, I am beginning to better understand how the author felt when she wrote the book.

Miss Z doesn’t have a terminal disease. But she is increasingly likely to be chronically ill for the rest of her life. Her doctors believe that her chest infections might be controlled, but are unlikely to ever go away. And, at some point, she will become seriously ill from them.

I’ve come to terms with her special needs. QB and I accept that she is unlikely to ever walk, or talk, or live independently. Vegemite and I have discussed how it is unlikely that Miss Z will ever get married or have children. All of this we have accepted.

But now I feel like I must come to terms with something new – something worse.

I’ve always told myself that Miss Z’s health will improve with age. It seems the way with a lot of children with Rett Syndrome and CDKL5 – the younger years are the hardest. But now I need to accept that might not be the case. And that the biggest determinant as to how much time Miss Z spends in the hospital in the coming years will be our ability to cope with her medical condition at home.

I haven’t finished processing the information I’ve been given at Miss Z’s latest appointment, so I’m not quite sure what to do with it all yet. And of course no one knows the future, so Miss Z could also kick this latest infection and go on to be chest infection-free for many years to come. So, there is no grand conclusion to this post, it is simply to get it all out of my head so I can continue to function, go make dinner, focus on the “Communication Revolution” and maybe even manage to get a bit of work done.

And in the meantime, I’m off to buy that book…


Cuddles and cartoons



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