This initially is only Kathryn’s mother’s story.
We may one day hear of her brothers’ and their stories within it.
This has been asked for, and as they grow, they may share – and it may not happen until they are fathers themselves.

I have no way of knowing what this all meant her.
She is my greatest love.
We are separated by life and an ocean.
Her soul, as all of us, is not defined by the externals or the story we see, is not contained by the body and is free . . and it no doubt soars.
I feel the connection.

As her mother, what I did was everything.
As soon as I found out about whatever it was.
On every level, at once.

I ‘got’ that this was her only chance and it was anecdotal.
I ‘got’ that if something came to me (27 years ago no internet) it was the right time – and although I could have wished for it sooner – thankfully I now had more in my tool box and ‘lets’ do it’ .. .)

She had to be here with us – as if she died – that was easy – but what if she didn’t?
(How do you go to the supermarket with a fat slug that can’t even hold its own head up?)
She was only going to get bigger – where was my life? Her life? Her brother’s lives? My career as everyone else’s problem solver?

She had to be able to be in her body.
To stop trying to die on us – obscure and threatening diseases at every turn.
She had to be able to see
To walk
To talk
To be in our world.

We managed together two out of three.
She does talk in her own way . .

By now you may wonder – “why is Heather saying ‘I’ a lot”.
It was me driving all of this.
Her dad wondered if perhaps she was meant to be left this way.
My answer was – if so she would have been born to another family . .

Yes, it is too hard. . . .

I was not (and am still not) interested in ‘experts’ or in ‘research’ or in cost – I just wanted her as fast as possible as whole as possible and out of the trauma she found herself in, as gracefully as I could make it.

If I come upon another in this state – it is not my story or journey – and I will help any as a light a little further along the path as needs be. ..

We are all here for a reason . .
Maybe you are reading this to remember for another – just as so many retained something that they had heard often years before and now used it as a snippet to help me to still keep going – as this road does get grim, bleak and downright exhausting . and there is always the whole spirit of the one called a baby or a child and the mother’s heart to still keep beating.