I've been thinking a lot about this journey we are on with Eilidh and SMA.
I do believe that we are all on a journey, the destination being unknown and, relatively unimportant, but we will be safe when we get there.
There may well be a moment when your life changes forever, when life as you know it will become incomprehensible and you will feel so very, very lost.
Maybe it has happened already, maybe this moment has already been.
Perhaps it is still to come and if it is still to be
Hopefully, and I do so hope for this for those who are lost, you will realise what has to be done and you will take a step - perhaps just a baby step, but your first step - towards taking control, knowing what you have to do, knowing that the choice is yours, knowing that you can move forward.
You will be scared and it will be daunting and feel so uncertain but you can and will do it. Of that I am certain because my life has been changed forever, I have been deep within the moment full of fear and confusion and pain. I have felt so lost that I wanted to bear the pain no longer. And after a while I decided to take a step - no, I needed to take the step because I was leaving the life that filled me with joy and love behind...
I found this poem when I first moved to Glasgow at a time when I felt awake and ready to explore, and I went looking for it again last week in a moment I needed to feel those feelings again. It's in a fantastic little book "ten poems to change your life" by Rodger Housden
"One day you finally knew
what you had to do, and begun,
though the voices around you
their bad advice -
though the whole house
began to tremble
and you felt the old tug
at your ankles.
"Mend my life!"
each voice cried.
But you didn't stop.
You knew what you had to do,
though the wind pried
with its stiff fingers
ar rhe very foundations,
though their melancholy
It was already late
enough, and a wild night,
and the road full of fallen
branches and stones.
But little by little,
as you left their voices behind,
the stars began to burn
through the sheets of clouds,
and there was a new voice
which you slowly
recognised as your own,
that kept you company
as you strode deeper and deeper
into the world,
determined to do
the only thing you could do -
determined to save
the only life that you could save."
There was a day, a day since Eilidh's diagnosis, when I realised that I was losing my life but I "finally knew what (I) had to do, and began".
I make it sound so easy, it wasn't but I took it slowly, knowing that I had to save my life for, primarily, my family.
It sounds melodramatic: if you have been there you will know exactly what I mean.
It was the only thing that I felt that I could do.
Move forward on this journey with Eilidh and SMA.
And do you know something?
You can do it, too.
I believe in You...
P.S. Phew...What a pep talk for a Wednesday Morning... I have given myself hope for today and a future for tomorrow...