One evening’s words


I loved being an active dad
I wanted to give you much more
What am I to you?
What do you see?
How does it feel?
Right team
No choking
Voice quiet
Normal conversation gone
I can Listen Without Prejudice
My life over?
In some ways yes
Walking running jumping swimming throwing catching hitting riding cooking holding a book ironing washing driving clarinet mowing it could fill pages
Sitting paralysed why me?
Hang on can’t be me
Normal lives
You can still give so much
I know
I wanted to be there
To walk to help them
Hug sitting on the bed running on the beach walk around a golf course
Gone and so vital
How long?
Don’t know
Choking scares them
My daddy
I should support
Now I need it
People, fill the gaps
Take it further
Give the children what I can’t
In a care home
Grateful nice people good care
The Turkish – Likya – we met twenty years ago
Legs feet arms hands voice
We need them
Father I trust you
You are pushing the limits
Cambridge eye gaze people
Die Kleine Backstube
Our week in week out supporters
Sarah, a special thank you
You have seen my changes
Caron and the Welsh guy
York people
Visitors from near and far
How is your dad Seb?
He looked away, wordless
A 14 year old girl
I’m the dad so terribly sorry
Jane thank you
Bucket list
Yep it’s family
Bucket word
Vision of a daily life
Not bad now
We’ll get there
Family community fulfilment
Knowing my needs
Before I do
Triggers bring the emotions on
Writing in the evening
I feel normal
Get in the flow
I hope I’ll be an Outlier
Averages need them
Colder now
Breathing sleep upright
Air feels stuffy
Talking about myself
Not what parents do
I look at them
In their eyes
I watch them move
Try and parent
Tired now
Four hours eye gaze
Story edited
This written
Much to do
Much to learn
It’s for a reason
But, make no mistake, it’s sad
Thank you for helping my family and I.

Andrew Knowlman
Forest Care Village
October 6th, 2016

Author: Andrew Knowlman

I am a 50-year old father of two children, married to Jane. I live in Hertfordshire, UK. I was diagnosed with Amyotrophic Lateral Sclerosis in April 2015.

5 thoughts on “One evening’s words”

  1.  Dear Andrew I just want you to know that I found this post absolutely beautifulSending you lots of love HelenXXXX

    De : stopforamomentpeople À : Envoyé le : Vendredi 7 octobre 2016 17h32 Objet : [New post] One evening’s words #yiv3997639449 a:hover {color:red;}#yiv3997639449 a {text-decoration:none;color:#0088cc;}#yiv3997639449 a.yiv3997639449primaryactionlink:link, #yiv3997639449 a.yiv3997639449primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv3997639449 a.yiv3997639449primaryactionlink:hover, #yiv3997639449 a.yiv3997639449primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv3997639449 | Andrew Knowlman posted: “4I loved being an active dadI wanted to give you much moreWhat am I to you?What do you see?How does it feel?Right teamNo chokingVoice quietDistressingNormal conversation goneI can Listen Without PrejudiceMy life over?In some ways yesWalking” | |

  2. Andrew, your words and your way of thinking and sharing is life changing for many of us and our children and our families – I am humbled to be able to read this. Your life is reaching into so many places.

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