Shout, shout, let it all out…..

‘Get the cripple out of the house’, ‘you fucking idiot’, I didn’t think I’d hear my children say this. I didn’t think I would be whacked across the face with a pretty hard cushion. They didn’t think they would be asked by me to do things for me all day. ‘Get the sticks, tie the shoelaces bring daddy’s breakfast, take the tray…..’. I am rightly told off when a please is missing. They didn’t think they would push their own dad in his wheelchair at the Empire Cinema (fun at the time, but not wanted). They didn’t think their dad would be like I am.

‘You’re an inspiration’, ‘You show us not to worry about the small stuff.’ I see Jane operating at full speed from morning until night. Meals, getting me dressed/undressed, showering me, laundry, grocery shopping, disciplining the children yet showing understanding, washing up, emptying the dishwasher, cooking healthy food, driving everyone, changing the sheets, getting things for me, no free time. Immense frustration with fly-in, fly-out visitors and appreciation for those who take the kids when it’s pissing down. It’s practical help, not words we need. I sure as hell know that I am the furthest possible from an ‘inspiration’ to Jane, Valentina and Sebastian. 

‘Daddy, you said pray to God for someone to come and play golf with me all the time. Nobody has come so there is no God.’

The Facebook world. Perfect meals made by dear children, sunny days on exotic shores, here I am in Tokyo one week, LA the next. Perfect lives. I decided not to post a photo of Jane getting three kids, my wheelchair and me out of the Subaru in the rain in Hemel Hempstead. Of course, let’s do great things and go to beautiful places. Everyone’s life is full of bumps on the road. Anyway, we have a choice to sign up to and look at Facebook (plus it has many good uses).Maybe we could call it Thankbook as a place to show our gratitude.

My Christian friends tell me that God has a purpose for me in this illness. I believe that. How does it benefit those close to me? Their life is not better than it was a year ago. As I try to get comfortable in bed, get to and go to the toilet, understand everything in the family, walk, open an envelope, hold a bottle, I sometimes struggle to keep their words in mind. But then, I see true kindness.

We learn so much about people in our lives and we learn some much about ourselves. Jane and the children hold up the mirror to me all the time. How do I react? Am I being reasonable? We see the people who truly put themselves and their priorities second to help our family. We are blessed to know them. They come on the freezing day unannounced, they drive hours to take the kids a while, they see the positive and keep it real (my Physio), they give their time when they have little. How was I like when I was well? For now, the only people I have energy to give to are my immediate family. 

Selflessness. That’s what our world needs. 

Back to the start. I am delighted our children throw things at me with their full force, it’s great to hear them yell the F-word. I get it when Jane says she wants to walk out the house. Shout out what you feel about your dad not being able to do sport, take you places……let it all out!!!!! The stuffy world of repressed emotions serves nobody. 

Tears for Fears was a good name for a band. We have tears for everything at our place.

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.

One thought on “Shout, shout, let it all out…..”

  1. Happy New Year Andrew, Jane, Seb and Valentina from Bill and Julie in Sydney. Andrew, it was amazing reading about your trip to Miami and the love Phil and his mob showed you – he’s a helluva guy! I know these are hollow words but you are constantly on our minds and we’d love to have a magic wand long enough to make a difference. Take care old mate, stay strong and positive, you are a shining example to us all!

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