Posted by: mads04 | December 29, 2015

Forever young. Part 2

In the course of our lives we will  go through a lot of journey’s and we learn things everyday. I want to watch my kids go through some of those journey’s, some will be good some will be bad. That’s life! 

If you’ve ever learnt to play a musical instrument you’ll know that it can be an extremely frustrating journey but also a rewarding one. My youngest kids are learning the guitar and piano and I want to be with them and watch their frustrations and achievements whilst learning. When I first got a guitar at 16 It took me 6 months to learn Led Zeppelin’s “Stairway to Heaven” and by the time I’d learnt it I was sick of listening to it. We got our Vinny an electric guitar and an amp for Christmas and he already thinks he’s Eric Clapton. Now I love Clapton but there’s only so many times we can listen to “Sunshine of your love” blasting out on full overdrive settings!! 

I know I’m a lucky man to have watched my kids open their Christmas presents this year. I’m also extremely skint now! Parent problems not MND problems. I’ve always been better at giving presents than receiving them so watching the kids open their prezzies always brings a huge smile to my face. For most people now the presents are all over, well not in my house it’s not. My little girl Bo is 7 going on 28 on New Year’s Eve and my little boy Vinny  is 10 two days later. They don’t know the full extent of MND they’re to young to know. They just think dads not well, or as our Bo puts it “me dads hands don’t work properly” They help all they can and when I pump water into my peg-tube to keep me hydrated it’s meant to be pumped in slowly by syringe to stop me from feeling bloated. Nurse Bo is too impatient for that so she just goes for it a 100 miles an hour and says “All done now dad.” Whilst I’m sat there smiling, feeling like a water balloon.! They’re good kids and don’t  deserve to know what MND is. I’ve said before I can take whatever MND throws at me but it’s tough watching my family having to live through every setback, every fall and every choking episode with me. 

The day my little girl was born in 2008 I worked out the maths and realised that two of my three kids would be 18 and 21 within a couple of days of each other, a week after chrimbo! Holy shit!!! We timed that well. Now I know the odds of me surviving until then are about as thin as my arms but I’ll try my best to get there. I’m already saving for their joint party, I’m also scoping several banks out! Imagine me trying to rob a bank.! It would be the slowest getaway ever! 

Happy birthday Vinny and Bo. You’re strength keeps me strong, you’re laughter keeps me smiling and you’re love keeps me alive.

May you stay Forever Young XX 

Happy new year everyone and thanks for your continued support. Please keep supporting the MND community and raising MND awareness. 

Keep smiling, stay positive and most of all Enjoy life.

To be continued…



  1. Awe loving Vinny’s tartan trews Mark. Your blog is boss as always . Cameron got an electronic drum kit so if kids want a jamming session they r very welcome. Can’t believe Ihhaven’t seen any of you in 2015. I feel ashamed of myself but sounds like Bo is my little nurse apprentice. I taught her well as a toddler. Say hello to Jane too. And of course not forgetting Sonny. X

  2. Another good read and… an honest view of Life. Thanks for sharing Vinny’s tune – – be sure he’s exposed to all the classics tho’ – – Muddy Waters, B.B. and the like! Wishes of happy New Year to you and your family!

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