Living with Multiple System Atrophy. A life limiting, neurological brain disease.

MSA…keeping promises

on December 14, 2012

sam and rhanna tinsel

Friendship… over the last few days we have been totally overwhelmed by the kindness of people, we have found great support through Facebook and the sites on there for people living with MSA.

Through one of these sites we have virtually “met” Carole and her husband Geoff. Carole is a remarkable lady, she very kindly sent me two books that she had read and honestly the first one I read was Rowing Without Oars, about a lady and her last year of life. I couldn’t put the book down, again that’s pretty amazing because long gone are the days when I was able to sit and read for any length of time, it is one of the things I miss the most and yet this book I honestly couldn’t put it down until it was finished.
Imagine a complete stranger coming into your life and making such a difference. How could Carole have known the difference she would make to my day, week, life…

Then today… my mail arrived and in the bundle was a beautiful Christmas card from Paul Bellars and his family, in it was a donation towards our fundraising campaign for £50.00! Again Paul is someone we have “met” through the support sites and both Andy and I were completely gobsmacked, Paul is fighting his own battle with MSA yet he still took the time to do that.
Paul and his family have impacted on my life in a way that is unexplainable…. I feel I have known them forever!

Then I look around and Anna my very best friend is there, a constant “right beside you friend” and Nicola who I never really knew other than the fact we both worked in the same place and would say hello in the passing, she has also became a close friend, there to lend a hand at the drop of a hat…so many people, so many friends… amazing neighbours, incredible family, Andy and my beautiful baby Rhanna, and always there the MSA Trust…

Can we beat MSA?…Of course we can! X

My mums favourite disney film is lilo & stitch, I remember when we went to see it, it was forever ago but I just remember her crying when stitch was getting taking back to space. She loves stitch, his quote when he says “this is my family, I found it, all on my own. Is little, and broken, but good. Yeah still good”  she’s says I’m her little stitch, the one who ties our family together.

I love my mum, everything about her, I love her quirky ways and the daft stuff she says, she makes us laugh every day, even when you don’t want to and in the last week or so I haven’t so much felt like laughing.
It’s been a mad week cause I’m in panto every night so I’m tired which makes me grumpy so I’m sorry to everyone if I’ve been a grump!

My mum never makes a promise she can’t keep, never ever and she is proper adamant about that, I wish more people were like that because I know my mum has been let down and she feels she hasn’t protected me, mum I just have to say you’re the one person who is constant and yes you are over protective (he he).

I promise to be like my mum and never make promises I can’t keep, how’s that’s for a sentence? She makes us giggle even when its not funny, she has a way of turning it around so you can’t help but giggle at her. This is for my mum from me, MY PROMISE to keep forever, “ohana” means “family.” “Family” means “no one gets left behind or forgotten.” But when you need to leave, you can. I’ll remember you, I remember everyone that leaves. I love you mum, all the way to the moon and back again xxxx xxxx xxxx xxxx

polar bear

5 responses to “MSA…keeping promises

  1. Beautiful as always, from a truly beautiful family xxx

  2. This is a beautiful quality..don”t make promises that can be broken!

  3. Dan says:

    Thanks for your blog! I appreciate what you are writing about, being a fellow patient, and I know it makes a difference for others to be able to read your posts. I am sorry that the MSA diagnosis is affecting you and your family. Your positive approach is very inspiring. I too blog and am glad to know you are doing the same. Take Care!

  4. This is a well writen Blog.I am sorry too about the dx of MSA. I am battling this horrible disease myself.I pray for all with this disease and that a cure will soon be found.
    God bless you and your family.

  5. Diane Vallieres says:

    Thank you Samantha and Rhanna for sharing!

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