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

A little bit of hope…

on November 30, 2012

Sam and Rhanna

Living with a terminal illness takes you to the edge of the cliff, do you dare to look over or do you take a step backwards. Taking a step backwards means you want to fight, to win the impossible, looking over the edge means take a leap, what’s the worst that can happen?

Neither decision is an easy one but when I look around at what I have, I realise I can’t look over because the thought of losing what I have breaks my heart.
Just now it’s 3am, I’m exhausted, Andy is asleep and Rhanna is cuddled up sound asleep with Tumbles. Even Molly is snoring in the hall! I don’t want to close my eyes, what if they don’t open again? Pretty stupid thought! But it’s thoughts like that, that leave me writing things like this.

How can I leave behind everything I cherish, I haven’t been a perfect person, perhaps this is punishment? You know what HOPE means to me…
Rhanna brought me cupcakes home, we can share them, I have the icing, that’s a little bit of my hope.
Andy, Rhanna, my mum, dad, little sister and adopted aunt Isobel all came today, they all gave me a hug when they left, another little bit of my hope.
Andy makes me laugh, another bit of hope. My friends text, there’s another piece of hope.
Fundraising, another piece of hope.

These are my hopes, because I can’t imagine not hugging back or giggling at Andy, sharing a glass of wine with Andy’s mum and making sure I get to the truffle before his dad!

I’m scared to hope I’ll be here to see Rhanna grow up, get married and be the huge success I know she will be, I’m scared to think of Andy living his life without me, scared of hurting my mum and dad, my sisters and my dog Molly. Scared…that’s what I am tonight.

Tomorrow will bring fresh hope and I will squeeze Rhanna and Andy and we will all laugh out loud. Please let it be.

It’s been a horrible week, I think the worst yet because there was a real chance I wouldn’t see my mum again, can you imagine that?
I can tell my mum anything at all, well apart from if there has been problems at school or anything because I think she would actually go down to the school and go mental! She’s very over protective and I don’t think that will change.

Her speech is getting worse and she’s much more sleepy than usual, she said its just because of the op and she be fine in a few days. Every night when I go to bed I cry, fear makes me scared that she won’t be there in the morning, I wish I could make her promise she be there to see me off to school. At school in the classroom, every time the telephone rings I hold my breath in case it’s something to do with my mum.

I know she doesn’t sleep well at night and sometimes I would love to just crawl in beside her and cuddle up, sometimes we do that at the weekends, in the morning and watch telly, not really speaking, just sitting cuddled up.

I’m starting to forget what our lives were like before mum got unwell, her voice is still on our answer machine, she sounds so different now, it’s really really weird.

I wish I could organise something really special for her, like a really fancy restaurant where the chef would make something she could eat and totally love, how awesome would that be?

You know that poem “now I lay me down to sleep” I say that at night but I don’t say it for my soul, I say it for my mum so she can tell me to have good day at school and work hard.

We all been affected this week, but we will still be smiling and ready for the next challenge because mum wouldn’t expect anything less.
Love you mum, all the way to the moon and back again.

5 responses to “A little bit of hope…

  1. Dear Sam & Rhanna
    I cannot begin to imagine what you are going through, well I can a little bit you see because my Geoff has MSA although not as far advanced yet. But it is coming. Every night I pray for a miracle and ask God to “just let it be PD and not MSA” but in my heart I know for sure it is MSA so then I also pray for the strength and courage to see it through. My darling Geoff has been a wonderful husband to me and our two sons and all I ask is that God gives me the time to look after him for a long while just like he has done for me all our married life. We take joy in the tiniest things now, just getting out on a beautiful day like today and driving to the next village where there are glorious views over the Peak District and you just thank God you are alive to be able to see it and hear it. We talk and laugh a lot about death, I have convinced Geoff (I think!!) that there IS an afterlife and once he passes he will never want to come back. And we also talk about how I will cope having no family nearby and having to ‘start again’. Thought you might both be interested in 2 books I read recently, one is called ‘When I die’ by Philip Gould, the story of a man with terminal cancer and how he planned his own death. It sounds depressing but it is one of the most uplifting books I have ever read. And the 2nd bone was ‘Rowing without Oars’ and I can’t remember the ladys name who wrote it. But again it is so uplifting, she is diagnosed with a terminal disease that only has a years prognosis and she did just live a year after diagnosis. It is her story and how she feels so liberated as time passes and how she accepts everything. As I say they are not as depressing as they sound and thought you Sam and Rhanna and of course dear Andy might find some comfort in them.
    Love and prayers,
    Carole & Geoff Aitken

  2. wilma0750 says:

    Sumphy we all get scared thats nothing to be sorry for the strength you three show is beyond all the reamls and i dont think that i could be prouderoff you no matter how hard i tried . i just hope that when my time comes that i have the same courage as you in facing it . but didnt we have a nice afternoon gabbing about something and nothing even tho your knackerd your still a stubborn little sh.. long may that go on .luv you infitity xxxxxxxx

  3. Brenda says:

    Sam & Rhanna

    I have been to this edge a few times myself and realized that is these little moments of hope that gets us through. Hope these little moments keeps you far from the edge.
    A fellow Journey Person!

  4. Karin says:

    Your honest expression of the highs and lows in the grips of MSA is one that will probably touch more hearts and lives than one will ever know or realize. The fact that you are able to express and be a voice for so many in the awful jaws of Multiple Sytem Atrophy is a gift to those who are either to ill or too ill-equipped to express themselves with such conviction.

    I look at my friend Sonja, who I have known since we were itty bitty girls of 6, who is also doing her best to face each day with its ever presenting challenges. Sometimes I cannot begin to imagine the difficulties she faces, other times it is as if I feel and understand each un-uttered frustration and cry that I see in her eyes.

    I wish you strength and love in your lives and I thank you for digging so deep within yourselves to share your most intimate and heartfelt moments. Your messages of hope and love will live.

    Sonja’s journey is here :

    Warm wishes from the tip of Africa.

  5. Thanks for your blog. I, too, have won life’s lottery &developed MSA. It helps knowing I’m not alone in my thoughts & worries

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