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

I wish I could wave a magic wand…

on December 4, 2012

Sam and Rhanna

I cry more these days. Although, I’m proud of how strong everyone thinks I am. I’m proud of being that girl that doesn’t let a little heartbreak break her down. I’m proud of coping.
I hate being told I’m inspirational, brave, selfless, amazing…blah, blah, blah.

Until you showed up I wonder if people would still have said all that about me?
For just a split second, I let myself imagine…what it would be like to wake up everyday without you. I have to admit, I love the thought. But as quickly as the thought came, I try and push it away because we know my days with you are numbered.

I’ve told myself, “We can handle it,” “It won’t beat us, we are strong.”
Except I underestimated how much you would impact on my life, my families lives and my friends. Life does not, ever give you a choice. Our lives would be so much easier.

I sit here every day and think about you. Wonder what you’re up to, what you are doing to me today, I look at my family and I feel my heart ache at the thought that when they need me the most I won’t be there.
Then I think “why me?” and the answer is “why not?”
So with that in mind we will fight till we can’t, we will smile every day and make sure that my family and my friends know how very important they are to me.

I keep wanting to write something happy, funny and heartwarming, I feel a bit like mum cause she says the same things. The thing is, it’s really hard to write something like that, not because we don’t have them because we do but sometimes all the other stuff takes over.

On Saturday I was invited by my bffe(best friend forever) to a xmas night at the place her dad works. rhanna in her dressIt’s quite a fancy affair so I got to dress up which was really nice. Mum and
I had a giggle thinking about what to wear and she laughed at me walking in really high shoes! Really high!  So I wore a black dress and jewellery Andy and I make for our just giving page to MSA Trust. I felt like a princess, I was so happy my bffe Steph invited me, we have been best friends forever. We had a three course meal and there was tribute acts which were amazing and we had a proper awesome night!

Sunday we had rehearsals all day for cinderella, I’m playing the fairy godmother, I wish I could wave mymagic wand for mum. We had lots of nice time together this weekend and did lots and lots of Christmasshopping online, sitting in mums bed!

Today though my mum had the doctor out and she has an infection in the wound from her operation, it’s really sore and weepy and she can hardly move.
Her stomach is really sore and she has a bad kidney Infection, it makes me sad because she deserves a break.

She’s excited about Christmas, excited about seeing me in cinderella 🙂

My granny brought through a light up polar bear, my mum loves bears, they are her favourite animal, this one lights up for Christmas and she has it on lit up and it looks magical.

She worries about me all the time and keeps asking if I’m ok, am I ok?
Well I’m ok as long as my mum is ok.
Mum I love you and this Christmas will be amazing, love you all the way to the moon and back again xxxx xxxx xxxx xxxx
polar bear

6 responses to “I wish I could wave a magic wand…

  1. wilma0750 says:

    Well then thats one awesome statement samantha still dont know where you get the strength an courage from im amazed heartbroken but truly amazed , you will allways be in our hearts for as long as we live and beyond well forever really xx its sad that you got that bloody infection in your wound am sure you will bounce back and like rhanna i would give anything to have you better one day soon we hope , i know its easy to say but you got to think fk it your not going to best me love you infitity mum xxxxxxxxxxxxx

  2. Judi says:

    Your story is so emotional and you are so brave to publish it. I know what it is like to live with MSA in the family as my husband had it. There are so many ups and downs, but I can honestly say that he never lost his smile and always had his glass half full. Stay as positive as you can and cherish the little things. Just holding hands means a lot. I’m so sorry you have an infection, you don’t deserve any extra complications. Thinking of you both with understanding.

  3. Dear Sam,

    As we are on the same Journey, the thing that keeps me strong is we are memories for tomorrow for our kids and husband!
    Hugs, Brenda

  4. Valerie Walsh says:

    I am deeply touched by your determination and courage in the face of this uninvited guest in your life. Paul had the same determination and courage and by example ‘infected’ us all with the same. It did so much to help us all get through the unexpected ups and downs, and continue to be able to enjoy all the good that life still held for him and us. I would wish for you what he hoped for and got – he lived fully right until he died. What a legacy he leaves. I truly am left with the all the goodness that was Paul, and though I don’t forget any of the ‘awfulness’ of MSA, it can’t overshadow the wonderful man who lived it so well.
    All the best to you and your family.

  5. JACKIE Donohue says:

    My mum has MSA, she was diagnosed two years ago. It’s the hardest thing I have ever done, trying to care for her along with living a normal life!

    Your blog makes me cry every time I read it and that’s why its so great, it shows people that their not alone with this.

  6. Stef Lorenz says:

    A small ray of sunshine ha just entered our lives. A tiny 9 week old puppy called Wizzy has arrived and has taken immediately to my husband Roger who has been battling with MSA for over 18months. He will sit on Rog’s knee for ages and just loves being stroked. We have never had a dog before because Rog has always had ashma but Wizzy is a miniature schnauzer and completely moult free, Not a hair on my black trousers! After only two days he is sleeping all through the night and has started to go out to wee. Suddenly he seems to have a new purpose.

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