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

MSA…the cruelest blow

on February 5, 2013

Sam and Rhanna huggingSam:
My heartbeat, my strength and my baby…Rhanna. Even though she is not so very far from being 17 years old she’s still my baby. Every mother has a special relationship with her children, a unique bond.

My first hugMy relationship, my bond with Rhanna is unbreakable and always will be, MSA can’t change that. Rhanna was born 14th April 1996 at 25 weeks weighing a very tiny 1lb 11oz, we were told she had very little chance of survival. Obviously she had a reason, a purpose because she fought with every breath she took and nearly 11 weeks after she was born I got to hold her for the very first time ..21st June 1996.

The time that she spent in the hospital was the worst time in my life, far worse than dealing with my own illness, the feeling of complete and utter hopelessness never leaves you and the fear of leaving her was always there.

Rhanna in incubatorWe, in all honesty have the closest bond, we always have, in many ways I believe that she is the reason I’m still here. Leaving Rhanna because of MSA is the cruelest blow. Rhanna and I spent some time apart when she was little and it broke my heart, now she is never very far away from me and there is not a single day goes past when I tell her I love her or she tells me the same.

Leaving Andy because of MSA is also the cruelest blow, he really is incredible, he came into my life at exactly the right moment and literally saved me. He loves me, I can’t begin to describe how much that means to me, in return I love him more than I can express but he knows.

I have learnt (slowly) to try not get involved when Andy and Rhanna disagree. It’s very very difficult but I’m getting there because the truth is that I have to because I won’t always be here and someone needs to be there for Rhanna, there is no one else I would want than Andy.

It’s been a tough time recently with family, our family is no different to anyone else’s and has its ups and downs, you just have to hope the downs don’t last to long because time is far to precious to lose now.

Family means different things to different people, to me my family are Sam and Andyeverything and I’m very scared of not being here with them, that frightens much more than dying, if that makes sense. I never want to be away from Rhanna, she has so much she wants to do, so many dreams she’s yet to achieve, I want to be here to witness them all, to see all her dreams come true and to see her name in lights when she makes it as the actress she is desperate to be. I have utter conviction that she will do it, total faith in her strength, courage and determination to succeed.

She has already fought her hardest battle and I will never ever really be away from her, I’ll be there watching her as she grows.
Holding her in my heart, always xx

My mum is my heroine, she’s exactly what I want to be when I get older, she really doesn’t have any idea of how special she is and that her eyes totally twinkle when she’s happy.

She hasn’t had a very good week, there’s been silly fall outs with family and she isn’t coping with it well. Then to top it off, her hands won’t hold a fork and her speech has been bit harder so the she gets upset again and blames herself ALL the time. She keeps telling me family is important and without them you really don’t have much, I’m not so sure when I see her hurting that she’s right, just because someone is your family doesn’t come with an excuse to hurt someone.

I haven’t said this but this is the truth, when something happens no matter who’s wrong or who’s right sometimes the right thing to do is apologise, otherwise you may never get the chance and what a horrible thing to live with, I don’t want my mum hurting in the time she has left with us all, I would say this to you mum but I know you’ve had enough and I know you are wrapping yourself up but you don’t have to, you never did anything wrong.

I think my mum is the most amazing person with the ability to love so many people and the want to do things for other people. I don’t want to think about what will happen in the future, it’s too scary. I need my mum, I will always need my mum, she’s the sun that always shines. She’s very funny too, she giggles at things no one finds funny and cries at the sad things on telly.

She cried proper at lilo and stitch and Marley and me, laughs at John Bishop and loves John Barrowman and Philip Scofield. She is beautiful but doesn’t think she is and she is the very sticky glue that binds us together, she loves Andy and I and tells us all the time, she has so much to offer this world, that’s why MSA shouldn’t be allowed to happen to her, to anyone really and I think that’s why she wants to do something.

One of my favourite things with mum is cuddling up with bowl of chocolate buttons and watching 90210 or Waterloo Road. I love that she’s good to my friends, threatens to batter anyone that hurts me hehee and protects Andy and I with a love that I hope I can offer when I grow up.
Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

9 responses to “MSA…the cruelest blow

  1. illa says:

    god is big i am sure will help you too .my prayers are with you both .be strong and positive i wish i had power to help you guys ….love you both illa.

  2. As always I’m reading this and I have something in my eye 😉love u both and very proud of you xxx

  3. Oh Sam, I have a daughter (Sara) who is the same age as your daughter. My heart and prayers go out to you both, and Andy too. God Bless.

  4. says:

    Once a heart felt blog, I feel so lucky to have found you guys.

    My husband was diagnosed with MSA in December last year though we can trace his very 1st symptom back to about 4 n half yrs ago.

    There was a time that, as a couple we were just drifting along, but this disease has brought us so close. I really don’t know what I will do without Mick. We have just celebrated 33yrs of marriage and are planning a few memory days with the kids and grandkids before he starts to deteriorate.

    You all have such a strength about you that shows me that I can be strong too.

    Take care, love to you all.

    Heather x x x
    Sent from my BlackBerry® wireless device

  5. As Heather above says and I totally agree you have helped me and Geoff so much all 3 of you. I don’t know what I will do without him and yet now feel so strong and I know its down to you guys. I am slowly accepting that this is Gods plan and even though I don’t understand it at all and and am angry at him for doing this, I do accept that this is whats meant to be and there will be an answer in the end. I feel somehow a peace that I hadn’t felt before and its come through finding you 3 very special people that have come into our lives and given us a reason to continue and I truly believe that was Gods doing. Everything happens for a reason and never doubt Sam that you will be in Andy and Rhannas life forever, and you will certainly see her fulfill her dream of becoming an actress. Remember the stories I told you about the pool ball and the angel necklace from Leighs mum, well if ever proof were needed it is there. Please keep strong and PLEASE keep believing in Faith Hope & Love!!!! C & G xxxxx

  6. jacqueline says:

    Hi Andy
    It’s lovely you are a strong loving family and there for each other. I have 3 daughter’s my youngest the same age of Sam,s little girl. I can’t imagine how hard it is for you all. You all have great strength and love. I hope you get the time to carry out lots of more special memories together.
    Love Jacqueline

  7. Fiona Thomson says:

    Truly amazing, you are both quite inspirational and in my thoughts everyday, love to you all xxxxx

  8. Deline Edwards says:

    Hello all of you, my name is Deline & my brothers wife had MSA…I only found your blog tonight & have been reading about you brave & wonderful people..Wondering how Sam is now ….praying for you, be strong. No matter what, God loves us even though we will never understand why these awful things happen. Dianne died 4 years ago, but we will never stop the fight against MSA. Keep fighting & ask Jesus to be with you & in you. If you put your trust in Him when you leave this world you will go straight to be with Him in Heaven. lots of love to you all from me in Port Elizabeth, South Africa.

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