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

Creating memories that last a lifetime

on December 22, 2012

sam and rhanna tinsel cropped
4 more sleeps till Santa…Andy and Rhanna are busy baking making gingerbread men, Christmas cookies and Andy’s all time best..chocolate crumble!

I have to tell you about Rhanna, she received a certificate today from her Amnesty group, it’s a KITE award… Kind Intent Towards Everyone and an £100 cheque!! Talk about pride lol!! I’m so unbelievably incredibly proud of her! She continues in her own little way to blow me away every day!!!

Most of our decorations are homemade and our house is full of giggles. Christmas is such a special time of year and we are very lucky to having a loving family and friends around us. Andy and Rhanna are both trying so hard to make this Christmas special, I wish I could jump into both their heads for a minute to see what’s really going on in their minds, sometimes I look at Rhanna and my heart breaks as she tries so hard to mask her feelings.

Andy copes with things in his own unique way, but inside I know he feels exactly the same as me. I’m so frightened of leaving them, they don’t deserve the heartache they have ahead of them. I can’t stand the thought of never seeing them again, I try to shut these feelings out my mind. We seem to be losing time together because I’m tired so much of the time, it’s so annoying when you know you can’t get that time back.

I get a phone call from a hospital nurse, it’s about the infection in my wound, checking to see how I am and if we are coping, as she’s from the hospital I don’t know her, so when she very carefully read the latest letter and without taking a breath she said “Samantha’s chances of survival are nonexistent” it was like getting stabbed in the heart. Yes I already know that, but I don’t want it read to me like that or for that even to be in a letter or worded in that way. Here we are nearly at Christmas all trying to make it the best it possibly can be, to create memories that will last a lifetime and in that tiny sentence she very nearly destroyed it all.

I’m thinking about the blog and how I need to write happy stuff, it’s Christmas, who wants to read my depressing thoughts, bloody hell Sam!!!
The problem is exactly that, it’s Christmas, such a special time… I’m so frightened of our future. Of what we are heading into, how will Andy and Rhanna cope, will my mum be ok? She has been so wonderful (sometimes she’s a nuisance) sorry mum <3, but the simple truth is that without her I wouldn’t be able to cope.
The same with Alister, best dad, soft as marshmallow! Andy’s parents I love dearly, I email Gordon late into the night with my worries and he always replies with an email that makes me wipe my snotty nose and blotchy face ☺ so many people have asked me what I would like for Christmas, I reckon probably Tesco, Asda etc aren’t selling any cerebellums this year and frankly a ten year membership to a gym would be more than a little wasted on me…

What would I like for Christmas? I would like to be me again, other than that I would like to wish to spend more special time with my family, watch Rhanna as she grows, snuggle up with my husband and feel him kiss my forehead the way he does, I would like to wish for everyone else going through the same battle as us, a very special Christmas with their families.

Yipppppeeee the school disco was a huge success, we raised £570 which is brilliant and everyone had a great night, the photographer from the local paper came and I think it’s in next weeks paper. It was funny getting ready, my friend Poppy came down so nearly all my clothes were out my cupboard and three outfits later yippee we were ready to go, thanks Poppy Petal for helping me hehe!
Mum and Andy took us down and came in to school to say thank you and stuff, everyone was so nice to her and everyone loved her.

It was so fun, it’s been a mixture of happy and sad in the last while, Andy and I have been baking for Christmas, mums chair has been moved so she can see into the kitchen but although its been amazing doing that with Andy I wish that my mum could as well, I know that there are others with problems and I feel so sorry for them too but with my mum it’s like an ache I can’t really describe, it never goes away, never ever.
Andy and have made gingerbread men they are so awesome, however my decoration of them, well mum had a fit of giggles hehehehehe!

We are all staying positive, all the time but of course in the back of all our minds is that horrid what if? Please don’t let this let be our last Christmas, mum said don’t get carried away with that thought, it’s the here and now that we have to focus on, it’s not always the easiest thing to do though.

We are planning a big event for march which is MSA month so will keep you posted about that! Just now it’s top secret! So there’s our next milestone, March 2013.

My wish for Christmas, I don’t need to say, but on Christmas morning I will be squeezing my mum extra tight and holding her in my heart and her smile in my mind.
Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

8 responses to “Creating memories that last a lifetime

  1. wilma0750 says:

    So samantha youve done it again left me speechless with your courage an strength truly amazing . the gingerbread men very moreish noticed nae choc crumble hmmm . you know samantha we are allowed to get scared and i know how hard it is i feel what you feel and my hearbreaks the same as yours but samantha we will get there just because off the courage that you show on a daily basis truly amazing and i am sooooooo proud that you are my wee lassie and rhannas a mini version off you in everyway . god knows samantha how much we all love you and you just got to hold on to that thought love you infitity xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  2. Tanya says:

    Dear Sam:
    You post moved me very much, but I´d like to add: Who´s to know when we will die? The chances of survival of every human being are nonexistent, even that awful nurse, who could have been a bit nicer, is going to die someday. No one will live forever. But we MSAers are more aware of this fact. Right now I have a terrible UTI and the Drs. wanted to send me to the hospital today. This time I said NO, we will have to wait until the 25th. I will not be spending my possibly last Christmas in hospital. I will not miss the children opening their presents. I know that terrible feeling of “This might be the last time we…..” Life is now full of possible last times as to drive anybody insane. My children are 14, 11, 9 and 5. It is so good that Rhanna is a bit older. I am worried that my youngest will not remember me so I take a lot of pictures and video just in case.
    I wish you a wonderful Christmas and lets hope it is not our last.

  3. To our darling Samantha, Andy and Rhanna
    The brightest stars are the ones that shine for the benefit of others. So so true with you Samantha and your incredible family. As I just told our 2 boys tonight, this may be dads last Christmas so lets make it extra special. I cannot begin to imagine how you feel Sam knowing you are going to leave Andy and Rhanna. But what I DO know is you are going to the most wonderful place and you will NOT want to come back, not even for them. And if only they could glimpse that place if only for a second they would not want you to come back! You will leave behind part of you for Andy and Rhanna, you only have to look at what Rhanna’s doing now to see and hear how like you she is. And they WILL cope. You in your own way would want that and will be urging them on to cope, of course life will never be the same again for them when you’re gone but Andy and your mum, all your family will come together to CELEBRATE your life, a life yes cut short by this vile disease but hey what a life!! The example you have set for all of us to follow when you are gone is mind blowing. I will never forget you and I vow I will dedicate whatever is left of my life to make people aware and raise money to aid research into this pig of a disease. I know when you pass you will be “safe”. My mum died from cancer and I prayed every night for God to take her home because she was in such pain and yes the minute she passed I wanted her back but somehow I knew she was safe and that was all I wanted.
    God bless you sweetheart and your darling, strong Andy and Beautiful Rhanna,
    Now as always
    All our love C & G xxxxx

  4. joyce wilkinson says:

    Wishing you and your family a very merry Christmas. Lets all not worry about the New Year until it arrives. Then I’m sure you will face each day as you have this year, with courage, dignity and pride. You have the heart of a Lion and a loving family. X

  5. salika says:

    Merry Christmas, God bless you, stay strong and believe in miracles.

  6. Alice says:

    This moved me to the core, I hope you have been having a good Christmas. I saw my sister yesterday and it did shock me the difference a couple of weeks have made, but she amazes me with her cheerful demeanour.

  7. martin carr says:

    My wife died in June 2010 from the same condition it took over 8 years of deterioration from collapsing at work, and seeing various doctors to get a diagnosis from a doctor on the Walton center in Liverpool it was then a case of getting help were possible, I found there was little or no help as some professional people did not under stand the condition and at the time there very little on the net about it. Any way her death was peaceful on one Saturday morning I was helping her with a cup of tea when she just passed out, and eventually on the Sunday morning she passed away very peacefully. We had been married nearly 40 fantastic years,
    May god bless and take care of you,

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