myfamilyandmsa

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

Tonight…I’m tired

on December 8, 2012

Sam and Rhanna

Sam:
Tonight I can’t sleep, sometimes the thought of closing my eyes scares me just a little too much…
I look up at Andy and see him getting upset, Jesus I hate that, I hate seeing that despair in him, how unfair to give me somebody I love so very much just to take me away a bit later!
I hug Rhanna like every hug is the last one and honestly, I’m tired.
You know when you just want someone to fix something for you, a plug or something but they don’t have the right screwdriver, that’s how I feel..
So rather than than be happy because I have an amazing family who I love, really love more than I can say, I’m a wee bitty sad tonight…

 

Rhanna:
Tonight was scary, mum kept getting awful muscle spasms and she was in the bathroom for ages, I could her crying, muffled cause she was covering her mouth.

Only a while before that Andy and I were making bangles for fundraising, cards were next, mum loves doing them but her hands wouldn’t let her, why does it take away things like that?, at least let her find some form of comfort and distraction by doing cards.

Santa?… Don’t you just wish it was as easy as that, a letter to Santa sent to the North Pole asking for a new cerebellum, mum would like hers in pink please on the plus side we have been speaking quite a lot about Christmas which is hugely exciting, I want to think of a way for mum to get as many cards as she can, I know she wants to send cards to her MSA friends online from Africa, America and Ireland.

I hope mum got sleep last night and the painkillers helped, no matter how much my heart breaks for my mum I will still be smiling when I go in her room and I bet you anything she’s smiling back at me.

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4 responses to “Tonight…I’m tired

  1. Carole Aitken says:

    You darling 3, I pray every night that God gives you all strength and courage to see this evil thing through, sam when you eventually leave this earth for pastures new you will then realise God had a plan for you all along, you shine the brightest light possible into everyones life who is battling this vicious disease, you are an inspiration and your Andy and Rhanna will be fine, they will carry on where you leave off, what a wonderful gift you will leave them, your bravery, determination and selflessness are the most special gift of all, Christmas is coming and i pray the healing angels will surround you and you will feel better at this special time of year, you are such a STAR to my Geoff and me and we:will never forget you, Love always Carole & Geoff Aitken xx

  2. fiona thomson says:

    I feel some tablet may be required Sam, sending you big squeezy hugs,xxxxx

  3. wilma0750 says:

    Rhanna just u hold that thought in ur huge heart methinks you an andy are the reason your mum carrys on an i know only too well bt the hearbreak that ,that msa causes i wish with all my heart that i could make it right for uz i dont know how to an for that i will b sorry for the rest off my life and beyond, but im thinking rhanna that gods got another plan for ur mum we just got to be as brave as we can be and try and draw the strength from somewhere and keep smiling luv u 3 infitity

  4. wilma0750 says:

    Samantha wish i had that bloody screwdriver that u need hen ave looked an looked no got got it hen if only thats all it took ad be first in the q but hen m just maybe theres a cure round the corner we can hope ave bin thinking a lot bt ur blogs and the hope an comfort that it must give to some o the folks outthere does u proud and sumphy u are all that an more if that makes sense , u know hen i dont think u realise wot u have done for the people whos lives u have touched all i can say is keep it up for as long as u can we are sooooooo proud off u luv u infity xxxxxxxx

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