myfamilyandmsa

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

I wished on a star.

on July 20, 2013

Sam:
I wished on a  star-goldthat all my dreams would come true and on this one day they did. 131 birthday cards with the most beautiful messages of hope, inspiration, joy and laughter. Gifts from people I have never met but will treasure always and my family and friends along with card, gifts, a cuddle and a kiss that meant I can carry them with me forever.

We had beautiful weather for the party on the barge and Andy had us all in pirate hats!! There are a zillion reasons why I will remember my day, every single person there meant the earth to me:

Carole Aitken who travelled up, leaving her husband for the first time (Geoff has MSA) she touched and took away a piece of heart.Sam and Carole

Torsten Larsson, some people are just meant to come into your life and I believe he was meant to come into ours, he is an incredibly special man and although not a blood relative, related to me anyway!

There wasn’t one person on the barge that shouldn’t have been there, my mum and Ali who are indescribably important to means I cannot imagine not having them. Edna and Gordon, who really it was Andy who brought them into my life, I have no idea if they know how much I love them, but I cherish every moment I get to share with them.
Rhanna
My baby girl Rhanna, I don’t feel like I have to say much other than she is I and I am her. Her friends Hazel and Jaynah who support my,girl!!!!

My big sister who throughout our lives we’ve had our moments but she still gave me her flip flops (love you Bev) my best friend Anna who has shared some of the best and the worst parts of my life and I love you AnnaBanana, you just gotta learn to love yourself!

My best friend from old and I’m so thrilled to have her back in my life Sharon who has her own set of heart breaking problems and yet do know what honey, no one knew on the barge because you kept that beautiful smile.

Nicola who has the biggest heart and is one of the most generous kindest people I know, I love you so much, you mean the world to me. Yvonne and Eileen the worlds best neighbours!!!

My dearest unbelievably funny Isobel whose cuddles make my problems seems a million miles away. Donald recently back in our life with his funny stories!Andy's mum, Edna; Rev Mary Henderson, and Isobel

My amazing clever hilarious nephew Marcus who OMG starts high school after summer!!!!! Our wonderful Rev Mary Henderson, you would be hard pushed to find a nicer lady ever, I’ve already emailed her with what I wanted to say.

Then we have my husband Andy, I love, laugh, cry, smile and all because of him…we never knew 7 years ago this would be our lives how and I asked Andy had we known, would he have walked away, he said NO and I believe him.

P.S I must mention my carers Fiona and Lindsay who make me laugh, clean me up and NEVER wear their gloves hehehehehe love you xxx

Sam and AndyAndy:
131 birthday cardsIt’s been a great week here in sunny Scotland, it’s great when a plan comes together, thanks to friends and well-wishers you certainly made sure Sam’s birthday was one that will never be forgotten. I’m guessing our postie is gonna be a happy chap now Sam’s birthday has passed!!

I’m sure everyone out there caring for someone dealing with MSA knows how worrying a time it is, when you organise something, hoping that the one you care for is gonna be okay on the day, not do to much, and not knock too much out of themselves having a good time, it’s a terrible balancing act and one I guess carers just have to live with.
Luckily for us Sam had a great day only falling asleep 30 mins on the barge due to get back leaving a blur for her and she has little recollection of getting off the barge, getting home, or any of that evening either.

We went to Oban for a couple of days and had an amazing time, just chilling, sitting at the waterfront watching people going about there business, families enjoying themselves loving life, living life, just exactly what Sam and I are doing only in slightly different circumstances, I have to give a wee special mention to the staff at the royal hotel in Oban they went well above and beyond to make sure Sam and I had a memorable time, this is a break neither of us will forget in a hurry,  I’d go back in a heartbeat.

Love ya Sam, xx One of these times you will stay awake long enough during the car journey to enjoy our awesome scenery!!!!

Advertisements

7 responses to “I wished on a star.

  1. Illa. says:

    Beautiful people ,happy belated birthday ..wishing you happiness for you all. Illa

  2. Judi Marie says:

    So glad to hear that all went well on your birthday and you had a great time. Judi x

  3. Heather Buckel says:

    So glad you had a fab birthday Sam. It was a real pleasure to make and send you a card. Thank you for my card too. Take care xxxx

  4. wilma0750 says:

    wot a grt day it was hen all these lovley people at ur wee party on the barge and the sun even had its hat on jist fer u sumphy, an aw the lovely people torsten carole mary an aw the rest how nice was that i will remember that day for all time an how well andy rhanna an anna done awesome oh an aw the cards u got from aw ower the word awesome thers a lot o real nice folk oot there your blessed , luv u infinity xxxxxxxx

  5. Fiona Ure says:

    ive told you before sam its always a pleasure NEVER a chore…even if all we do is laugh.. and i DO wear gloves hehe..love you xxxx

  6. Annika says:

    Happy late birthday! My daddy was today diagnosed with msa, after being an ms-patient for about 6 years. I just cannot believe it. He’s my favourite man in the whole world, the best daddy anyone could ever hope for. He’s really bad now, he crashed this spring, he has problems with eating, talking, just about with everything… Any advice, words of hope? Thanks, I really need them right now….

  7. sam preston says:

    Hi just been reading your amazing blog. Our mum died in 1995 aged 47 of pneumonia csused by her immune system being completely weakened by Msa. She was diagnosed with msa by the national hospital for neurosurgery in London. It was a long and harrowing journey for mum and the rest of us who had to watch our sporty mother slowly become less able. I think your spirit is an inspiration. Regards.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: