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

Do you see what we see?

on May 18, 2013

Sam and Rhanna:
Well it’s been a very up and down week with some great moments and some really not so great points! Mum and I have decided this week to do a joint blog as mum is finding things a bit hard.

We had the chance this week to finally meet one of the members of the MSA Trust, Ellie and quite honestly she really is the nicest person in the world ever! Also she has very cute kids, hi to Immie and hi to Levi ๐Ÿ™‚ we are so thrilled to have had the opportunity to meet her and hopefully one day soon we will get the chance to organise a proper MSA event.

Mum has slept a lot since the visit but she wouldn’t have changed it for the while. She’s missing her friends, we have had to cancel visits through either them being snotty nosed or mum being tired.

Teehee, mum is telling me to write about the stress of the exams, I know I’m not different from any other teenager but why, why, why does it have to be so stressful?!! English exam on Monday so I can’t do Waterloo road on Sunday .. Gutted ๐Ÿ˜ฆ

We all went adventure tubing as part of Andy’s birthday back in April, it was so much fun and we all had wetsuits and big tube things, I didn’t do the jump neither did Anna but everyone else did! Mum had organised a cake for Andy and Abigail cause it was her birthday too, I bet you, you would have to look far and wide to find anyone as special as my mum.

We are sitting on the bed and she has fallen asleep, she is so beautiful and having a really hard time about stupid things just now like clothes! Sheโ€™s seen a beautiful maxi skirt on Karen’s website Zuri boutique so Andy picked it up and it’s lovely, there’s so much clothes she can’t wear anymore jeans and stuff and because of tubes she can’t wear shorter skirts add that to her little legs she’s so self conscious.

Finding age wise clothes that are easy to wear for a younger person in a wheelchair, it really upsets her. Sometimes for some stupid reason she feels horrible, I suppose that when your female we all feel ugly sometimes but there’s been so any tears in the house this week. She just wants to be normal again and wear shoes although Andy had found wide fit shoes from New Look ๐Ÿ™‚

I’m getting my hair done properly, hopefully next week yippee I can’t wait, I can’t get it changed too much as Waterloo Road don’t let you and although me, my Granny and Mum all have forget-me-knots tattoos on our ankles. I have to be careful not to change my appearance too much.

I wish mum could see what we can see, we see a beautiful woman where as she sees someone not pretty, she sees someone who can’t wear fashionable clothes like she has in her wardrobe. It doesn’t matter a bit but my mum has a heart of gold that shines from the outside in, that’s what beauty is and I love her even if she has fallen asleep and left me to write what was meant to a joint blog hehe!

Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

P.S check out these shoes!!

3 responses to “Do you see what we see?

  1. wilma0750 says:

    Way to go girls and didnt we have a grt time at the tubing a no b daen that ever again aw that climbing at my age omg it was worth it still cannae feel ma toes lol an ur right rhanna ur mums so pretty evin in her jammies think shes daft fer tae think otherwise ,anyway this b short got to go work luv uz xxxxx

  2. Brucey says:

    Wow well written. I have to say I had an amazing weekend with you guys. Sam you really are a special beautiful lady and are one of the nicest people i have ever met. I hope to meet you all again as you trully all are special people.

    P.s. Rhanna you are right your mum does have a heart of Gold. ๐Ÿ™‚

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