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

Magic fairy sparkles

on December 18, 2012

I hadn’t been out for three weeks apart from appointments to doctors and hospitals. The operation completely floored me and then the infection afterwards aarrrgggghhh!!!!

Sam and the Cinderella castOn Saturday we had the most incredible evening, it was the last night of the panto and we were off too see Rhanna playing the fairy godmother. She had organised a surprise for me to go down a little earlier and get my picture taken with all the cast on the stage, felt a little like she was my very own little fairy godmother with her magical wand!!

All the kids were incredible, and straight out of the mouth of babes came a comment “that lady is going to be dead next year”,  I actually nearly burst with laughing and it definitely stretched my smile! Right at that moment I knew whether I was here or not next year that my little girl would have memories to last forever! That little girl didn’t upset me, quite the opposite, she was simply being a little girl and later on in the evening she covered Andy in magic fairy sparkles… still picking them out his hair!

The show was amazing, honestly was quite magical and the kids were all fantastic, of course for me there was one person on that shone so brightly on the stage, Rhanna! She was every bit the star, a more wonderful fairy godmother you could not have picked, as I’m writing this I can see her clearly on the stage and even though it makes me cry, its not in a sad way if that makes sense?

I have brought up Rhanna and I am so proud of the young lady she has turned out to be, this weekend reinforced to me how much she is loved by others and to see her surrounded by friends is a memory I’m keeping stored in my heart, a reminder that no matter what she will have  family and friends around her whenever she needs them. One of Rhanna’s friends told me she loved Rhanna and they would forever be friends, thank you sweetheart, you know who you are.

On Sunday we went to see Nativity 2 at the cinema…it was fab, it made us come home and watch the first one all over again! As it was on I looked at Andy who I swear has utterly changed my life and the best man he could ever be, i cant describe to you my feelings for him, safe to say I love him with every piece of me, and I looked at Rhanna, my beautiful daughter who I would go to the ends of the earth for, these two belong to me 🙂 There is no better gift than that, and MSA cant take that from me.

I still feel a little bit magic after the weekend, all last week I had shows every night so it was a bit of a dash everyday and I feel I haven’t seen much of anybody except the cast, the directors and everyone involved with the show!
On saturday night my mum and my family came to the show.  I  had arranged for mum to come down early to come on stage for photographs with all the cast and it was amazing, mum loved it and everyone was so kind to her.

Earlier in the day I had to text to ask if I could go to the after show party but wasn’t holding out to much hope but ping the text back said yes that was fine and andy would phone and book a taxi home for me yipppppeeeeeeeeeeeee!

The show was amazing, mum was in front row with Andy, Anna, Granny and Isobel and my Auntie Becky, Grandad, Marcus, Auntie Lisa and her Andy (yes we have two hehe) and Uncle Iain and Keir were all there too.  Every time I looked at my mum she was smiling, she had a wand and a crown, she looked so happy, I wished at that  moment I  was really a fairy godmother and could cast a spell to make mum better but right now at that moment she looked so well so in a way maybe that was a little magic?

All my friends were amazing to mum as well and there was loads of tears afterwards because so many of us aren’t going back next year but we will always be in touch 🙂

Sunday was really nice day as well, mum managed to get up and we went to cinema, it was fab, she’s tired today (Monday) but said she wouldn’t change it. I’m so happy to see her like this, happy in a way that makes you feel like you are smiling from the inside out!

Tuesday is the school disco for MSA, Jaynah has sold over 100 tickets which is incredible, my family will always be thankful to her for helping doing all this, she is a total star! Her Uncle is doing all the music and everything so we owe them a great deal, and Mr Dunn and the school, I cant wait, super excited to get dressed up and know its all for a really good cause too. Yippeeee will take millions of photos and have a dance for mum. love you mum to the moon and back again xxxx xxxx xxxx xxxx

sam and rhanna tinsel cropped

5 responses to “Magic fairy sparkles

  1. Judi says:

    Another emotional post. The thing with MSA is that it robs you of a lot but with the right care there is still a lot you can do, like enjoying Christmas celebrations. It sounds although the care from friends and family is excellent. I hope you have the best Christmas ever and savour every moment. God bless.

  2. Bev King says:

    I am so proud of the women in my family, Rhanna has grown into such a kind sensitive soul and talented , omg the panto was fabulous . I am so glad my sister has had a great run up to Xmas …so many memories to make with not enough time to do it in . I have never been religious or spiritual but there is nothing like a family member dying to change that . I watch my mother watching her baby slip away and its heart breaking i cant help her no more than i can help my sister or niece . I have always fought with with fists which is nothing to be proud of but i so would kick msa’s ass all over the place if i had the chance ggggrrrr!!!!

    My family are fighting tooth and nail to raise funds and raise awareness of this thieving disease and i take my hat off them all. I love you guys so much for being the people you are , msa at least cant change that , keep fighting even when you think there’s nothing more to fight with …your spirit is so strong you even surprise me .

    Happy christmas , you deserve the best xxxx

  3. Caroline Brady says:

    My husband passed away six years ago from complications due to MSA. He lived with it for about 8 years and had a very active and productive life until about six months before he passed away. Like you, it took some time before the actual diagnosis was made. He had all kinds of tests for MS, Parkinson’s, ALS. Finally, a fine group of neurologists and neurosurgeons discovered what it was. It’s not what you want to hear, but at least you know what you’re up against. I know exactly what you are going through and how you sometimes feel so helpless. It seems to me, however, that you and your family are strong. I wish you all the best in this difficult journey.

  4. Sylvia says:

    Hi My husband has just been told he has MSA I find it hard to talk about it I feel I cant express how I feel it . I thnin you are very brave and would like to help in in any way to get funds to finding a cure so no one else has to live with awful illness.

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