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

Friends and family.

on June 17, 2013

Sam, Rhanna and Andy

1. Noun : a group consisting of parents and children living together in a household.
2. Adjective: designed to be suitable for children as well as adults
1. Noun. Kin – house – household – stock – clan – race -tribe
2. Adjective. Domestic – homely – home – familiar

1. The emotions or conduct of friends; the state of being friends.
2. A relationship between friends
1. Amity – fellowship – companionship – comradeship

Are there people you wish were actually your family members and not just friends? But then would those friends still be the people you thought they were? Does that make sense?

I, like most of us have a good family, sometimes actually a great family. Those that know me closely will know that my family is the most important thing to me. I don’t expect because I’m dying that my family should fall at my feet and I ask for nothing from them, not even their time, not when it’s not given willingly.

My friends, my best friends offer me their time at the drop of a hat and more importantly they offer Rhanna their time at the drop of a hat.

I wonder if anyone in my family ever asks my mum is she’s okay? Having MSA doesn’t just affect me, it affects those who care for me and it breaks my heart and rips at my very being knowing I’m hurting them. My mum isn’t on my doorstep everyday although I’m sure she would want to be, I’m a mum and my daughter fought tooth and nail to be here, I couldn’t be with her all the time but I was there every time I could be.

Families are never easy, there are fall outs and he said, she said, they said.

Every family is the same…I’m not entirely sure what I’ve done to hurt someone in my family who I love dearly and wish her happiness forever.

See, this is what I’m talking about although I suppose I’ve gone a complicated way around it, my friends have given me so much, I am so close to them that I know I could pick up the phone and they would be there day or night, they are there for Rhanna, there for Andy. Andy, my rock, my total strength, my hero.

My mum…I can’t begin to tell you much I love my mum how the thought of leaving her I can’t even contemplate, she has made such good friends who are helping to support her, she’s yet to meet these people but I’m so glad she has them.

The online support groups, the stories you read, the heartache of others, makes you realise, makes you understand that you are just one person, you can’t change the world, only the world around you.

Yesterday was Father’s Day and we had a BBQ it was fab, then later in the evening I took poorly, I passed out but much more frighteningly I was so completely helpless I had no control at all and even as I think of that now, it utterly breaks me, last night was one of the most frightening experience for me since being diagnosed because i got a glimpse into my future and it scared me so much, I found myself praying to let me die before that, some may say that’s very selfish but please don’t let me become so dependant, so reliant on someone is who in turn gets to experience your pain and heartache.

So although I’ve went off my thread a bit it all comes down to one thing, compassion the one word not in any of definition but should be…. I wish that I could pick up the phone to members of my family and them my heart is sore, most of them are incredible including Andy’s parents who thank god were here last night and my mum and dad, my big sis who says it as it is (sometimes the best way) I don’t have to wish I could pick up the phone to my friends, it goes without saying they will answer.

I wasn’t sure if I wanted to write in the blog in this week or not, I’ve been so busy rehearsing with the show for school, starts tonight aarrggghhhhh hehehe! Mum and everyone are coming on Wednesday night, lots of them are coming so it’s going to be noisy hehe.
The reason I’m saying about the blog this week is not because I didn’t want to or because we have been so busy but because this last little while I’ve been wishing that I had my mum back, I know I still have her but you know what I mean, like going shopping and trying outfits on or just a last minute trip to the shower or a pamper day just her and me a massage, our nails our hair just us just normal and not having to have a super plan before we do anything.

She sleeps so much now and I don’t know if that’s good or bad, know how sometimes people say sleep is the best medicine? Her friend had a baby, welcome baby Isla, I know mum can’t wait for a cuddle and I hope I’m in when you come!

I think when we come back from somewhere we are all on a bit of a downer. Skye was incredible, amazing, everything it was meant to be but sometimes when you come home it’s harder to face reality!

On a big huge massive plus the exams are gone yippeeeeeee. I’ve done more things with Waterloo Road and we have mum’s birthday coming up in July so we have to start our secret plans!

I know she will read my blog so I can’t say anything but mum don’t read this little sentence hehe. I would love mum to get as many birthday cards as we can from all around the world, please email me and I will give you our details.

You can look now mum hehe!

Lots of love to everyone and love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

northern lights green

3 responses to “Friends and family.

  1. annaw53a says:

    defo goes without saying anytime any day n for any reason ill always be here for you all xxxxxx

  2. wilma0750 says:

    Well ma wee hen can only be there for u an urs ,it was a lovely day on sunday the barbi was grt an u looked lovely ,am sad that u took bad after we left what a fright uz must have got i know its easy for me to say try and not dwell on it hey ho hen , am also glad that you met jo jo and a promise she can cum for sleepovers lol was nice to see a sparkle in your eyes , and am thinking that you will have an even bigger sparkle on wednesday when we go to see rhannas school show you just got ti rest till then or else lady your arse be getting skelped luv u infinity .xxxxxxxxxxxxxxrhanna ur a star and your ,your mums shinning light and andys luv u zillions hope your plan for the b cards come off xxxxxxxxxxxx

  3. Ria says:

    Samantha, you sound like such a fantastic person and Mum, I read your blog and learn more every day, I pray for you all of the time and tell my family about you, kind of sad that my mum and dad have cut me, my hubby and their grandson out of their life…. especially when you don’t really know what the future holds. Reading your blog makes me angry at them, you are an insperation and so is your family, people don’t realise how hard it can be so reading your blog helps us understand. I hope your feeling a little better in time for your birthday next month, keep your chin up and stay strong, take care xxx

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