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

MSA – sometimes it’s hard to smile

on April 26, 2013

Sam, Rhanna and Andy
Monday was Andy’s birthday and because he was 50 I had hired him a m2 jaguar which was also 50! Andy and jaguarAlec and Tanya at Caledonain cars were lovely and couldn’t be more helpful so a huge thank you to them, if you are looking for wonderful gift seriously think about them.
Andy is 50!To Gordon (thank you) for being my secret agent! It was beautiful and after a quick stop at his parents to pick a food hamper (thank you Edna) we headed out for a day. Although we have done lots of lovely things together it has felt a bit like we hadn’t done anything just the both of us, so we had a lovely time just cuddling up, eating lunch and blethering about nothing important!

I have been quite poorly and all too aware that I’m sleeping lots more and trying really hard to focus. That was the start of the week…
Yesterday I got a phone call from Rhanna’s school, she had written a poem that had alerted them that something was obviously very wrong with Rhanna. I asked Rhanna if I can write bits of it to you in the blog and she has agreed.

From Rhanna …the girl with the smile

The girl in the corridor who seems to have not a care
The girl with the smile is no longer there
Remember the things you said to her, remember what you’ve done
Remember how you laughed and said it was just a bit of fun
And those who didn’t want to be involved just turned their backs around
While the girl who always had the smile, her world was crashing down.

She told people she was miserable, but no one seemed to hear
It was like she was invisible, even her friend made her feel like she wants to disappear
To those who didn’t listen, how do you feel now
Is you mind filled up with questions like what if and why and how
She does have people supporting her and she knows how much they care
But now because of others she feels they’d benefit if she just wasn’t there
She feels like she is drowning and it gets worse with each defeat
Because whenever she feel happiness, it’s always bittersweet

I wonder if in years to come, you will just forget
That girl you let down and hurt, she hopes you’re riddled with regret
Perhaps now that it’s done with, you’ll put it all to bed
Will you find it easy to forget that girl with the smile is…Dead.

Rhanna smilingAs I wrote this, copied this from a piece of paper I am utterly devastated, crying so hard and so sad I never realised just how bad things were for Rhanna although I know she’s lost friends she also made new news ones, girls that come down to the house and I hear laughter and typical teenage nonsense.

Rhanna and friendsShe’s only 17 and yes some 17 year olds are very mature but not Rhanna. She’s very mature when it comes to all things medical but not streetwise if that makes sense. I want to wrap her up with all my love and swear to god that its going to be ok, who wants to see their little girl break their heart? What kind of people walk away so easily from her?

rhanna with friendsThere are other parts in Rhanna’s poem that I haven’t put in, I couldn’t type the words, I want my baby girl to be smiling all the time, I want to protect her from pain I want to see her laugh till she cries and OMG I can’t wait till the exams are over. Rhanna’s teacher, who I spoke with yesterday is really lovely and she knows Rhanna very well, Rhanna knows to go to her if she needs too.

Rhanna, herself, well only she can begin to believe in herself the way we believe In her. If she could see how beautiful she is, how lucky people are to have her in their lives, how privileged they are to have her as a friend.

Rhanna, you are everything to me sweetheart, there is nothing more important to me than you, you are the kindest, most honest, beautifully amazing young lady with your life in front of you… I want you to grab it with both hands and shout out YES YES YES I CAN BE WHATEVER I WANT TO BE, maybe do it in your bedroom so no one actually thinks you’re mad hehe!!!!

You are my little heroine and oh my god I love you so much all the way to the moon and back again.  xxxx xxxx xxxx xxxx

16 responses to “MSA – sometimes it’s hard to smile

  1. Fiona Thomson says:

    Rhanna you are a beautiful and talented young lady and it’s not only your mum who is very proud of you, I am sure you will go forth and conquer at whatever you choose, big hugs to you all xxxxxx.

  2. annaw53 says:

    i will always be there for Rhanna to speak with and laugh with n bitch with n cry with, ill never let you, andy or Rhanna down you are family to me and i love you all lots xxxxxx

  3. wilma0750 says:

    My heart is well and truly broken for uz rhanna will come into her own am sure luv uz infinity xxxxxxxxx

  4. cynthia Wilson says:

    My heart goes out to you, Rhanna. These are really tough times for you. You are doing such a great job of handling the extreme difficulties in your life. I was depressed once, and I found the following helpful: every day you must do something just for yourself. You must do some little self indulgence that brings you pleasure. You get to set aside everything and do or have a special thing of your choice just for you every day. I feel as if this might sound silly, but it’s not. It really helped me. We love you, Rhanna!

  5. Ines Spence. says:

    Dear Sam, maybe Rhanna needs to cry and grieve with you. She’s heartbroken and scared.
    She’s always being “Miss Sunshine”… Sometimes we all need to cry and be angry and feel that LIfe isn’t fair at all . Sometimes we just need validation. Love you all

  6. Poppy Graham says:

    Rhanna ill always be here and if there Is ever anything wrong I really want you to tell me.

  7. alister ferguson says:

    our love and our hearts are yours forever xxxxxxxxxxxxxxxxxxx

  8. carolynne wallace says:

    SENDING BIG HUGS, YOU ARE ALL AMAZING, xxxxxxxxxxxxxxxxxxxxxxxxx

  9. Jean Ramsey says:

    I feel your pain, I share your tears, I pray God will help all of you through this. I think of you often and tell my family and friends about you. In my eyes all three of you are stars. You have shined over a lot of people. Love the car, what a great idea.

  10. Dear darling Rhanna, we don’t even know you but feel like we do and thats because we have taken you and your dear family to our hearts. My heart breaks when I read your poem and yes these people are wicked and cruel beyond words. I truly believe they will see the error of their ways and I totally believe in Karma and it will visit them. At the end of the day their problem is jealously, jealousy of you. And that’s because you are clever (your words show that), you are wise beyond your years, you are beautiful and you WILL achieve everything you set out to do in your life. You have the world at your feet and its yours for the taking. Just remember that in the grand scheme of life these people are nothing. You will look back in years to come and wonder why you even give them a thought. I knew a young lass 3/4 years back (Alex’s first serious girlfriend) and am still in touch with her now. She lost her mum after 4 months of terminal cancer and similar to your mum her mum was only just 40 when she passed away. The lass was 16 years old so again similar to you. Obviously when she lost her mum she went through hell as you can imagine and I like to think and I’m sure she’d agree that we 4 as a family helped her through it, slowly one day at a time. But come through it she did. Today 5 years on she has blossomed into a beautiful young woman and has got her dream and studied hard and is starting teaching training in September. When she graduated from Uni last year she took some of her mums ashes in her bag with her for her big day!!! I just want to try and show you Rhanna that there is light at the end of the tunnel and you will reach it. These people are nasty and immature, not worth a second thought. I would truly strangle them if I could get hold of them and I think Nan/Gran? Wilma would second me on that!!! Just keep doing what your doing and that is being you. Because that is what they cannot stand. I better stop there as I guess not supposed to be such a long reply!!!! As always we send you our love, OUR HUGE HUGS, and our prayers and remember what my mum used to say to me “God doesn’t repay his debts with money”. PS – you should seriously consider doing a writing/poetry course as was astounded at the depth and feeling of your words xxxxxxxxxxxxxxxxxxxxxxxxx

  11. Dear carole, i showed rhanna your reply and i have to tell you we have the biggest response to Rhanna, so many replies from friends (real friends) there for Rhanna. Hopefully from there she will see that sometimes when you loose something you often gain much more and people see that person for the cruel unkind person they are xxx

  12. Lin Newbold says:

    So Rhanna Crawford….we dont really know each other except from FB & yet, we have something very special in common………an overwhelming love for the special person in our lives.
    I was only a little older than you are now, when my Mum died. She was 49 & had cancer, I was pregnant with my daughter (now 38) & I knew my Mum was going to die for just over a year, but she didnt know she had cancer…….because, In those days, Drs didnt always tell patients the whole story, but she told my Dad, my brother & me & told us not to tell her ” in case it upsets her too much ” !

    I prayed Mum would last long enough to meet her new grandchild but she died when I was almost 7 mths gone. I didnt know know how I would manage without her….I wanted me & my baby to die. Of course, we didnt….I came through it all with the amazing love & support which came from my family.

    You will do the same Rhanna because you have the same strength as your Mum. You are stronger because you are fightig the battle alongside your lovely Mum, an opportunity we dont share. Dont be sad because friends of yours have drifted away from you.! They will spend their lives as just drifters & they dont deserve a second thought from you .
    You have more character in your little finger than they will ecer have so, no wonder they dont hang around ! So Rhanna, please dont waste any more time being sad over them….you concentrate your talents & strength where they are appreciated most, on your amazing family & those friends who you know really care. Life will go for you after your Mum leaves, but she will always be there because ” To live in the hearts of those we love, is not to die….”

    This comes with much love & so much respect for the daughter you are….I wish you were mine ❤ ❤

    Lin xxx

  13. Sharon leitch says:

    Just ready your blog and I am so happy that you and Andy had a wonderful day you both deserve it so much and the car looked so fab.

    To the beautiful Rhanna to say i am disgusted with what has happened to u is an understatement. I actually cried when i read your poem and Sam I wanted to just come and give u a big hug.

    Rhanna with everything that you and the family are going through who are these people, because they don’t really matter they are simply jealous of your strength your personality and most definately your beauty. They are most likely jealous of all your achievements even with everything going on,. have they been and extra in Waterloo Road – NO. Have they started their driving lessons at 17 – probably not. Have they got a car for their 17th birthday – highly unlikely. They are pathetic and they obviously have nothing in their life’s that means a whole lot so they think they can just make other people feel bad and bring them down. Well SHAME on them. I have also had some bad experiences at school and over they years with friend that have let me down badly but you know what kid, you have the best bunch of people around you who would got to the ends of the earth to make you happy and make sure you are safe.

    Rhanna there are lots of people who will let you down and sometimes you will go through hard times (which you have had your fair share of already) but I believe that every hard and difficult time that we have to deal with brings a new lesson which we can learn from.

    As for the people that are making your life hard they won’t be happy until they’ve pushed you to the ground but don’t let them you need to have the courage to stand your ground and not give them the time of day. Hold on to your power and never give it away.

    In the words of Christ Colfer from
    Glee (who i love)

    “when people hurt you over and over, think of them like sand paper. They may scratch and hurt you a bit, but in the end, you will end up polished and they end up useless”.

    Take care and you do have the courage in abundance sharon and Dale xxxx

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