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

Dear Rhanna

on January 19, 2013

Dear Rhanna,

Some may say this is a somewhat public way to write a letter to you and of course it is, I could just sit down and talk to you but I wanted to do this for a reason. We’ve lived our lives outRhanna as a baby through the blog a lot this last while and people won’t know that I have no idea what you have written until it goes live. I wanted to let me people see a little of what I see….
From the moment I knew I was pregnant with you, you were wanted. I ignored health advice and believed that you were what I had waited for my whole life. When you were born so tiny and fragile, your granny and I cried for our hearts were broken at the thought you might not survive, however you mended them because you had the fight and the will to survive.

Baby RhannaWhen I read your blog this week I felt I had to respond, I never never ever want you to feel guilty for anything cookie, every achievement you make, I feel just like I’ve made it too. When I look at you I see this beautiful young lady with insecurities and lack of confidence but Rhanna you are beautiful sweetheart because that beauty come from the inside and shines on the outside. As you grow you are becoming more confident and you are finding your feet, I believe with my all my heart you will achieve your dream and become the actress you long to be.

I know you are scared, we both know about brave faces and staying positive but I want you to remember this, first and foremost I’m your mum, its my role to look after you so never be afraid to come to me with a problem because you don’t want to tire me out or upset me. My biggest fear is leaving my baby girl, of breaking her heart but I want you to know that no matter where you go in this life I won’t be far away from you, I’ll be watching over you and I know that you will be okay because Andy promised me. A promise made is a promise kept.

You are 16 cookie, you should never feel guilty for enjoying life, I want you to live and laugh and dance and sing and above all else I just want you to be you…. I PROMISE you that I will fight MSA for as long as I can but when I can’t anymore, it doesn’t mean I’m not there cookie because I will be….firmly rooted in your heart as you are in mine.
So this is why I wrote so publicly, because I am so remarkably proud of my little girl and the young lady she is growing to be and I want to share that pride, that everlasting bubble of happiness you bring me and the glow of warmth I feel when I say your name…. Rhanna Samantha Crawford,

I love you cookie, all the way to the moon and back xxxx


7 responses to “Dear Rhanna

  1. Mary Burke says:

    Crying reading this. I have MS and not too badly, but I never wanted my children to feel restrained because of the things that I can no longer do. My daughter tries so hard to protect me ( must be a daughter thing) and I am so grateful for all she does. Rhanna sounds like an amazing daughter, you are right to be proud of her and you are right to tell her she mustn’t feel guilty for living. God bless you all you are an inspiration x

  2. Beautiful Rhanna – as your mum says you have your whole life ahead of you and trust me she will ALWAYS be by your side encouraging you and coaxing you on. You sound so like your mum Rhanna, as she says beautiful inside that shines through to the outside. The best thing you can do for your mum is be happy, no greater gift for a mum is seeing their child happy and content, we know the future will be hard for you to face but with your mum in your heart you cannot fail!! Love Carole & Geoff xxx

  3. Yeti says:

    When my wife was diagnosed with MSA in 2007, we decided that our two children had to lead as normal lives as possible. Both did so, but lived with MSA as a part of it and helped with caring for their Mum as you do Rhanna. Their Mum is now a Guardian Angel watching over them, and every day would smile as they are wonderful human beings with determination, compassion and living each day to their fullest. In them I see all their mothers best qualities. Rhanna you are that now and your Mum sees it now. Fate has been unkind with bringing MSA into your lives, but it has also been kind, because two wonderful woman are seeing the very best in each other each day and let each other know. The depth of love you two give each other is in most mother/child relationships but seldom expressed truly. That you too have realised that and taken advantage of this time to do so, makes you both incredible and Rhanna, you will come through this a much better person than you might have been, and your Mums incredible smile will always be driven by pride and love for you and your Dad.

  4. joyce wilkinson says:

    Dont even know what to write! I am crying also. I dont have any parents left in this life but I know they are beside me and I talk to them often. Hugs X x X

  5. illa says:

    my prayers are with you ,dont know what to write ,love to you both .
    illa xx

  6. wilma0750 says:

    Well beannie first off all wot a grt day it was yesterday at ur photo shoot awesome an that is wot u are just awesome so much like ur mum u could almost be twins , ur compassion for others is out off this world ur loving an caring ways will get u through ur life and u will be rewarded over an over again throughout ur life kindness beannie costs nothing but reaps rewards , as i said u r a mini version off ur mum an that wont ever change she will b with u every step off the way luv u zillions an am so glad ur my grandaughter xxxxxx

  7. Adding tears and lifting your beautiful family in prayer.

Leave a Reply

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

You are commenting using your 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: