Let’s end October with a bang. 

For the last 23 days I have asked you to join with me and support my #nomoreemptyarms campaign. Asked you to upload an image with you and your loved ones with the hashtag #nomoreemptyarms. All this in hope that we could raise a discussion from the hashtag about Rett Syndrome, generating awareness and understanding is what I was hoping and praying for.
  

You all have supported me incredibly, and again I have been shocked at the momentum that the hashtag has created. My heart has been blessed by the comments, by the questions and by people saying “they didn’t know what Rett syndrome was but do now”. It’s been truly awesome. But now as we reach the last 8 days of October and the final days of the Rett Syndrome awareness month I’m going to ask you to do something more for me.

I’m going to ask you to donate £5 to Reverse Rett and do so in honour of my empty arms, my Livvy. 

  
I want you to join me in fighting against Rett Syndrome and shouting out loud #nomoreemptyarms

  

£5 may not seem a lot, a price of a coffee, a magazine but in fighting against Rett syndrome every penny counts. 

So please make a donation now in honour of my Livvy and for all the parents out there whose arms are now empty because of Rett Syndrome. Then tweet me, Facebook me or just let the world know that you have donated and that they can too. Help share the fundraising link far and wide.

I’ve just donated £5 to Reverse Rett because I want to make sure that there are #nomoreemptyarms you can to. https://www.justgiving.com/Nomoreemptyarms

Please do this for me in honour of my Livvy, do this for all the children fighting against Rett Syndrome today and please do this so that we can be fight together so that no other parent has to lose their child to Rett Syndrome. 

The cure is within our reach, make our hopes a reality. 
Please visit my just giving page. 

  
Please donate here today 

Be true to your dreams.

Have you ever made a wish or written down a list of dreams only to look back years later and feel grateful that they didn’t come true?

Sometimes what we wish for isn’t really what we need, or even what we want.

Maybe it’s a case of not really having the courage to ask for what your heart truly desires.

I often think back to my teenage lists, my journal pages filled with dreams.

I wanted to join the army, to see the world, be a career focused woman. I didn’t want children and as for being married seriously two weeks in a relationship seemed scary. No commitments, no ties, no emotion.

It’s hard looking back and knowing how untrue I was to myself. That even in the pages of my journal I couldn’t find the courage to be honest, to be true.

You see I didn’t believe in happy endings and I certainly didn’t believe in true love. Yet here I am about to celebrate my 19th year of marriage. I met a man who is far from Prince Charming which is lucky as I’m no Cinderella . Yet he is a man who loves me to my very bones. Who brings me tea in bed every morning. Who empties the rubbish without whining and who encourages and believes in me and all that I do.

I believed that I didn’t want to be a mom, the fear of being completely responsible for a child freaked me out. It was never a case of what will I mess up, it was more a case of when. Now as a mom to four incredible daughters and a Foster mom I’m still scared of messing up but when I look at my girls I know that somehow I did something right .That underneath the chaos and the arguments my kids know how very loved they are.

I can’t even imagine myself in the army now, yet back then at 14 it was my life’s plan. I think it was the order that attracted me to it. Having someone control my life was appealing, not having to make decisions for myself. Yet I would have been a lousy solider. Besides the fitness stuff which I used to love I am incredibly messy and often get lost in my own thoughts, not good when you are supposed to be alert and on guard.

I understand people change and grow and I don’t dispute that I have but if I am perfectly honest I think then I was simply afraid.

Afraid to voice my real hopes and dreams.

Afraid to be true to my heart.

I remember vividly sitting at my grandparents kitchen table writing out my lists. My first list was so very different to the second but as I read the words back I ripped the page out of my journal and tore it into tiny pieces. I remember asking myself what I was thinking, mocking myself, mocking my dreams.

You see I so wanted to be in love, to have someone smile at me in that way, you know the one. Where their smile reaches deep into your soul. Where your heart begins to race and your body just tingles.

I wanted the perfect wedding with fresh flowers and hippy hair. I wanted to promise forever in front of those I loved.

I wanted to write but more than that I wanted to share my words. To have them read in places I have never visited, by people I would never meet. I so wanted to speak through my words to others hearts.

And I really wanted to be a mom, to hold that precious child in my arms. To watch them grow, to catch them when they stumbled, to teach,to encourage and to love. I didn’t just want to give birth to children I wanted to love on those in need. Whatever the reason I just wanted to open my arms and welcome them home.

It’s crazy how life works out, I still have a few more wants to achieve but somehow I was lucky. My dreams that I was scared to write down, well some of them certainly came true.

Did my subconscious play a part, who knows?

Yet I so wish I could go back to that scared 14 year old girl and to tell her to own her dreams. To not care what others may believe to be unrealistic, to know that her hopes were within her reach.

I teach my girls now that nothing is beyond their desire to achieve. That to get something you first have to believe in it.

I wish I had known this, maybe I wouldn’t have messed up so many times. Maybe I wouldn’t have set myself up to fail. Maybe I wouldn’t have hurt myself so many times.

Self sabotage may be my favourite two words (NOT)

So if you are reading this, pick up a journal, a notebook or a scrap piece of paper.

Now write on it your one true dream.

Not whats practical or what other tell you to aim for.

Write your hearts desire.

Now believe in it.

Take steps toward it.

Own it.

Because seriously if I can get there, you all can.

Start the journey towards them now.

It’s never too late.

Avoid the self destruction and start with self construction.

I believe in you.

 

This post and a few others can be also found over on the Huffington post 

Wow, I’ve been blogging for 7 years

blogging for 7 years

I realised yesterday that I have now been blogging for 7 years this month.

What a lot has happened over the last seven years.

I first took to blogging to share what it was like being a mom of four and how raising a severely disabled child affected our lives. I mainly wanted to share how besides the difficulties how wonderful life could be. How Olivia loved life and lived it to the full. How our family motto was never say never. From iceskating to rock climbing we somehow found a way for our girlie to enjoy it all.

Yet only a month after my first post I was to write through the pain of losing my beautiful girl. How the darkness of grief strove to consume me. How in the depths of despair I somehow managed to find hope.

Writing my grief allowed me to feel less alone, from the comments to the messages so many of you walked along side me. Some never realising how often they were the ones that gave me strength to carry on, yes that’s you Kelly. 

I then shared my journey into fostering, my hopes and my fears but also the joy we felt when we had our first placement. How one little boy became part of our family at the first hello. As you know forever wasn’t going to be ours again and whilst our hearts were torn open and raw my words helped me find some semblance of peace.

On this blog especially I have shared the growing of my beautiful girls how they have stumbled through their teenage years into beautiful young adults, well two have my baby still has a way to go and of course a few more posts for me still to write.

Together we have celebrated their joy, cried with them through their sadness. We have laughed at their drama of which there has been plenty and you have sympathised with me through their tantrums.

This blog is part of my records of my daughters lives and how they have changed me in so many beautiful ways. Taught me patience, resilience and the meaning of pure love.

Through this blog I have had many wonderful opportunities from modelling to  reviews. It’s brought me many online friends who have wonderfully tumbled over into my real life.

This blog has also been a call to action, a place where I have fought for awareness for Rett syndrome and for disability rights. I’ve ranted on politics and so much more and of which I promise there will be many more posts to come.

Where I have written about injustice, screamed about discrimination and cried about tragedy.

This blog, these words are truly my heart in print.

Thank you for being my readers, my friends and for visiting me here in my virtual home.

Thank you for the last seven years and lets hope the next seven are full of love and laughter and plenty of words.

 

thank you 7 years

Know your own value.

Dear teenagers,

There is nothing more than I hate to see then you posting photographs on social media asking for likes. Your need to get reassurance from others. The value you place in the number you receive really worries me.

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You cannot allow your self worth to be based on a number.

The world of social media is a fickle place someone may not like your photo for reasons that are way beyond you, but the fact is, that is irrelevant.

You need to know your own worth!

To know how truly amazing you are.

Post as many photos as you want but love them yourself.

Know that what you see is a beautiful, handsome incredible individual.

Know that each and every one of you is an amazing unique person.

That your life is worth so much more than a like or twenty, in fact no number can hold your value.

You are priceless.

Go ask your parents for a number that holds your value, they couldn’t give you one as their love for you infinite.

Go ask your best friends to number your friendship, believe me when I say true friendship  is beyond any number.

This world is so quick to put a number on things, from the latest iPhone to designer clothes.

This is not true value.

Your smile, the twinkle in your eyes, the sound of your laughter this is what people will remember.

A new dress will become last seasons fashion, a kind giving heart will be cherished forever.

Hey I’m not saying don’t share that photo of you in your new top, coat, jeans hey we all do, personally a good make up day is always a share for me.

It’s not about not posting, its about why you post.

Post because you feel good, post because you are happy with the way you look, post because you just want to.

Don’t hold on for likes, know you are liked and loved.

The number does not hold your value because it cannot,

Because simply you are priceless. 

Priceless

 

Self acceptance 

I’ve been thinking a lot the last few days about acceptance. How’s it’s something we give yet also something we crave.

I’ve know since i first became aware of my feelings that I have desperately needed to feel accepted. 

That I will bend myself backwards, inside and out just feel part of a group. Only then to find myself not truly being me and still feeling lonely in a crowd.

I look for others approval in all I do.

My self worth is handed over to others only measured by what they feedback to me.

I find myself looking in the mirror feeling rather gorgeous only to start self hating if my husband or friends don’t compliment me.

It’s not about my ego it’s my lack of self belief, self worth.

The other day I was on a high due to the publishing of my post over on Huff post. But slowly it ebbed away as the one person I wanted to be proud of me said nothing.

It’s a rollercoaster of expectation drowning in acceptance.

Yet what I have started to realise is that acceptance starts with me. That I hold the power of self acceptance and that it’s not fair to give it away.

It’s not fair to expect others to realise what I need. It’s not fair to myself to allow others opinions of me form my identity. 

Easy said than done though isn’t it.

With a society telling us what size to be, what food to eat, what roles we should play, it isn’t easy to find your soft small voice in the rapturous noise.

But it’s something I really need to aim for. 

Self acceptance.

I want to hear my heart tell me well done, congratulations and you go girl. 

I want to hear this first.

I want to learn how to accept compliments when given or learning to not give a shit when they aren’t.

Self value 

Self worth 

Self acceptance 

Maybe it’s something to do with getting older, about realising that you cannot please all people at the same time. 

I’m not sure but what I do know is that I am proud of myself at times. I’ve worked hard for all that I have achieved and will continue to do so in the future.

 

Weapons of hope

Can I tell you something Rett Syndrome sucks. No matter how loud i shout, no matter how much I raise awareness it still doesn’t change the fact that Rett syndrome sucks.

Rett syndrome stole my heart. 

My world was shattered, my soul forever scarred. 

Grief is a turbulent ride it twists you up and down and inside out. Just when you think you are coming to land it flies up again twisting the very air you breathe.

 A tornado in your soul.

I want to stop being angry, to stop wanting to scream out loud, I want to find peace. 

But I cannot, not until there is a cure for Rett Syndrome. Not until the thief is placed in a cage. Not until the battle is won. 

We will win this battle, the scientists are waging a war, preparing weapons of happiness.

Weapons of promise.


Weapons of hope. 



One day the weapon of the cure will be found and Rett Syndrome will be defeated.

Until then we will battle on, supporting the research with fundraising. 

Every penny in the arsenal against the enemy.

Against Rett syndrome,

Will will be hope in action, until there is #nomoreemptyarms

  

  

Reflective practice

At university we are studying the art of reflective practice and I am absolutely loving it.

“Reflective practice is a dialogue of thinking and doing through which I become more skilful.”  Donald Schön

I think it’s should be taught everywhere in schools and especially to those getting married.

I mean how incredible would it be if our partners ( or ourselves) sat down after an argument and reality reflected.

What  happened?

Why did it happen?

How did you react?

How did you feel?

What would you do if it happened again?

What if my darling (annoying) husband sat back after one our numerous arguments about him not remembering things and thought, this argument happened because I couldn’t be bothered to write a date in my diary. The wife was annoyed, I got defensive and shouted, I  then felt like crap. So if I remembered to remember it may not happen again.

What if my girls who have now just screamed and shouted about how I’m ruining their lives reflected on this. I was asked to bring my bacterial growth experiments otherwise known as my bowls and cups from my bedroom down to the dishwasher. I was asked numerous times, the last time my mom warned me I would lose my mobile for an hour. I couldn’t be bothered to bring them down and now I have lost my phone. I feel angry and annoyed but on reflection next time mom asks I may just do it.

See how awesome reflective practice is.

To be truthful this is only scratching the surface, I am so looking forward to learning more about the practice as I think it’s an invaluable tool to be used. But I honestly think it’s something we could all really use in life.

Like right now as I’m sitting here feeling sick from the chocolate I have just eaten maybe if I had reflected on this a few weeks ago I may not again be sitting here feeling yucky, but then again it is chocolate so maybe not.

Hope In Action

Yay its October the month of darker nights and Halloween but for me it’s also the start of my #nomoreemptyarms campaign.

It’s the time when I drive you all insane with information about Rett Syndrome and the great need for research and fundraising for a cure to be found.

The time when I ask you to join with me and share your photos on all your social media sites.

I want all your friends, colleagues asking you about the hashtag. I want everyone everywhere learning about Rett Syndrome.

I want #nomoreemptyarms to be in every timeline, Instagram, Facebook, Twitter, Tumblr and all those I have yet to learn to about.

WHY?

Because awareness is so needed.

So many times when I speak about Livvy and share what I lost her to people ask me “what is Rett Syndrome”.

Its still so relatively unknown.

I want people to know that Rett Syndrome is a rare neurological disorder that affects mainly girls but also boys.

That every 90 minutes a girl is born with Rett Syndrome.

That children lose their lives to the complications of Rett Syndrome.

Why am I asking you to share just a photo?

 

Follow me over to the to read why ………

 

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