She should have been 19.

I’m not sure how to explain today, how to find the words.

It seems wrong to say that my daughter is 19 today, when in reality she will be forever 9.

I want to celebrate what should be her special day.

I want to eat cake and sing happy birthday, but my heart is just so broken.

How can you celebrate when you cannot hug the birthday girl tight?

How can you smile when forever seems so far away?

Gosh I miss my beautiful girl, that feels like such an understatement. Every breathe I take aches for her, my arms crave to hold her again, my heart beats with a missing piece.

I torture myself wondering what she would be like now, I wonder would she still love her football players, her gothic clothes and Tinkerbell. Yet how can I really know, she has been gone nearly ten years, her sisters have changed so much, so would she?

I have no idea; do you know how hard that is to comprehend? No idea at all. I should know my daughter, I should have been given the chance to.

My heart feels on a roller coaster right now, my faith doesn’t feel like the liberation it should be. Yes, I believe I will see my daughter again but forever is still out of my reach.

Is it wrong of me to wish her back here, back into a body that struggled so much, a body that betrayed her in so many ways?

Is it selfish of me to just want one more day?

Nineteen, it would have been the last of her teenage years, yet the truth is she never got to the beginning.

Nine and a half years, a minute moment in time, not enough, never enough.

I know Livvy would be cross at me today, I know she would be giving me her evil eye and her stern look.

“Mom you know better. You know not to waste a moment, celebrate me and do it with joy. Remind my sisters how much I love them, tease my new brother who you should know I got to meet first. He may have got lost on his way, but I got him to you eventually.

Get out there Mom and enjoy the sunshine, sing at the top of your lungs and hug my Dad tight.

No sadness, no sorrow, no more”

I can actually see her in my mind conveying all this, her eyes alight with mischief.

I can actually feel her soft hand, her long fingers entwined in mine.

I can feel her, but my goodness I miss her.

I can try my darling girl,

I promise I will try,

My heart wants to fall into a million pieces,

My soul just cries out in missing.

I don’t know what or how I will be today, maybe there will be moments of joy wrapped in the ribbon of sorrow.

I can try but I’m sorry Livvy I cannot promise, I just miss you too much.

Happy heavenly 19th Olivia,

Happy birthday Livvy xxxxx

Happy 17th Livvy xxx

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Today my daughter celebrates her 17th birthday, a birthday of pending adulthood the beginning of life on the road. Yet there will be no licence applied for or birthday hugs for me. Because my daughter is celebrating in heaven.

My heart is heavy today, the weight of missing drags upon it. 

I’m reminded of what is missed and what never got to be.

I’m trying so hard to focus on what we did and the memories we made, but 9 years will simply never be enough. 

I wonder what celebrations are like in heaven, do they have birthdays or is time and years past an earthly constraint? 

I wonder if someone has made her a cake, chocolate of course and are they singing her happy birthday again and again just to see the smile that lights up her face. Lights up your heart.

I wonder a lot, what does she look like, would her hair still curl around my finger? Does her blue eyes still sparkle with mischief? 

Sometimes I cannot breathe for missing my beautiful girl. My arms ache just to hold her again.

I often get lost in the anger, just so angry that I was robbed of my amazing girl. Bitter at the emptiness. 

But then I remember her, I remember my Livvy and her desire to live life to the max. Sometimes I wonder if she knew that she didn’t have forever because she packed so much in her days.

She loved people wholeheartedly, from her teachers to her sisters to us her parents. She has this way of making you feel like you were the only one in the room, as if you were so special to her. She made sure you knew she loved you. She didn’t need words her eyes were the windows to her soul, she looked deep inside of you, filling you with love. 

I am so grateful I got to be Livvy’s mom, I wouldn’t trade a moment, a minute. Even today in the minute of this extreme pain i know I would do it all again in a heartbeat. 

Yet today I’m allowing myself to be sad, allowing the waves of grief to wash over me. Allowing the missing to be.

But tomorrow I will move on, I will do what she wants me to do. Continuing her legacy of love. I will love on her sisters and the brothers she has sent to us to love. I will plan the Livvy’s smile events, our forthcoming tea party and those yet to be planned. I will continue on, being brave just as she was. Hoping and praying I’m making her proud.

Happy birthday my beautiful girl, how I wish you were here to celebrate with me. How I wish we could eat chocolate cake until we were both sick. How I wish, how I wish….

  
Happy 17th Livvy, may heaven be singing for you today. I love you my precious girl xxxxx

  

No more empty arms

I’m been thinking a lot about the fact that it’s Rett Syndrome awareness month.

Thinking about what it is we actually want to achieve.

Fundraising – yes

Awareness of the syndrome – Yes

Yet for me I want something more.

I want no mother and father to face the pain Alan and I have had too.

I want no brother or sister to cry themselves to sleep missing their sister.

Grandparents heartbroken.

I want no more empty arms.

So I decided that this month this is what I wanted to focus on.

Raising awareness and fundraising so that no mother or father is left with empty arms.

Rett Syndrome means I will never hold my daughter again.

So I’m challenging you all to help me raise awareness of this devastating condition.

Please take a photo of your child in you arms and upload it to your social media sites with the hashtag #nomoreemptyarms

Join me in raising awareness for Rett Syndrome.

Join me in stopping the pain.

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Also if you wish please consider donating to one of the Rett Syndrome charities.

Reverse Rett

Cure Rett

Or Via Olivia’s Page @ Girl Power 2 Cure . –

Look what we did.

There are very few days in your life where you can look back and see all that you have accomplished.

Monday was truly one of those days for me.

With my charity Livvy’s Smile we hosted a fantastic memory making day for over 60 children with special needs and their families.

It was a truly perfect day.

I could tell you about the laughter that filled the centre.

I might mention the new friendships that were created.

But in this instance I’m going to let the photos speak for themselves.

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It was a wonderful day and although now I am physically and emotionally exhausted I am super proud of all that we have achieved.

Our charity is run in honour and memory of our beautiful daughter Olivia who lost her battle with Rett Syndrome in 2008.

Olivia was an amazing girl who had a real zest for life. Mischief and mayhem were her two favourite things.

I think she would be happy with the magical day created in her memory.

I’m also so sure she would think her sisters are amazing because I certainly do.

Nobel Laureates 2013

I was so excited to read this today.

Thomson Reuters Predicts 2013 Nobel Laureates

Why you may ask.

Well its simple there in PHYSIOLOGY or MEDICINE category is Dr Adrian P. Bird a Buchanan Professor of Genetics at the University of Edinburgh Scotland.

This man may not be known to you but for Rett Syndrome parents everywhere this man gave us hope.

In 2007 it was in this lab that researchers were able to demonstrate that Rett Syndrome is hypothetically reversible.

Hope.

It was and is because of the tireless research and expertise by Dr Adrian Bird and others like him that the cure is now not just a dream but is within our grasp.

I  had the honour of  briefly meeting Dr Bird a few years ago and was impressed not just by his commitment to his research but also by his dedication to the plight of our girls. His compassion to me when I told him of the loss of Livvy will always stay with me.

The winners of the above award will be announced on Monday. I pray that Dr Adrian Bird receives the recognition he deserves. I also pray that this would bring Rett research to the forefront of  the scientific community.

Whatever the outcome Dr Bird is my hero already.

 

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That old deception.

I honestly don’t understand the concept of grieving getting easier.

Or the old deception “Time is a great healer” it’s not. Time is just the measurement of hours, minutes and seconds I have lived life without my beautiful daughter.

Grieving doesn’t get easier we just get stronger or better at hiding the pain of our broken hearts.

Never for one minute think that my daughter isn’t there in my mind.

That my arms don’t ache to hold her.

That my heart will ever be healed.

I miss Livvy with every breathe that I take.

Yes the smiles are on my face and I am living my life but that’s because I know she would kick my butt if I didn’t.

I honour her legacy but that doesn’t mean I’m healed.

I miss my beautiful girl.

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Memories and monkeys

Last night I attended the dream night and Twycross Zoo a special event put on for children with disabilities and their families.

It was a fantastic night and the kids had a great time but a part of me was lost in the sadness of my memories.

Twycross zoo is a place full of shadows. Memories of Olivia are mixed up in the monkeys, the gorillas and especially the penguins.

As I walked around the zoo images of her excited face filled my mind.

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I could see her walk excitably over to the rabbits den, reaching out to touch their soft fluffy skin.

I see her laughing with joy as the penguins swam around under the water.

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Laughing out loud at the gorillas throwing their food.

I saw her everywhere and slowly it ripped open my heart.

Why is it that some days I can remember my baby with joy and peace. Yet others, the memories break apart the tattered pieces of my heart.

I often wonder if the pain will ever ease or will the tears always fill my eyes when I hear her name.

I guess the missing will never get easier.

I just have to get stronger to face it.

Exploding

Wow I cannot tell you how angry I am feeling right now.

So frustrated by the injustice in this world.

So devastated by my grief.

I am angry that children are dying through hunger when so many have so much.

I am angry that I had I bury my daughter.

So many times I can find my inner sunshine and find peace with this world.

Not today.

Today I am so cross.

I have a rage burning up inside of me.I am so lost.

Normally the peace maker today I want to start a war.

I want to battle against poverty.

I want to fight against Rett syndrome.

I want so much for things to be different.

Today I wonder how to move forward. How to let my heart open again.

It’s hard my husband says I want to save the whole world.

Maybe I’m selfish today because right now I just wish I could have saved Livvy.

Epilepsy awareness day

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Today is Epilepsy awareness day, a day where people across the world, share,educate and inform people about this condition.

I am too aware of epilepsy as it was condition that Livvy suffered from severely. A condition that played a big part in her death.

Livvy suffered from uncontrollable seizures, one time we counted over 106 in a day. We tried many medications and fought hard not to let them to control her life.

Lets just say it was an ongoing war,one which sometimes we won the battle other times we lost.

Epilepsy can be scary for both the one having the seizure and the one watching.

Epilepsy is also surrounded by myths, not that long ago sufferers were accused of being demons. Thankfully times have changed but still the need for awareness is there.

So I ask you today to click this link and learn more about this condition.

Four Years

Somedays I can reach out to a photo and almost touch her. I close my eyes and smell her sweet baby powder aroma.

She isn’t gone,

it was all a horrid dream

My baby is still here with me.

But those somedays are few, for the most part she is out of my reach.

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Like a memory balancing on the edge of a cliff waiting for that one gust of wind to allow it to fall into the abyss of forgetting.

The mind is an amazing thing but at times it goes into protection mode to allow you to survive.
To stay in that emotion filled place is impossible your sanity wouldn’t survive.
So your mind protects, defends and shields your heart.

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It’s been four years since that devestating morning.

Four years since we last witness that beautiful smile or heard that infectionious giggle.

Four years since my heart laid shattered into millions of pieces.

I’m still numb, still praying it is just a evil nightmare.

People ask the question “how do you cope?”

What a misnomer, who is coping? I’m surviving simply by grace alone.

Holding on to my girls as the breathe I need for my lungs.

Holding on to my husband as the strength I need to get out of bed each morning.

Holding on.

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My heart is in protection mode and there is will stay because I cannot live in that place.

That place of reality, that place of an untruth.

Because She isn’t gone, she is just out of reach for a while.

I hold on to the promise

I hold on to the gift of eternity.

One day I will hold her again.

One day I will be reunited

One day forever will be ours.

One day the pieces of my heart will be restored.

So I’m holding on

Holding on for that one day.

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Four years may seem like a lifetime but it will be a blink of an eye in eternity.

I miss you Miss Olivia Georgia, not a moment goes by when I don’t, but one day my precious daughter we will be together again and nothing, nothing will part us.

Love you to the moon, stars and back Liv Biv my beautiful precious girl.

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