Tag Archives: Rett syndrome

Living like Livvy

So it’s finally here, a years worth of work, a lifetime of memories all collated together in “Living with Livvy.”

I’m so excited to share my girlie with you all, for you to read and learn how incredibly brave and courageous she was. I’m also feeling extremely vulnerable as well. Here in these pages I have not held back, I have opened my heart and my soul and its laid bare for you all to see.

It’s not been an easy journey, i have returned to places in my mind I was trying to hide from. Revisiting some of the hardest moments I have every faced.

Yet it will be worth it, if this book educated one more person about Rett Syndrome if it raises more funds for Reverse Rett Uk it will be worth it.

So people, I am laying out my heart and soul here for you all so please, please support me in this venture. Go visit Amazon and purchase my book and help me raise much needed funds, help me help those working tirelessly to one day have Rett syndrome cured. One day have this diagnoses be one not of fear.

It can happen and it will happen,  let’s help  make it so.

Please visit Amazon and purchase the book, please let your friends, family, coworkers know about the book. Share this post on your social media, lets get “Living like Livvy” out into the hearts of minds of everyone. Lets make Livvy”s legacy really one of hope, lets do her proud.

How could I have forgotten? 

Yesterday the world just didn’t make sense. My heart and my head just couldn’t stay on the same page. I screamed, I cried. I was angry, I was sad and for a while I didn’t know why. 

Why was this day so hard? 

Then I caught the date on my phone December 3rd, 

December 3rd 

As I read that number it hid home with a gigantic bang.

How could I have not realised, how could I have not remembered? 

What kind of mother am I ?

Forgetting the day I buried my daughter. 

If I close my eyes I can recall that December day. It was cold but yet the sun lite up the winter sky, warm rays dancing on the icy floor. 

Frost sparkling like a carpet of diamonds fit for a princess, my princess. 

You know It’s not in any parenting books, or  on any websites. There are no handbooks on how to bury your child.

You wander through it all in daze, making decisions you have no desire to make. The colour of the casket, the silk that lines it. What does she wear? Oh the irony of it all, does it actually really matter? 

Yet matter it did, from the brand new cardigan that Nanna travelled to fetch to the choosing of her special toys, it all mattered, it mattered desperately.

I wanted it perfect, I needed it to be perfect.

It was all I could do, all I had left to do. 

I don’t really remember the words that was spoken or even the memories we shared.

All I really remember is the weight, the weight that consumed me, my feet feeling lead lined not wanting to move. To leave, to leave my beautiful girl behind. 

I kept on at myself “she isn’t there” “she has already gone”. Yet in that casket laid my last physical connection with my daughter and everyone is telling me I have to move, I have to leave. 

I held on tight to my youngest hands as I left that chapel, scared to let her or her sisters out of my sight. Wanting to hold on tight to them and never ever let go. 

I was empty, I was lost. 

Walking through the pleasantries, shared moments, warm hugs. 

Yet nothing was ever going to be the same again. 

I would never be whole again. 

I left part of my heart behind in December 3rd 2008 and whilst the brokenness has started to heal I will also have a missing piece. 

A beautiful blond wild haired missing piece. 

My girl, my Livvy,

Forever in my heart, forever my daughter. 

It’s October 

October is Rett Syndrome awareness month and normally each year I am sharing here and everywhere as much information as possible to raise the awareness on this syndrome. 

This year I have struggled.

Not because it isn’t as important anymore because it definitely is, but because I am angry.

I’m so angry that Rett Syndrome is still taking children from their parents. 

That Mother’s, fathers ,sisters, brothers grandparents are broken hearted.


I’m angry that my friends have to go to sleep each day just praying that their child will awake in the morning.

I’m furious that so many are in hospitals fighting infections, seizures, recovering from seizures. Families separated, families struggling. 

I’m frustrated that no matter how far the research is coming Charities are still being the ones to fight for funding to save our girls. That government funding is few and far between. 

It’s another year, another October and we had lost another. 

Another too many

Another too soon 

Another heart broken.

So yes October is Rett Syndrome awareness month but for those fighting against this syndrome October is another month in a year full of battles, heartache and fear.

I’m so angry at Rett Syndrome. 

We need a cure and we need it now. 

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 

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

  

  

Perfect sense

I was restless last night as I sat and tried to catch up with my weekly television programmes. I just couldn’t relax and I didn’t know why. 

I checked the oven, the doors and my diary but I just couldn’t work out what I was missing.

Then it hit me. 

I was listening out for Livvy, somehow I had stepped back in time to seven years ago. The Friday night ritual of Alan going out for the evening and me staying in caring for Livvy.

My mind was listening out for her noises. Her gentle snores or crazy giggles.

I was even waiting to eat with my sister and have one our much missed Friday night chats.

For those few moments I was in my before time. 

Before my heart broke.

Still I wasn’t allowed to stay for long.

Only seconds later the pain overwhelmed me. 

Like shadows slowly consuming the light.

My heart was beating so swiftly, my brain pounding against my skull.

Raw open wounds.

I don’t know why our brains do this to us? 

Flashbacks to moments we cannot hold on to.

Memories so real you can almost touch them.

I cried last night, gut wrenching sobs of missing.

Time really doesn’t ease your pain. 

I was so angry, the frustration of being able to do nothing dominated my mind.

Why,

Why,

Why?

Finally I could cry no more, my soul was empty, my tears exhausted.

I know I cannot go back, 

so many ways and so much time. 

But for that brief moment then I wasn’t broken.

For those few minutes life made sense.

Perfect sense 

In honour of Livvy

Saturday was an amazing day, we held a Livvy’s Smile Donkey Tea Party.

The sun shone for us, the donkeys behaved and memories were made.

DSC_0090

I had a truly wonderful time.

I got to catch up with old friends and make some new.

I got to listen to laughter as it filled the air.

I got to watch children cover themselves with chocolate and cream as they ate their cakes.

Donkey rides, cart rides and so much more.

Seriously it was awesome.

Yet as I sat at home editing the photos from the day my tears began to fall.

My heart just ached for the missing piece of my puzzle.

Whilst I was blessed with some amazing hugs from some truly incredible children my heart yearned for my little Tinkerbell.

Birmingham Donkey Sanctuary holds a special place in my heart.

Each corner is filled with the echo of my Olivia.

Those first steps she took defying the Drs.

The giggles as she rode her favourite donkey.

alvis livvy

The dirty looks she gave Amber when told to sit up straight.

So many moments, so many memories.

 

I was asked why we started Livvy’s Smile and why I hold events that bring me pain?

It is simple really we started Livvy’s Smile because we are so grateful.

So thankful for the wonderful memories we have stored from Livvy.

Memories that truly get us through the darkness and we just want to give that light to other families.

On Saturday we created those special memories full of chocolate eclairs and cool moms.

Memories that will give us hope through the hard times.

Why do I it when it causes me pain? 

Because I can and because I have to.

I was blessed to be Livvy’s mom, to get to call this amazing girlie my daughter.

Livvy changed my life. 

The realisation that we didn’t have forever taught me to live in the here and now.

To live a life full of laughter and love.

 

So yes hosting these events will always be bittersweet.

I’m sure I will always return home and cry for the missing piece of my heart.

But I will never stop working hard to create memories because each moment, each memory is in honour of my beautiful daughter.

Every smile I see brings her closer.

 

Yes, I know my heart will always ache,

Grief is relentless.

Like a snake it slowly twists around your heart until you cannot breathe.

Your body craves for one more breathe, one more moment.

So as the tears fall I know they do so in honour.

Each teardrop is formed in everlasting love.

Livvy is part of who I am and who I always will be.

Livvy’s Smile is testimony to eternal love. 

IMG_0004livvy2

Thank you doesn’t seem enough.

I’m not sure how I am feeling right now, yesterday was a whirlwind of emotions. I laughed, I cried and I laughed some more.

There isn’t really a guideline on how to feel I guess, no instruction book on how to celebrate birthdays of those that never reached them.

I know some think i’m strange, that to celebrate the birthday of a child that has passed is wrong or odd. That’s ok, everyone is completely entitled to their own opinion and the fact is grief is so unique. Nobody feels the same, everyone has their own journey through it or as I believe ‘with it’.

I’m struggling to find words to describe yesterday it was one of the hardest days of my life but also one of the most blessed.

From the moment the clock struck the new day the messages started to flood in.

Birthday wishes for my beautiful girl.

Messages, pictures and names drawn in the sand my girl was remembered.

Friends all over the world wishing my girl a Happy 16th.

Yesterday was a blur of family, friendship and cake, it was a truly special  day.

It is only now as I sit back and reflect that I really realise how completely amazing it was.

I could not thank people enough for what they gave me yesterday. After many nights of wondering and worrying that my Livvy would be forgotten my heart was swollen by the love I felt and the amount of people who remembered her day.

The fund-raising event for the charity formed in her memory Livvy’s Smile was a great success I don’t yet have a final total raised but I know its in the hundreds which is so wonderful.

Besides the donations I also want to say thank you to those who ate cake with their friends and family in honour of this day. I know I harp on a lot about this but memories are the greatest gift we can give ourselves and I am so blessed that you all made new special ones yesterday in honour of my girl.

So yes I’m not sure how I am really feeling today but what I do know is that my heart is full. My girl was honoured in such a beautiful way and for that I will always be grateful.

Thank you doesn’t seem enough but THANK YOU.

Livvy's banner

 

I need you to eat cake.

I have something to share with you all today, its information on a fundraising event I really would love you to be part off.

Now before you turn off thinking oh no she is after my money please just read on a little more.

On May 5th I’m asking you to eat cake.

That’s right you ‘EAT CAKE’ how cool is this?

16thbirthday

On May 5th 2015 my beautiful daughter should be celebrating her sixteenth birthday, her ‘sweet sixteen’ and to be honest I’m rather peeved thats she isn’t.

In fact as I write this I’m tumbling through the crappy vortex of grief, I’m hurting, I’m missing and I’m damned angry at life.

Yet rather than allow myself to fall into the abyss I decided many weeks ago to turn this painful day into the celebration Livvy would like, the birthday Livvy deserves.

So here is the bit where you come in.

I have created a Facebook event called Livvy’s 16th birthday fundraising celebration and the hashtag #Happy16thLivvy

What I’m asking you do is this, wherever you are at home at work with friends or family come together and eat cake.

Celebrating my beautiful girl by making the memories that we all hold dear.

Then each, or all together pledge £16 to the charity formed in Livvy’s memory, Livvy’s Smile.

This can come in the form of a cheque to Livvy’s Smile or via Paypal, Livvyssmile@hotmail.co.uk

Also I want photographic evidence  ha ha.

Upload to any social media sites using the hashtag #Happy16thLivvy  maybe if you can tag me as well @livvyssmile on twitter or upload to the event page also on Facebook. I so want to see you smiles and you making memories as I cherish those I have of my beautiful girlie.

Every penny raised from this event will go towards creating memory making days for children with disabilities.

So are you with me ???

16thbirthdayinfographic 600