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.

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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. 

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Trigger points

I remember reading an article about the effects of grief on the mind. How many grieving parents, loved ones could suffer from a form of PTSD.

Post traumatic stress disorder is often though to be only related to soldiers, those many brave men and women who come home battle scarred. Who have seen more than most could imagine. I for one am not disputing how terrible and awful this is. Still it is true that post traumatic stress disorder can occur for different reasons. It could happen to a victim of a crime, a witness of a traumatic event a harrowing close call , etc.

So yes I can see grief causing PTSD in fact let’s be honest I think I could venture out and say that grief could actually be at the heart of it. Grief is the extreme sadness at the loss of something and in all cases I have mentioned there is an element of loss.

Soldiers have lost part of themselves through all they have witness.

Victims of crime have lost part of themselves to the perpetrator.

Whatever has happened, who ever caused it the event has taken away who you were before it. So yes you have lost a part of you.

I know I lost a part of me when Livvy died. I changed right there and then. I could never go back to the person I was before. I had lost my daughter. How could it not have changed me? What greater loss is there than the loss of a child?

This article was trying to get people to really understand how badly one could be effected by grief. How what some would state as a mental condition is actually also a physical condition.

How we need to accept and understand our trigger points.

Personally this all made sense, I know there are places, smells even people that cause my heartbeat to race. That when I am at a certain place or I smell a certain aroma ,I see or hear certain things I am transported back into the time when I was there with Livvy.

This is often beyond just memories, take for example the local emergency unit I cannot enter it without feeling nauseous. It was there I left my beautiful girl. Even now still the siren of an ambulance makes me tremble.

Triggers aren’t always expected either they can hit you when you least expected. Like only the other day when I was at the children’s hospital.  I was sitting there minding my own when a girl passed me with blond crazy curls. My body shook and  I could have just sobbed right there and then.

Being truthful I had expected to be little upset. I had spend so long in this hospital with Livvy. I could see her in the corridors, the cafe everywhere. So maybe my body was primed, but blond curls, seriously.

I actually had to pinch myself to stop me from falling apart. Here I was trying to be brave for my foster son, losing it wasn’t an option. Well, it wasn’t until a few hours after when in the privacy of my bedroom I could let the tears fall.

I guess why I’m sharing this is because sometimes we need to understand our minds and our body’s and how one can seriously effect the other. Also I think we need to be kind to ourselves a little more.

Grief in any form is a powerful thing. Maybe you are grieving the loss of a friendship, job, marriage. Maybe like me you heart is forever broken by the loss of a child. I don’t know. Yet understanding that this loss changed you is the only way you can more forward. It’s not easy and their will always be triggers but to put it simply life goes on. Even when at times you don’t want it to.

Listen to both your mind and your body and understand that sometimes being brave isn’t an option.

be kind to yourself

True Inscription 

A few weeks ago someone asked me why my daughters gravestone didn’t say beloved daughter, sister and maybe granddaughter. As many of the others did. 

I wasn’t going to answer but the question has been turning over and over In my mind. 

The truth is what you write on your loved ones stone is a personal preference,  but for us, we simply couldn’t get a stone big enough to define who Livvy was to everyone 

Besides being a daughter, Olivia was a beloved sister, she was also a granddaughter, a niece, a god daughter, a cousin and a dear friend. Livvy was also a pupil loved by her teachers.  A patient well cared for by her doctors she was all this and so much more. One neighbour told me that she was the smile that brightened his day. 

How could one stone hold all that she was, all that she is? 

Choosing a gravestone is one of the hardest things I have ever had to do. You have limited space and a small amount of words to describe your loved one. How do you honour them in your words? So many times since the stone was laid I have questioned did we make the right choice, I think we did.

  

Still I don’t think the stone is all we have to remember or honour my sweet girl. 

Everything that we do is in hope to bring joy to her memory. The laughter we share together as a family, the arms that we open to others children. The friendships we make.

The stone is a place which marks the spot where her ashes lie.

Yet in my heart and in those who love her is the true inscription that honours my beautiful girl. 

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

 

Sometimes I have too ….

So my last post mentioned that we are holding a fund raising day for Livvy’s 16th birthday and it’s going to a be fun memory making day and a positive way to honour the memory of my beautiful girl. 

Still I need to be honest and say that right now I’m struggling. I’m trying so hard to be positive and happy that I feel like a complete fraud.

My head is spinning and my heart is just slowly breaking a fragment at a time.

Each morning I wake to the memory that my child has gone.

Every night as I close my eyes I pray for a dream. A fantasy where my heart is complete, where I get to hold her in my arms again.

I’m sorry, I know this is far from the positive way I usually try to write. Where I try to use my words to convey all Olivia taught me.

To cherish my memories.

To remember in joy.

Today I just can’t be that person.

I’m just too blooming sad.

My eyes are heavy with the tears that are still to fall. Yet my pillow is wet from the tears that have found their freedom.

My head is in such a mixed up place.

I’m angry 

I’m sad 

I’m missing 

  

I’m so angry at life for taking my daughter from me. 

I’m fuming at myself for not remembering her unrelenting spirit, her bravery, for allowing grief to take the upper hand to overwhelm me.

I’m sad, completely and utterly broken hearted. 

It really is as simple as that.

I’m missing, damn I’m missing everything about her, from her long perfect fingers to her sweet crazy curls. Her long beautiful eyelashes to her cute stubby toes. 

  

I miss my girl.

I had to write honestly today. 

Really needed to share my heart. As much as I appreciate the comments and emails I’ve received of you all  telling me how strong I am, I wanted to be truthful.

I’m not always strong 

I’m not always happy

Sometimes I can’t even pretend.

Sometimes I have to let the tears fall.

To allow the gut wrenching sobs escape from deep inside. 

I have to allow myself to be angry, to be completely pissed off at life, to rage again God screaming “Why?”

I have to allow myself to hurt, to let the pain twist deep into my stomach.

I just have to stop pretending I’m ok.

Because right now I’m not. 

It really is as simple as that.

  

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 ???

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Memories cherished as memories are made.

I have just returned from a wonderful week in beautiful Wales.

I have loved every minute of it, from the beautiful sunsets to the endless beaches.

Its been a truly wonderful week.

It was a week I so needed, time to recharge and refresh my mind.

Time to allow the words to form and the passages to write.

I am feeling stronger that ever.

My heart and mind are on the same path.

This holiday was the first time I have gone back to this area of Wales without Livvy.

I honestly believed that it was going to have to be another first without her.

Yet it wasn’t because as I have enjoyed the views, cherished the sunsets and loved the ocean I have felt Livvy everywhere.

Memories cherished as memories made.

Dogemals 2015 Newquay 2015 west wales 2015

There has to be a line they don’t cross.

I’m on holiday right now trying hard to deal with memories that are haunting me whilst creating new ones to cherish and love.

Yet even here in the middle of nowhere I cannot avoid the arguments and discussions following the interview given by Samantha Cameron about the loss of her son Ivan.  

Part of me wants to be naive right now and believe that this a mother just opening her heart about the pain and devastation she has felt from the loss of her son.

I want to remember the shared look we exchanged as we acknowledged the loss of our children. How that brief moment in Downing Street span across economic backgrounds into empathy and shared understanding.

As a grieving mother I cannot imagine a mom using this loss as a campaign tactic.

Please no.

Yet as naive as I wish to be the Cameron’s  have already proven that all experiences, all struggles are open for exploitation.

We remember David Cameron telling us he understood  how hard it is to raise a disabled child. How he will be supporting families as they struggle. Only for him to walk back over all his promises in a dramatic fashion. With cuts to services and benefits that have dramatically left people struggling to survive. 

Cut in services

Bedroom tax 

Local government budgets being slashed leading to less respite, play schemes etc etc.

And so much more. 

Even now if leaked information is to be trusted if the conservatives stay in power there will be more cuts coming to those who are disabled and those caring for them.

To be truthful I am lost for words. 

The whole situation is making my stomach ache.

I want to believe that this story, that Samantha Cameron’s interview is not part of the campaign trail.

I want to honestly believe that she is not exploiting the hearts of those like myself who grieve desperately for their child.

In fact I have to believe this. 

To accept anything else would make me question humanity.

Would make me question everything.

Surely there has to be a line a political party won’t cross?

   

I’m ok 

Sometimes I wonder if I really should say how I feel? 

Do I upset others?

Should I pretend 

Thursday was epilepsy awareness day and I posted this photo. 

  

Everyone was so sweet and understanding but worried for me.

I hate that people worry about me.

You see I’m ok, 

I am broken and grieving but I’m ok.

I know that I have so much to celebrate every morning when I awake. 

My beautiful girls 

My adorable foster son 

My annoying husband 

I am so much to be grateful for.

I got to be Livvy’s mom, no I am Livvy’s mom. 

For nine and a half years I got to hold this sweet girl in my arms. I had the opportunity to grow and learn and change.

I believe that we all have a purpose in life and I know Livvys was to educate me on what really matters. 

The moments, those special moments that cannot be brought they are simply priceless. 

Livvy taught me to be strong, to use my voice for those who cannot speak. To fight for the rights of those that society chooses to ignore. To look beyond the normal and celebrate diversity as the gift it truly is.

Livvy awoke a soul that was in hiding. In her journey I found my own.

Yes Thursday was a hard day. One where grief sucker punched me hard. The images, infographics about epilepsy took me back to a time when my heart was breaking.

Livvy suffered from severe epilepsy, some days the seizures never slowed down. Endless medications, needles , drips to find her peace. 

These memories flooded my mind. They crushed my chest until I couldn’t breathe.

But I’m ok because no matter the darkness of grief the light will always shine through. 

Always 

People are like stained – glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.

Elisabeth Kubler-Ross