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

Forgotten photograph

Last night I fell apart.

I truly just sobbed and sobbed.

I cried until I couldn’t breathe.

I was angry

I was broken.

I found myself screaming at God

The crazy thing is that nothing had happened.

Well nothing major.

I just came across a forgotten photograph of Livvy.

One that I hadn’t seen in such a long time.

You see I had uploaded it to a photo printing site that I don’t use that often, but a discount email spurred me into a visit.

As I scrolled through photos of my foster son there right at the beginning was a few that I must have uploaded over 7 years ago.

There was her sweet beautiful face.

Just looking out at me.

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For just one precious moment she felt so close.

Then reality struck and I realised she was completely out of reach.

I catch my breathe as I write that. The physical pain of her missing tightens like a noose on my heart.

Grief is a funny old journey. No thats not the truth there is nothing funny about it.

It destroys you, it slowly epps away the person you were before the loss and leaves you with a shadow of what was once.

Your heart is never the same.

I needed to cry last night.

I needed to allow myself the freedom to grieve.

To drop the facade and allow myself to feel.

Being brave is hard.

Being strong is exhausting.

You cannot live in the world of pretence forever.

I’m not ok.

I never will be.

My heart is broken.

My soul aches for my daughter.

My arms are empty.

A part of me is forever missing.

The best Christmas gift that wasn’t for me.

I have been so lucky this Christmas with some amazing presents. Yet my favourite gift was not one of mine, but it was one that really blessed my heart.

You see every Christmas my aunt and uncle sends gift envelopes for my girls. It is something they and I are completely grateful for. Also whichever foster child joins our family will also find themselves with a envelope with their name on Christmas morning.

This is so lovely and so appreciated,
Yet it’s isn’t these envelopes that really warm my heart.

It is the one that has still carried on coming every christmas for Livvy.

The sweet envelope with my beautiful daughters name is what makes my Christmas Day.

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Knowing that she isn’t forgotten.

It’s a just little envelope that holds so much more than the money inside it.

More than the flowers the money will buy.

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Losing a child is unbearable the shock comes first but then you are left with a lingering agonising pain.

It’s the pain of watching people move on with their lives that twists deep into your heart.

They move on without her.

I cannot bear the thought that Livvy will be forgotten and yes it’s something that causes such a panic within my heart.

So when this envelope comes along I am so grateful that my aunt and uncle are just taking a little time to say, “she isn’t forgotten”.

That for me is the best present ever.

Thank you Auntie & Uncle

Being thankful

Over on Facebook I have been seeing a lot of posts on thankfulness.

Mainly ones from my USA friends as they give thanks for things and people before their holiday of thanksgiving.

It has really set me thinking about giving thanks and especially this week as I face the anniversary of Olivia’s death.

I want to give thanks for those that were there when I really needed them..

Who were the light in my darkness.

Thank you …,

To my husband Alan for just holding me in your arms until I cried myself to sleep. To dealing with my pain on top of your own, for loving me unconditionally, through the anger and the sorrow. For still being there and for giving me the freedom to still now fall apart at times.

To my girls for being the reason I had to get up each day. For remembering your sister with laughter and for being so damn brave. You are my constant inspiration and your sister would be so proud of you all.

To my dad for the endless phone calls where you just listened. When I raged against the world and questioned why. Thank you for not trying to explain it but just being there. Even though your heart was broken too you put me first constantly.

My mom, siblings, step mum,in laws etc all of you walked this pathway with us. There was no answers to be given but there was so much love and I am truly grateful.

My friends,for just being there. Ange you just sat by my side when i couldn’t speak. Just holding my hand. For talking books and endless crap just to keep me sane thank you.

My Facebook friends, Rett mums and special needs mums thank you for just reaching out over the computer to just remind me that I wasn’t on my own. Flowers you sent to brighten my day, messages, emails all gave me strength.

Kelly you keep Livvy’s alive in ways I will always be grateful for. Not hiding her away but honouring her memory. I cannot tell you how much this has meant to me. Seriously there isn’t words. To your dear family too for just reaching out and loving on me.

For Compassionate friends the forum which was always open. Moms, dads who really understood the journey I was walking. For not promising it will be ok but reassuring me I would find my new normal. For still celebrating our children now . Never lost just missing. You have become some of my dearest friends. I so need to do a gathering soon.

To those who have supported Livvy’s Smile and all my Rett Syndrome awareness work your support gives me such strength and I give thanks.

To my blog readers for your emails, your comments encouraging me to keep writing to keep sharing my heart.

Thank you.

I have so much to be grateful for and whilst here in the UK we don’t celebrate thanksgiving I want to. I want to say thank you to those mentioned here and so many more for being by my side as I have walked through the pain of the last six years.

For your encouragement, your support and your friendship and love.

Losing Livvy changed me in ways I never could of imagined. I have learned the true value of life.

It’s not about money or fancy things it’s about love and friendship. The relationships we have with others.

I didn’t know what the new pathway would hold but I knew who would be there to walk alongside me.

For this I am truly thankful.

There is only one stage for me.

September has begun and i am simply a mess.

 

It could be holiday blues.

 

It could be just plain exhaustion.

 

Or it could be that I’m just so very p*ssed off.

 

Yesterday was the first day of the new school year and it should of been the day that Livvy started Year 11.

 

Its crazy to think my baby would have been 16 next year, when the truth is she didn’t get to see double figures.

 

I don’t know how to feel right now.

 

Anger

 

Grief

 

Numb

 

Its a variety of emotions that seem to move with the wind.

 

I close my eyes and I try so hard to imagine Livvy as a teenager.

 

What would she be like?

 

Would she still be the little rock chick, dancing her heart out to Guns n roses.

 

Or would she have continued down the road she started with her love of skulls and all things gothic.

 

I imagine her sitting in her chair in Dr Martens, or maybe Converse.

 

I just don’t know.

 

 

 

It’s breaking me apart right now.

 

The not knowing what she would be like.

 

The not getting the chance to make those memories.

 

I was robbed of my baby girl.

 

She was robbed of her future

 

And its just not blooming fair.

 

Denial

 

Anger

 

Bargaining

 

Depression

 

Acceptance

 

The five stages of grief,

 

What a joke.

 

Stages are something you work through.

 

You finish one and then move on.

 

I’m not moving on.

 

I miss my daughter so much.

 

For me there is only one stage of grief

 

Simply heartbroken.

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Scared she will be forgotten

I have a confession to share.

This week I have found myself really scared

Scared people will forget Olivia.

That as the years pass her beautiful smile is fading from people’s memories.

The fear actually causes my heart to race and my chest to tighten.

She cannot be forgotten

She cannot be allowed to slip from your minds.

You see my girl was amazing.

Yes I know all moms will say this about their children but Livvy she was truly inspirational.

Her courage

Her wit

Her strength 

Her life 

Changed every bit of me.

She taught me the value of the moment.

How precious the here and now is.

I learned to listen,

Really listen to the world around me.

The whisper of the wind

The harmony of a bird song.

She taught me freedom

To dance like no one is watching

To sing tuneless but with heart.

She taught me about love.

True unrelenting love.

The release of your whole soul to another.

Each day was a gift wrapped up in a lesson.

A lesson of love, 

A lesson of compassion

My girl she kept on giving when all had given up.

Kept on dreaming when others had awoke.

How can she be forgotten?

Please don’t forget my beautiful daughter.

Hold her in your hearts like the gift she is.

Dance in the rain and under the rainbow she will send.

Hug each other tight with all your hearts.

Make those memories each and everyday.

Be compassionate

Be loyal 

Be mischievous 

Live life in love 

Just like Livvy did.

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