My Livvy time

It happens out of the blue.

One moment I’m fine the next I’m curled up in a ball sobbing my heart out.

Grief is a crazy journey that causes me to feel so lost and disorientated at times.

 

It’s been four and half years yet at times it feels more like four and a half days.

 

I cry out in my dreams as I reach out to touch my beautiful girl and slowly she disappears just out of my grasp.

 

I feel angry, the emptiness that can only be filled by her is raging in my soul.

 

I’m shouting why to the heavens.

 

Why my daughter?

 

Why my livvy ?

 

People tell me I need to move forward.

 

How is that possible when a part of you is in the past?

 

It’s a strange concept

 

I understand life goes on but it feels as if a part of me will be left in 2008 forever.

 

My pillow is wet from tears,

 

The raw aching sobs smothered by the feathers.

 

It hurts

 

That’s all I have at times.

 

It hurts 

 

I have to allow the pain to wash over me.

 

Allow myself to grieve.

 

If I didn’t I would explode

 

Like a ballon being overfilled with gas.

 

You have to loose it otherwise it will go pop.

 

I know I have eternity but right now, right at this moment I am homesick.

 

I close my eyes and allow myself to see her.

 

Allow myself the memories.

 

I watch her YouTube video on silent, not wanting to wake anyone.

 

Not wanting to explain or share.

 

This my time

 

This is me time

 

My Livvy time.

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Making changes

For as long as my mind and my heart knows I have been responsible, but for longer than that I believe I have had a desire to be responsible.

To be able to fix, change, make things right.

But sometimes you can’t and its this knowledge this acceptance I am finally allowing myself this year.

You see if I don’t I will crumble.

It’s like I’ve been using my reserves, the last of my strength for so long that I simply have nothing left.

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My health has paid a hefty price.

My heart a lot more.

So 2013 has been a learning curve for me.

I cannot be all things to everyone, it simply isn’t possible.

This doesn’t mean I stop loving people or wishing them well. Of course I do but I have to put certain things first, certain people first.

My beautiful daughters, some may look at them and see happy healthy young ladies and yes they are all that but scratch a little below the surface and you will see three incredible young souls who have faced more heartbreak in their young lives that many will every see in a lifetime.

You will see three overly empathic children who feel the burden of pain for the outside world. Why because they understand, they relate more than they ever should.

You will also see three young ladies in the journey from childhood to adulthood with all the stresses and pain that journey alone can bring.

I want to be their strength, their place of comfort.

My marriage, yes I am blessed with a great guy but together we have been to hell and back. Both so very heartbroken and not knowing how to voice that pain. We have had to take time to remind ourselves of happiness and work on making it happen again.

I want to be the wife this wonderful frustrating man deserves.

My health , stress plays an evil game both on the mind and the body. At times my body feels so battle weary. The chronic pain drives me slowly insane. I need to focus on letting go of the stress and that overload of adrenaline that causes this heart of mine to flutter.

I want to be able to be healthy enough to enjoy life.

My job, I use these words tenderly as my job is maybe one of the best in the world. I have been given the change to love upon a child. To help make a difference. It isn’t easy anyone who has every cared for a special needs child could vouch for this, but it is so very worth it.

I want to keep making that difference.

Myself, for a long time this was where the shortfall would happen. Never giving myself time, never believing in who I am.

This needs to change, to be all of the above I need to love myself more.

I need to allow myself to live my dreams.

I need allow myself time.

So yes it’s been a season of change, but it’s been good. I am finally on the journey to self acceptance.

To look into who I am and say “you know what you are ok”.

To receive a compliment and say “thank you” without the need to lower my head and turn away.

But to continue in this journey I have to make changes, to prioritise.

I remember back in school a teacher telling me that “I couldn’t be everything to everyone”

She was right, though at the time I disagreed I just believed I needed to try harder.

Trying harder isn’t always the answer.

My life lesson.

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Today my daughter should be 14.

Today you would have been 14.

We would be all gathered together as a family to celebrate your special day. Spoiling you with attention and of course lots of gifts.

Yet we can’t.

Instead there will be an empty place at the table and all that we have to hold on to are our memories.

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Each with a moment,

a memory, a gift that we cherish.

I confess I’m angry that I can only visit your grave today.

That I cannot hold your hand or stroke your beautiful blond hair. To twist one of those cute little curls around my finger.

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To hold you close and share those light butterfly kisses.

It hurts,

I want to sing happy birthday to you and get to watch your eyes shine with laughter.

I want to watch you rip off the paper from your presents with impatience and excitement.

14 years old

I often wonder what you look like now.

How have you aged?

Is your hair still as curly as it was or has in grown down long and straight.

I wonder what you would have enjoyed if you were here, would you be a one direction fan? knowing you It would more likely be Paramour or the script. You loved the beat of rock music. Guns n roses were your favourite.

I can imagine you in band tops joining me in the love of anything gothic.

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How I wish , how I wonder.

Its breaking my heart today, you should be here blowing out your candles. Trying to grab the biggest piece of cake. Loving all the attention this special day brings.

I know you would be cross at my sadness,

But my beautiful girl I miss you so much.

I’m angry that I have only had 9 of the 14 years.

Losing you is a pain like no other, a knife in my heart forever being twisted deeper.

I take your balloons, your flowers to your grave and the knife goes deeper.

But I think of you dear Olivia, I remember your courage your true audacity to never give in.

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I close my eyes and hear you whisper on the wind.

I’m here mom, I’m playing with the balloons and smelling the flowers.

I’m here mom, by your side everyday.

Dry those tears mom, listen to my laughter as it carries on the breeze,

Feel my love wrap around you in the warmth of the sun.

I’m not gone, I’m just out of sight for a while.

Hold on mom, please hold on to my spirit and my strength.

I close my eyes

I feel you in the sun and I wrap myself up in the breeze.

You are my heart and as long as it beats you are with me.

I miss you sweet Olivia.

Happy heavenly birthday

14 today,

I love you to the moon stars and back again xxxxx

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It doesn’t have to be inevitable

The other night I sat and watched the film “Rabbit Hole” starring Nicole Kidman and Aaron Eckhart. I wasn’t too sure why I wanted to watch a film dealing with the emotions around the loss of a child. To be honest its a little to close to home. I guess it was just curiosity, wondering how others had faced the heartbreak, coped with the pain. (yes i know its just a film).

The film was extremely well acted and at times I found myself walking through the emotions with the cast.

The desire to change everything.

The need for space.

The anger,

the raw unadulterated anger.

The emptiness inside.

“The only way out is through

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There is a moment in the film when in a bereavement support group another parent speaks about the separation of her marriage and that it was “Inevitable”. The grief books often state that “many or most marriages cannot survive the death of a child”.

This statement didn’t surprise me, all the research I had done all the self help books I had read all say the same thing.

It’s inevitable.

Grief is such a individual journey, everyone travels the road in different ways and at different times. Even when you lose the child together your grief is unique to you.

I experienced this in my own marriage,my husband deals with things quietly and internally. This at times has left me feeling alone and rejected, not the way he ever meant for me to feel. But the way it did, alone and hurting.

Exhaustion also is such a big part in all, the weight of the pain can be so heavy that even getting out of bed requires effort. Let alone finding the energy to be there for others.

Circumstances too play a major role, many times bereaved parents find themselves having to go back into work not long after their loss to an environment that requires them to be a professional not a grieving mother or father.

Its not easy and I know that, even now four years into this journey it still isn’t easy.

I also know I am one of the lucky ones, I had a husband who tried so hard to make it as right as it could be. Tried to understand, showed me compassion without no bounds even when he was struggling too. He sat and listened as I tried to digest the reality of our loss. Held me tight when the reality finally hit home and my heart shattered into millions of pieces.

He held me then.

He holds me now.

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Marriage is hard and it requires more work than you possibly could imagine. It didn’t come with instructions. So when a marriage faces such a loss and the two people in the union suffer the utmost heartbreak its hard to keep it together. It is simply easier to walk your grief journey alone. It may seem selfish but its about survival.

We struggled, we still struggle. There is a hole in each of our hearts that can never be filled. We lost our beautiful daughter and nothing can fix that.

Yet as the catchline off the film states “The only way out is through “.

In life we all face things we never could of imagined, pain we don’t think we can survive. Whatever, whenever situations arise the truth is simply “The only way out is through ”
You cannot hide, you cannot go around it. Believe me I’ve tried.

Through it is the only way.

For my marriage talking was our saviour,

Ephesians 4.26 “do not let the sun go down on your anger,” became our daily scripture.

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There were so many times I was angry at my husband and he was angry at me and we were both so angry at the world. But we worked hard to communicate. Worked hard to cherish each other.

We had lost so much, losing each other wasn’t an option.

Separation doesn’t have to be inevitable.

Moving past first impressions.

When people look at me what to they see?

A woman who is rather overweight?

What they don’t see is a woman with a chronic debilitating pain condition which makes it near impossible for her to exercise. Also do they see a lady on pain medication that increases weight gain.

No !

Because on first glance that information isn’t there.

The way I look doesn’t tell you my story.

How often do we make judgements on those first impressions?

Yet those first moments can only tell us so much. The information we learn is limited in both depth and perception.

Ok i will accept in certain situations first impressions count, job interviews for a start. I mean you wouldn’t turn up to a business job in jeans and T-shirt. But let’s be honest a suit and tie doesn’t guarantee that you are capable of doing the job.

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So many times people make judgements on those first impressions, I know I have. Yet some of the worlds greatest minds or biggest hearts have been eccentric and misunderstood.

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Also someone of the worlds evilest people have been described as clean cut and homely.

The outside doesn’t always reflect what is within.

With the art of conversation being whittled down to 140 characters I think we need to take the time to get a closer look.

To take the time to really get to know someone by real conversations not just reading their Facebook updates.

Time and patience could bring you great rewards.

Maybe it’s time to meet for that coffee, to share a meal or maybe just an email
or two.

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But in a world that’s becoming more superficial everyday i believe we need search out the genuine, to find the true.

I think we owe it to ourselves and each other.

Each friend represents a world in us, a world not born until they arrive, and it is only by this meeting that a new world is born.

Anais Nin

Changing my story

Sometimes I get tired of the fighting.

Fighting to just be.

Dealing with the pain that breeds inside of me.

The false smile has to slip sometimes.

You are so brave is easily switched to you are falling.

I didn’t ask for this life and at times Im just so angry that I cannot breathe.

Then I feel regret for the anger.

I know I am blessed but sometimes its easier to lament that to give glory.

To give praise when the pain is deep.

To trust when the nightmare lives on.

To seek when all you want to do is hide.

To look to the heavens when the ground is closer.

The story still gets written and jumping a few pages ahead will not change the plot line.

Forwarding the film does not change the ending.

Regardless of the journey the end will be the same.

I crave for a first class trip with a champagne breakfast

A five star room with chocolates on the sheets.

I want to leave behind the crowded waiting rooms and late arrivals.

I want my journey to be as I planned.

As I dreamed as a young girl.

The life I had promised myself.

Faith is taking the first step even when you don’t see the whole staircase.

Martin Luther King, Jr.

 

I walk in faith.

I’m changing my story.

Unrepairable

Losing a child breaks you in a way that can never be repaired.

You hold yourself together by pieces and patches.

Stress and fear becomes your companion. Imagine if your worse fear can come true everything else is a possibility.

People tell me to not to stress to trust but I did once before and I lost my daughter.

It’s so hard to just believe. To allow myself to let go of fear.

I try, I promise I try but sometimes grief is the only emotion I can fight so anxiety, fear and panic slip in under the radar.

I make myself promise
I’m not going to care as much
I’m going to switch off more
Take a step back from situations that really don’t effect me.

But I don’t, my heart engages before my head.

Life is complicated full of ups and downs and some how I need to learn how to go with the flow.

Any ideas, any suggestions all are welcome, I need 2013 to be the year I take control of my heart.

Light overthrowing the darkness

The funeral yesterday was beautiful. A fitting celebration of a beautiful life.

Somehow I managed to keep it together, of course I cried but I managed to hold back those gut wrenching sobs until I was stood in privacy at Livvy’s grave.

This place of finality brings me so much comfort at times it’s my place of remembrance.

Though to be honest it was at the gathering afterwards that I really struggled. As I sat there drinking my coffee I was struck again with the thought “the world moves on”.

As I watched my dear friends move between the mourners I realised that their reality, their normal has changed.

Nothing will ever be as it was.

I write that as if I’m in a place of acceptance but that is so not true.
Four years on I still haven’t found my new normal, I don’t think I ever will.

Normal belonged with our daughters, I think they took it to heaven with them.

I was taken back to four years ago when I was at Livvy’s funeral and how I was wishing it to never end.

The moment that I left that place I was leaving my daughter behind. It was the finality of final.

After the gathering we returned to our home so full of her things but so empty of her.

Our life had been filled with the caring, the loving of this beautiful incredible special needs child, now the empty hours seemed endless before me.

My girls will joke this was the time I started ironing their knickers but in all honesty they speak the truth. I tried earnestly to fill those empty hours.

I’m told by my children that at times I was suffocating, that I needed to be with them every moment of the day. They understood but they were young and had a life to live, school to attend, friends to play with.

I used to find myself caught up in unexpected rage after hearing a parent speak harshly to a child in the street. The “why did I ever have you” comment spoken not in truth but frustration tore at my soul. Alan dragging me away when I just wanted to scream “every moment is precious” “never let your child feel unloved”.

How does the world move on without my beautiful daughter.

I wanted to demand that everyone stood still and allow time just to freeze right there.

Of course that wasn’t going to happen.

Platitudes were given in love but were driving me insane.

“No more suffering”
“No more pain”

As if suffering and pain was all Livvy’s life amounted too. What about

“No more laughing”
“No more dancing”
“No more mischevious behaviour”

Livvy was so much more that what her syndrome was, pray tell me people could see that.

Then the anger left me and the darkness came it was all I could see when somewhere in the corner there was a ray of light.

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Faith

The more I read the words of the bible the more my heart was filled with something I had never dared dream of again.

Hope

One day I would hold my beautiful girl again.

That this life isn’t the one we should hold on to.

Eternity is ours.

“So now faith, hope, and love abide, these three; but the greatest of these is love.” 1 Corinthians 13:13 ESV

Love is eternal

Not in a great place

Compassion, empathy two things that can bring comfort to many.

Yet when you know the pain people are facing it can also bring a reality you don’t want to face closer.

Knowing that people you love are hurting is hard to face.

The pain of loss is like no other and I pray I could bring some comfort but for this there is none.

I just cannot get to sleep tonight, my mind is whirring. Later on today I am attending a funeral. The laying to rest of a beautiful young lady who lost her battle to Rett Syndrome, only 13, too young to die.

I have to stand and watch the pain on the faces of her devastated parents. To watch them try to hold it together.

Is it selfish to wish I didn’t know their pain, to not understand the brokenness of their heart.

It was only four years and six days ago I was those parents, staring in disbelief at the wooden box holding my baby girl.
Praying I would wake up from this nightmare.

I didn’t

I haven’t

And I’m struggling now to understand this life and this crazy world.

Why are young beautiful girls losing their battles?

Rett Syndrome sucks.

My head is so full of questions and my heart is overflowing with anger.

Its not a great place to be.

But nothing makes sense anymore.

I am so lost right now.

Will I ever find my way back?

Do I want to find my way back?

Right now I just don’t know.

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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