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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I’m not staying quiet

Are you a parent?

Do you think about your child everyday?

Do you rejoice in their achievements?

Share their antics with friends?

I will go out on a limb here and hazard a guess that the answer to the above questions is a YES.

I’m a parent, I have four beautiful girls. I dote on them all, they each have a unique personally that I simply adore.

Each have their own goals and have their own achievements.

I cherish every moment of them and yes at times I have wanted to literally strangle them.

Hey I’m human

Hey I’m a parent.

Yet for me there is one difference one of my children is in heaven. For the last four years death has separated me from my baby.

Yet she still is my daughter.

She is still her sisters sister.

Granddaughter, niece, cousin, friend.

Her death doesn’t just remove her from our life.

So I struggle to understand why people expect me to stay quiet.

To not mention my beautiful girl.

To not comment about her.

To not state how much my heart aches without her.

It’s as if people expect me to forget.

I love life, I cherish every moment of it. I love watching my girls grow, change and experience things.

I am moving forward but moving on doesn’t mean I have to forget.

I can remember her cheeky smile, her soft hands and her strong left hook.

I can remember her infectious giggle that would send us all into laughter.

I can remember, I can share.

She is still my daughter.

I’m not being held back, I’m moving forward with Livvy in my heart in my memory.

Of course at times the missing overwhelms, yet even in the pain I embrace life.

Life is a gift each day is a new present waiting to be unwrapped.

Yet just like every parent will tell you the moment you have your child. That child holds a piece of your heart wherever they are. Heaven or earth my girls are my heart and they always will be.

So don’t ask to me to stay quiet about Livvy. She is part of my life and always will be.

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.

I don’t want to write today

I don’t want to write today.

I don’t want to pretend everything is ok.

Life isn’t fair and though I’m strong in faith I’m just exhausted by grief.

A dear friend lost her daughter to the evil that is Rett syndrome this weekend.

This daughter was so special to us, so very special to my daughter Livvy.

The only comfort I have is that friends are together again.

May God surround this family in his ever loving arms. Hold them and comfort them.

The promise of eternity is my survival today.

I’m one proud mommy

One of my main worries after losing Livvy was the way her death affected my other children. They were growing up so quick facing the teenage years, senior school etc etc.

My eldest Kennedy found concentrating at school really hard her emotions at times were overwhelming for her. This let to a lot of panic attacks and nervous eczema.

So today there is not a prouder mommy in the world. Kennedy has just picked up her GCSE results and has done amazing.

I am so delighted in these results but I mostly I’m so proud of her determination to overcome and succeed.

I love my girly so much.

Well done Kennedy you have your mom and dad so very very proud.

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We need a cure now

Sometimes I just want to scream, everywhere I go I find my memories. I cannot hide, should I want to hide?

I feel emotions from every angle, grief, anger, loss, fear.

Is it wrong to want to hide?

Facebook is full of the devastating news that another girl has lost their life to Rett syndrome in fact I found out that it’s another two.

Heaven is filling up too quick with our angels. It’s not right, it’s not fair. The cure needs to be found now!

Of course when I hear this tragic news my heart goes straight to the family. My heart aches as I know the pain they are facing, my heart still bear’s the burden of this pain.

Burden of pain, is it wrong to say that?

To be so exhausted of my emotions to be complete depleted by the endless pain.

I hate Rett syndrome with all my heart. It’s evil, it’s wicked. It’s the reason I cry myself to sleep most nights, it’s the reason I have to close my eyes and dream of holding my daughter again.

Please let’s have this cure now. Let my heart be filled with hope for my friends and their daughters.

Let my exhaustion become their exhilaration.

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I’m doing it again!

I’ve done it again.

Closed down the hatch and bolted it tight.

Pulled away when others came close.

Why do I do this when my heart craves for friendship

When my soul desires to belong.

I’m my own worst enemy, listening to the voice of evil in my head

They won’t like you , why bother

You will never be good enough, so why try

You don’t belong, so why join.

I feel like that child again, standing on the side of the school playground watching the children play.

The only teen not to visit the new
cool disco

Why do I allow myself to feel this way?

Why do I accept the voices in my head when they tell me I’m not worthy.

Jesus tells me I wonderfully made

Yet I listen to the lies the enemy is preaching at me

Anxiety is winning the battle within my heart.

I can feel the fear as it starts to slowly suffocate me.

It’s my asthma I pretend, but I know
It’s not.

It’s panic and fear all overwhelming me

How can I find the strength to stand strong.

I cannot

But I turn to the one that can

When I am afraid, I will trust in you.
(Psalms 56:3, NIV)

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Written in the sand.

Sometimes I find myself wondering if the world has moved too far forward.

 If Livvy is a part of the past that is being forgotten.

 

Will she become one of the distant memories that only hang on in the edge of your mind.

 

I watch my girls living life and wonder if they remember their mischevious little sister and how life was when she was with us.

 

Today was one of those moments as I sat on the beach watching the world go by, just wondering.

 

Then my daughter called me over and showed me this.

 

How foolish am I?

Livvy will never be forgotten while there is breathe left in ones that love her.

 

Time passes,

Memories fade

but love is eternal

 

Forgotten

OH my dear beautiful girl I have forgotten….

 

What you taught us on those endless hospital nights, when the wards seemed empty and all I could hear was the infernal beeping of those annoying but lifesaving machines and the gentle beating of your precious heart.

 

I’ve forgotten what I saw in those doctors eyes when the words they spoke were taking away all our tomorrows.

 

I’ve forgotten 

 

I close my eyes and try to remember, to just hear those sweet infectious giggles once again.

 

But I’ve forgotten.

 

Dad and I are tumbling head first into the world of forgetfulness, losing hold of the life that you taught us to live.

 

Forgetting to search for the gift that each day brings, the moment when that forever memory can be made.

 

I’ve forgotten 

 

We’ve forgotten 

 

Letting ourselves fall into the endless bog of circumstance and reality.

 

Forgetting to dance under the rainbows and search for leprechauns with a pots of gold.

 

Forgotten.

 

Those days of random dances in the middle of a store because the song we loved was playing over the radio.

 

To smile at people in the street as you chuckled away from your wheelchair.

 

To hug each other so tight until we cannot breathe anymore.

 

We’ve forgotten 

 

 

 

When was the last time I laid back and watched the clouds

 

When was the last time I tickled your sisters until they cried.

 

My baby, my precious baby, I’ve forgotten.

 

I’ve let the anger of loss slowly eat away at my heart.

 

Getting colder and colder until the icicles formed.

 

Ive forgotten 

 

To let the tears just fall and let the heart wrenching sobs escape my soul.

 

 

I need to breathe again

 

I need to trust again.

 

 

But I’ve forgotten 

 

We knew we didn’t have forever but we had today and that was enough, but now yesterday seems so far away and this moment isn’t enough.

 

I want to dance in the rain again

 

Catch fairies as they fly through the air

 

I want to breathe so deep and not feel the ache thats buried there 

 

I haven’t forgotten

 

 

How can things be the same?

 

How can the world keep on turning and why wont it stop and let me off?

 

The newspapers keep on printing and the radio keeps on playing.

 

 

You taught us all so much and in those nine precious years you gave a lifetime full of love.

 

Joy was a gift that was available to us, all we just had to do was unwrap this present they call life.

 

Whose knows what tomorrow may bring, I certainly don’t

 

But I can live for today.

 

I can tell everyone I meet how special they are

 

How wonderful it is that I’ve met them

 

That they are not forgotten

 

Just by being in your presence people felt love, your smile could make someone’s day.

 

I want to tell people to embrace the moment, not in a morbid you may die tomorrow way, but in a hey today is so beautiful way.

 

Our motto for you was Never say never

 

You defied the odds until our luck ran out

 

But you are the gift that keeps on giving

 

You are the heart that now beats in others.

 

Your love lives on in me, you dad, your sisters and anyone who knew and loved you.

 

 

 

 

I miss my old life so desperately 

 

But I will not forget what you taught me

 

Each day is a gift a new beginning 

 

So I’m going to start unwrapping the presents that I’ve been given

 

Stop wishing the days away

 

Stop holding on to the past

 

I’ve not forgotten 

 

 

 

How can I forget,

 

 

You are right here in my heart reminding me.

In my heart.

Teenager in Heaven

On Saturday my beautiful angel would have turned thirteen. 

 

Thirteen a right of passage into the world of the teenager.

 

I wonder what she would have been like at thirteen, would she have been full of hormones and drama like her sisters.

 

How would she have aged, would those adorable blond curls start to straighten, her blue eyes widen.

Im not sure how to feel, as we put up her cards and her special balloon.

 

I’m sad and angry all in one moment and so very lost.

 

We had a family meal Alan, I and the girls, just  sitting and sharing our memories, so sweet, so bitter sweet.

 

We had balloons to release with messages to heaven. Ribbons to tie on the tree at her special place.

 

So many flowers adorn her grave, so much love, so much pain.

 

 

How do we go on?  It’s a question I wonder everyday

 

One step at a time.

 

One day at a time. 

 

Time is supposed to heal, I’m not sure that’s the truth. I feel that maybe in time you learn to  the handle the pain easier, develop a higher threshold. 

 

Livvy was an amazing young lady who blessed our life for nine and a half years. It wasn’t enough. Is it ever enough?

 

My heart aches to hold my sweet daughter once again. I hope dear Livvy you are causing chaos in heaven. May my grandparents be holding you close and have brushed  your sweet cheeks with birthday kisses. Im saving all mine up until that blessed day when we are reunited. 

 

I do have so much to be thankful for, three amazing daughters who bless my life each day. Who make me so proud with their kindness and caring well beyond their years.

 

They too miss Livvy desperately but together we have made a pact. We are going to live life like Livvy did. With courage, strength and joy and most of all with love and hope.

 

Our family may have one member in heaven but we are still a family.