Wow I cannot tell you how angry I am feeling right now.

So frustrated by the injustice in this world.

So devastated by my grief.

I am angry that children are dying through hunger when so many have so much.

I am angry that I had I bury my daughter.

So many times I can find my inner sunshine and find peace with this world.

Not today.

Today I am so cross.

I have a rage burning up inside of me.I am so lost.

Normally the peace maker today I want to start a war.

I want to battle against poverty.

I want to fight against Rett syndrome.

I want so much for things to be different.

Today I wonder how to move forward. How to let my heart open again.

It’s hard my husband says I want to save the whole world.

Maybe I’m selfish today because right now I just wish I could have saved Livvy.

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


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.


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.


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.

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.


It should have been a simple visit to wheelchair services.

But nothing is simple when you are grieving.

Visiting a place that has memories filling every inch of the place.

Another first.

Another place without her.

Another reminder of our loss.

Another dose of pain.

I can’t make sense of life today.

I don’t understand or care for Gods plan.

Today I’m hurting desperately.

Today I’m so angry I could scream.

Today I want to lose myself in my memories.

Today just like yesterday I want my daughter back.


The mask has slipped.

All this week I’ve had a throbbing headache. It’s felt like a storm raging inside my brain. Yet I know the truth behind the pain. It’s fear, grief and anger all fighting an internal battle inside my mind.

Today is Livvy’s 12th birthday and while you will find me talking to her sisters of heavenly birthday parties. Never-ending birthday cake to be shared with loved ones. My heart is so full of pain.

Today I don’t want to be strong. I don’t want survive I just want to fall into a vortex of nothingness free from the pain, free from the memories.

How and why do we have to carry on? It feels like my heart is completely broken yet it still beats.

My faith tells me that eternity awaits me. That I will see Livvy again but today the wait seems to long.

I close my eyes and can see her smile, her amazing blue eyes the blond curly hair as wild as her spirit.

How I wish I could hold her again. How I wish I could hear that giggle.

I look at pictures, watch videos but it’s just not enough. I reach out but all I feel is paper, the screen.

I’m so angry at life, so frustrated with God he has the answers but today I just can’t see them.

Yes Livvy is free from the evil of Rett Syndrome but she is also out of reach of mommy cuddles and nose kisses.

I’m lost today and not sure I want to be found.

The truth is I have to carry on, I have three amazing daughters that need me. They need me to put on the mask of happiness and smile at the memories, laugh with them at the stories.

So today as my daughter is 12 in heaven. I again become the actor in the play we call life. But my heart will never be complete as there is a missing piece waiting for me in eternity.

Happy 12th Birthday my darling Livvy. You are so loved. Never forget that. Xxxxxxxxxxxx