Epilepsy awareness day

20130326-084932.jpg

Today is Epilepsy awareness day, a day where people across the world, share,educate and inform people about this condition.

I am too aware of epilepsy as it was condition that Livvy suffered from severely. A condition that played a big part in her death.

Livvy suffered from uncontrollable seizures, one time we counted over 106 in a day. We tried many medications and fought hard not to let them to control her life.

Lets just say it was an ongoing war,one which sometimes we won the battle other times we lost.

Epilepsy can be scary for both the one having the seizure and the one watching.

Epilepsy is also surrounded by myths, not that long ago sufferers were accused of being demons. Thankfully times have changed but still the need for awareness is there.

So I ask you today to click this link and learn more about this condition.

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.

Explaining Me

I’ve been thinking a lot about scripture and how some verses just cling to your hearts. They pop up in your thoughts at given times.

When you are exhausted you can one think of one with strength.

God is our refuge and strength, an ever-present help in trouble.
(Psalms 46:1-1, NIV)

When you are lost, one reminds you of direction.

I will instruct you and teach you in the way you should go; I will counsel you and watch over you.
(Psalms 32:8, NIV)

When you are scared one reminds you to trust.

Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal.
(Isaiah 26:4, NIV)

I have many that inspire, consume and replenish my soul.

The verse you see below was the inspiration behind naming this blog it is one I hold dear to my heart. I know my life has been blessed many times by angels.

Remember to welcome strangers because some that have done this have welcomed angels without knowing it. Hebrews, 13.1

Yet the last 6 months I’ve been searching for something that will explain me.

I get a lot of people asking me how I do what I do, how I’ve survived what I have.

20120121-020817.jpg

This simply explains it all. I don’t do it alone , all that I do, all that I achieve is because of and through Christ Jesus.

Anyone know the way?

It’s crazy somedays I just get so caught up in my lack of self confidence that everything seems to be so different to how it really is.

It’s like my reality can be screwed up by my emotions.

Today I’ve been feeling really down on myself, someone had said something to me that just robbed me of my self confidence in one sentence.

The crazy thing is I don’t think they meant it to sound how I heard it.

They were talking about learning more, I was hearing “you are thick and know nothing.”

How do I get to point of belief?

A point where I believe in myself.

I’m trying hard to let things wash over.

To have faith in myself.

To be true to myself and liking who I am.

It’s a journey with a lot of dead ends. I feel like I’ve taken the wrong road at times and are completely lost.

Does anyone have a map?

Anyone know the way?

20120108-013300.jpg

Christmas is over but the pain isn’t

Christmas has come and gone for another year. Presents opened, food eaten.

Children happily playing with their toys, husband quietly snoring on the sofa.

Its been a good one but it is still so different, so very wrong.

The last three years have been hard. Traditions have had to change. You can’t survive doing the same old things when someone is missing.

Christmas morning’s visit to Livvys grave was so hard. The yellow glittery flowers was the only gift I could lay for my beautiful daughter.

20111227-024814.jpg

Wishes send to heaven on my tears.

A kind old gentleman I have got to know visits his wife’s grave. He looks at me sadly and simply says

“it hurts “

How true are his words.

He loved his wife for over 40 years nursed her when she was sick. She was his, he was hers.

The tears fall down our faces as we share each others pain. He holds on to his memories I grieve for the ones we didn’t get to make.

Christmas, birthdays, anniversaries they all hit home the truth.

Our loved ones are out of reach.

Yet it’s in the Christmas story I find my peace. In the celebration of our Saviours birth I rejoice. For on this day was born the beginning of what would become our salvation.

As Mary held her dear baby boy in her arms did she ever perceive the life he would lead?Could she ever imagined his death?

As a grieving mother I can tell you it’s unimaginable. We bring our children into this world to live not to die.

Yet in the death of Mary’s son was the birth of hope. The birth of truth, the birth of life.

I grieve desperately for my daughter. In the midst of all the torn wrapping paper is my torn aching heart.

Yet on this day our Saviour was born and in this joyous moment was the birth of what I hold so tight. Salvation and the promise of eternity.

“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.
(John 3:16, NIV)

Kicked off the campsite

I’m lying here in the caravan listening to silence around me. I’m not sure how to feel. Today has been an amazing day, such wonderful memories made. Yet as the day draws to a end I’m transported back a few years. To a rain drenched field and a tent blustering in the wind and two cheeky young children laughing and giggling and keeping the whole campsite awake.

Both children have now passed. My daughter Livvy and our dear Ryan. So very young, taken far to early. So dearly missed and forever grieved.

How is it possible to laugh and cry at the same time as I am now. As I get lost in the precious memories. Both Livvy and Ryan in separate tents causing mayhem. The more we said be quiet the louder the laughter became. You wouldn’t believe two disabled children who looked like butter wouldn’t melt in their mouths nearly got us kicked off the campsite.

Double trouble that’s for sure.

What would I give to hear their giggles again. To feel the infectious spirit upon my soul.

Time carries on but as I sit and listen to the silence I miss the past so much. Will life ever be the same again?

Life here without them Is hard but I do smile at the chaos they will be causing in heaven.

20110709-234931.jpg