That old deception.

I honestly don’t understand the concept of grieving getting easier.

Or the old deception “Time is a great healer” it’s not. Time is just the measurement of hours, minutes and seconds I have lived life without my beautiful daughter.

Grieving doesn’t get easier we just get stronger or better at hiding the pain of our broken hearts.

Never for one minute think that my daughter isn’t there in my mind.

That my arms don’t ache to hold her.

That my heart will ever be healed.

I miss Livvy with every breathe that I take.

Yes the smiles are on my face and I am living my life but that’s because I know she would kick my butt if I didn’t.

I honour her legacy but that doesn’t mean I’m healed.

I miss my beautiful girl.

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Time is my enemy.

I’ve been thinking a lot since I returned from my week away about time and how much it controls our lives.

Anyone who knows me will already know I have an issue with time. Time as in the measurements of life, hours, minutes, seconds. It’s a manmade calculation which personally drives me insane.

I often wonder if we are missing out on the present due to the focus on our future.

How often to you stand there and just appreciate the now. Our brains are always on the next event mode. Appointments we have to keep, jobs that need doing, places we have to be.

Time controls our lives and not in good way.

Last week on that camping field time seemed irrelevant.

We ate when we were hungry. We visited when we wanted. Everything was done on a free basis. It was pure bliss.

I know it wasn’t the real world it was a week away from appointments and jobs well not really for us as fostering is a full time, 24 hour a day job but you get the gist.

It was relaxed and free.

Although I hate the concept of time I am also a total slave to it.

I live my life by technology and Filofaxes.

Diaries, alarms you name it I’m a slave to them.

Appointments, phone calls, deadlines they all have me tight.

My watch and I have a love hate relationship

Yet after my week away I have decided I needed to do something about this.

I need to loosen the grip this measurement foe has on me.

I’m going to make a conscious effort to be in the now more.

To slow down my pace in life.

I know I cannot live my life in a field but I can bring the field into my life a little.

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A magical week

I’m not quite sure I can find the words to describe this last week. Being in that field In Wem has again surpassed any expectations I had.

I have been cocooned in a place where people get me. Where people understand my life. Where people share my joys and my heartaches.

Laughter is the greatest medicine of them all and this week there has been some dramatic healing going on.

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People came with stresses and worries and for this last week we have left them all behind and reminded ourselves of the true beauty In life, FRIENDSHIP

We all feel stronger with a good friend by our sides and that’s what this week has been about.

Community.

This week in that field in Wem has been incredible.

We have had fun days with bouncy castles and BBQs.

We have had balloon releases to celebrate and remember those that have gone before us. Tears have fallen and hearts have ached but together we were surrounded by love that eased our grieving souls.

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Everyone of us remembering a child or a loved one who was taken too soon.

The fragility of life with our children was there in the disappearing balloons but also the reminder to live life to the the full was there too.

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The special Olympic races were so much fun. The sheer joy and exhilaration as the children in their wheelchairs were raced along by competitive parents or teens.

Adults races with father and son determined to beat each other, young and old, wheelchair bound or wobbly walkers we had it all.

For me this was such a special time. Watching the faces of the children as they reached that finish line was priceless and such a wonderful memory to store up and cherish forever.

Special kids in the UK camp to me is all about grabbing life by both hands and living it.

The expectations and assumptions for our children get left at the gate.

I’ve spent a lot of time this week people watching and have had my heart refreshed by human kindness.

Teenagers being dragged about by toddlers. Young adults being followerd by young admirers.

I’m so proud to call these people my family.

I have had such a wonderful time. I could write blog post after blog post.

Sharing stories of a crazy gentleman who dress up in ball gowns.

Of a young man who defined the odds and took his first steps.

Of a terrifying car crash that thankfully only ended in a written off car, of the young driver who didnt care about about said car as long as his passengers were all ok.

Of trips to McDonald’s without shoes and of belly dancing and bottom talk.

I could share so much,

It was truly a magical week and although I am glad to be home in the comfort of my bed I am already missing my friends.

My nights around the campfire and the stories we share. Of drooping marshmallows and shared dreams.

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Camp was amazing this year I got to meet up with old friends and to make new ones.

Also my new motto from this week is simply

“Kill them with kindness”.

I love it.

What would you save???

 

After watching the above video I was wondering about what I would rush to save if my home was being destroyed.

 

Now of course my children, husband and pets would be the first things I would get to safety.

 

But what after them would I consider to be my priceless possessions.

 

My memories 

 

Tied up in my photographs, scrapbooks and memory boxes I have memories of my children’s childhood.

 

In my memory boxes I have some of Livvy’s favorite things which when I hold close bring her closer to me.

 

In the photographs I have the images of my four girls together. Photos I can never replace or redo.

 

I know I should probably think about the macbook or jewelry as they are the expensive items but these precious memories are simply priceless to me. Like the above video shows  true value is what is in your heart not your bank balance.

 

Irreplaceable

 

So yes if my home was being destroyed my memories would be what I would rush to save.

 

 

Stop and think before you publish

Sometimes I wonder about this world of social media and question if the reality of it is actually a good thing.

Yes we can communicate a lot faster and over oceans and continents. No more waiting for the postman to arrive or for telegraphs to be sent.

Yes we can open our circle of friends a lot wider and learn so much more than ever. Be part of support groups or fan clubs that we would never have managed before.

But like everything it life it has a contrast.

Words can be spurred easily from behind a computer screen.

Words that maybe people would think twice about saying in person are now flown out across Facebook pages, twitter and so much more.

Sometimes yes those words can and are used to lift people up but as I have been finding recently they are more often used to tear others down.

Now I am not saying each and everyone is entitled to there own opinion but I always go by the presumption of innocence before guilty.

Yet the mob mentality that is becoming part of this virtual world seems to be leaving this behind.

Children are being bullied to their deaths. They are hounded by those they know but also by those who have jumped into a thread or comment line for fun.

Lives are being ruined by malicious gossip that once written can never be removed.

Trolls are invading people’s minds and hearts for little more than a reaction.

I remember years ago reading accounts of trials by media and the consequences that was often brought about by them. Now it’s trial by social media.

I know many of you may be thinking that we still have liability laws for protection, but let’s be honest a tweet, an email, a video can now go viral in minutes.

Liability after the fact is still to little to late.

Damage control can only go so far.

Once it’s out there you CANNOT get it back.

Now I’m not saying lets boycott all the social media sites, I’m not saying this at all. In fact it’s well known I am a lover of social media sites and you will find me spending many hours on them. They have helped me share my story, meet new people and even been (are) my support network.

What I am saying is we all need to have accountability.

Let us know the full story before we write that tweet or post that update.

Let us be aware of the full picture before we join in on a witch hunt or a bullying episode and to be honest let’s not anyway.

Lets be sure of what position we hold before we like a post or retweet a tweet.

You may not have written the words yourself but you endorse them with your promotion.

Have your own opinion before you validate another’s.

Lets be accountable.

It isn’t easy and as a social media lover I don’t want there to be restrictions to the use of social networks but what I do want is there to be quick and severe consequences for those who abuse it.

I do want protection in place for our children who have yet to learn the savagery of the real world or the true consequences of their actions.

This isn’t about the squashing our freedom of speech.

We are all entitled to our own opinions but we also have to be able to stand by them.

Speak the truth

Know your heart

Before you touch that keyboard.

Be accountable

I know do.

Do you?

“Truth without love is brutality, and love without truth is hypocrisy.”
― Warren W. Wiersbe

My field in Wem

I cannot express in words the excitement I am feeling about next week.

 

I am off to ‘my field in Wem”

 

To many that may not sound exciting but to a group of special parents it is pure heaven.

 

Using the name “special parents” may be a play on words when I explain a little more about this piece of Shropshire paradise.

 

This field is a place that holds more bravery and courage than you will see anywhere.

 

A place where the medical knowledge of parents often outweighs that of the medical profession.

 

A field full of people who have and are fighting daily battles.

 

A campsite full of children with syndromes and diseases both named and unnamed who have more fighting spirit than will ever be seen at any boxing match.

 

All unique in their own special way.

 

Its a field in full of friendship and acceptance

 

For me its a field full of family.

 

My Special Kids in the UK family.

 

 

For the seven days  that I am on that  field i will never feel alone.

 

I will be hugged and hugged again.

 

I will be handed a glass (bottle ) of wine and my worries will be listened to and my heart will be comforted.

 

I will be advised and encouraged

 

Stories shared and battle scars nursed.

 

I will laugh, i will cry, ok I will cry loads

 

 

But I never will be alone.

 

For many years now I have been part of this special group.

 

They have kept me sane through endless hospital nights.

 

Pointed me to information and legislation so that i’m armed and knowledgeable when taking on professionals who manage budgets not disabled children.

 

They have allowed me the space and freedom to admit when I am scared or overwhelmed. Also allowing me to encourage them too.

 

They have held me up when I fell down.

 

They have shared my beautiful daughter with me  and still do with their stories and forever memories.

 

They bless my heart.

 

That field in Wem next week will be full of some incredible people I am so blessed to call my friends.

 

That campsite in a beautiful setting will be full of beautiful people.

 

I cannot wait.

 

 

 

 

 

Not by accident

Sometimes you accidentally come across something that blesses you so much that you know for a fact it was NO accident that it came alongside you on your life’s pathway.

This is what I am still feeling about Sundays service from Pastors Rick & Kay Warren.

It was a simple tweet that brought this service to my attention. It was the first service back for the Warrens since the tragic death of they much loved son Matthew.

I wasn’t going to listen to it but something in my heart, someone in my head was saying ” sit down for a bit and listen”.

To be truthful I had wanted to hear how they were doing and how they were staying strong in faith after such a loss.

I know personally it is such a daily journey to hold on to my faith when I have so many “whys” in my heart.

Well I grabbed a coffee and settled myself on my bed with my notebook and waited for the service.

I often watch or listen to the sermons of the big mega church’s and wonder so much about them. Do they have strong communities? How can you build up strong connections with so many?

But anyway that’s just me sidetracking  lets get back to Sunday’s service.

I will just start with the statement

“I sobbed my heart out”.

As Rick and Kay spoke of the fear they have felt about losing Matthew my heart just went to that place where fear had lived for so many years with Livvy.

Yes I understand that Matthew suffered from mental illness and that Livvy’s Rett Syndrome was a neurological disorder but the truth is they both were severely ill and I know of NO parent who has a ill child who doesn’t live in fear of that moment where their worst nightmare becomes a reality.

That panic that comes from the worsening symptoms or the hospital stays.

It’s like a vice that has got hold of your heart and is crushing it so tight.

Each breath is constricted by the fear. The fear of loss.

Rick spoke with such wisdom, such truth.

‘Take your tests and turn them into your testimony”

How true is this, losing Livvy nearly destroyed me but I refused to give in. I wanted to open my heart and be transparent in my grief and in doing so I have others who have been encouraged by my words.

Livvy’s Smile was not founded as a memorial but as a place of hope. To make those memories that we treasure. To live life to the full as the blessing it is.

Rick spoke my heart when he stated that

“You may not understand but God Knows”

He reminded me that I am engraved on the palms of Gods hands.

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Behold, I have engraved you on the palms of my hands; your walls are continually before me. Isaiah 49:16 ESV

Rick spoke honestly about the battles of life and it was the reminder I needed to stay strong.

Kay then took to the stage and began to speak. Her pain was etched on her face with such a familiarity I know so well.

A mother who has lost a child.

A mother who prayed so hard for a cure for her child.

A mother who had hope.

A mother whose hope was lost.

A mother whose heart was broken.

Kay spoke about her hope for a cure for Matthew and it took me back to that time in 2007 when the medical breakthrough came in the study of Rett Syndrome. There became hope of a cure. It was at this time I allowed myself to believe my daughter would be saved.

As you know my hope was shattered on that fateful night in November 2008.

Kay’s hope was shattered on that fateful day in April.

How do you move forward when your hope get shattered.

“Choose Joy” – Kay Warren.

Therefore, since we have been justified by faith, we[a] have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith[b] into this grace in which we stand, and we[c] rejoice[d] in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.  Romans 5, 1-5 ESV

This service, this sermon was what my aching heart needed.

I needed to be reminded to Choose Joy.

Yes my hope was shattered when we lost Livvy but I have the hope and the faith of eternity.

I grieve in light of eternity.

That the nine precious years I had with my beautiful daughter will seem like seconds in eternity.

He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” – Revelation 21.4 ESV

I pray for Rick and Kay Warren as I know their pain but I take comfort that they are strong in faith. They know they will be with Matthew again and that like Livvy, Matthew is now free from the tortures of his illness. Free from pain.

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I know I take so much comfort from the truth that Livvy is now free from the evil of Rett Syndrome, she is now walking, running, talking and so much more. No more pain for my baby girl, no more seizures, no more breathing problems. NO more.

I am so grateful that i listened to this service and I will be following them over the next few weeks as they speak more on these topics.

The Warrens ended the service with these three statements and i think they are ideal to end this post too.

  1. Live with Peace

  2. Live with Joy

  3. Live with Hope