I need to change my go to.

What do you do when life seems crazy and you feel like it’s all to much?

Do you have ways of calming yourself down, meditation, prayer or maybe wine?

I’m not really sure I have a method.

I seem to carry on and carry on until I have to sleep with complete exhaustion.

Only yesterday I realised I do something else when life gets stressful.

I pull away.

My phone stays silent,.

I ignore the notifications and I only communicate as and when.

It’s as if I can only cope with so much that I’m scared to open up in case it becomes more.

Yet in doing this I find myself alone, lonely.

It wasn’t always like this.

Something happened last year which left me hurting terribly.

It took away my naivety

It took away my trust

And why I have tried not to let it have a hold over me I realise it has.

My closing off and pretending I’m ok Is literally locking out those who wish to be there for me.

[Tweet “Punishing many for the few.”]

I apologise to those I have shied away from.

I see now all you were trying to do is be there for me.

I am truly grateful.

I can’t promise I won’t hold back or close off anymore.

[Tweet “But I can promise I will try.”]

 

How can I stop their pain ?

Yesterday I had a bad day.

That’s sounds a little of a understatement as I was rushed into hospital by ambulance struggling to breathe.

After some oxygen and painkillers and a few tests later I was diagnosed with pleurisy and told to have complete rest and plenty of fluids.

Anyway the reason I’m sharing this isn’t for sympathy, though willing to accept that as well but because of what happened with my youngest daughter.

Brodie had been out swimming with her friends when I started to struggle and returned home only to find her mom being taken into an ambulance.

Don’t get me wrong this must be frightening to any child but take in mind the last time Brodie saw Livvy she was being taken away in a one too.

The poor child broke there and then. She fell to the floor in hysterics my heart was breaking for her and after refusing to leave and my explanation the lovely ambulance ladies allowed her onboard to see that I was ok which reassured her a little. Oxygen masks aren’t that reassuring it seems.

It pains me so much that my children have memories like this and even though we focus so much on the blessing Livvy was to our lives. There in the back of their minds they have these traumatic memories.

I know people say time is a great healer but when the worst has happened to you it’s not easy not to go back there again.

I know she didn’t stop worrying until I returned home and today I have also found her watching videos of Livvy.

I hate that I had to lose my daughter but watching my daughters grieve for their sister hurts all over again.

How can I stop their pain?

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This was taken the night before we lost our beautiful girl.
The last photo of Brodie and Livvy together.

Hope

I had a realisation last night that I had given up on hope.

Hope of peace, hope of friendship and so much more.

I finally understood what my husband had been saying when he tells me I have been holding people at arms length.

Scared to push forward.

I have held back from joining groups.

Stopped taking part.

Just digging deeper into myself.

I had let fear become greater than hope in my heart.

I can blame it on many reasons but i believe the main three to be

Fear of rejection and failure

Self confidence

Self punishment

I am so fearful I will get hurt again that I have closed of my heart.

Scared to live life openly and fully.

Self confidence, when you grow up never feeling good enough it’s a hard journey to get to a point when you can look in the mirror an say “believe”.

Self punishment – I have a lot of baggage here. From a wild youth of drinking, drugs to the blaming myself for losing Livvy. Second guessing decisions that wasn’t mine to make.

I had lost HOPE.

So today I am setting myself on a new path.

One where I start to believe again.

One where I start to trust again.

One where I start to hope again.

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A good place.

You know what I’m in a good place right now.

The beginning of this year has brought me many changes, hard decisions and a lot of heartache.

I have doubted who I am, stood in judgement on myself.

It wasn’t good and for a while there I was scared.

Scared of falling into the darkness.

Thankfully I didn’t, even in the midst of it all I held on for the light.

And it came.

I’m happy.

Yeah that feels so good to say that.

I’m happy.

I don’t find it easy to be in that happy place. I struggle so much with guilt, fear and just the burning desire to be liked.

Happiness isn’t my natural go to point.

But finally I’m in that place where I want to shout out.

HEY YOU KNOW WHAT, IM GOOD

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A Sisters Heart

Dear everyone

Please help me and my family to find a cure for this terrible disease called Rett syndrome.

Four years ago my sister Olivia aged nine passed away by this horrible disease. Olivia was my best friend she used to drop her toys on the floor on purpose so I would go to pick them up ,then she would yank my hair and laugh but I didn’t care because she was my sister and I miss her so much.

I wish I could see her smile and give her a huge hug so badly.

Earlier on my mom told me that her friends daughter passed away from Rett syndrome she went to sleep and never woke. This is the same as my sister.

Each day more girls are being born with this syndrome.

Now my mom’s friends daughter was only five and even though we had Olivia for nine whole years it doesn’t seem enough.

The other day I told my mom that please don’t take this the bad way but in a way I’m happy Olivia died because the fact is she is no longer in pain. I worry all the time of the pain the girls are in. Livvy suffered so much.

Please help us as we try and raise funds to pay for the research into the cure for Rett Syndrome.

Please find it in your heart to make a donation no matter how much it is you can help save somebody’s life.

If you see or hear that another girl has died has died of Rett syndrome i ask yourself to put yourself in that girls families shoes. Can you imagine how you would be feeling ,how your heart would be broken?

Please please think of others today and help us fight against Rett Syndrome.

Any donation would be amazing.

My mom suggested to make a donation to Rett syndrome research trust instead of sending Christmas cards.

I asked for donations instead of Christmas presents but mom said only one.

Please please help stop this horrible syndrome. I miss Livvy so much and don’t want another brother or sister to cry like I do.

To donate visit the website http://www.reverserett.org.uk/

Anything will be received with such love from our family and from our hearts up above.

Thank you

Brodie xxx

*this was written by my 11 year old daughter, I only added the link.