Losing a child breaks you in a way that can never be repaired.

You hold yourself together by pieces and patches.

Stress and fear becomes your companion. Imagine if your worse fear can come true everything else is a possibility.

People tell me to not to stress to trust but I did once before and I lost my daughter.

It’s so hard to just believe. To allow myself to let go of fear.

I try, I promise I try but sometimes grief is the only emotion I can fight so anxiety, fear and panic slip in under the radar.

I make myself promise
I’m not going to care as much
I’m going to switch off more
Take a step back from situations that really don’t effect me.

But I don’t, my heart engages before my head.

Life is complicated full of ups and downs and some how I need to learn how to go with the flow.

Any ideas, any suggestions all are welcome, I need 2013 to be the year I take control of my heart.

Its nearly over woo hoo.

So am I the only one breathing a sign of relief now that Christmas is nearly over.


I find it all so stressful, the wrapping of the presents the writing of the cards, the remembering of everyone names and the names of their children. It all sends me to the verge of insanity and lets not even mention the Christmas dinner.


At times i  have actually felt physically sick with all the stress and as you can imagine stress effects my illness and my body seems to just surrender to any virus’s going around. So far i’ve had the sickness bug twice and the flu, migraines you name it I will list it.


Of course the joy on my kids faces on Christmas morning was worth it. Even the teenagers were happy for a couple of hours.


But I am tired to my bones.


Its been a strange one but a good one, as i mentioned the teens have been bearable, the husband helpful and the two little ones well hyper doesn’t seem to come close to describing them. I admit to wishing they had an off switch over the last few days. Why does excitement have to be so loud and Autistic melt downs well they certainly wasn’t on my Christmas list.



So now I could do with just some down time, I’m slightly fed up of Christmas trees and flashing lights, toys going off randomly, gifts left in the living room as the bedrooms are full to bursting. Bins overflowing and half eaten selection packs.


Kids requiring food at least three times at day. ( I miss school dinners).


Television full of Christmas specials of soaps that i never watch throughout the rest of the year. Films that have been watched numerous times before.


Relatives visiting. (of course they were very welcome).

But ……

I  just need my order, my routine and just some peace and quiet.


So yes Christmas was lovely but yes I am ready for it to be over.


Am I alone in feeling this way?

The Polar Express – Review

Over the Christmas period we have tried to wind down in the evening with a good dvd, and thanks to my Christmas box from Warner Brothers last night I finally sat and watched  “The Polar Express.”

To be honest it did receive a mixed reaction from my household, with the majority of us loving it but the hubby wasn’t that impressed and fell asleep half way through. Personally i don’t think this had anything to do with the movie and more to do with him being a lazy bum.


Anyway back to the film, not to spoil the story but it is based on a young boy who has started to lose faith in Santa Claus growing up has him deciding to only believe in what he can see.


Enter in a magical train and a trip to the North Pole.

I love the magic of Christmas and while I have never made to much emphasis on the legend of Santa I love the season for its cheer and good will and this film has them in abundance.


The effects on the film are outstanding, at times the animation was so real that sometimes i forgot it wasn’t real.


It is a fantastic story which would be perfect to settle down to with the kids on Christmas eve or any night to be honest.


My youngest loved it and to quote my eldest daughters teenage boyfriend “its a classic”



My letter to Santa


Dear Santa

I’ve been a good girl so please may I have my Christmas wishes.

Number 1 ,

Is a cure for Rett syndrome I have lost too much to this devastating condition please pack the cure into your big red sack.

Number 2,

Please Santa let the world know that parents of children with special needs know what’s best for their children. Take away the ignorance of the world and give them the voices they need to be heard.

Number 3

Santa I wish for health and happiness for my family and friends. I am blessed to have some incredible people in my life. Happiness and health for all pretty please.

Number 4

This may sound like a speech from Miss World but Santa peace for the world would be really nice. Let us all learn to respect each other, let the wars end and the brave men and woman in our forces come home safe to their families waiting for them.

Now dear Santa I know I’ve asked for quite a lot but my fifth and final wish is simply this

Number 5

Sleep, my bed and I haven’t been seeing as much of each other as I would like. Please send me some peaceful nights sleep

So Santa here is my Christmas list.

Many thanks in anticipation

Sara xx

Holding out my hand

I have a question to ask you all,

Who do you remember most, the person who knocked you down or the one that helped you up?

Answer honestly

I ask myself this question a lot. So many things happen and I just get so angry at the amount of things that try to knock me down.

I find myself so caught up in the anger that many times I’m not aware of the ones holding out their hands to help me up. I’m focused on the ones that are hurting me and causing me stress.


Yet focussing on them lets them win. It’s a simple as that.

It’s not easy though is it?

When life is exhausting and it seems that the whole world is filled with evil.

But this isn’t the truth and the truth is where my focus should be.

Evil was defeated by the cross, yet the enemy is fantastic at creating illusions and its these illusions that we allow to draw us in, to believe, to accept.

Newspapers, television the Internet they are all about the sensationalising the evil.

But that isn’t all this world is about!

It’s a world of heroes.

Teachers protecting their pupils. Placing down their lives in sacrifice.

A world of men, woman fighting for the liberty of others.

A world full of parents fighting for the safety of their children.

A world of love and kindness

So let us fight back against this evil by not giving it the space in our minds and hearts that it desires.

Life may knock your down, people may try to hurt and abuse you but when you are fighting those battles look around you and see the people by your side.

The people holding out their hands.

That is where our focus should be.

Love will always overcome.


Santa stories

Ok it’s that time of year again when we cannot avoid mentioning the man in the big red coat and hair all white.

Yes that right a week today Santa will be coming to visit us all.

Now I love Christmas but with two teenagers and two pre-teens the magical essence is beginning to wear off slightly.

In fact the horrible creatures are actually spoiling it for me.

It seems its uncool to sing carols anymore.

It is super uncool to wear tinsel in your hair and when I suggested a visit to Santa’s grotto they pretty much wet themselves. Did I mention they were horrid children!

So it’s back to my memories I go to my very first Santa visit with my first born. To be honest she was only 6 months old and I may have been just a little presumptuous taking her but visiting the local city and checking out the fantastic grottos of John Lewis and Rackhems. I had some of my most special childhood memories made there and of course like any loving mother ( yeah I know sick bucket required) I was desperate for my child to feel that magic and have wonderful memories of their own.


So there he was Santa dressed in all his Christmas finery open armed to receive on to his lap this beautiful chubby six month old angel. He is holding her close posing for the perfect photo, all the parents in line gushing about how cute she looks when disaster strikes, that cute adorable little girl takes hold of Santa’s beard and with a vice like grip yanks that beard with all her might. Letting the whole world, ok maybe just the line of waiting children know that Santa is in fact a clean shaved twenty something year old.

Oh my the shame, the tears, the tears. A line of children sobbing into their parents arms “Santa isn’t real” “Santa isn’t old”, “mommy that isn’t “Santa”.

It was certainly one of those moments when you want the ground to open up and swallow you whole.

I also wish the whole episode ended there but the adorable six month angel/devil refused to let go of Santa’s beard for at least 5 minutes more and eventually had to be bribed with chocolate buttons (bad mother i know)

And as she reached for those buttons I’m ashamed to say she did so with a handful of white pretend beard hair.

Oh the joys of parenthood.

Anyway please tell me I’m not the only one who has experience grotto nightmares.

I mean two years ago my youngest when asked by Santa what she wanted for Christmas replied “you know what Santa I don’t think you are real but my friends and I are going to play along for our moms ok”.

My 2nd oldest once informed the man in the red coat she was just covering all the bases. And that she had also asked Santa for something that wasn’t on her list, if she got it then she would know he was real if not oh well.

The joys of Christmas

As for dodgy looking Santa’s check my hubby stepping in to play the role when our own Father Christmas got stuck in a snow drift.


I love Christmas

Pieces of Silver

I took my necklaces off tonight.

They aren’t just any old necklaces they were my heart wrapped up in pieces of silver.

My cross baring an open dedication of my faith and the chain also holding Livvys ring, that tiny little ring full of memories and giggles. Taking us back to that jewellers in Tenby and certain stubborn young lady knowing which one she wanted and the giggles as she stuck her hand up for any stranger than walked by as if to say , look at my new ring.


My portrait of Livvy immortalised in a silver charm, my dog tag of identity Livvy’s mom


As I said two special necklaces.

But tonight I felt the need to lay them safe for a while in the jewellery box.

Livvys ring is starting to wear from the constant use and the questions of “is that your daughter ” are starting to wear at my soul.

Yes that is my daughter and yes I miss her desperately but you know what I’m a mom to four amazing daughters.

I want to celebrate in this. In their own individual crazy way these beautiful girls are the light of my life. The essence of my heart.

I have to stop the grief from holding me in the past and allow myself to embrace the future.

The truth is I don’t need a chain or a portrait to carry Livvy with me she is in every breathe that I take, in every beat of my heart just like her sisters,all four of them.

A mothers love has no bounds.

Light overthrowing the darkness

The funeral yesterday was beautiful. A fitting celebration of a beautiful life.

Somehow I managed to keep it together, of course I cried but I managed to hold back those gut wrenching sobs until I was stood in privacy at Livvy’s grave.

This place of finality brings me so much comfort at times it’s my place of remembrance.

Though to be honest it was at the gathering afterwards that I really struggled. As I sat there drinking my coffee I was struck again with the thought “the world moves on”.

As I watched my dear friends move between the mourners I realised that their reality, their normal has changed.

Nothing will ever be as it was.

I write that as if I’m in a place of acceptance but that is so not true.
Four years on I still haven’t found my new normal, I don’t think I ever will.

Normal belonged with our daughters, I think they took it to heaven with them.

I was taken back to four years ago when I was at Livvy’s funeral and how I was wishing it to never end.

The moment that I left that place I was leaving my daughter behind. It was the finality of final.

After the gathering we returned to our home so full of her things but so empty of her.

Our life had been filled with the caring, the loving of this beautiful incredible special needs child, now the empty hours seemed endless before me.

My girls will joke this was the time I started ironing their knickers but in all honesty they speak the truth. I tried earnestly to fill those empty hours.

I’m told by my children that at times I was suffocating, that I needed to be with them every moment of the day. They understood but they were young and had a life to live, school to attend, friends to play with.

I used to find myself caught up in unexpected rage after hearing a parent speak harshly to a child in the street. The “why did I ever have you” comment spoken not in truth but frustration tore at my soul. Alan dragging me away when I just wanted to scream “every moment is precious” “never let your child feel unloved”.

How does the world move on without my beautiful daughter.

I wanted to demand that everyone stood still and allow time just to freeze right there.

Of course that wasn’t going to happen.

Platitudes were given in love but were driving me insane.

“No more suffering”
“No more pain”

As if suffering and pain was all Livvy’s life amounted too. What about

“No more laughing”
“No more dancing”
“No more mischevious behaviour”

Livvy was so much more that what her syndrome was, pray tell me people could see that.

Then the anger left me and the darkness came it was all I could see when somewhere in the corner there was a ray of light.



The more I read the words of the bible the more my heart was filled with something I had never dared dream of again.


One day I would hold my beautiful girl again.

That this life isn’t the one we should hold on to.

Eternity is ours.

“So now faith, hope, and love abide, these three; but the greatest of these is love.” 1 Corinthians 13:13 ESV

Love is eternal