I can breathe 

Whoosh

The air is returning to my lungs. 

I can breathe again. 

He is in recovery 

The operation went well. 

For three hours we had trusted 

Trusted in the skill of the surgeons the anaesthetist.

Trusted that they would look after my son.

Keep him safe

Keep him well. 

It’s not easy 

The internal battle of the mind.

Does he really need it?

Is it worth the risk?

Wanting your child to live a happy fulfilled life is all a parent wants. 

Your hopes and dreams are tied up in their happiness. 

I don’t dream of success or wealth for my children.

Just a lifetime of happiness and laughter. 

We will learn a new skill today.

A new way to keep him well.

Our bag of skills is getting bigger.

But my boy is good.

My boy is happy. 

I can breathe 

A water connoisseur.

Having a child with diabetes insipidus has made learn a lot about the fluid our body needs to survive and work at its best. Its also made me realise that i do not drink enough to keep my body hydrated.

In my quest to keep my body hydrated and well  I have developed into what my husband calls a water connoisseur. I have become passionate about trying new bottled water and have become a little of a water snob. I know what I like and what I don’t. My husband thinks I’m crazy as he cannot tell the difference but I certainly can. So when asked if I wanted to try a new brand of water i of course jumped at the chance.

First off I will let the brand tell you about itself.

AQUA Carpatica (www.aquacarpatica.co.uk) is nature’s most perfect mineral water. The first of its kind in the UK, it is naturally Nitrate-free and has the lowest Sodium level of any bottled natural mineral water on earth.

It is also naturally functional, and supports overall health and wellbeing, being the ideal water choice for the most demanding health conscious people, pregnant women, organic food lovers and those with active lifestyles.

AQUA Carpatica offers natural mineral waters of the highest quality, from the untouched springs within the Carpathian Mountains, available in three varieties: Still Natural Mineral Water, Naturally Sparkling Mineral Water and Forte Intensely Sparkling Mineral Water.

NITRATES AND SODIUM CONCERNS. AQUA CARPATICA HEALTH BENEFITS

Nitrates are fertilisers and can be traced in almost every bottled water on the market.  Found in nature and used in agriculture, they are colourless, odourless and tasteless but are pollutants, and in large quantities can be damaging.

Naturally Nitrate-free water is particularly important for pregnant women and new born babies as infants can become seriously ill if exposed to Nitrates. It has also been proven that birth defects are more likely to occur if expectant mothers are exposed to high levels of Nitrates.

In many European countries, legislation ensures that Nitrate (NO3) content in bottled water does not exceed 50mg per litre for adults, while for new born babies and pregnant women any more than 10mg per litre can be dangerous. AQUA Carpatica is the solution with a naturally Nitrate-free water.

UNIQUE SOFT, CLEAN TASTE

The newest addition to the UK bottled water market, AQUA Carpatica has a unique and unforgettable soft and clean taste. Courtesy of the water’s pure composition and naturally high alkaline pH level (7.8), AQUA Carpatica delivers an exquisite crisp, refreshing, balanced and unique flavour, with no bitter, salty or sour after-taste.  This makes it ideal to accompany and enhance the natural taste of food, whether fine dining or eating at home.

SOURCED FROM THE CARPATHIAN MOUNTAINS

AQUA Carpatica is today as it has been for centuries: pure and pristine with no enhancements, artificial carbonation or processing. Just as natural mineral water should be.

Every drop of the water is derived from two untouched springs deep within the pristine and beautiful Carpathian Mountains, which are home to the last remaining unspoilt forests in Europe. With no agriculture or industrial activity in the surrounding areas, AQUA Carpatica’s source is protected from chemicals, fertilizers, CFCs and other contaminants providing consumers with a healthier alternative and more transparent label.

AQUA Carpatica’s Naturally Sparkling Mineral Water is naturally carbonated by a unique geological volcanic structure and filtered by nature for 40 years, whilst it’s Still Natural Mineral Water is has an underground journey of 15 years.  At no stage do humans interfere with or process the water, meaning that it is impeccably pure and free from all contaminants. It is a naturally pure water, just as nature intended.

Every litre of Naturally Sparkling Mineral Water provides Potassium, nearly 24 per cent of an adult’s recommended daily requirement of Calcium and 16 per cent of Magnesium. AQUA Carpatica’s Still Natural Mineral Water contains natural electrolytes and has a low content of minerals with an alkaline pH level of 7.8[5].

All varieties of AQUA Carpatica water deliver a crisp, clean, refreshing and balanced flavour, with no bitter, salty or sour after-taste, making it ideal to accompany and enhance the natural taste of food, whether fine dining, eating at home or adding to baby food and milk formula.

AQUA Carpatica’s 12 SKUs mineral water portfolio is available in glass or a clear BPA (Bisphenol A) free bottle design and is 100% recyclable.

AQUA Carpatica is available throughout the UK and Ireland at Ocado, Amazon, Harrods, Whole Foods Market, As Nature Intended, Fresh Supermarket (Dublin) and over 300 independent outlets throughout the UK:

  • RRP 0.65p for 500ml Still Natural Mineral Water

  • RRP 0.69p for 500ml Naturally Sparkling Natural Mineral Water

  • RRP £0.79 for 1 litre and £0.99 for 1.5 litre Still Natural Mineral Water

  • RRP £1.09 for 1.5 litre Naturally Sparkling Natural Mineral Water

 

Now my personal opinion on the water.

First off I was completely impressed by the appearance . The bottles are stylish and come in both glass or a BPA free bottle. I was drawn straight away to the glass bottle as this is my personal favourite bottle to drink from but having the flexibility to choose between them both is ideal.

 

The presentation is really stylish and I was impressed.

But what about the water.

Smooth as silk. 

I have to say I loved it, the clean crisp taste was so refreshing, I had finished a bottle before I realised it.

Its strange to say it just tasted fresh and natural.

I am not a sparkling water fan so I asked my daughter to sample this and she was so impressed. I think she also was rather taken by the presentation and couldn’t wait to take a bottle to school.

 

 

In conclusion I have added another brand to my connoisseur list. I was impressed by the presentation but absolutely loved the taste.

 

 

  • I was gifted some water for the purpose of the review but all opinions are my own unless stated.

I nearly lied to my daughter

I nearly did it again last night,

I caught the words as they were just about to tumble out of my mouth.

I almost lied to my daughter

Lied to her again.

“ It will be alright’

“it will be ok” 

“ You have got this”.

Why do I do this?

Why do I make statements that I know not to be true?

You see life isn’t easy.

It can be cruel and harsh.

It hurts and causes us pain

and sometimes there is nothing we do can change that.

Right now for my girl its the pressure of GCSE’s that suck, but my telling her that all will be ok does not actually make any difference to the outcome.

Yes GCSE suck but me promising her a rosy ending isn’t true.

Of course her results are not the end of the world but the truth is that they do make a difference to her future.

She has to work her way through the endless hours of revision and hopefully she will get the results at the end of it.

 

There is no gain without pain. 

Benjamin Franklin

 

We  all have to make choices  on how to live life.

How to walk the journey.

Sometimes we will make what we believe are the easy choices but I believe that those are only the shortsighted ones.

For my daughter throwing in the towel in on her GCSE’s seems attractive, she gets to stop stressing and stop putting the hard work in, but her future wont be as easy without those grades.

Yet these GCSE’s are only the beginning of a life of challenges and obstacles and decisions she will have to make. She is going to have to face many choices in life, moments that will hurt her heart and leave her scarred. By lying to her i am not going to make these moments easier I will just make our relationship untrue. 

“I’m sorry dear girl that your head feels like it might explode, I’m sorry that teachers cannot see how hard you are working but I’m also sorry that I cannot change these situations for you. 

All i can promise you is that I do have your back.

I will walk along side you with no false hopes or fairytales falsehoods but with truth, love and faith,

faith in you. 

Livvy’s Ball – Her legacy is love.

 

 

Friday night was incredible, amazing and inspirational all in one.

I was so blessed to be surrounded and supported by some wonderful people.

Livvy’s Ball was an fantastic success and over the next few days I will be sharing so much more about it all.

But lets start with the most important thing, we raised an incredible £1400 to be split between Livvy’s Smile  and Reverse Rett Uk 

I cannot tell you how proud I am of this achievement.

I have been asked to share my speech from the evening, so i thought this would be the best place to start my posts all about the ball.

 

I would first like to welcome you all this evening to Livvy’s Ball. Alan and I cannot express in words our gratitude for each and every one of you for being here supporting this evening.

Those of you here who knew Livvy I’m sure would each have a memory or two to share about her. She certainly left an imprint on those who met her. To those who didn’t get to meet Livvy, I can assure you that the reason you are here has some basis in who she was.

You see Livvy changed who I was, who we all were

If you are here tonight supporting us as work colleagues I can promise you that we now foster because of what Livvy taught us,

my friends whose children have disabilities I can honestly say I wouldn’t be part of your world without Livvy.

Rett syndrome research warriors again because of Livvy.

Deciding how to mark Livvy’s 18th birthday was a easy decision. We knew we had to celebrate and celebrate in style. It had to be something that would represent all that she stood for and that was simply to live life fully.

You see although we only had Olivia for nine and a half years she packed into those years so much. She taught us her family how to love unconditionally, how to make sure that everyone knew how special their were to you.

No hold backs, means no regrets. Knowing that we didn’t have forever gave us the opportunity to stop wasting time and to love fiercely.

To make the moments matter.

 Livvy didn’t hold back anything, well unless you count sharing chocolate biscuits. She loved with all that she had, she laughed as often as possible and she lived wholeheartedly.

So it was a given that her 18th had to be special, had to honour her.

What better way than to have a evening of fun and friendship.

Still it had to be more than just a party we had to to celebrate with a purpose. So that’s why we decided that whilst we were having fun we would also fundraise.

I am as I said so very grateful for each and everyone of you who have bought your ticket to come celebrate my beautiful girlie with me tonight. But I’m going to ask a little more of you. We have been lucky enough to be supported with amazing raffle prices for tonight and I hope that you will buy as many as you can to support our chosen causes for this evening.

So who am I asking you support this evening.

First off we have Livvy’s Smile the charity endeavour that we started in Livvy’s memory. An idea of what we would thought would be one event which has now been running for eight years.

Livvy’s Smile is a memory maker.

When we lost Livvy we were so very grateful for the memories that we had to share. As I said Livvy loved life, from camping trips to ice skating days, from canoeing to barge boat trips we have some incredible moments to hold dear in our hearts. Yet we know that at times creating those moments wasn’t that easy. Raising a child with severe disability isn’t easy, throughout Livvy’s lifetime I personally experienced a lot of isolation and fear. It’s not a case of let’s go here or let’s do that everything took time and planning. With Livvy’s smile we wanted to create memory making days for children with disabilities but also for their families. Host events where siblings could play alongside their disabled sister or brother. Inclusion and fun. We wanted to host events where families could meet others in the same or similar circumstances, building friendships and lifelines of support.

Livvy’s Smile was started to make memories to create moments that children and families would cherish for a lifetime. I’m proud to say we have done that and although some children are no longer with us their families have memories to hold on to. This is something I am incredibly proud of and with your support is something we can continue doing. Making the moments matter.

Our second charity of the evening is Reverse Rett Uk. As you all may know Rett Syndrome is what Olivia had and what we lost her too. REtt syndrome is a devastating condition. It you were to imagine, Parkinson’s, cerebral palsy, epilepsy, autism all rolled into one you may get a little understanding of what Rett Syndrome is. I remember only to clearly Olivia being diagnosed with Rett syndrome, we actually had a late diagnosis as she was four years old. I had been searching the Internet googling her symptoms and had come across Rett Syndrome and simply decided at that point  that she couldn’t have that one. I didn’t want that one. Because back then the future for children with Rett syndrome seemed bleak, there was at that time no real hope. I’m so pleased to say that this isn’t the case anymore thanks to the wonderful work of Reverse Rett syndrome UK and other charities like this the future is brighter. The research is showing real promise that one day there will be a cure for this devastating condition. But of course research isn’t cheap but I promise you it is priceless.

I started a campaign a few years back to highlight Rett syndrome awareness called nomoremeptyarms and this is why I am asking you to support Reverse Rett tonight. My arms will never hold Livvy again but I am determined to do all that I can to make sure that the other parents with children with Rett syndrome their arms stay full.

Reverse Rett UK is simply hope in action.

I won’t go on for much longer now, we do have a wonderful evening planned for you and I wish you all an amazing time.

But I do want to say one thing more.

Life is not measured by the length you live but by the moments your create and the hearts that you touch. Livvy may have only lived for nine years,but the impact she left on others still lives on today in my heart, her daddy’s heart and her sisters hearts and in the hearts of all that knew her.

Her legacy was and always will be love.

I want to thank you all for being here to celebrate that legacy tonight, to celebrate my beautiful girl.

Happy 18th Livvy

Thank you all,

She should of been 18 today

I’m still falling,

The air is whizzing past me at a 100 miles an hour.

My chest is still tight as gravity constricts my breath.

My heart is still slowly crumbling.

Down into the abyss, into the darkness, into grief.

18 years ago they laid my daughter in my arms, our faces full of expectation, full of hope.

Our precious wonderful gift.

New life is such a celebration, tied up in that pink bundle was a lifetime of hopes and dreams.

A lifetime that would surpass decades,milestones, moments and memories.

I didn’t know then that a decade was never to be reached. That on the very cusp we would be robbed.

Not one, never. 

My daughter should have been 18 today. 

That precious pink bundle should be walking into adulthood.

Preparing for her own lifetime of moments and memories.

We should have been celebrating today, watching her sample her first legal taste of alcohol. Having political discussions on how she would use her new power to vote in the upcoming elections.

I should have been able to hold her close whilst promising to allow her to open her wings and fly.

I wonder what she would have been like at 18?

How she would have grown and changed.

I struggle to see how she would have looked, sounded.

I so wish I had got to see her grow, to see her become the woman she so deserved to be.

I’m consumed by a mixture of joy and anger right now.

A cocktail of thankfulness and grief.

I am so very blessed that I got to be Livvy’s mom but I’m so angry that time was not on our side.

I am so very thankful that I got to share nine incredible years walking alongside this amazing, fearless beautiful girl but i’m so consumed by the missing.

It is said “ It is better to have loved and lost” and yes I do heartily agree with this statement but it would have been even better to have loved and loved.

Happy birthday my sweet Livvy.

Happy heavenly 18th my gorgeous girl.

How I do life? 

I sometimes wonder about how I do life and if I’ve got it all completely wrong.

You see life hurts like crazy at times,

It soars to great heights and then to some truly awful lows.

Its scary and it’s so raw that I wonder why I do this to myself?

You see it would be so much easier if I didn’t open my heart so easily, if I shut down my emotions. If I stopped walking forward heart first and allowed my head to take the lead now and again.

I love to love but loving can leave you sore and damaged and burned. Yet for some crazy reason even when scorched I still love forward.

Am I my own worst enemy?

I know this sounds crazy but for a moment over the Easter weekend I wanted to be a post office attendant.

I was there in my local town post office picking up a parcel and as I normally do I got chatting to the people around me and the lady serving me. When I asked her if she had plans for the Easter holidays she replied with a massive smile “no”. She was planning on finishing work going home and doing nothing just relaxing for a few days. She was so excited and looking forward to having nothing to do and right then and there I wanted to be her. Now let’s be realistic here I don’t know this lady. She may have a stack of issues to deal with and life may be far from perfect but in that moment I wanted to be her. I wanted to do nothing.

I wanted to do nothing 

Think nothing 

Worry about nothing 

I wanted to have a job which I could leave at the office and come home and do nothing.
As I thanked the post office lady for my parcel I smiled and walked away actually thinking jammy cow. I was actually peeved at the woman for not having to do anything.

I was jealous at her and frustrated with myself.

Why don’t I make life easier for myself?

How do I get myself here?

Why do I may the choices I do?

As I walked away from that post office I found myself laughing at myself, giggling at my reaction.

I reminded myself that yes whilst I may be completly exhausted at times, I am never unfulfilled.

That whilst often my brain feels like it may explode, one smile from my children can make it all seem worthwhile.

Thats whilst I honestly have no idea how I got where I am, it feels right.

I do hope that post office lady had a weekend of rest and relaxation and I hope it was exactly what she needed, mine was very different. It was hard, tiring and at times to messy but it was mine and it that it was perfection for me. 

I may not choose the easy pathway in life but i know I have chosen the right one for me.

Yes I may crave a day of nothing now and again but I will never swap my life for another.

Because somehow my life became perfect for me. 

Perfection in Wales 

Holidays scare me, I’m in a place where things are out of my control. I read reviews over and over again making sure im not wasting the money we pay. I also have to trust that the place in which we are staying is clean. It’s not that I’m a clean freak but having a complex child requires a certain level of hygiene. 

It’s partly this and a few other reasons that we decided to invest in a tourer caravan. Firstly we could go where we wish but also I could have some control over my environment (control freak much). 
Anyhow these last few days we have been  on our maiden voyage testing out our caravan. We didn’t want to travel too far from home for our first trip whilst we found our feet, so a trip to North Wales was planned. 

We stayed on a lovely site called Plas Farm and when I say lovely I really mean it. From the moment we pulled on to the site I was relaxed. It was obvious that they hold themselves to a high standard because even in the middle of the Welsh countryside the grounds were spotless. We were running late as per normal for us and the reception had closed but thankfully we had already received a call from the site and we knew which pitch we had been allocated and where to find the key for the disability facilities. As we pulled up to our pitch we couldn’t believe how beautiful it all was, we had spectacular views in all directions. The pitch was well set out and it was easy for us to set up.

 My girls have an obsession with toilets ever since they were little they have had to check out the loo’s and like myself they have high standards when it comes to peeing. There was no disappointment, the toilet block was spotless and I don’t mean just clean I mean spotless. The showers were immaculate and the set up wonderful. They even had free hairdryers which was a welcome addition. 

Honestly our stay at Plas Farm was amazing. Nothing seems to be too much for the owners. They were so helpful in all ways.

We had a wonderful four nights enjoying the peace and quiet. The boys slept so well, I even managed 8 hours one night. 

We had an amazing time exploring North Wales we visited Rhyl a place I had loved as a child. It’s changed I think or maybe I have. Some memories shouldn’t be revisited or maybe some are a little too tied up in pain. 

A trip to Llandudno was a welcome one, I so love this town, it was such fun to introduce my boys to the pier. It was too windy for the cable cars so obviously we must return in the summer. 

On our last day we took a drive to visit The Glassblobbery a chance leaflet pick up in Tesco let to a Facebook obsession and real need to visit and we certainly wasn’t disappointed. It was incredible watching Dave make a giraffe from a stick of glass. Watching it come to life in front of you. Even my big boy enjoyed it and that says a lot. I fell in love with many items and was so lucky that Alan treated me to a beautiful drangonfly. I am now planning a new order. The Glassblobbery is certainly worth a visit. 

All in all for our maiden trip it has certainly wetted our appeitite for more. I cannot wait for our next adventure.

Be your own hero

From the moment I saw this top I knew I had to buy it for my son. In fact I wished it was in bigger sizes for all my children. You see I always tell my children to be “there own hero”.

I’m not talking about Batman, Superman flying through the air fighting bad guys kind of heroics.

I’m talking about being the best people they can be in their own lives. Doing their upmost to be the best versions of themselves.

I want them to shrive for more.

I don’t want them to live their lives just doing enough, I was them to always do more.

I believe in life we always have two choices no matter what we are facing. To walk this journey with grace and compassion or to be angry and resentful.

I cannot promise my children the perfect life, it doesn’t exist. Everyone, everywhere has their own personal struggles. Its how we deal with these struggles that defines who we are.

I remember vividly a discussion my husband and I had after losing Livvy. We could allow ourselves to fall into despair and the pain of grief or we could honour Livvy by living our lives fully.

I want my children to live fully, love fiercely and be their own heroes.

The world is there for the taking,

Whatever career they choose I want them to work at being the best in their field.

The friendships they make, may they honour their friends by being the best friends they can be.

Whoever they love, may they cherish and respect them with their whole hearts.

`Never give anyone or anything second class effort.

Right now this world is becoming a scary place to be, the rise of hate is frightening. May my children stand up against this hate with love. May they never treat anyone unfairly and may they always honour themselves by the way they treat others.

May they always be their own heroes.

Connections

I was sitting down last night wishing I could tweet anonymously so I could be completely honest with the world. That I could stop pretending that everything is ok and just be true. But then I realised that the whole concept of hiding isn’t truth. 

Sometimes I find this world so hard to understand and to fathom. It’s as if people don’t want to see others happy and enjoy in hurting and harming. It often feels that the selfish need of one is always more important that the needs of many.

Maybe I am as I was once told too emphatic?

Maybe I need to find a way to switch of my compassion. Or maybe I just need to find a peace between my mind and the world.

Does that sound crazy? It could, but sometimes I feel as if I am from another planet. As if my connection to this world is weak and failing. 

Oh my goodness listen to me, connection to the world how far out do I sound. 

But let’s be honest, isn’t the connections we make in this world part of our own definition. We come into this world connected, a son or a daughter born to a mother and a father, connections. Are we a sibling, a niece and nephew. Connections form from the moment of birth without any really effort on our behalf. 

Inheritance of birth is connection

These connections are our foundation, what forms us. Whilst we may not follow or at times understand the beliefs, reasoning of our parents but it’s these connections that educate us to grow, to question.

Friendship forming new threads of connectivity within the world. School pals, work colleagues and so many more.

Some connections are brief and tenuous whilst others become lifelong and strong.

Yet every connection defines us in some way. The realisation that we are not alone in this world comes with what should be the realisation that we are also responsible for others.

Yet this is the internal struggle I am facing right now. The endless battle that my mind wages against the world. 

How and why can suffering happen? 

How and why do people allow it? 

Why does it feel like humanity is losing the world to greed? 

I’m tired of being faced with selfish behaviour some my own.

I’m exhausted with people holding money over life.

Judgement not compassion.

Control not freedom.

Bigotry not acceptance. 

I want to hide away from it all right now. Behind the anonymity of untruth. I want to not care for a while. To not worry about the feelings of others. To be selfish but free.

Yet I know I cannot not, because as much as I want so desperately to find peace in my mind it’s never going to be found in untruth.

I have to venture on, somehow finding a new place of truth whilst desperately seeking a way to find harmony for my mind. 

Any suggestions? 

Trolling should be a criminal offence.

I love the internet, it has widened my world more than I could have ever imagined. I have met and become friends with people that wouldn’t have come into my life without the wonderful world wide web. I have experienced friendship, support, advice and so so much more.

Yet in the mist of all this positivity there are some that use the internet just to be idiots. They hide behind their keyboards to insult, mock and bully. They are cowards in the worst form.

I personally have received some vile emails and comments, people mocking the death of my child, my size, my life. They have crawled out of the their pits of slime to abuse, insult and tear me down. Their words have hurt and scarred.

But who do I get angry at?

They hide behind user names and false identities.

Did I mention they were cowards?

Thankfully Katie Price has decided that she has had enough. After years of her severely disabled son Harvey being mocked and bullied online she has started a petition calling for online abuse to become  a criminal offence. I stand behind her 100%. Whilst she may live her life in the public eye this never gives anyone the right to abuse her  or her child like this. No one has that right ever. Yet here on the internet these trolls, these cowards are free to continue their evil without any comebacks. This has to change. Please join Katie and stand up against these trolls, sign her petition.

We need to make a stand against the horrific abuse people are facing on a daily basic. Racism, homophobia, sexism and so much more. This isn’t a question of free speech its hate in the purest form. It’s time to say enough, sign the petition and also email your MP and ask them to support this and lets get this discussion happening in parliament. Lets bring these cowards out into the open and make them accountable for what they posting.