It’s not our choice

Having a disabled child wasn’t part of my life plan. I was shocked, confused and generally devastated at first. I had to slowly find my own peace with the life that I had and the disabilities of my child. But if I am honest there were times where I was frustrated and angry at the way her condition controlled my life.

I couldn’t holiday easily, we couldn’t get insurance to fly for a start and the fact  that there was always a high risk of cancelling, due to hospitalisation, illness etc.

I couldn’t work full time, there was no way I could meet all her needs, hospital appointments and therapies whilst being a productive employee.

I couldn’t have an evening out without proper planning in advance and hoping that I would get some respite that was few and far between.

At times I couldn’t even go to the toilet on my own without fear of her seizuring in my absence.

There were so many choices taken away from us all. 

But the reality is that my lost choices were nothing compared to what Livvy faced.

Right now my local council has decided that parents of children with special needs post 16 have to pay towards their transport to school. Their reasoning is that most parents have to pay when their child goes to college etc and that its only reasonable that we put towards this cost as transporting our children is expensive.

£600 a year, is this fair?

Lets look at this closely,

I didn’t choose my daughters school, I didn’t get to make a decision on league tables or the curriculum offered.

My daughter didn’t choose her school, she didn’t get to view different courses, or placements and come to a decision that was her’s. No the council and it’s professionals made the choice that this was the school suited to my child’s needs.

They didn’t consider the fact that every morning she would see her sister’s get up and dressed in a different school uniform and watch them leave with their friends.

They didn’t consider the fact that maybe she didn’t enjoy travelling 30 minutes each morning and afternoon to and from school.

They never considered that myself and many other parents like me struggle to be in two places at the same time often twisting ourselves up with guilt from missed performances, parents day and so much more.

No they made the decision on the best place to cater for her needs and I understand that. Yet why are we being asked to pay for something we had no choice in?

I am actually not saying that I have an issue with paying towards the service but I do think it should be in line with the costs I would have to pay for my other daughters. I don’t know many parents that have a spare £600 lying around and if someone mentions mobility to me again I may scream. Have you tried to fill the tank of a mobility vehicle on what our child receives each week? Do you drive to numerous medical appointments, pay for parking at so many hospitals for again reasons beyond our control, our choice.

Olivia didn’t choose to have Rett Syndrome, she didn’t choose to fight each day. She didn’t choose to have uncontrollable epilepsy and she certainly didn’t choose to lose her battle for life so early. 

I am so tired of seeing disabled people persecuted for something that is out of their control. Our children didn’t choose not to go to the local school, they didn’t choose not to be able to walk the journey on their own, backpacks on their backs as they laugh and joke with their friends.

They didn’t choose this life and as their parents we didn’t either.

Yet right now our local council are making parents feel as their children’s education is a luxury, a luxury that they have been funding. I’m sorry Walsall Council I completely disagree. You have an obligation to support our children with an education, the fact that these education placements are far and few between well that with your current funding and cuts to school is only going to become more of an issue and isn’t our fault or our choice. Do you not think we would love to walk our children to school, to chat with other parents on the playground, to be able to feel less alone in our already isolated worlds?

But before you harp on at parents already struggling to survive with reduced respite, reduced support,cancelled play schemes etc please remember this, these children, these parents they don’t have a choice.

Our lives, our children lives are far from what we had planned. When we celebrated their conception and decorated their nurseries we never imagined the lives we had yet to live.

We are trying, trying each day to make the best of it all. To love on our children with all that we have. To fight for therapies and support that will enhance their quality of life, and most of all we fight for their happiness, their chance to do whatever they dream.

Because whilst you may see them as expensive, we see them our hearts.

An artists dream

One of my biggest disappointments is that I cannot draw, craft or design. I so wish I could create something imaginative and interesting. I have to live my artists dream through the life of my cousin who besides being incredibly talented, is also extremely brave.  Last year she left her corporate position in London and moved to Folkestone to focus on her art full time.  A decision that i admire her greatly for, living her dream.

I hope I am right in saying Rebecca’s main art form is neon she has created some incredible pieces that have challenged and intrigued. Check out her work here or follow her on Instagram here. 

Recently she also opened up a physical and online artist-run gallery and design boutique gallery in her hometown of Folkestone.

SENTIENT: THE HOME OF DARK, WITTY, THOUGHT PROVOKING ART & DESIGN showcases the work of around 40 artists and designers.

The curators at Sentient have worked hard to select the artists and makers who best represent the Sentient style, aesthetic, themes and mentality. In particular, this means a taste for the dark, questioning, eccentric, deep and edgy in art, design and living. At Sentient, we wouldn’t exhibit nor offer for sale anything we wouldn’t happily have in our own homes (and indeed, do own works by most of the artists and designers at home). Nothing makes it to the gallery unless we love it.

One new addition to the gallery is the recent collaboration between Rebecca and Esa Evans.

Esa and Rebecca have collaborated to create these fun, contemporary and affordable necklaces utilising playful phrases Rebecca uses in some of her popular neons and prints. The font was built out by Rebecca to look like her capitalised handwriting, The necklaces are available in stainless steel or 18 carat rose gold plated options and are now available to pre-order, with first deliveries expected late May. Each will come within an embossed Esa Evans x Rebecca Mason box.

 

Right now Rebecca is offering my readers 10% off any order over £20 across her site including these stunning necklaces.

Use my code SARA10.

 

Go visit Sentient and check out the artists featured there,  including more collaborations Rebecca has done with other artists as I may be a little (lot) proud of my super talented cousin.

We have an Adoption date, but I need help?

I have been a little quiet regarding the adoption of our little man recently. You see since I wrote this post here about voicing my dream it actually felt as if my dream had crashed and burned.  Thanks to some missing paperwork from social services it has been delayed and delayed.

But finally its completed and now we have a celebration date for next month. Yes next month. I cannot wait, this little man will be an official Meredith. He has been my son in my heart for a very long time its nice for the paperwork to finally catch up.

I am so excited and seriously my smile could not be bigger. But if I’m honest the whole adoption process has been an emotional journey. Its left me anxious and at times really low. I think its because of this that I am finding myself stressing over the details of the celebration day. Obsessing over what we are all going to wear. I know clothes are  trivial in the big scheme of things but right now I just want the day to be perfect.

So i’m on the quest for an outfit for little man and one for me and one for Brodie my sixteen year old.

So I’m throwing it out to you all, help this plus size mama find something thats smart, pretty and comfortable for the court.

Help me find a really smart, super cute outfit for my little man size 3-4.

And something pretty but fashionable for my 16 year old Brodie.

 

So my friends and awesome followers, help me out with some outfit advice before I completely lose my mind.

 

How, why and what do we do?

I wasn’t going to write today.

My heart is broken.

I wanted to hold my children close and never let them go.  As a mom that has lost a child all I could think of is those parents whose hearts are now forever broken. Their children out on an what should have been a fun night  watching a pop star then cruelly taken away.

Innocent, every life taken last night in Manchester.

They did nothing wrong yet paid the ultimate price.

How did this happen?

Why did this happen?

Right now there is no answers, we don’t know the mind of the evil individual that took these precious innocent lives.

There is talk of reasons,

Was it his faith?

No, islam is a religion of compassion and peace.

He has no reason beyond hate.

Nothing makes this right, nothing.

It was a cowardice hateful attack .

Right now the terror threat level in the UK has been raised. The whole country is feeling scared, feeling afraid.

Many of us want to stay home, cancel events and I completely understand this.

What can we do?

We can love

 

We will  not allow terror to win, we will not bow down to hate.

We are a country of hope.

We will come together to stand together.

People of all faiths, no faith, will reunite against this hate.

We will remember the victims.

We will speak their names.

And may the name of the attackers fade into oblivion not giving them the notoriety they desire.

They are nothing.

They will  be nothing.

We are hope. 

We are peace 

We are love. 

 

My heart is in Manchester tonight.

 

 

My first baby show in 20 years

I attended my first baby show in over twenty years last weekend. To say I was a little excited is an understatement. I had won the tickets via a Facebook competition and once we got the ok from the hospital It was all go.

Saturday morning little man was  happy and well so we headed to the NEC. I wasn’t sure what to expect as my turtle is 3 in a couple of months. But due to his disabilities he is still in baby stages for many development milestones.

I had my mental list of things I wanted to check out and I have to say I managed to tick them all and some.

The baby show was well set out, plenty of room for pushchairs, wheelchairs and beautiful pregnant women.

The day was pretty awesome and one I so needed. I had a lot of fun and really enjoyed chatting to a lot of the store owners. I also loved spoiling my boy. I mean after all he had been through last week he so deserved a treat or two.

Our first purchase of the day was from the lovely Books and Pieces. The ladies were so lovely, after telling them that little man was blind they suggested some touch and feel books that he will love. The black and white books were suggested by our vision impairment teacher to encourage the little vision he has.

Our next stop was a store that caught my eye was Gigglemind  a company who have designed a car vision mat to inspire babies on journeys. Its a brilliant concept and one that caught my eye not for car journeys but because the colours are what we have been told to use it encourage turtles vision. I was so impressed by this product and as a special needs mom this was amazing as I had been looking at similar mats like this in special needs catalogues and the price difference is rather dramatic. Turtle is already enjoying his mat time. 

Due to his diabetes insipidus Turtle often has very dry skin and i have been searching for a skincare range that was gentle on his skin. Someone had recommended to me the brand Child’s farm so I was rather chuffed to see them at the show. They use natural free-from ingredients and essential oils to produce mild, kind and delicious smelling toiletries. Two bath’s in I am so happy with them. They are so light yet leave his skin feeling lovely.

A week ago Turtle had a Video Fluoroscopic  to check his swallow and after passing with flying colours we were given the permission to move forward with him and solids. He still swallows like a baby so it was important that we started with puree’s etc. For me knowing that he can only have a small amount of food I wanted to make sure that he had a quality product. I was really impressed by the Babease range. Created by a chef using the best quality locally sourced organic ingredients.  Turtle is impressed, and emptied his bowl rather swiftly.

My main reason for attending the baby show was to find myself a new changing bag. Turtle does not travel light and I really need a larger bag to accommodate his changing needs and the extras medical bits that we are now having to carry. After a wander around the show we settled on a PacaPod Mirano Black Changing Bag from Mummy and little me.  Its a lovely bag and seems to be working well. Stylish and functional.

I think my favourite buy of the day was a blanket from Babybird Blankets. Turtle cannot regulate his temperature so we have to have a blanket on hand at all times. The blanket is so beautiful.

I admit it felt a little strange being back at a Baby show, I had only been to one previously and that was when Kennedy was a few week old, she is 21 next month eek.

Besides the strangeness I had a really amazing time. I cannot wait for my next one.

 

 

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.