Category Archives: Uncategorized

My favourite photo

This was taken in May this year and it was the first photograph of Daniel without his NG tube. It isn’t my favourite because it’s the first without his NG but because of my relief of seeing that smile after surgery.

 

There is nothing worse that handing your child over to surgeons and theatre staff, you have to trust them with your heart. This gastrostomy surgery was the first we had faced with Daniel and nothing could have prepared me for the fear I felt as I left the theatre, my legs literally felt like lead. I could barely breathe for the hours he was in down.

So this photo is my moment, the moment I could breathe again. 

My son

I looked around the courtroom convinced everyone could hear my heart beating in my chest.

I could barely breathe, could barely trust in the moment.

“Congratulations to you both on your new son.”

It was official

It was complete

This precious gift was now ours to call our own.

Yes i cried, to be honest with the amount of adrenaline pumping through my body i was surprised i didn’t burst into dance.

My heart exploded, the love i had held on too wrapped in chains of fear was now free to fly.

My son

My beautiful precious boy.

Adoption is a journey of pregnant moments.

Full of expectation,and excitement but also full of pain and fear.

A free-fall into the unknown.

A parachute silk woven in faith.

I cannot say its been easy,

A labyrinth of broken promises and painful expectation.

Yet whilst the scars will take time to heal.

Whilst the emotional burden will take time to lift it is with no doubt in my heart that i can say

He is worth it all and so much more.

My son

My precious boy xxx

 

Sixth form style 

So my daughter has just finished her GCSE’s and i was expecting her to relax and have a few weeks not thinking about school, tests etc etc. Erm no she is now driving me mad talking about her style for sixth form. You see she finally gets to escape the uniform she has hated for the last five years. The lovely burgundy blazer that can never be removed even in the hotest weather and the white blouses that never ever fit right.
Yet whilst she hated the uniform it was a comforting place to hide within. Everyone having to wear the same does stop the judgement, well a certain amount of it as anyone who has a child in senior will concur that teenagers will find any reason to argue and tease.

So sixth form is a big deal for my baby girl. Its a time for people to see her beyond the uniform. Its exciting and scary at the same time. She has to find her own style in the confines of the prescribed restrictions.

She is excited but nervous.

Last nights conversation was regarding her bag. For many years due to the number of sporting activities she has done she has always had to have a backpack of some sort, one large enough for sport’s gear, school books and drinks etc. So returning back to school with no sports obligations she can now  look at all styles. She is now wondering what would be best “Tote or Backpack for college?” 

Whatever she chooses Im just hoping 6th form will be the where my girl can find her place. The place where she realises how beautiful and amazing she is whatever she is wearing and she learns that her style is whatever she wants it to be.

 

Writing when it hurts

Sometimes I get scared to write, scared to allow the truth to flow through my fingers. I preach about transparency and owning my truth yet at times my reality frightens the crap out of me.

Right now I feel on the edge of cliff I can see the rocks bouncing down the sides disappearing under the waves and I wonder how long this ridge will hold me. I can feel the erosion burning up inside of me, my will, my strength slowly crashing towards the water.

To say there is a lot going on in my life right now would be a massive understatement, the stress of exams on my girls has been worrying. Watching them tie up their hopes and dreams in pieces of paper is heartbreaking. Their value should not be decided by a cluster of standardised tests.

But this is the truth of life isn’t it?

We search for our own value in others judgements, others tests, others expectations.

I don’t want to do this anymore, I don’t wish to turn myself inside and out by the expectations my anxiety has created or those that don’t matter.

I cannot be all things to all people and cannot or will ever be perfect, yet i live each day berating myself for just this.

See this is maybe why I should have stayed quiet, yet a wise woman told me that truth can heal and that truth can set you free and that I needed to continue to write.

So here is my truth, the strive for perfection is an never ending quest, yet it also the biggest load of bull I have ever been told.  Perfection is a farce, something that can never be achieved, never be obtained. You see perfection comes with chains where truth comes with freedom.

Its ok for me to admit I am overwhelmed right now, to admit that anxiety is eroding my soul. That I want to run away from the world for a while or to simply just find some peace to calm my mind. It’s ok to admit I’m human, I hurt, I cry and at times I will break.

This is my truth.

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.

 

 

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.

To important for bias.

Have you ever wondered how you view life?

How we each have our own unique way we understand, commute things.

How our own life’s experiences relate to our understanding.

I was once told by a detective that there is nothing more confusing than eye witnesses. How five people could watch the same event unfold yet describe it back in extremely different ways.  How bias and expectation could change how they saw things.

I’m seeing this greatly today in the current political sphere especially around the subject of the NHS.

How people who have never had to use the Health service or only once in a blue moon are falling for the Conservative facade of a failing system.

I’m so tired of reading that more money won’t save a failing system or the biggest myth that doctors are asking for unfair contracts.

That privatisation is the only way to save our healthcare.

Bullshit and lies.

On July 5th 1948  Aneurin Bevan launched the first NHS hospital, his philosophy was simple. A service paid for by the people through taxation but all healthcare given freely at the point of delivery. The cost through taxation was to be fair as people would pay according to their means.

It was and still is one of the greatest achievements of any government here in the U.K. The NHS saves lives every single minute of every day. The Doctors and nurses work tirelessly and are often under appreciated for the wellbeing of everyone.

When a patient turns up on a surgeons table, he doesn’t stop to ask before he makes his incision to check the man can afford his fee, the surgery costs. No he works hard to save or to give a better quality of life.

The midwife preparing to deliver a baby doesn’t check the financial wellbeing of the mother. No she is too busy checking the physical wellbeing of the child and the mother.

A life is a life, one is not valued above the other and that’s the way healthcare should be and should stay. One for all, free at the point of delivery.

Let me tell you about my experience of the NHS. I was actually one of those people that moaned about waiting lists, moaned about crowded GP Surgeries. I was healthy, my children were healthy it was easy to moan from position of healthy privilege.  Then suddenly my world changed. My beautiful daughter became a regular visitor on the children’s ward. Nurses started to become my friends and Doctors became literally her life savers.

The NHS started to extend into my home, prescriptions, medical equipment, Physio things needed to help keep my daughter well, help keep my daughter alive.

Not once before an emergency seizure medication was given was I asked for my bank details. Not once did they turn around and say “I’m sorry you cannot afford this”.

Because guess what, I wouldn’t have been able to.

Already this year Doctors and nurses have saved the life of my son. They worked through the night, standing by his side. Oxygen, high dependency machines.  The NHS continues to work to keep him well, only today did our wonderful community nurse come to take bloods and swaps.

Our NHS is something that here in the U.K. we should be extremely proud of. Privatisation doesn’t work, I only have to look to other counties for evidence of this. Insurance companies refusing to pay for treatment, disabled children going without equipment, because rules have changed and what was once entitled is no longer considered necessary.

Privatisation works for those that can afford it. It’s as simple as that.

Our NHS is not dying it is slowly being strangled by those that wish to exploit the system for their own personal gain.

Those that do not care about people just pound signs.

I’m tired of seeing photographs and reading stories of people being left in corridors in hospitals waiting for treatment.

Does this happen?

You Bet.

But it is not because a system is failing but because a government will not fairly fund the system. We are not running out of beds because they are all taken up by asylum seekers, there are beds. Wards and wards are being left empty simply because the government will not fund the staff needed to keep them open.

This is the truth, the government are risking lives for no other reason than to force a public service into privatisation. So that the services can be slowly deemed as failing and the only option left is for the white knight of a private company to come in an save it. A wolf in sheep’s clothing.  No private company can offer a service without a profit its as simple as that and profit always has and always will come at someone’s cost.

Our cost, the millions of people who work day after day to make ends meet. Who though no fault of their own find themselves in need of treatment.

Our NHS has probably been there for most of our lifetimes. It was there when we were born, when our children were born. When we have needed it.

Now it needs us.

It needs us to drop our biases and work together to save it.

It needs all of us to realise that one day we may need to use the NHS to save our lives and to fight now to make sure when that day arrives it is still there to do so.

Doctors, nurses, medical staff all need to know that we stand beside them. That we are not falling for the right wing media hype that the crisis is their fault, mismanagement, lack of compassion, egoistic junior doctors.

We need to stand together to fight against the lies that the NHS is dying and fight to save it and restore it.

 

10 Ways To Support Your NHS from the NHS Support Federation 

1. Sign the NHS supporters’ pledge
If you haven’t already done so, please sign our petition – and encourage your friends and family to as well.

 

2. Lobby your parliamentary candidates
Contact your MP and other parliamentary candidates. Give them key information and ask them what they are doing about it. MPs use the content of their mailbag as an indicator of what the public care about. Sending them a letter takes a few minutes using our platform, or you could make an appointment to see them. Alternatively use our lobbying tool.

 

3. Follow us on Twitter and help spread the word
Retweet links to reports and infographics. This is a good way of highlighting key facts on funding or privatisation and getting others involved in doing the same. start a ripple and watch it spread. Join in with mass tweets where NHS supporters collaborate to promote a single message.

 

4. Join a local campaign group
See if there is a local NHS campaign group in your area, to join and help protect local NHS services.

 

5. Help as volunteer researcher
You may have just the skills we need to gather and analyse information. Contact us if you have some time to help us with internet or desk research, james@nhscampaign.org
6. Distribute campaign materials in your neighbourhood
Print off a supply of campaign flyers and post them around your neighbourhood. If you feel like talking to people, then ring or knock before you leave the flyer. Some NHS supporters set up stalls in their local shopping centre or railway station to talk to residents and collect support. Try and encourage people to visit this website, find out more and to sign the NHS pledge.
7. Distribute our campaign materials at work
Email links to the facts and NHS news that stand out the most to your friends and wider networks, it will help to get their attention focussed on what’s happening and why. In a more traditional way, feel free to print off pages from our website to copy and circulate them.
8. Write your local paper or take part in a radio phone-in
The letters page is one of the best read parts of the paper so can help to let local people know what is happening to their NHS. Use the briefings and key statistics to help you. Don’t just shout at the radio, why not phone in them and give them some of the facts.
9. Ask your trade union branch to affiliate
If you’re a member of a trade union, encourage your local branch to affiliate to our campaign.
10. Donate to our campaign
We rely on the help and generosity of NHS supporters to run campaigns and organise research. We are an evidence based campaign, so your donation will help to establish what’s happening and to get it into the media and then to the public.
Setting up a direct debit is particularly helpful as this can help us to plan, research, and coordinate our campaigns more effectively in the longer term. However, one-off donations are also gratefully received and used  to protect the core principles of the NHS.

We cannot stay silent anymore, we need to be asking questions of this government, demanding that they protect our NHS. If we don’t speak up now it will NOT be there when we need it.