Living like Livvy

So it’s finally here, a years worth of work, a lifetime of memories all collated together in “Living with Livvy.”

I’m so excited to share my girlie with you all, for you to read and learn how incredibly brave and courageous she was. I’m also feeling extremely vulnerable as well. Here in these pages I have not held back, I have opened my heart and my soul and its laid bare for you all to see.

It’s not been an easy journey, i have returned to places in my mind I was trying to hide from. Revisiting some of the hardest moments I have every faced.

Yet it will be worth it, if this book educated one more person about Rett Syndrome if it raises more funds for Reverse Rett Uk it will be worth it.

So people, I am laying out my heart and soul here for you all so please, please support me in this venture. Go visit Amazon and purchase my book and help me raise much needed funds, help me help those working tirelessly to one day have Rett syndrome cured. One day have this diagnoses be one not of fear.

It can happen and it will happen,  let’s help  make it so.

Please visit Amazon and purchase the book, please let your friends, family, coworkers know about the book. Share this post on your social media, lets get “Living like Livvy” out into the hearts of minds of everyone. Lets make Livvy”s legacy really one of hope, lets do her proud.

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.

To scared to voice my dream

Have you ever wanted something so desperately that you actually cannot voice your desire?

That the fear of hearing the words outloud is so scary that your stomach does flip flops.

That when people tell you to release your hopes into the universe it feels like a gigantic scam to make your world tumble down.

This is exactly how I have felt about the adoption of my new son. That if I actually shared the ins and outs of the situation it would actually explode in my face, my heart.

It hasn’t been helped by social workers who should have the words “hopefully” and the statement “it should” ripped out of their practice handbook. The hedging of their bets or professional distance is nothing but frightening for an adoptive parent. 

We need to hear “of course” or “it will“.

I honestly feel as if I have been walking on eggshells this last year. From the moment we decided we wanted to adopt our then foster son my heart feels as if it has been ripped out of my chest, trampled on then replaced. It’s been hard and the reason I haven’t really shared this journey here is simply because I couldn’t voice my fear. 

I couldn’t allow the inner demon inside my head any space here on this platform. It was doing enough damage inside my head.

“You aren’t good enough”

“Adoptive parent, you, ha really”

“It’s going to fail”.

The adoption process isn’t easy, I guess it shouldn’t be. The assessors actually have the lives of children in their hands. They have to probe, explore, question. 

“How did you feel when this happened?”

“How would you cope with this?”

And the big one

“Why adoption”?

Your answers of course have to be the truth but I have woke night after night with fear that my truth wasn’t enough.

Thankfully, my truth was enough and last week we found out that the judge has signed our adoption order and in a few weeks our boy will be our son.

I cannot tell you how excited I am, how much it matters to call him mine. I am simply on cloud nine. My heart feels full and I’m sure I haven’t stopped smiling since I heard the decision. 

I may not be able to write down our complete adoption story yet. It’s still a little too raw and it’s not actually at the end point yet. I still now wait impatiently for the date of our celebration hearing and my heart will still probably jump at the delivery of the morning post for a while yet.

But I will state this here, our adoption journey has been hard, we have cried many tears, had many sleepless nights and had way too many stress headaches. 

Yet I promise you this, every stinking moment of this chaos and fear has been worth it, my son, he is so completely worth it. 

#Earlymomentsmatter

Completing my degree in Therapeutic Childcare last really drove home the importance of a child early years. The impact early negative experiences could have on the whole of a child’s life. The need for awareness and support in this area is high and so much more needs to be done to protect our children. This is why I am truly happy today with share with you the UNICEF campaign #Earlymomentsmatter.


During the earliest years of life, brain cells can make up to 1,000 new connections every second – a once-in-a-lifetime speed. These connections contribute to children’s brain function and learning, and lay the foundation for their future health and happiness. A lack of nurturing care – which includes adequate nutrition, stimulation, love and protection from stress and violence – can impede the development of these critical connections. 

According to a recent series in The Lancet nearly 250 million children in developing countries are at risk of poor development due to stunting and poverty. But the need for greater investment and action in early childhood development is not limited to low-income countries. Disadvantaged children living in middle- and high-income countries are also at risk. UNICEF estimates that millions more children are spending their formative years growing up in unstimulating and unsafe environments, putting their cognitive, social and emotional development at risk.

 

Investment in early childhood is one of the most cost effective ways of increasing the ability of all children to reach their full potential – increasing their ability to learn in school and, later, their earning capacity as adults. This is especially significant for children growing up in poverty. One 20-year study showed that disadvantaged children who participated in quality early childhood development programmes as toddlers went on to earn up to 25 per cent more as adults than their peers who did not receive the same support.

Early childhood development interventions, such as the Care for Child Development package that includes training community health workers to teach families about the importance of playing with their children in a way that stimulates healthy development can cost as little as 50 cents (USD) per capita per year, when combined with existing health services.

 

UNICEF is calling for governments to increase investments in early childhood, expand health and social services offered to young children, and strengthen support services for parents and caregivers.

My job as foster carer has brought me into contact with children whose early lives have left them for the want of a better word damaged. There whole personalities have been formed in environments of fear of neglect. They brains were hard wired in worlds that weren’t safe. It’s heartbreaking to watch a child who doesn’t know peace.

Here is the UK today is Valentine’s Day, let’s share the love and share this campaign. Let’s celebrate the love of our children and the worlds children and let’s support UNICEF in their campaign to protect our children.


1000 connections in the first 1000 days let’s make them positive ones.


#earlymomentsmatter

Love revolution 

Well what a week, many of us are feeling a little lost, afraid and extremely angry. Still whilst we may not have expected the results of the USA elections we still need to hold on to hope.

Hope that Donald Trump is more than the media is portraying him. 

Hope that those that voted for him did so for reasons beyond racism and bigotry.

Hope that the next four years will be ones of respect for all people regardless of their gender, religion or sexual orientation.

Hope that the new President will work towards peace not more war.

I have to hold on to this HOPE

Yet I cannot just hold on and just wait and see, I only have to look at our own government to see that value is not placed in all people. 

So I have to move forward and be,

Hope in action.


So I’m calling on you all to join me, 

Let’s start a love revolution.


Step out in love, reach out to the communities that will be feeling afraid, unvalued, disrespected and remind them they are loved.

Stand up for the vulnerable, fight against oppression and tyranny.

Stand up in Hope and stand strong in Love. 


Never give up.

#loverevolution 

How is it October already ?

I have been reflecting about this last year and cannot actually get my head around what an incredible year 2016 has been so far. Of course the highlight has to be the decision to adopt my little one he has brought such a light into my life I cannot find the words to convey what a gift he has been. My friend described me as “radiating joy” the other day and I think she may be right I am so happy and so content at having another in my heart. Being back at toddler stage is very different now than it was ten years ago but I am loving every minute of it. I mean just the wide range of clothes out there now is enough to send your head into a spin. 

Yet besides this major change in my life I have seriously took this year by the horns and literally made the most of every second. I know this because right now my body may ache with exhaustion (whoops). 

I have stepped out my comfort zone in so many ways. Learning and participating in politics, attending and speaking at the Labour conference and getting involved in the local campaigns has been brain aching but also so fulfilling. I am actually scaring myself with how much I really enjoy this arena and the people I have gotten to meet and I am excited to learn and develop more.

I have also completed my degree and actually graduate this week, how exciting is this a childhood dream finally coming true. 

Still I think my real steps forward have been in friendship. Over the last few months I have said yes to invitations. Said yes to group meals, coffee mornings and lunch dates. A dear friend of mine told me that “I was scared of friendship” and she was so right I wrote here often about my desire for deeper truer friendships but the truth was I was hiding. Pulling away from any situation that required me to be open and vulnerable but her call out challenged me to say yes to being vulnerable and exposed and I’m loving every minute of it. I’m still a work in progress but honestly I am so grateful for those that haven’t given up on me. 

2016 has been an emotional rollercoaster I have laughed and I have cried and it’s only October but to describe 2016 I would simply have to say “it’s the year I began to live fully’. No more holding back, I’m loving life right now and yes it isn’t easy at times but isn’t that what makes it more worthwhile. The achievements, the moments.

I cannot believe Christmas is only a few months away, this year does seem to have flown by. Yet I am happy to hold on to 2016 a little longer it’s been a very special year.  

It’s October 

October is Rett Syndrome awareness month and normally each year I am sharing here and everywhere as much information as possible to raise the awareness on this syndrome. 

This year I have struggled.

Not because it isn’t as important anymore because it definitely is, but because I am angry.

I’m so angry that Rett Syndrome is still taking children from their parents. 

That Mother’s, fathers ,sisters, brothers grandparents are broken hearted.


I’m angry that my friends have to go to sleep each day just praying that their child will awake in the morning.

I’m furious that so many are in hospitals fighting infections, seizures, recovering from seizures. Families separated, families struggling. 

I’m frustrated that no matter how far the research is coming Charities are still being the ones to fight for funding to save our girls. That government funding is few and far between. 

It’s another year, another October and we had lost another. 

Another too many

Another too soon 

Another heart broken.

So yes October is Rett Syndrome awareness month but for those fighting against this syndrome October is another month in a year full of battles, heartache and fear.

I’m so angry at Rett Syndrome. 

We need a cure and we need it now. 

Inspire or destroy?

Last week I was lucky enough to get to listen to the inspirational Nick Barwick. Nick is a motivational speaker who came to a fostering meeting to share his experiences as a care leaver. His story is incredible, he has faced adversity, pain and suffering throughout his life but still found the strength and courage to achieve his dreams, he defied the odds and he overcame.

Nick is passionate about sharing his story, he wants the success stories of life to be shared. We need our children to have hope, that if they are struggling and finding life a struggle they can remember that where they are right now is not where they need to end. This is doubly important for all children within the looked after system, they especially need the reminder that there is Hope in this world.

I took an awful lot away with me after listening to Nick speak, but what has been twirling around in my head since I left the meeting was the impact of ‘words.’

Let me explain a little, as Nick was sharing his story he spoke about being told by some professional in his life that he would not achieve, academically, financially and emotionally, and how these words for a long time became a self fulfilling prophecy for him.

How the words spoken to him became the words he spoke to himself.

Words have power!

They can inspire but also they can destroy.

words

Hearing Nick’s story just hit home how important our words are,

How as Mother’s, as fathers, as teachers, carers, our words have an impact on hearts.

How as a friend, a wife, a sister I need to use my words wisely.

How often have we let words spoken to us bury deep in our hearts?

How what may have been a passing comment has be able to consume our minds.

Someone else’s opinion become our truth.

I know I can look back in my life and raise my hand numerous times for when words spoken in hate became my reality.

“You won’t pass it.”

“I wouldn’t even bother’

“You are not good enough”

“Who would love you?”

How I let these lines of letters sink deep into my heart like an anchor dropped into the ocean, dropping slowing until they find a place to settle and hold, hold on tight.

How I  have allowed hurtful words to crawl under my skin until I believed them completely, burying under my skin into my blood to pump through my veins, straight to my heart.

Burrowing deep until I owed them as my truth.

Thankfully like Nick I had someone in my life who challenged me to question these words. To remind me that my future was mine to create.

That it was up to me to write my own story. 

story-of-your-life

I’m still a work in progress, my story has many chapters left to write.

I’m still learning to throw away the words that hurt, to erase the words that are wrong and untrue.

To protect myself from words that do not inspire or encourage.

I’m creating my own vocabulary and as I do this I hope to create another for my children.

I want their story to be one of adventure, excitement and hope but what I want most of all is that the biggest chapter that they write will always be one filled with love.

I pray that story is one of knowing, knowing how loved they are. 

Hope in me.

I  am scared of Hope.

That crazy thing that stirs your soul,

That wondrous but frightening emotion that wont let you go.

Encouraging you to believe,

To trust in the future, in the plan.

I cannot hold on to hope the way I wish I could.

The fear of being let down, or broken promises hold my heart back.

I struggle to get excited, the what if’s or the maybe’s hold me hostage.

How I wish I could just embrace hope.

To just let the joy of expectation flow free in my heart.

Let the promise fill my soul.

 

How I wish I could just embrace this,

Scream out to the world my hopes, without fear of embarrassment if they fall through.

I hold tight to my dreams, lock them away in my heart, scared that they wont be.

I so admire those that can step out in faith loudly, as if they are shouting to the world this will be. I step out but I do it quietly, one foot forward but my heart is still holding back.

My friends tell me to believe, that all will be well and my heart it so desires to trust,

To find freedom in faith, in hope.

I know I’m a work in process, at least I’m acknowledging the fact that I need to move forward

To start my walk towards hope.

I so want to,

I want to free myself from the fear of the past and step out in the truth of the future.

It’s not easy, but as I work towards hope,

Maybe you can have hope in me.

No turning back 

After last Thursday’s EU referendum I have been struggling. It’s hard to focus when your whole view has changed. When the country you love seems so divided. To be fair I have been feeling so lost, adrift on a boat that has no navigation system and no stars to help me map my way.

Right now here in the UK we have been set a new course, it’s uncharted waters and without a strong captain of the ship the journey forward looks rather scary and certainly won’t be easy. Yet I’m reminding myself that it’s not only the Captain that sails the ship. In fact the Captain would never cast off without his crew behind him, supporting him, helping him navigate.

This is what we the people of the U.K need to do right now. We cannot change the fact that we have set sail, many don’t want to, but we can work together to make the journey smooth and safe for all passengers and crew.

Uniting to move forward making sure that the new rules, the new policies that are put in place benefit all. We cannot continue to have a society where the poor are victimised plagued by bias reality television programmes that allows this government to portray all by some. We cannot continue to have hard working families needing to use food banks. 

It cannot go on that our youth feel so lost and disillusion feeling as if the future is not theirs anymore.

Our country need to move forward creating growth and opportunity celebrating business and enterprise . We need to see expansion and the creation of jobs. Investment in social housing the NHS and all public services. Keeping them true to the values of serving people not wealth. 

Yet most of all we need to start fighting to regain our unity. Over the last months we have allowed the language of this country to change and I refuse to accept that this our future. That our respect for each other has disappeared. I don’t want to live in a country where racist bigoted words are allowed back into conversation. Where it’s acceptable to treat another as if they don’t belong. 

We are better than this.

We are so better than this.

This country is struggling the effects of the austerity cuts are hitting most. We need to stop being swayed by the lies that are being printed to deceive us. Trusting the wolves that wear sheep’s clothing.

It’s a time of accountability, as we move forward let’s demand that we have transparency from our politicians. Let’s educate and inform ourselves better so we can no longer be lied to. 

Let’s unite to make this country fair for all not just some. 

The EU referendum brought many out to vote. Excited by the process of democracy continue with the same enthusiasm for the next local elections, general election.

Cherish the power of your vote and together we can create a society that makes us proud again.

Let’s not allow the captain to sink this ship taking only the elite in the lifeboats to safety.
We all have the right to a safe voyage but right now we have to fight for it.