Bravery ???

I have been thinking a lot about how we view bravery, how often the word is used and how sometimes it can be detrimental rather than encouraging. How people mean to encourage yet in truth can do the opposite. 

I can only write from experience but there are times in my life when I have felt the complete opposite to brave yet have found myself surrounded by people telling me I am.

When Livvy’s was diagnoses and I found myself facing life with a child with a complex disability so many said,  “you are so brave” “ I don’t know how you cope” all statements were being said to encourage and celebrate me. Yet I was far from brave, I so wanted to run out of my life, to pick up Livvy and live in a world where disability could not enter. A world where Rett Syndrome was banished. I wasn’t brave, I was surviving the only way I knew how, encouraged by the bravery of my beautiful girl.

“I don’t know how you have gone on” this was a statement that haunted me when Livvy died. I was caught in a whirlwind of emotions. It felt like a two pronged comment, my mind actually spiralled for such a long time due to this statement. I mean how have I gone on? Do I not love my daughter enough that I haven’t just given up on life without her, what kind of mother am I? Did I fail her by not giving up? 

Nearly ten years on and I still have no answer on to the question “how I have gone on?” Seriously it has been through God’s grace and the love I have for her sisters and also the innate knowledge that she expected nothing less of me but to live this life fully and that she would certainly kick my butt if I didn’t. I was not brave, I was surviving. 

I still wish people would think before admiring another’s bravery because those words offered in love often becomes a noose around someone’s neck, pulling tighter holding those who so need to admit to being scared, to being vulnerable no safe place to unload. 

Instead please, ask them how they are doing? 

Tell them its ok to be afraid? 

Tell them them they are doing well but don’t ask them how they have got through it, because truly if you are waiting for me to get through my grief for Olivia you may be waiting a long time. 

Be a safe place for people to unload, cast no judgement about where they are at. Just listen, really listen and if you cannot find the words to support just hug them tight. I know there is no answers to the pain, no reason’s to the why but sometimes its just nice to be held. It’s not ok and it may never will be, but I am not alone. That means more than words. 

“Allowing others the space to be vulnerable may be the bravest thing we can do.”

 

 

 

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.

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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. 

Happy 17th Livvy xxx

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Today my daughter celebrates her 17th birthday, a birthday of pending adulthood the beginning of life on the road. Yet there will be no licence applied for or birthday hugs for me. Because my daughter is celebrating in heaven.

My heart is heavy today, the weight of missing drags upon it. 

I’m reminded of what is missed and what never got to be.

I’m trying so hard to focus on what we did and the memories we made, but 9 years will simply never be enough. 

I wonder what celebrations are like in heaven, do they have birthdays or is time and years past an earthly constraint? 

I wonder if someone has made her a cake, chocolate of course and are they singing her happy birthday again and again just to see the smile that lights up her face. Lights up your heart.

I wonder a lot, what does she look like, would her hair still curl around my finger? Does her blue eyes still sparkle with mischief? 

Sometimes I cannot breathe for missing my beautiful girl. My arms ache just to hold her again.

I often get lost in the anger, just so angry that I was robbed of my amazing girl. Bitter at the emptiness. 

But then I remember her, I remember my Livvy and her desire to live life to the max. Sometimes I wonder if she knew that she didn’t have forever because she packed so much in her days.

She loved people wholeheartedly, from her teachers to her sisters to us her parents. She has this way of making you feel like you were the only one in the room, as if you were so special to her. She made sure you knew she loved you. She didn’t need words her eyes were the windows to her soul, she looked deep inside of you, filling you with love. 

I am so grateful I got to be Livvy’s mom, I wouldn’t trade a moment, a minute. Even today in the minute of this extreme pain i know I would do it all again in a heartbeat. 

Yet today I’m allowing myself to be sad, allowing the waves of grief to wash over me. Allowing the missing to be.

But tomorrow I will move on, I will do what she wants me to do. Continuing her legacy of love. I will love on her sisters and the brothers she has sent to us to love. I will plan the Livvy’s smile events, our forthcoming tea party and those yet to be planned. I will continue on, being brave just as she was. Hoping and praying I’m making her proud.

Happy birthday my beautiful girl, how I wish you were here to celebrate with me. How I wish we could eat chocolate cake until we were both sick. How I wish, how I wish….

  
Happy 17th Livvy, may heaven be singing for you today. I love you my precious girl xxxxx

  

Simply worth it.

How do you do it?

How do you move forward?

How do you breathe again?

These are only a few of the questions I get asked often regarding grief. When people are lost in the pain, in the missing they need anything to hang on to. I know I did and at times I still do. 

Grief is a unique journey, no two people can face it the same way. Your heart is individual so your pain will be too. 

Some have to scream and rage and allow the anger to be free. Whilst others bury the heartbreak deep, hiding under layer of layer of pretence.

I don’t think there is a right way to grieve it’s about survival and that’s to be found in each of us differently.

At times I have raged against the world, screamed at God and actually hated others for surviving. While other times I have pretended, hid myself under a camouflage of “I’m ok”.

I think one of the worse grief moments I have faced was when I was told by another mum that “she wouldn’t have survived losing her child” as if the fact that I’m still here now is a disrespect to my beautiful girl. That I failed to love her enough. 

This makes me so angry as I would have only failed my beautiful daughter if I had given up. If after watching her face battle after battle to live, I chose not to. 

Grief is unique no one can understand the journey unless they are walking it. It’s like explaining a space walk whilst on the ground. You cannot fathom it, you cannot come close. 

It’s a personal journey that people have to walk on their own but hopefully not alone. 
It has its own timetable for each and everyone of us. Sometimes it’s five steps forward seven back. 

The only advice I would offer is to be kind to yourself and to be true. Don’t hide how it hurts because if you don’t allow it out it will twist up inside of you. Speak to others, share your pain with those who are walking alongside you. 

Remember those you have lost as they were. Laugh at the antics they used to pull, smile at their characters. 

I truly believe they never leave you. So talk to them, let them know what you are up to, how much you miss them. I chat to Livvy daily, remarking on what are sisters are up to or how I may strangle her dad. 

I was struggling to find the words to end this post. How do I explain my relationship with grief? How to convey how I would face this pain a million times over for Olivia. That although it hurts like crazy it is so worth it, because I got to be mom to this beautiful, brave girl. 

  

  

Then I read a post from the beautiful Ann Voskamp and this just simply says it all. 

  

I would pay the price again and again because simply she was worth it. 

Perfect sense

I was restless last night as I sat and tried to catch up with my weekly television programmes. I just couldn’t relax and I didn’t know why. 

I checked the oven, the doors and my diary but I just couldn’t work out what I was missing.

Then it hit me. 

I was listening out for Livvy, somehow I had stepped back in time to seven years ago. The Friday night ritual of Alan going out for the evening and me staying in caring for Livvy.

My mind was listening out for her noises. Her gentle snores or crazy giggles.

I was even waiting to eat with my sister and have one our much missed Friday night chats.

For those few moments I was in my before time. 

Before my heart broke.

Still I wasn’t allowed to stay for long.

Only seconds later the pain overwhelmed me. 

Like shadows slowly consuming the light.

My heart was beating so swiftly, my brain pounding against my skull.

Raw open wounds.

I don’t know why our brains do this to us? 

Flashbacks to moments we cannot hold on to.

Memories so real you can almost touch them.

I cried last night, gut wrenching sobs of missing.

Time really doesn’t ease your pain. 

I was so angry, the frustration of being able to do nothing dominated my mind.

Why,

Why,

Why?

Finally I could cry no more, my soul was empty, my tears exhausted.

I know I cannot go back, 

so many ways and so much time. 

But for that brief moment then I wasn’t broken.

For those few minutes life made sense.

Perfect sense 

First Aid Waves

The last two days have knocked the crap out of me. What I thought was just going to be a normal run of the mill First Aid course has actually be a major trigger for my grief.

Sitting there in the conference room when asked if anyone has ever used CPR my heart started to pound within my chest. 

My mind left the conference room right then, I was there back in the moment, the moment I have tried so often to forget. 

I breathe deep, drink a little water and try to bring myself back to the here and now.

Seizures “anyone saw a child seizure”, what ?? 

Yes too many.

Choking, Yes

Severe vomiting, Yes

Sometimes I don’t realise how much in life I have seen. Raising a disabled child opens you up to a world of medical practices, symptoms, treatments that many others will never face. 

Losing a child tragically, well let’s not go there. 

Too much 

and it just blooming hurts.

I’ve had to bury my head the last couple of days. 

Allowing the waves of grief to flow over me. 

Trying to change the horrid memories for good ones.

Burying them I guess.

Yet they won’t ever leave me.   

But life has to go on, 

I have to get my first aid certificate and will need to get it again in three years.

This is a requirement of the job I love.

So I ride the waves, 

Holding on tight to the good memories and learning to swim harder through the bad.

  

Grief is toxic 

I have travelled many roads in life but none has been or ever will be as long as grief.

Grief is a journey of twists and turns with gradients that rise and fall in a blink of an eye.

Sometimes the road is straight and the driving is smooth, then others are bumpy and hard to travel.

I honestly have no directions on this journey, I am beyond lost.

There are no guidelines or signs to help me through.

I’m just stumbling in the wilderness.

My heart is broken by loss, its torn apart by separation.

It crumbles a little more each time I see my children cry.

When they miss their sister.

When they ache to hold her. 

Grief is toxic.

It has no constraints, like a force beyond nature it invades the souls of many.

It cares not about age, about understanding.

From the young to the old it destroys.

I often wonder how to survive grief?

How to fight against an enemy so strong?

What weapons do I have?

Yet my heart is the victim and also the aggressor.

As it is torn apart by grief it still grows in love.

Love is an arrow that shoots into the very heart of grief.

The only defence.

The only attack. 

For once loved, one can love again.

For once loved one can hold on.

Though memories that curl around our hearts armour against destruction.

Grief may win many battles.

But it will not win the war.

Our Love will always conquer.

Because I was and always will be Livvy’s mom.

I knew her love.

I have her love.

In honour of Livvy

Saturday was an amazing day, we held a Livvy’s Smile Donkey Tea Party.

The sun shone for us, the donkeys behaved and memories were made.

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I had a truly wonderful time.

I got to catch up with old friends and make some new.

I got to listen to laughter as it filled the air.

I got to watch children cover themselves with chocolate and cream as they ate their cakes.

Donkey rides, cart rides and so much more.

Seriously it was awesome.

Yet as I sat at home editing the photos from the day my tears began to fall.

My heart just ached for the missing piece of my puzzle.

Whilst I was blessed with some amazing hugs from some truly incredible children my heart yearned for my little Tinkerbell.

Birmingham Donkey Sanctuary holds a special place in my heart.

Each corner is filled with the echo of my Olivia.

Those first steps she took defying the Drs.

The giggles as she rode her favourite donkey.

alvis livvy

The dirty looks she gave Amber when told to sit up straight.

So many moments, so many memories.

 

I was asked why we started Livvy’s Smile and why I hold events that bring me pain?

It is simple really we started Livvy’s Smile because we are so grateful.

So thankful for the wonderful memories we have stored from Livvy.

Memories that truly get us through the darkness and we just want to give that light to other families.

On Saturday we created those special memories full of chocolate eclairs and cool moms.

Memories that will give us hope through the hard times.

Why do I it when it causes me pain? 

Because I can and because I have to.

I was blessed to be Livvy’s mom, to get to call this amazing girlie my daughter.

Livvy changed my life. 

The realisation that we didn’t have forever taught me to live in the here and now.

To live a life full of laughter and love.

 

So yes hosting these events will always be bittersweet.

I’m sure I will always return home and cry for the missing piece of my heart.

But I will never stop working hard to create memories because each moment, each memory is in honour of my beautiful daughter.

Every smile I see brings her closer.

 

Yes, I know my heart will always ache,

Grief is relentless.

Like a snake it slowly twists around your heart until you cannot breathe.

Your body craves for one more breathe, one more moment.

So as the tears fall I know they do so in honour.

Each teardrop is formed in everlasting love.

Livvy is part of who I am and who I always will be.

Livvy’s Smile is testimony to eternal love. 

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I promise

The beautiful Katt from The Curvy Cupcake  inspired the amazing  Debz at The Not So Secret Diary of a Wannabe Princess to set us all a challenge, the #PlusSizePromise.

The challenge is to blog five promises that we make to ourselves this summer.

Here’s mine.

 

1. Get my legs out, I’m tired of being hot and bothered every summer. This year I’m going to get my milky white legs out and let them breathe.

get my legs out

 

 

2. Take time out for myself. This is something I really need to work on, I need to say NO a little more and give myself some quality time, to read, to enjoy a meal with friends, a nights of dancing and copious amounts of alcohol

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3. To not back out.  I can list you a million reasons why I shouldn’t do something. This summer is the start of me doing less of this. I want to be positive and believe in myself. I CAN DO THIS.

Icando this

 

4. Its not always my fault.  I am so good at blaming myself that it could be considered an art form. I’m happy to blame myself from anything from a squashed spider to a natural disaster.  But guess what it’s not always my fault and this is something I need to learn.

Itsnotmyfault

5. More time for us. To spend some more quality time with my husband. After twenty years of being together we need to start carving time into our schedule for quality time. More romantic meals, walks, cuddles.

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So here are my five promises.

Why don’t you join in x