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. 

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.

  

True Inscription 

A few weeks ago someone asked me why my daughters gravestone didn’t say beloved daughter, sister and maybe granddaughter. As many of the others did. 

I wasn’t going to answer but the question has been turning over and over In my mind. 

The truth is what you write on your loved ones stone is a personal preference,  but for us, we simply couldn’t get a stone big enough to define who Livvy was to everyone 

Besides being a daughter, Olivia was a beloved sister, she was also a granddaughter, a niece, a god daughter, a cousin and a dear friend. Livvy was also a pupil loved by her teachers.  A patient well cared for by her doctors she was all this and so much more. One neighbour told me that she was the smile that brightened his day. 

How could one stone hold all that she was, all that she is? 

Choosing a gravestone is one of the hardest things I have ever had to do. You have limited space and a small amount of words to describe your loved one. How do you honour them in your words? So many times since the stone was laid I have questioned did we make the right choice, I think we did.

  

Still I don’t think the stone is all we have to remember or honour my sweet girl. 

Everything that we do is in hope to bring joy to her memory. The laughter we share together as a family, the arms that we open to others children. The friendships we make.

The stone is a place which marks the spot where her ashes lie.

Yet in my heart and in those who love her is the true inscription that honours my beautiful girl. 

Sometimes I have too ….

So my last post mentioned that we are holding a fund raising day for Livvy’s 16th birthday and it’s going to a be fun memory making day and a positive way to honour the memory of my beautiful girl. 

Still I need to be honest and say that right now I’m struggling. I’m trying so hard to be positive and happy that I feel like a complete fraud.

My head is spinning and my heart is just slowly breaking a fragment at a time.

Each morning I wake to the memory that my child has gone.

Every night as I close my eyes I pray for a dream. A fantasy where my heart is complete, where I get to hold her in my arms again.

I’m sorry, I know this is far from the positive way I usually try to write. Where I try to use my words to convey all Olivia taught me.

To cherish my memories.

To remember in joy.

Today I just can’t be that person.

I’m just too blooming sad.

My eyes are heavy with the tears that are still to fall. Yet my pillow is wet from the tears that have found their freedom.

My head is in such a mixed up place.

I’m angry 

I’m sad 

I’m missing 

  

I’m so angry at life for taking my daughter from me. 

I’m fuming at myself for not remembering her unrelenting spirit, her bravery, for allowing grief to take the upper hand to overwhelm me.

I’m sad, completely and utterly broken hearted. 

It really is as simple as that.

I’m missing, damn I’m missing everything about her, from her long perfect fingers to her sweet crazy curls. Her long beautiful eyelashes to her cute stubby toes. 

  

I miss my girl.

I had to write honestly today. 

Really needed to share my heart. As much as I appreciate the comments and emails I’ve received of you all  telling me how strong I am, I wanted to be truthful.

I’m not always strong 

I’m not always happy

Sometimes I can’t even pretend.

Sometimes I have to let the tears fall.

To allow the gut wrenching sobs escape from deep inside. 

I have to allow myself to be angry, to be completely pissed off at life, to rage again God screaming “Why?”

I have to allow myself to hurt, to let the pain twist deep into my stomach.

I just have to stop pretending I’m ok.

Because right now I’m not. 

It really is as simple as that.

  

There has to be a line they don’t cross.

I’m on holiday right now trying hard to deal with memories that are haunting me whilst creating new ones to cherish and love.

Yet even here in the middle of nowhere I cannot avoid the arguments and discussions following the interview given by Samantha Cameron about the loss of her son Ivan.  

Part of me wants to be naive right now and believe that this a mother just opening her heart about the pain and devastation she has felt from the loss of her son.

I want to remember the shared look we exchanged as we acknowledged the loss of our children. How that brief moment in Downing Street span across economic backgrounds into empathy and shared understanding.

As a grieving mother I cannot imagine a mom using this loss as a campaign tactic.

Please no.

Yet as naive as I wish to be the Cameron’s  have already proven that all experiences, all struggles are open for exploitation.

We remember David Cameron telling us he understood  how hard it is to raise a disabled child. How he will be supporting families as they struggle. Only for him to walk back over all his promises in a dramatic fashion. With cuts to services and benefits that have dramatically left people struggling to survive. 

Cut in services

Bedroom tax 

Local government budgets being slashed leading to less respite, play schemes etc etc.

And so much more. 

Even now if leaked information is to be trusted if the conservatives stay in power there will be more cuts coming to those who are disabled and those caring for them.

To be truthful I am lost for words. 

The whole situation is making my stomach ache.

I want to believe that this story, that Samantha Cameron’s interview is not part of the campaign trail.

I want to honestly believe that she is not exploiting the hearts of those like myself who grieve desperately for their child.

In fact I have to believe this. 

To accept anything else would make me question humanity.

Would make me question everything.

Surely there has to be a line a political party won’t cross?

   

I’m ok 

Sometimes I wonder if I really should say how I feel? 

Do I upset others?

Should I pretend 

Thursday was epilepsy awareness day and I posted this photo. 

  

Everyone was so sweet and understanding but worried for me.

I hate that people worry about me.

You see I’m ok, 

I am broken and grieving but I’m ok.

I know that I have so much to celebrate every morning when I awake. 

My beautiful girls 

My adorable foster son 

My annoying husband 

I am so much to be grateful for.

I got to be Livvy’s mom, no I am Livvy’s mom. 

For nine and a half years I got to hold this sweet girl in my arms. I had the opportunity to grow and learn and change.

I believe that we all have a purpose in life and I know Livvys was to educate me on what really matters. 

The moments, those special moments that cannot be brought they are simply priceless. 

Livvy taught me to be strong, to use my voice for those who cannot speak. To fight for the rights of those that society chooses to ignore. To look beyond the normal and celebrate diversity as the gift it truly is.

Livvy awoke a soul that was in hiding. In her journey I found my own.

Yes Thursday was a hard day. One where grief sucker punched me hard. The images, infographics about epilepsy took me back to a time when my heart was breaking.

Livvy suffered from severe epilepsy, some days the seizures never slowed down. Endless medications, needles , drips to find her peace. 

These memories flooded my mind. They crushed my chest until I couldn’t breathe.

But I’m ok because no matter the darkness of grief the light will always shine through. 

Always 

People are like stained – glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within.

Elisabeth Kubler-Ross

Forgotten photograph

Last night I fell apart.

I truly just sobbed and sobbed.

I cried until I couldn’t breathe.

I was angry

I was broken.

I found myself screaming at God

The crazy thing is that nothing had happened.

Well nothing major.

I just came across a forgotten photograph of Livvy.

One that I hadn’t seen in such a long time.

You see I had uploaded it to a photo printing site that I don’t use that often, but a discount email spurred me into a visit.

As I scrolled through photos of my foster son there right at the beginning was a few that I must have uploaded over 7 years ago.

There was her sweet beautiful face.

Just looking out at me.

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For just one precious moment she felt so close.

Then reality struck and I realised she was completely out of reach.

I catch my breathe as I write that. The physical pain of her missing tightens like a noose on my heart.

Grief is a funny old journey. No thats not the truth there is nothing funny about it.

It destroys you, it slowly epps away the person you were before the loss and leaves you with a shadow of what was once.

Your heart is never the same.

I needed to cry last night.

I needed to allow myself the freedom to grieve.

To drop the facade and allow myself to feel.

Being brave is hard.

Being strong is exhausting.

You cannot live in the world of pretence forever.

I’m not ok.

I never will be.

My heart is broken.

My soul aches for my daughter.

My arms are empty.

A part of me is forever missing.

The best Christmas gift that wasn’t for me.

I have been so lucky this Christmas with some amazing presents. Yet my favourite gift was not one of mine, but it was one that really blessed my heart.

You see every Christmas my aunt and uncle sends gift envelopes for my girls. It is something they and I are completely grateful for. Also whichever foster child joins our family will also find themselves with a envelope with their name on Christmas morning.

This is so lovely and so appreciated,
Yet it’s isn’t these envelopes that really warm my heart.

It is the one that has still carried on coming every christmas for Livvy.

The sweet envelope with my beautiful daughters name is what makes my Christmas Day.

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Knowing that she isn’t forgotten.

It’s a just little envelope that holds so much more than the money inside it.

More than the flowers the money will buy.

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Losing a child is unbearable the shock comes first but then you are left with a lingering agonising pain.

It’s the pain of watching people move on with their lives that twists deep into your heart.

They move on without her.

I cannot bear the thought that Livvy will be forgotten and yes it’s something that causes such a panic within my heart.

So when this envelope comes along I am so grateful that my aunt and uncle are just taking a little time to say, “she isn’t forgotten”.

That for me is the best present ever.

Thank you Auntie & Uncle

Being thankful

Over on Facebook I have been seeing a lot of posts on thankfulness.

Mainly ones from my USA friends as they give thanks for things and people before their holiday of thanksgiving.

It has really set me thinking about giving thanks and especially this week as I face the anniversary of Olivia’s death.

I want to give thanks for those that were there when I really needed them..

Who were the light in my darkness.

Thank you …,

To my husband Alan for just holding me in your arms until I cried myself to sleep. To dealing with my pain on top of your own, for loving me unconditionally, through the anger and the sorrow. For still being there and for giving me the freedom to still now fall apart at times.

To my girls for being the reason I had to get up each day. For remembering your sister with laughter and for being so damn brave. You are my constant inspiration and your sister would be so proud of you all.

To my dad for the endless phone calls where you just listened. When I raged against the world and questioned why. Thank you for not trying to explain it but just being there. Even though your heart was broken too you put me first constantly.

My mom, siblings, step mum,in laws etc all of you walked this pathway with us. There was no answers to be given but there was so much love and I am truly grateful.

My friends,for just being there. Ange you just sat by my side when i couldn’t speak. Just holding my hand. For talking books and endless crap just to keep me sane thank you.

My Facebook friends, Rett mums and special needs mums thank you for just reaching out over the computer to just remind me that I wasn’t on my own. Flowers you sent to brighten my day, messages, emails all gave me strength.

Kelly you keep Livvy’s alive in ways I will always be grateful for. Not hiding her away but honouring her memory. I cannot tell you how much this has meant to me. Seriously there isn’t words. To your dear family too for just reaching out and loving on me.

For Compassionate friends the forum which was always open. Moms, dads who really understood the journey I was walking. For not promising it will be ok but reassuring me I would find my new normal. For still celebrating our children now . Never lost just missing. You have become some of my dearest friends. I so need to do a gathering soon.

To those who have supported Livvy’s Smile and all my Rett Syndrome awareness work your support gives me such strength and I give thanks.

To my blog readers for your emails, your comments encouraging me to keep writing to keep sharing my heart.

Thank you.

I have so much to be grateful for and whilst here in the UK we don’t celebrate thanksgiving I want to. I want to say thank you to those mentioned here and so many more for being by my side as I have walked through the pain of the last six years.

For your encouragement, your support and your friendship and love.

Losing Livvy changed me in ways I never could of imagined. I have learned the true value of life.

It’s not about money or fancy things it’s about love and friendship. The relationships we have with others.

I didn’t know what the new pathway would hold but I knew who would be there to walk alongside me.

For this I am truly thankful.