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. 

The unwanted visitor 

The thing about grief that drives my heartache is that it doesn’t care. 

Its has no discrimination, it will visit the young and the old, the rich and the poor, the healthy and the sick.

It’s not worried if today is a good day or if the moment is wrong, it has its own timing, it sings to it’s own tune.

It fact it is rather rude and has no boundaries at all and no matter how much I try it will not go and sit in the corner for a little while. 

The notes are its own and its music we just have to play, often on repeat, over and over. We fall asleep to its unique symphony, we wake to its morning chorus. 

Someone once told me I was broken, I don’t think they meant it in the way I understood it but I totally agree. 

I am completely broken. 

Grief leaves you with a brokenness that you can work through but from which you can never fully heal.

You cannot go back to who you were before your unwelcome visitor came to stay.

Yet in the brokenness you will see light, a gentle flame that holds out refusing to give in to the darkness. 

My realisation thanks to my new best friend called grief is that it wouldn’t hurt so deeply if it didn’t matter.

The pain that is tearing at my heart, it’s ok because it’s a testimony 

A testimony to love.

You see just like grief, love is another than pops up and won’t leave you alone.

It tangles your heart in web of moments and memories, wonderful heart fluttering emotions. 

So grief may be the hardest of emotions that leaves you gasping for breathe, but fight back reminding it that it’s is also one of great celebration, 

We loved, we laughed, we lived.

We created those moments that we will cherish for all time. 

To live we love. 

To love we have to grieve. 

So whilst there are times where grief and I will fall out, grief is the friend I will welcome again because my grief is my testimony to my love. 

Why – Orlando xxx 

I haven’t been able to write this week. I just couldn’t find the words to really explain my feelings,my utter horror at the atrocity committed in Orlando this week.

My heart breaks for the families of those who lives were lost, stolen.

My heart breaks for the LGBT community that has suffered so much already. 

How do you find words to comprehend such pain? 

There simply aren’t words.

My heart is aching terribly 

But my head is full of whys. 

Why did this happen?

Why was this allowed to happen?

Why is there such bigotry in this world?

Why is there such hate?

Why can’t people just be free to love whoever they want?

I pray for a world were love is celebrated in all forms. Where there is no “it should be this way” or “that isn’t right”.

I pray for a world where love is just seen as love.

Love can and one day will unite this world it’s this hope that I hold on to.

What defines you!

If you were to read about my past in script form you would be forgiven for thinking that this may have been a script for a television drama or more likely a soap opera.

It’s a story full of pain, loss and at times anger.

Yet it is my life and right now I am walking a journey which is laying it completely open and completely bare and its hard. It fact it’s blooming painful, yet in the midst of the tears of which there has been plenty I have actually found myself feeling a strength that is holding me all in place. In fact it must have the wire that has held me together through this life’s journey.

My faith in myself.

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I cannot go back and change the past. In fact I’m not sure I would ,as everything that has happened has formed me into the person I am right now and I actually rather like who I am.

We all have pathways to walk and as human beings we will make mistakes, we mess up and at times we completely screw up but its how we move forward that defines us. How we learn from experiences and how we grow.

 

My life may have been messy, but it has challenged me to see beyond the barriers. I love with all my heart, I believe in people with all my soul and most of all I have hope. Hope that with love and empathy this world can and will be a better place.

 

So if right now like me you are feeling scared and vulnerable keep pushing forward because you may not realise it, but these moments, these challenges may be the moments that define who you really 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

  

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.

  

A body wobble 

This weekend I modelled at an amazing plus size fashion event Style XL. Whilst I had an amazing time I have come to realise that I’m not as far down the body confidence road that I wished I was.

For those that don’t know my journey I will briefly recap. 

I cannot say I’ve ever been a confident woman even back in the days when I was a size 8 dancer I would hide under layers of shapeless clothes. So when my illness left me carrying extra weight the clothes just got bigger and I just hid away more.

I would hide from the camera constantly. Always wanting to be the photographer never the photographed. 

Then Olivia died, and I found myself searching through all my photo albums for photos of myself and my beautiful girl. In the whole of her short nine years I had only taken three photos of us together, 3.

This realisation alone should have shocked me into taking more photos with my girls but it didn’t. In fact I couldn’t, you see I didn’t recognise myself anymore. The loss of Olivia left me struggling with who I was.

 I was lost in the grief.

Then about 4 years ago I came across the plus size community. Beautiful woman celebrating who they are. Loving their bodies as they were, not how society deems they should be. It was this amazing community and these inspiring woman who slowly started to allow me to piece my confidence together. 

I started taking family photos, making sure I was part of the memories.

Started taking little steps forward, dropping the layers after layers of shapeless clothes.

Skinny jeans, camisoles and even the occasional dress.

This journey wasn’t easy, I can promise you I deleted more photos than I shared. Yet slowly I began to like the woman I saw in the mirror. 

I began to recognise that she wasn’t all bad.

This time last year I walked on my first catwalk at Style XL and yes whilst I did shake on every step and barely spoke more than a few words it was a major personal achievement.

This year I was asked back again and this weekend I walked for 5 brands, how amazing is this. 

Yet like any journey in life sometimes we do lose our way a little and for me today I got lost. 

Somewhere I took a road back into the darkness. 

In fact I have completed fallen apart. 

Looking at the photos of the weekend event I couldn’t see how far I have come, just the woman I have self loathed for a long time.

Now I’m exhausted and I know that tiredness is one evil enemy , I mean how can one love themselves when they can barely lift their head off a pillow.

I’m in pain too and this always opens the door for the past self hate to walk right in.

So yes I’m struggling.

But as I shared this within the Plus size community I have been lifted.

Woman reminding me of all I have achieved this weekend.

Brands thanking me for wearing their clothes.

So in my darkness the light has began to shine a little again.

I’m starting to realise beyond the modelling I achieved a great deal this weekend. I may have not reached the place of body confidence I so desire but I have found myself a lot more.

I spent a wonderful weekend with woman I actually spoke to. I introduced myself more and gave out the hugs I’ve wanted to to give out for such a long time. For me this is massive and it’s something I need to see for the achievement it is.

Whilst it may take me longer to feel happy with my body I am finally happy with who I am inside.

This weekend I have laughed until I’ve cried.

I’ve chatted, met new people and caught up with the old.

But mostly I’ve been inspired.

Inspired to continue back down the road of body confidence. To accept that sometimes even the greatest journeys have setbacks but moving forward is the only thing I can do. I cannot go back to the lost woman I was, in fact I’m quite sure the amazing woman I get to call my friends wouldn’t allow me.

So now I’m just going to spent the next few days resting and hopefully as the tiredness and the pain eases I will finally be able to see all that I achieved this weekend. 

But before I do head back under the duvet I just wanted to say thank you.

Thank you to the amazing brands that allowed me to wear their clothes this weekend and thank you to the beautiful woman of the plus size community, I don’t think you realise how much you all mean to me.

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.