Celebrating the gift of motherhood.

Mother’s day is a day of celebration, a day where we honour the bond of a mother and a child. The period of time you are a mother is irrelevant. Physical birthing isn’t a necessary. Motherhood is about loving someone more than yourself. Living and breathing for their dreams to come true.

I adore being a mother, from the moment I knew I was carrying my first child in my womb my heart has loved hard. I’ve made mistakes, I’ve messed up and I’m sure I still will but my children are my life, my world.

One of the hardest things I have faced as a mom is letting go, watching my children grow and flourish and become Independant and assured. Seeing them bravely love, suffer, face heartache and rejection. The overwhelming urge to take them away from painful situations, to stop them before they try. Yet as a mom I’ve had to let them be, to live is to learn.

I am a mom to four amazing daughters and one handsome son, each one so beautiful and incredible in their own right. Individual with their own needs, wishes and dreams.

My dearest Livvy is in heaven and whilst the veil of this lifetime separates us physically now. No time, space or worlds can separate the love of this Mom from her daughter. My soul craves for my girl, my arms ache to hold her. My heart will be forever missing a piece, beating with a broken melody.

Yet I would do it all again in a heartbeat.

Mother’s Day is a celebration and I have a lot to be thankful for. So I’m going to hold on tight to the memories, run forward widely into the future with the knowledge that the greatest role I get to live, is that of a mother.

How blessed am I?

Sorry I couldn’t rise.

I’m not sure where my head has been for the last few weeks, I’ve completely felt a detachment from the world. On the outside looking in. I’ve been falling into an abyss of what if’s, what should of been’s and to be honest a hornet’s nest of why not’s.

Social media has been full of graduations and moving on photos and I’ve just felt angry and raw.

Grief isn’t pretty, it doesn’t come tied in a pretty bow. A ornate basket with a jar of missing tears and bottle of memories.

No grief is a raging ocean, dark, bottomless and threatening to pull you under at the least expected moment and I’ve been drowning.

I feel such a bitch but I’ve scrolled past photos without commenting, without celebrating the achievement because I was angry, I was resentful because Livvy didn’t get to celebrate it.

I couldn’t drag myself up out of the pain to celebrate others when there will be no prom for my girl, no sparkling dress, no fancy shoes.

There will be no graduation for my daughter, she didn’t even get to complete primary school let alone head out of education into the great unknown.

I hate that I’m angry, I’m appalled at myself for being jealous but my goodness missing her hurts In a way I just cannot describe.

There is always going to be moments that are raw, moments that should of been and I’m always going to try and be ok about them but I’m never actually going to be ok with them.

There will always be a Livvy shaped piece in my heart. Always another tear to fall in missing. A breath to be lost in grief.

Rett Syndrome took so much from us, it took Livvy from us and right now I’m tumbling into grief, anger and complete sorrow.

I miss my girl, I miss her so damn much.

So to those who I haven’t celebrated this last few weeks I’m sorry. My heart does sing for your moments, I’m so very proud of all of you and I’m so sorry. Sorry that I couldn’t rise from the depths of missing this time, sorry I didn’t have the strength to pretend.

I just miss my beautiful girl so,so very much.

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. 

[inlinetweet prefix=””Allowing others the space to be vulnerable may be the bravest thing we can do.”” tweeter=”” suffix=””]”Allowing others the space to be vulnerable may be the bravest thing we can do.”[/inlinetweet]

 

 

 

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. 

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.