Walking in her footprints.

We have just been away for a few days, a holiday with just Daniel, myself and Alan. It literally was a comedy of errors. Firstly I was supposed to meet up with the gorgeous Danielle and her beautiful daughter Evie but its seems there is a few hundred miles between Twynn and Towyn whoops. We were supposed to meet a family we love from our playgroup but it didn’t happen, everything just changed or maybe everything became how it was meant to be.

Due to my plonker-ness I was given time to be still, to refresh my soul, the freedom I find as I stare out over the ocean is something I cannot explain. Its as if I can actually breathe deeper for a little while. My heart beats to the song of the waves and my mind stays still just for a moment. 

My holiday may not have gone as planned but it was lovely. 

We visited the Talyllyn railway and travelled through the mountains on Douglas the steam train. Daniel loved it, the gentle movements of the train made for good napping but when the whistle blew he smiled so widely it was precious.

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I do have to shout out to the staff at the Talyllyn railway as they were so amazing, from the ticket lady who made sure we got the carers discount to the guard who made sure the ramp was ready for us, we were treated so well. There was no issue of the wheelchair they just wanted to make sure Daniel had an amazing time. I loved it, the actual fact that I had to sit for a couple of hours and just relax and admire the scenery was so needed. I actually think they could advertise the journey as a soul refresher as I left feeling lighter. 

We visited Barmouth on Wednesday and it was hard, the last time I had walked those narrow pathways was with Livvy. Gosh she loved the beach, my girls they played for hours. Livvy like a queen in her dingy, us nearly destroying her new wheelchair with salt water, she was there. As I sat watching the sea eating my fish and chips I could feel her. As we took Daniel for his first donkey ride I could hear her laughter on the wind. 

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As I watched Daniel trot up and down the beach I held on tight to the fact that he now stood where his big sister did. He got to experience what she did and I, well I  got to see and remember my children happiness. 

Making memories, holding memories close.

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]

 

 

 

She should have been 19.

I’m not sure how to explain today, how to find the words.

It seems wrong to say that my daughter is 19 today, when in reality she will be forever 9.

I want to celebrate what should be her special day.

I want to eat cake and sing happy birthday, but my heart is just so broken.

How can you celebrate when you cannot hug the birthday girl tight?

How can you smile when forever seems so far away?

Gosh I miss my beautiful girl, that feels like such an understatement. Every breathe I take aches for her, my arms crave to hold her again, my heart beats with a missing piece.

I torture myself wondering what she would be like now, I wonder would she still love her football players, her gothic clothes and Tinkerbell. Yet how can I really know, she has been gone nearly ten years, her sisters have changed so much, so would she?

I have no idea; do you know how hard that is to comprehend? No idea at all. I should know my daughter, I should have been given the chance to.

My heart feels on a roller coaster right now, my faith doesn’t feel like the liberation it should be. Yes, I believe I will see my daughter again but forever is still out of my reach.

Is it wrong of me to wish her back here, back into a body that struggled so much, a body that betrayed her in so many ways?

Is it selfish of me to just want one more day?

Nineteen, it would have been the last of her teenage years, yet the truth is she never got to the beginning.

Nine and a half years, a minute moment in time, not enough, never enough.

I know Livvy would be cross at me today, I know she would be giving me her evil eye and her stern look.

“Mom you know better. You know not to waste a moment, celebrate me and do it with joy. Remind my sisters how much I love them, tease my new brother who you should know I got to meet first. He may have got lost on his way, but I got him to you eventually.

Get out there Mom and enjoy the sunshine, sing at the top of your lungs and hug my Dad tight.

No sadness, no sorrow, no more”

I can actually see her in my mind conveying all this, her eyes alight with mischief.

I can actually feel her soft hand, her long fingers entwined in mine.

I can feel her, but my goodness I miss her.

I can try my darling girl,

I promise I will try,

My heart wants to fall into a million pieces,

My soul just cries out in missing.

I don’t know what or how I will be today, maybe there will be moments of joy wrapped in the ribbon of sorrow.

I can try but I’m sorry Livvy I cannot promise, I just miss you too much.

Happy heavenly 19th Olivia,

Happy birthday Livvy xxxxx

Eight years 

I wasn’t sure I was going to write this year, I was thinking, wondering if I should let the day go past without remembrance. Yet I knew it would be a lie, a falsehood because pretending that this anniversary doesn’t exist doesn’t make it so. In fact the pretence builds its power giving it more control.

Eight years, eight long years of missing my beautiful daughter. 

Eight years since I held her last in my arms.

Eight years since I heard her sweet giggle.


Grief, it’s a horrific road, it often plays unfair. Sometimes it even allows you to feel like you are winning, only to sweep your feet from underneath you, cold and swift. 

Yet the truth is that grief and love, they walk hand in hand. Without one you would not get the other.

So I’ve decided today that I’m not going to hide away.

I’m going to immerse myself in all that was Olivia, 

That is Olivia.


I’m going to give myself permission to walk through the valley of pain in hope to find a place of peace.

I’m going to remember her sweet little ways, her cheeky character, her strength of spirit.

And I’m going to give thanks 

Thanks that even now in the midst of grief, I am so thankful that I got love.

I am one incredibly blessed woman that I was lucky enough to have this child call me mom. 


That I would walk a lifetime in pain for the privilege of being Olivia mom. 

That whilst nine years will never be enough they were such a gift. 

My beautiful girl I wonder if you really knew how you changed my life. How you opened my eyes into a world of innocence and honesty. How living one day with you would often seem like a lifetime. You taught me so much, you challenged me, to embrace each moment, to celebrate each breathe. 

Many can travel this life without really knowing their destination, their purpose. You young lady gave me mine, you made it crystal clear what was expected from me, I’m still hearing your instructions from heaven. 

Be kind for kindness sake
Be thankful for all things 
Stand up for what matters 
Be the voice of the voiceless 
And never ever be afraid to say yes to love. 

We are not all promised forever but knowing you are loved is a lifetime gift. 
Thank you for being one of my greatest gifts.

My beautiful daughter
My inspiring Livvy.

Until I get to hold you again, love you girlie xxx

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. 

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