I wish I had been there.

I read a post the other day describing the days of a premature baby in a neonatal unit and my heart broke. Not because Daniel was born at 26 weeks because my little fighter survived, but because I wasn’t by his side through it all.

How crazy is this that I’m torn inside by a grief, a guilt for a time I didn’t know. For a time when I didn’t know my boy. The idea of him facing what he did without me by his side breaks my heart.

The whole time before he came my son is one I cannot focus on. I cannot bare to think of the symphony of emotions he had to face alone.

I have read his medical file and my heart just tears, 26 operations before we met him. 26 anaesthetics, 26 procedures, 26 times I wasn’t by his side holding his hand.

I know it’s crazy and deep down I know it’s not my fault and I do just have to have trust in the journey but I honesty wish he hadn’t had to face one step without me.

I get frustrated when people tell me that he shouldn’t be as clingy as he is. I honestly ask them to walk his pathway and see if you didn’t want to hold on tight.

When the world has been full of procedures and strangers. Pain and suffering. When you cannot see who is picking you up tell me you wouldn’t hold on tight to the one you know, the ones whose arms to trust.

I’m so proud of this clingy I want my mom stage, because this means he knows I am always there. That in my arms he is safe.

I adore the way that when he is ill he only wants me it’s further testimony to our bond.

Mother and son.

I cannot change the past and that’s something I do have to let go. I’m just so thankful that he came to us and that his heart fitted perfectly inside mine.

The future isn’t mine to see and I will not make promises that I cannot guarantee but what I do know is that why my heart still beats I will be by his side, whenever he needs me that’s a promise.

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?

A date I didn’t want in my diary.

When your child is born your mind is full of the moments that are coming. The special dates that will fill your calendar. You start planning for the celebrations, their first birthday, their christening, their first day at school. Your mind races forward into their future, will they fall in love, will they be happy? So many will they be’s just as it should be, yet no parents expects to add, when will I lose them? How do you add how to plan their funeral to this future planning list?

Yet when your child is born with complex needs these thoughts invade your mind even when you try hard not to allow them. You live in a constant battle between hope and fear.

When we were told by Livvy’s consultant that he couldn’t promise us forever our minds went to places no parent should ever have to go.

When we lost her, another date appeared in our diary. Not one of celebration but one of brokenness.

We do mark the day we lost Livvy yet I know others that don’t, they don’t want to dwell on the day they lost their child and I get that. Yet for me personally it would always be the elephant in the room, the day my heart broke into pieces.

We take Livvy flowers and decorate her grave, not in celebration but in appreciation. Thankful for the gift of being her Mama, for the wonderful nine and half years she blessed this world.

It may seem strange to some but the day we lost her is a day I have to acknowledge, an anniversary I have to remember. I have to allow my heart the space to break and my mind to grieve. It’s a day where I can admit that life sucks without her and I’m still annoyed the world keeps on turning.

It’s also a day where I remind myself how lucky I was to have her and how my journey isn’t finished. It’s a day I love harder on her sisters, her new brother and of course her Daddy. I hold on to the gift of life and the memories we have and those we have still to make. Make plans for magic moments to come. Places to visit, friends to hug.

Yet the only thing I can guarantee about this day is that I have no idea how I will feel and that’s perfectly ok. It’s a day I don’t have to enjoy, have to make special it’s a day I just have to be. To be whatever my heart needs it to be.

Whatever we need it to be x

Are you really my friends?

I’ve been honest here before about my struggle with friendships. How my awkwardness and self doubt has often left me pulling away from friendships. The fear of losing people has often led me to push them away.

I know why I do this, but stopping myself is a whole other battle.

Anyhow I was asked the other day about why I talk about my internet friends so much? Also are they really my friends?

So are you?

I’ve never been the best at friendships, never one for big groups. They just required too much brain power and for me to be out of my own mind more than I was willing. Family commitments and having a lot of siblings just never made me feel the need for large friendship groups. Also the dynamics of social groups mess with my mind. Cliques, status I simply couldn’t be bothered or understand. I often just don’t get people and social situations and I’m lousy at small talk.

So hello internet.

For someone who hates talking on the phone ( a whole other blog post) I found online forums to be freeing. I could chat to who I wanted and when I wanted. The groups were those with similar interests as me or similar lives.

First it was the special needs forums then with Livvy’s diagnosis it became the Rett community and then unfortunately I found myself in the bereaved family forums. All people willing to chat, support and guide me without any pressure on me to be anything but myself.

Then hello social media,

Wow I loved it, again I was given the opportunity to develop friendships with people miles away from me who just got it. Rett moms who cried themselves to sleep after watching their daughters seizure, parents trying hard not to lose their minds with their teenagers.

It was great, until it wasn’t.

I’m not sure what happened but losing Livvy changed the way I viewed the world. I couldn’t do arms length anymore. I needed close, deep friendships but I wasn’t ready. Emotionally I just couldn’t invest time or mind-space into others. I needed to heal, love on my girls and I suppose be a little bit selfish. I couldn’t be compassionate when my heart was broken. I’m sure many other bereaved parents will tell you that one of the hardest moments after losing a child is when you realise the world continues on without your child in it. I struggled with this so I hid away until my anger subsided enough to let me live again.

Hello hashtags

I laugh when writing this but Instagram and hashtags became my best friend. Literally a search engine to likeminded people. I love them, how many times would you expect #seizuresuck to appear, more than you imagine that’s for sure.

#Panhypopituitarism

#hydrocephalus #diabetes insipidus, #cerebralpalsy, visionimpaired #hypothalamicdysfunction #epilepsy

#Chroniclungdisease

#specialneeds

#complexneeds

#disabilityawareness

These hashtags have brought me in contact with some amazing people and now I’m determined not to hide from the friendships I am forming.

I have come across parents with children with complex needs with such a love of life that I cannot help but be excited by them. Their energy is contagious and their children’s smiles so infectious. like myself they live to make the moments matter. Standing up against discrimination and showing that our children matter, all children matter.

I am finding that sometimes it’s easier to be transparent behind a screen, to admit you are struggling when you are not face to face.

I have also seen waves and waves of support literally lift people out of the depths and I’m so proud to call these people my friends.

Yes some relationships I have formed are deeper, some I literally feel are family where others are not so close but I’m equally thankful for.

Some friendships will stay behind a screen and that’s ok but others I’m nervous but so excited to bring into the real world.

But all I value, all matter to me.

So in answer to the question are my internet friends real friends? My answer is this, “Completely, I don’t want to do life without them. “.

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.