I woke last night screaming, somehow my sleep had become a time machine and I was there again in the hospital begging my child to wake. Desperate to see her chest rise again, begging the Lord to save her.
How can 12 years just disappear in a moment?
Yet I know in grief, time is only my enemy.
I miss my girlie so much, how I wish I could just hold her in my arms once more, to just breathe in the sweet smell of her hair.
Grief is a complex devil, playing games with your heart moment by moment, memory by memory.
Does it ever end?
Only with eternity I guess.
Oh I never knew the heart could survive such pain. The crushing weight becoming bearable against my wishes.
I don’t want to sleep again, I had to leave her once I’m not sure I could do it again.
Why does your memory invade your dreams?
Is there nowhere free from grief?
I couldn’t pretend for a while, I could not create the facade of being ok in those darkness hours. So I let the tears fall and as my whole soul hiccuped through my body I allowed myself to miss her.
I let the memories swarm my mind like a tapestry of bees as they create their honey, I created my moments again. I held her in my arms, I heard her sweet giggle of mischief on the symphony of the night and I breathed her in deep and I sobbed.
I still don’t understand why I had to lose her, why Rett Syndrome had to win the battle for her life. Yet I know it wasn’t for the lack of love. My Livvy, their Livvy, your Livvy was loved with the depths of so many hearts.
If love could have saved her life she would be here.
No the question still stands unanswered, our hearts still forever broken.
I couldn’t breathe anymore the tears had tore my soul and I did fall into an exhausted sleep.
I wake still desperate to hold my daughter once again.
The new day begins,
I trust, I breathe and I hope.
Until we meet again my beautiful girl, until.
Joining in again with five minute Friday, set your timer for five minutes and write.
October is Rett Syndrome awareness month and its something I always try to write about and share in hope of raising awareness, knowledge and the importance of fundraising for research. The problem is this year I don’t know what to write that I haven’t written before. If I’m honest I’m not up to date with current research treatment or therapies, I can point you towards Reverse Rett UK and Rett UK who would be able to inspire and educate you so that you can learn more, but in all truthfulness I am a little out of touch
So what can I share?
What does Rett syndrome mean to me?
I’ve said it before but I will say it again Rett syndrome is a thief in the night. It robbed me of light and left me in darkness.
It is so easy in grief to focus on the happy memories, the good times you had with the one you lost and I know without a doubt I do this with my memories of Livvy. I struggle to remember the dark days because it’s hard enough living with the missing, let alone voluntary visiting the pain . But Rett Syndrome didn’t just steal Livvy’s life it often robbed her of moments.
Seizures played a massive part in Livvy’s life from the first one ever to the 26 she had that same day to the 106 of the next. They came and stole the light out of my beautiful girls eyes. If I’m being honest I had expected to lose her to these, as so many times before we had come close. The horrible thing with seizures besides watching your child contort painfully is the medications that are needed to control them. Besides damping down the seizure activity they also reduced the way Livvy could interact with the world. Hours slept away, moments missed and memories not made. We struggled for a long time to find any sort of balance ending with a vicious compromise of a few seizures each day just to be able to see my daughter smile. Accepting that her brain had to misfire daily just so she could live and engage in life.
Bargaining with the devil in ’ Hope’.
This is Rett syndrome
I remember vividly the first time Livvy went blue, her lips so ashen, her face so pale. What in the world, how in a spilt second had my child lost the ability to breathe, thank you again Rett syndrome.
The breathing abnormalities of Rett Sydrome are a lot better recognised now but when Livvy started with this complication nobody had a clue. Dr’s were baffled, seizures were blamed and more medications were tried. I remember once being in the hospital and literally wanting to throw the SATS monitor and smash it into a wall. Watching those numbers drop and knowing I could do nothing to stop it, broke my heart.
This is Rett Syndrome.
Livvy passed her 18 month health assessment with flying colours, she was a little delayed with walking but everything else seemed on par. Some children like to crawl for longer and Livvy was everywhere and in to everything. So nothing could have prepared me for the following months watching my beautiful sparkly eyed girl disappear right in front of me. First went her words, then her eye contact and finally her balance. Her ability to hold and play with her toys were lost in the never ending wringing of her hands. Her smile lost into the endless days of screaming.
This is regression, this is Rett Syndrome.
As I’m writing this I’m finding myself so full of anger, so full of pain. The reality is Rett Syndrome stole my daughter from me twice. My heart is beating fast as I remember the fear of the not knowing, the lack of understanding from Drs and specialists who I was praying would have the answers. The loneliness of this time, my retreating from family and friends as I couldn’t explain her behaviour, I felt like a failure. I was letting everyone down, I was letting Livvy down.
This is Rett Syndrome
Gosh that hurts to write, but the truth is I cannot bring Livvy back by reliving these emotions, by sharing my heart and fear it isn’t to resurrect my daughter, if only. The reason I share and the reason I am passionate about advocating for Rett Syndrome is that today another child has been born with this evil syndrome another set of parents hearts are being broken right now. Another child is suffering .
1 in 10,000 children a year are born with this devastating condition and by raising awareness, by fundraising I can hope and pray that their journeys are less scary than mine. That treatments are found to combat the evil seizures, the fear in the abnormal breathing, the pain from the scoliosis, the frustration in the lack of understanding and the heartbreaking ability of not being heard.
I write and share in hope that one day when a child is born with the condition Dr’s will be able to say we have a cure or we have these amazing treatments that will stop the thief known as Rett syndrome.
I write and will continue to do so in hope.
Hope in action can and will defeat Rett Syndrome. In memory of Livvy and all those amazing children and their dear families, we hope.
Today is the end of Rett syndrome awareness month. Yet for so many Rett syndrome is something they live with at all times.
Rett Syndrome is in their lives forever.
After losing Livvy, I guess I could have walked away from Rett syndrome but the impact of this devastating syndrome would still haunt me. I couldn’t hide from Rett syndrome it had robbed me of my daughter. I couldn’t avoid Rett Syndrome because it still tortures so many that I love.
Right now in this world too many girls and boys are losing their battle to Rett syndrome. Right now too many are fighting hard against Rett Syndrome and right now too many tears are falling for Rett syndrome, missed moments, broken hearts and painful memories all at the feet of this evil condition.
I’m often asked why I still fight for awareness and for a cure for this devastating condition. Why I still allow myself to feel pain because of Rett Syndrome and wouldn’t it be easier to walk away from the community that I don’t have to belong to anymore?
I’ve said it before and will say it again, my fight isn’t over yet. I will fight until one day there is a cure for Rett Syndrome, it’s as simple as that.
Yes; I lost Livvy to this evil and like many who have lost a child I want to attack what killed her. I want to personally wipe Rett Syndrome from the face of this earth. I want no child’s body to broken by this condition ever again. I want no other parent to have to cry themselves to sleep after watching their child suffer at the hands of this evil and more than anything I want no other parent to face the pain, the torture of losing a child to Rett Syndrome.
But mostly I fight for the ones I love, for Brooklyn, for Grace , for Sophia, for Charlie, for Amber, for Estelle, for Beth,for Olivia and for every child that has the Rett syndrome diagnosis.
I fight for them.
I fight for my Livvy, because she would want me to fight to stop her friends from suffering, for their mommies and daddies to not live in fear, for their siblings not to ever have to say “my sister died” for no one to have to face the pain of loss again due to Rett Syndrome.
Part of me wishes desperately that I could live in a world that never had to hear the words Rett Syndrome again, but it would be like “he who should not be named” of Harry Potter, it’s evil would grow and grow in the darkness.
So no I cannot hide away until Rett Syndrome is brought out of the shadows, until everyone knows it’s name. Until funding is given and medical research is made, until a cure is found.
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.
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.
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. “.
So it’s finally here, a years worth of work, a lifetime of memories all collated together in “Living with Livvy.”
I’m so excited to share my girlie with you all, for you to read and learn how incredibly brave and courageous she was. I’m also feeling extremely vulnerable as well. Here in these pages I have not held back, I have opened my heart and my soul and its laid bare for you all to see.
It’s not been an easy journey, i have returned to places in my mind I was trying to hide from. Revisiting some of the hardest moments I have every faced.
Yet it will be worth it, if this book educated one more person about Rett Syndrome if it raises more funds for Reverse Rett Uk it will be worth it.
So people, I am laying out my heart and soul here for you all so please, please support me in this venture. Go visit Amazon and purchase my book and help me raise much needed funds, help me help those working tirelessly to one day have Rett syndrome cured. One day have this diagnoses be one not of fear.
It can happen and it will happen, let’s help make it so.
Please visit Amazon and purchase the book, please let your friends, family, coworkers know about the book. Share this post on your social media, lets get “Living like Livvy” out into the hearts of minds of everyone. Lets make Livvy”s legacy really one of hope, lets do her proud.
Yesterday the world just didn’t make sense. My heart and my head just couldn’t stay on the same page. I screamed, I cried. I was angry, I was sad and for a while I didn’t know why.
Why was this day so hard?
Then I caught the date on my phone December 3rd,
As I read that number it hid home with a gigantic bang.
How could I have not realised, how could I have not remembered?
What kind of mother am I ?
Forgetting the day I buried my daughter.
If I close my eyes I can recall that December day. It was cold but yet the sun lite up the winter sky, warm rays dancing on the icy floor.
Frost sparkling like a carpet of diamonds fit for a princess, my princess.
You know It’s not in any parenting books, or on any websites. There are no handbooks on how to bury your child.
You wander through it all in daze, making decisions you have no desire to make. The colour of the casket, the silk that lines it. What does she wear? Oh the irony of it all, does it actually really matter?
Yet matter it did, from the brand new cardigan that Nanna travelled to fetch to the choosing of her special toys, it all mattered, it mattered desperately.
I wanted it perfect, I needed it to be perfect.
It was all I could do, all I had left to do.
I don’t really remember the words that was spoken or even the memories we shared.
All I really remember is the weight, the weight that consumed me, my feet feeling lead lined not wanting to move. To leave, to leave my beautiful girl behind.
I kept on at myself “she isn’t there” “she has already gone”. Yet in that casket laid my last physical connection with my daughter and everyone is telling me I have to move, I have to leave.
I held on tight to my youngest hands as I left that chapel, scared to let her or her sisters out of my sight. Wanting to hold on tight to them and never ever let go.
I was empty, I was lost.
Walking through the pleasantries, shared moments, warm hugs.
Yet nothing was ever going to be the same again.
I would never be whole again.
I left part of my heart behind in December 3rd 2008 and whilst the brokenness has started to heal I will also have a missing piece.
For the last 23 days I have asked you to join with me and support my #nomoreemptyarms campaign. Asked you to upload an image with you and your loved ones with the hashtag #nomoreemptyarms. All this in hope that we could raise a discussion from the hashtag about Rett Syndrome, generating awareness and understanding is what I was hoping and praying for.
You all have supported me incredibly, and again I have been shocked at the momentum that the hashtag has created. My heart has been blessed by the comments, by the questions and by people saying “they didn’t know what Rett syndrome was but do now”. It’s been truly awesome. But now as we reach the last 8 days of October and the final days of the Rett Syndrome awareness month I’m going to ask you to do something more for me.
I’m going to ask you to donate £5 to Reverse Rett and do so in honour of my empty arms, my Livvy.
I want you to join me in fighting against Rett Syndrome and shouting out loud #nomoreemptyarms
£5 may not seem a lot, a price of a coffee, a magazine but in fighting against Rett syndrome every penny counts.
So please make a donation now in honour of my Livvy and for all the parents out there whose arms are now empty because of Rett Syndrome. Then tweet me, Facebook me or just let the world know that you have donated and that they can too. Help share the fundraising link far and wide.
Please do this for me in honour of my Livvy, do this for all the children fighting against Rett Syndrome today and please do this so that we can be fight together so that no other parent has to lose their child to Rett Syndrome.
The cure is within our reach, make our hopes a reality.
Please visit my just giving page.