Still we fight

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.

Until that day, we fight.

I fight.

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. “.

Living like Livvy

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.

How could I have forgotten? 

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, 

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. 

A beautiful blond wild haired missing piece. 

My girl, my Livvy,

Forever in my heart, forever my daughter. 

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. 

Let’s end October with a bang. 

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.

I’ve just donated £5 to Reverse Rett because I want to make sure that there are #nomoreemptyarms you can to. https://www.justgiving.com/Nomoreemptyarms

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. 

  
Please donate here today 

Weapons of hope

Can I tell you something Rett Syndrome sucks. No matter how loud i shout, no matter how much I raise awareness it still doesn’t change the fact that Rett syndrome sucks.

Rett syndrome stole my heart. 

My world was shattered, my soul forever scarred. 

Grief is a turbulent ride it twists you up and down and inside out. Just when you think you are coming to land it flies up again twisting the very air you breathe.

 A tornado in your soul.

I want to stop being angry, to stop wanting to scream out loud, I want to find peace. 

But I cannot, not until there is a cure for Rett Syndrome. Not until the thief is placed in a cage. Not until the battle is won. 

We will win this battle, the scientists are waging a war, preparing weapons of happiness.

Weapons of promise.


Weapons of hope. 



One day the weapon of the cure will be found and Rett Syndrome will be defeated.

Until then we will battle on, supporting the research with fundraising. 

Every penny in the arsenal against the enemy.

Against Rett syndrome,

Will will be hope in action, until there is #nomoreemptyarms