Christmas present.

On December 23, 2021December 23, 2021 By rebelwithkindnessIn UncategorizedLeave a comment

I cannot believe it’s Christmas in a few days. I have struggled with Christmas for as long as I can remember without going into details I have finally started to understand how childhood trauma can create a fear that may not seem reality to most but to those who have PTSD can be often overwhelming.

This is me.

I’ve tried for so many years to create the perfect Christmas to break the patterns of fear in my mind and to make sure those patterns were never created for my children. I wanted their memories of Christmas to be filled with wonder and excitement. I believe for them I have done this for myself it’s still a game of pretend.

Whilst I love the illusion of Santa I have never played the you better be good card on my children. The gifts they receive on Christmas Day are those bought by those that love them. We honour the tradition of Santa but also we celebrate the birth of Jesus. Yet there is no guarantees on what will be under the tree, yes we have listened to your wishes but also it is what can be afforded etc etc. But for me it’s about teaching the children about the love of the season, not making promises I cannot keep.

I listen to my children and live to see their faces when they receive something that had mentioned a while ago, it’s not about the gift it’s about the being heard.

This Christmas I’m struggling, it’s seems fear is the only thing I’ve managed to wrap and place under my tree. My anxiety has been on steroids I’m so tired of being fearful. So fed up of the nightmares of Christmas past I really wish Jacob Marley would just past to the light and leave me alone.

Christmas spirt just seems to be further away then ever. Yet for some reason this year my acting skills have left me I cannot pretend anymore I’m broken. Please don’t ask me what I want for Christmas I cannot cope with expectations. I was working on them but that Covid bitch stole my progress along with everything else.

I just don’t want to engage with the excess of Christmas I just want to hold Daniel in my arms and read him stories, watch some Christmas films and just be. I don’t want the noise, I want the calm and the peace. I mean Christmas is the celebration of the birthday of the prince of peace so why shouldn’t it be tranquil and gentle.

What do we have to go big and loud?

Why does it have to be too much?

Why does it have to be so full of fear?

Covid of course has done a dirty again on the season along with Christmas carols came the rising numbers. New variants, new restrictions and a new dose of blooming fear. I mean can Santa even visit if he has to quarantine after every sleigh flight? Seriously though how can people build joy without knowing what will happen.

It’s sucks it all sucks.

Yet I’m going to try and fight back, fight through the memories and try and change my own thought patterns. Try to learn to love the season again. Maybe understanding and acknowledging the past will allow me to fully embrace the future. Obviously working hard on your mental health in the middle of a pandemic hasn’t been easy but what else do I do with all this down time it’s not like I’ve been able to go anywhere (yes there is bitterness there). Covid is like a dodgy ex you think he is going away but no comes back with all the extra drama, showing up when unwelcome, bringing chaos and pain with it.

Yet allowing myself to feel has been worth it, sometimes the memories and emotions have felt more than I can face, but face them I have and although I may have boxed a few for another or never time, I have learned more about myself than ever. I know who I am deeper than ever before. Which is a mixture of bad and good, I mean we all have things we wish to change about ourselves.

So I am going to enjoy Christmas not in the excess way of the tv adverts or holiday promotions say it should be but our way. I am going to curl up under a blanket with Daniel and so many stories to share. I am going to veg out on the sofa and watch Christmas films that are cheesy and full of hope. I’m going to enjoy good food without the expectations of fancy tables and decorated plates. I’m going to cook extra and bless my elderly neighbours with a Christmas dinner I hope they enjoy and I’m going to breathe deep.

I’m allowing the past to wash over me and build myself memories that are different. The past doesn’t have to haunt you, you are allowed to leave it when it belongs in the days gone before you.

So bog off Christmas past and hello Christmas present, please leave the chains behind you.

Still we fight

On October 31, 2018 By rebelwithkindnessIn UncategorizedLeave a comment

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.

It’s October

On October 21, 2016 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

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.

On October 23, 2015 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

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

No slowing down

On October 16, 2014 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

Last night my dream was so vivid that it felt so very real.

I was curled up on the sofa and under my arm with her head in my lap was Olivia.

Just lying there giving me a sweet cuddle.

I woke with tears rolling down my face.

An emptiness in my heart.

I just wanted to go back to sleep and just hold her one more time.

To stroke her soft cheek.

To play with her sweet curls.

Rett syndrome has robbed me of moments like this.

It took away my child.

While this dream did make me cry it’s also made me more determined.

Determined to really push the #nomoreemptyarms campaign.

To encourage parents, grandparents, brothers, sisters.

Aunties ,uncles, friends

To all give each other a hug whilst taking a photo and uploading with the hashtag #nomoreemptyarms.

To take a moment to make a memory.

To encourage people to learn about Rett syndrome and what it takes from our children.

We may be half way through October the month of awareness for Rett Syndrome.

But there will be no slowing down.

In fact I’m going to drive hard to make these last weeks really make a difference.

Going to push forward so that Rett Syndrome gets the awareness it so needs.

For people to understand, to learn.

To support.

Let’s do this.

Let’s say no to Rett Syndrome.

#nomoreemptyarms

#Nomoreemptyarms

On October 5, 2014 By rebelwithkindnessIn Uncategorised, Uncategorized1 Comment

What a weekend!

On Friday I started a campaign called #nomoreemptyarms.

It was a way of raising awareness for Rett Syndrome

I was hoping that it would stir the hearts of everyone, everywhere.

I asked people to take a photo with their loved one in their arms and upload it to social media sites with the hashtag

#nomoreemptyarms.

I wanted to hit home what Rett Syndrome can take from people.

What it had taken from me.

I have been overwhelmed by the response.

All over the world people have joined in.

I am so excited.

I think we can take this even further.

October has 31 days let’s make each one of these days count.

Let’s get #nomoreemptyarms trending on all sites.

Share posts with all your family, friends, co-workers,

Tweet celebrities, journalists, pop stars, MP’s everyone.

Let’s bring the fight to Rett syndrome and say #nomoreemptyarms

My arms are empty but this weekend my heart has been overflowing.

Thank you all so much xxx

No more empty arms

On October 3, 2014 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

I’m been thinking a lot about the fact that it’s Rett Syndrome awareness month.

Thinking about what it is we actually want to achieve.

Fundraising – yes

Awareness of the syndrome – Yes

Yet for me I want something more.

I want no mother and father to face the pain Alan and I have had too.

I want no brother or sister to cry themselves to sleep missing their sister.

Grandparents heartbroken.

I want no more empty arms.

So I decided that this month this is what I wanted to focus on.

Raising awareness and fundraising so that no mother or father is left with empty arms.

Rett Syndrome means I will never hold my daughter again.

So I’m challenging you all to help me raise awareness of this devastating condition.

Please take a photo of your child in you arms and upload it to your social media sites with the hashtag #nomoreemptyarms

Join me in raising awareness for Rett Syndrome.

Join me in stopping the pain.

Also if you wish please consider donating to one of the Rett Syndrome charities.

Reverse Rett

Cure Rett

Or Via Olivia’s Page @ Girl Power 2 Cure . –

So it’s October

On October 1, 2014 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

So today is the start of October and to me that also means the start of Rett Syndrome awareness month.

This is a month that I work like to crazy to let everyone know about the devastating condition Rett Syndrome.

I have to confess I find Rett Syndrome awareness month hard.

Everywhere I go I am reminded of the condition that stole my daughter from me.

I see the photos, the blog posts and infographics and to be completely truthful I want to scream.

I know this is wrong of me but as much as I want to raise awareness I also want to hide from all that is Rett syndrome.

But I can’t and I won’t.

I may have lost my beautiful girlie to this awful disease but I do not want my friends to lose theirs.

I want everyone to know about Rett Syndrome.

I need everyone to know what amazing strides are being made in research.

I must make everyone know how much fundraising is needed to help fund research and to also help support those effected by the syndrome.

So self pity aside October is Rett Syndrome month and I will be doing my best to let you all know that this condition is out there.

What it is?

Debilitating neurological (movement) disorder that predominantly affects females.

Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old.

Caused by a single gene mutation that leads to underproduction of an important brain protein.

The leading genetic cause of severe impairment in girls – most cannot speak, walk or use their hands.

Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.

As prevalent as Cystic Fibrosis, ALS and Huntington’s.

Who it affects…

Usually affects girls from 6 to 24 months leading to a devastating loss of developed skills.

That every 90 minutes another little girl is born with Rett Syndrome

And that the greatest news is that….

Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.

Did you get all that?

Outside of the Scientific community Rett Syndrome is still relatively unknown. Yet Rett Syndrome is a leading genetic cause of severe disability in females.

This is why we need to raise awareness.

People need to know more about Rett Syndrome.

They need to know that research into this condition has already shown the potential to help unlock other neurological conditions including Alzheimer’s and Parkinson’s.

What you also really need to know is that besides all these devastating symptoms what Rett Syndrome does not take away is the spirit of the girls who suffer from this condition.

Olivia was the strongest most determined girl you would meet. Although Rett Syndrome took away her voice it didn’t take away her desire to communicate. Her eyes became the window to her soul.

Olivia was so mischievous and so very loving her life was about love and laughter.

This is what we have to remember that behind the list of conditions there are girls.

Girls that want what we all desire.

To live life to the full.

To live a life not suffering from epilepsy, movement disorders, breathing abnormalities and so much more.

Help me make this happen.

Help me raise awareness of Rett Syndrome.

I hate Rett Syndrome with a vengeance but I love those girls fighting it everyday.

Help me make their future brighter.

More can be found out about this condition on the websites.

Cure Rett
Reverse Rett….
Girl Power 2 Cure

Please share this post.

Such a loss

On August 12, 2014 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

You would have to be buried deep somewhere last night not to have heard of the tragic death of Robin Williams.

I am still in shock over the awful news.

Robin Williams was one of those men that made you believe you knew him.

From Mork and Mindy to Good Will Hunting his presence filled the screen.

Dead Poets Society was one of those films that changed my thinking.

It gave me the courage to challenge, to wonder.

That was Robin’s Williams gift to the world, one of wonder.

We have laughed so hard at his comedy moments and felt so deep with his straight roles.

The man was true talent.

There are many stories floating around regarding the reasons for his death, many stating his depression.

This saddens me deeply.

Yet it is not surprising.

Its is true that many from the acting profession find themselves experiencing the lows after the highs.

They also find themselves not able to ask for help due to the extreme scrutiny on their lives.

I don’t want to speculate, I don’t know the truth of what was happening in Robin Williams mind.

What I do know is that mental illness is something that needs to be brought out of the shadows.

It is not something anyone should be made to feel shame for.

You can not be blamed for having a mental illness as much as you cannot be blamed for having cancer.

Yet it still lurks in the darkness.

It is time to stop the stigma and discrimination.

One in four people in Britain suffer from mental health problems.

ONE IN FOUR.

This is a frightening statistic and something needs to be done.

We need more funding into services and support but we also need more awareness raised to remove the stigma that is attached to mental illness.

My heart goes out to Robin William’s family .

I can only imagine the pain they are in right now.

But I want to raise awareness today.

If only to reach one person who is suffering right now.

I want them to know they don’t have to be ashamed.

They don’t have to hide.

Please contact someone to support you.

Get help.

Lets us raise our voices in memory of Robin Williams and all those that have fought a battle against mental illness.

Lets be united in ending the discrimination.

In the words of the late man himself

“No matter what people tell you, words and ideas can change the world.”

Robin Williams

Lets start the change today.

Rest in peace Robin.

If you or anyone you know is suffering with a mental health issue there are places you can find support.

Our lines are open 9am – 6pm, Monday – Friday

0300 123 3393
info@mind.org.uk
Text: 86463

CALL US

08457 90 90 90 * (UK)
Calling from ROI?

If there’s something troubling you, then get in touch.

We’re here 24 hours a day, 365 days a year.

If you need a response immediately, it’s best to call us on the phone. (*call charges apply)

EMAIL US

jo@samaritans.org

Seizures suck !!

On March 26, 2014 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

Did you know that this week is National Epilepsy Week?

Its a week dedicated to raising awareness about Epilepsy.

I know a lot more about epilepsy than I wish and you know what?

Its as simple as that!

I have mentioned before on here that Livvy suffered from seizures. They constantly plagued her life. At times she would have over 100 seizures a day. They effected everything she did. her balance, her ability to walk, even her eating. We nearly lost her numerous times to her seizures.

Today many of my friends children suffer with seizures, their lives are scarred by this illness.

Yet little is really known about epilepsy.

When asked many describe the image of a person shaking on the floor violently .This does happens but the thing is there are various types of seizures that are relatively unknown. Some are barely even visible.

Still they effect lives.