What do I have left to share?

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. 

Nobel Laureates 2013

I was so excited to read this today.

Thomson Reuters Predicts 2013 Nobel Laureates

Why you may ask.

Well its simple there in PHYSIOLOGY or MEDICINE category is Dr Adrian P. Bird a Buchanan Professor of Genetics at the University of Edinburgh Scotland.

This man may not be known to you but for Rett Syndrome parents everywhere this man gave us hope.

In 2007 it was in this lab that researchers were able to demonstrate that Rett Syndrome is hypothetically reversible.

Hope.

It was and is because of the tireless research and expertise by Dr Adrian Bird and others like him that the cure is now not just a dream but is within our grasp.

I  had the honour of  briefly meeting Dr Bird a few years ago and was impressed not just by his commitment to his research but also by his dedication to the plight of our girls. His compassion to me when I told him of the loss of Livvy will always stay with me.

The winners of the above award will be announced on Monday. I pray that Dr Adrian Bird receives the recognition he deserves. I also pray that this would bring Rett research to the forefront of  the scientific community.

Whatever the outcome Dr Bird is my hero already.

 

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Am I still part of this tribe?

I’ve been feeling lost the last few months. The groups, tribes I belong to are changing and in doing so is my identity.

Who am I?

9 years ago I entered a group I wasn’t prepared for.

One that scared me.
One I didn’t want to enter.

I entered the world of Rett syndrome.

Yet being part of this world brought me fear an pain but it also blessed me with friendships and faith.

I was mom who found herself lost in an unknown world.

Yet by being lost I got found.

By being scared I found courage.

And In weakness I found my strength.

Together with my family we faced moments that took our breathe away with joy, but also moments that broke our heart with pain.

Yet as a member of this tribe I belonged.

Now I don’t !

It is said once a Rett mom always a Rett mom but is that true?

A community that I belonged whole hearted to, seems to be moving on without me.

Of course my friends are still my friends, but do I really walk alongside them anymore?

I just don’t know!

Can you stay part of a group if life changes.

I don’t know,

While my heart and soul prays desperately and faithfully for the cure of Rett syndrome, my heart aches that it’s to late for Livvy.

Is this evil of me?

I think it’s this that is tearing me up inside If I’m honest.

The barriers I’m forming may be built on the fact that I hate that I feel this way.

It’s not that I begrudge the cure gosh NO. I sincerely pray and hope to see all released from the torture of Rett syndrome and will continue to do all that I can to make this cure happen.

I’m just angry it’s too late for Livvy.

I’m cross that I’m not part of this group anymore.

I’m missing my baby and my life as her mother.

Where do I belong now?

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