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.