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. 

Eleven years and time still continues on.

Sometimes I get angry at time I dont understand how one minute can often seem like lifetime then others fly past like a gush of wind.

You know when you are so excited to go on holiday that the days before your trip seem endless. Then when you are finally away the days just shoot on by.

It seems as if time is often controlled or interperted by our own emotions.

When I was young a year seemed like forever yet now as I am older the years feel like minutes.

I remember when my girls were born, my hopes, my dreams for them all, how they were to grow, learn, love. I never consider time running out on us. Never imagined that one of their journeys would end before mine.

Life played a cruel hand and I lost my Livvy.

Time, oh time, you beautiful, awful thing.

I had nine and a half years with my beautiful girl. Nine and a half years filled with so many special memories but nine and a half years is not enough I wanted my lifetime.

A parent is not supposed to out live their child, it’s as simple as that or so it should be.

Yet the seconds still continue on and the minutes turn into hours and life moves on.

Eleven years, eleven long years since my darling Livvy went to Jesus. I still dont understand why, I only know the how. Eleven years now of moments she wasn’t part of, new memories she was not here to create.

Time they say is a healer I disagree but it has certainly been a teacher.

Over this last eleven years I have had to learn a lot, learn how to live without my beautiful girl, learn how to breathe through the agony of grief, learn how to survive with a missing piece.

Yet most of all time has taught me that still every moment matters.

I was so blessed to have nine and a half years of my beautiful girl, I’m so incredible thankful I have all the memories that I cherish. But I also know that time does go on and that life is a gift and you have to still make the minutes matter.

I know in my heart that Livvy wants me to make my days count. So I’m going to love hard and try to bring some of the joy she brought to me to others.

I want to honour her memory by loving, laughing and living. Livvy is one of my four beautiful girls and whilst I miss her every day I still hear her in her sisters laughter. See her in the sparkle of their eyes. I know she is with us, watching her sister grow, fall in love and make me so proud in all that they do.

I have no doubt that Livvy send Daniel my way, even today talking to his teachers about his mischievous ways there was a moment, a moment when a memory echoed through the school corridor of a blond haired fireball of mischief. A sister leaving footprints for her brother to follow.

I miss my beautiful girl so much but I know how blessed I was and how lucky I still am. One day I will hold my daughter in my arms again and my heart will be whole. Until then my dear Livvy I will love the hardest I possibly can just as you taught me.

Until we meet again, I love you my sweet baby girl. Xxx