I haven’t found the words.

October is coming to a close and I’m rather annoyed at myself. I so wanted it to be a month where I shared my heart and raised awareness of Rett Syndrome, but it hasn’t and I didn’t.

You see I just haven’t been able to find the words. Nothing has come tumbling out, I’ve spent ages looking at a keyboard praying for inspiration and substance.

I so wanted to find the words to let the world know of the evil of Rett syndrome, how it effects the lives of children every day. How it continues to break the hearts of moms, dads, grandparents, siblings and so many more each and every day.

I wanted to tell you of the amazing girls and boys living with this condition and how incredible their parents are surviving and fighting for a cure but I just haven’t found the words.

I wish I could find the letters to string together to share my heart in a new way. I’m just so aware that so many times I’ve brought this conversation to you.

Yet how do I tell you again of the pain of my loss, the words feel stagnant and unnew, yet my brokenness still feels so fresh and raw.

What more can I tell you about my amazing Livvy that I haven’t said before? Does anyone again want to hear about her mischievous smiles or blond beautiful curls? My photos have been seen once before, my magical moments shared and heard once, twice so many times before.

You see Rett syndrome just didn’t break my heart or steal my daughter from me. It also stole our future together, my words they feel repetitive, my emotions like an never ending rollercoaster of which I just want to get off.

I dont have anything new.

I dont have anything new to share of my beautiful girl, she hasn’t been anywhere new, created anymore memories, our story ended then.

Rett syndrome ended our memories then, 7th November 2008.

So I’m sorry I haven’t been the best advocate for this fight, I haven’t been the one coming out of the corner fighting. I’m a little lost in this world right now, not sure of my place.

So instead of trying to repeat our story once more, I want to share with you some amazing families who bless my heart daily. Some incredible moms and dads shining the light into the darkness of Rett Syndrome and some beautiful children that have my heart.

Let me introduce you to Kelly Butler and her beautiful daughter Brooklyn. I wish I could find the words to tell you how much I love this lady and her family. She may not know it but when I was tumbling into the pit of despair after losing Livvy she was one of biggest lifelines. She never let me feel alone and it’s my dearest wish to one day visit the USA and meet with this beautiful woman and to hug her so tight. To get to munch on her beautiful daughter and are equally adorable son. You can find Kelly over on her blog http://specialmommyx2.com/

Kelly has been in the midst of it this last year or so, Brooklyn’s health has been a constant worry and whilst she hasn’t had time to blog in a while, her posts are all so worth a read. Kelly not only raises awareness for Rett Syndrome her handsome (growing up way to quick) son Boston has down syndrome and Kelly will be found fighting his corner too. She is really amazing.

Beautiful Brooklyn

Secondly If someone was to ask me to describe a woman who I admire, who is a tireless warrior against Rett Syndrome as well as being an amazing mom and advocate for her daughter I would easily tell you about Rachael Stevenson. This woman is relentless, her drive and passion is inspirational. Rachael believes and strives for the cure of Rett Syndrome, she was one of the co-founders of Reverse Rett UK back I think nearly 10 years ago determined to raise funds for the vital research for this condition. As well as caring for her gorgeous family her wealth of knowledge and medical know how is mind blowing. Besides the work she does for Reverse Rett UK I find her writing on her blog heartfelt and so true. Life, Rett etc is a really insightful place to visit and read.

Last but in no way least, I want to tell you about a family that I came across only this year or maybe the end of the last one on Instagram. A family I have never met but who have my heart completely. The Foster family, two beautiful identical twin girls with Rett Syndrome, Charlie and Olivia and an adorable new baby girl Madeline, the Foster family are amazing. I am so in love with this family. Cora is so open with their journey allowing us to see how Rett Syndrome has and does affect the lives of her girls and their family. Her and her husband Trey who is a little more camera shy really bless my heart. They work as a team loving on those girls whilst living full professional lives. They are also medical aware in a way I only wish I could be. I follow the Fosters over on their instagram.Pink puzzle pieces They are amazing advocates for Rett Sydrome, beyond sharing their story publicly they do numerous awareness events, fundraising and I’m sure they are involved in the medical research research side to. I absolutely enjoy their posts and admit to being a little smitten by all three of their beautiful girls.

The three families I have shared here are only a tip of a mountain of incredible people raising their voices for Rett Syndrome. With an estimated 1 in every 10 thousand births a child is born with Rett Syndrome the need for more research and more funding is growing.

Livvy’s life may have come to an end on November 7th 2008 but the battle for others is still on. Please I know I have asked this before and I know I will ask it again and again until we have a cure for this evil. Please consider supporting those with Rett Syndrome today.

One day will end the story of Rett syndrome. Please let it be one day soon.

Hello October

How in the world are we already in October, where has the last month gone? Oh yes lost in a mess of sleepless nights, post traumatic stress and so much fear but that’s a completely other post. I need to focus on what October means to me right now and that’s it is Rett Syndrome awareness month.

Now if you have been reading my blog for a while you know I have a love hate relationship with Rett Syndrome, I loved a girl with Rett but I hate that it stole her from me.

My beautiful Livvy had Rett Syndrome, a neurological disorder that affected every part of her life, a neurological disorder that eventually took her life.

Rett syndrome is mean, it takes your beautiful girl or boy and steals them away twice. Livvy was born perfect, she walked, she talked, she smiled but then in the darkness Rett syndrome became the thief in the night and stole all this from her. Livvy struggled to walk and ended up using a wheelchair, Livvy lost her words, I lost the joy of hearing her call my name. Livvy lost the ability to control her breathing, hyperventilating to the point of blueness. Seizures, evil seizures tearing into her days endlessly robbing her of her joy.

Livvy lost her life to Rett Syndrome, again the thief in the night came and took her away from me. Leaving emptiness and brokenness where a blond haired bundle of joy once was.

Rett syndrome is an evil and one I want the world to know about. One I want to shout about. I want a cure so desperately, yes I know it’s too late for Livvy but not for the other beautiful children out there fighting against this syndrome. I want a cure so our girls and boys can live life free from this evil. I so want this cure so that moms and dads can sleep at night without fear.

I want this cure now.

Please God now xx