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

It did not end then.

November 7th 2008, should this of been the day Livvy’s story came to an end, the day she left this world for what I believe is a better place.? Should this have been the last ripple she caused on this world? Regardless of what should have been or what could of been, her story did not end there, only here did the next chapter of her story begin. Her promise, her teachings and most of all her hope, the unique new paragraphs of her legacy

If I’m going to be completely transparent as I write here, I have to confess I didn’t see the next page straight away, I stumbled back and forth through the last pages day after day. I questioned the ending, stumbling over the reasons, failing to find the acceptance in what had become. I wasn’t ready for my hero to die, not ready to give up on our numerous adventures and devastated not to have one more of her incredible hugs. I couldn’t see beyond her end. I couldn’t feel beyond the pain of her loss, and grief well it had become my best friend never leaving my side moment by moment, breathe by breathe. 

Right then at that time the only legacy I could see was pain, was loss.

I will not tell you time eased anything because being honest time was an evil that I hated, every day that passed was one more without her. It didn’t ease, time twisted the knife in deeper making her seem farther and farther away. 

Time became my enemy and the past something I prayed for. 

Yet through time I learned that no matter how much your heart breaks the body continues on. 

No matter how you cry out for the world to stop turning, it still spins. 

I will not tell you the next step of my transition came straight away or that I picked up any particular signs but overtime the more I shared my heart about Livvy the more I remembered her fighting spirit. I remembered all the moments Dr’s had given up on her and how she had fought on.

My heart began to feel with her courage, her spirit began to feed through my veins. 

I had to make a decision, a decsion to live,

Determinded to live loving harder. 

I knew In my heart that Livvy had lived loved, she had known a life full of love, security and a lot of laughter. Yet many, many do not know this and this was something I could do, something I wanted to do for others. 

The next chapter was a new beginning, new begining’s for others. Livvy, she may have not been physically here, but my heart held her in every decision I made and in every heart I wanted to heal.

Her legacy is and always will be love.

My children are my reasons. 

When Daniel came into my life she couldn’t have made it more obvious unless she had gift wrapped him with a bow labelled, “send in love from Livvy”. He was ours to love and love hard, he was our gift of joy, heaven send.

Daniel like Livvy is a great reminder of the truth, that life is not measured by days, weeks or years but by the hearts that you make feel whole. Riches are not found in money or fancy things but in the smiles you create. 

Livvy’s story is still unfinished, her legacy is living and loving, right here and right now.

The pages are still being written, chapters yet to be wrote, page by page, memory by memory.

I am enough.

It happened again, I found myself looking around the room willing myself to fit in. Praying that someone will want me to join, hoping beyond hope I would be liked. 

Why do I do this to myself after moving so far forward in finally understanding my own worth here I was in a pit if self doubt, needing to fit into the boxes only I could see.  

The crazy thing is I was welcomed, I was wanted but for that moment I could not see it, I could not feel it. 

I’m remember vividly looking down at my clothes, judging my outfit, wondering if I had my make up on correctly,  all superficial parts of who I am.

When will I learn?

When will I know that who I am is enough, that who I am right now is loved. 

I don’t have to wait until I have achieved this goal or finished that course, 

Right here and now I am worthy of love, I am loved. 

How often do we judge ourselves as unworthy, compare ourselves harshly. 

With a world so quick to tell us how to look, who to be it’s never more important than ever to know how loved we are. 

Every morning I have to remind myself that God doesn’t not make mistakes, that who I am is his creation. 

Every time the fear of rejection tears at my soul I have to stand true to his promises. 

I am worthy, I am loved. 

Another’s eyes

I often wonder what my life looks like through another’s eyes. How do they view me? Do they see the internal struggle I face daily just to be or do they see someone in control?

You see I think I’m like a swan creating the illusion of gracefully swimming through life when in reality my feet are furiously trying to get me in the right direction.

Right now I feel like no matter how hard I paddle the current will always overthrow me. Dragging me the way I dont wish to go. Yet again everyone just sees the graceful not the exhausted.

I think I need to be stop smiling when people tell me ” I have it all together” or correct them when they say ” I don’t know how you manage to do it all”. Speak with the truth ” I dont and cannot”.

No one has or will ever have it all together. Life isn’t meant to be perfect and we are not meant to try and pretend we hold perfection in our hands.

Perfection breeds exclusion, I’m sure, no I know others dont approach me because they believe I cannot understand their struggle. That my decisions meant I’m ok with the constant life battles and that I don’t feel the weariness as they do. The fact is this illusion only adds loneliness to my weariness.

I’m tired of thinking all the time, I’m tired of medical routines and I’m tired of appointments and meetings and fear and worry.

I’m not tired of being Daniel’s mom, but I am lonely living in a world that cannot really be understood unless you live within it.

Daniel depends on me for everything and I’m perfectly ok with that I just get exhausted with the constant battles we face to get him what he needs. I’m frustrated with egos getting in the way of forward movement. I’m angry that budget cuts separates my child from moments and experiences that others can have.

But I will always keep swimming because Daniel is my reason for it all. He and his sisters are my heart but I am learning to stop pretending it’s all ok. Learning to stop saying yes when I really want to say no. Learning to stop trying to be the all as no one person can be.

So if you look through my eyes right now you will see a mom whose heart is full, whose mind is overwhelmed and whose body is in desperate need of a coffee.

One word at a time.

Writing your heart can be both liberating and scary. Sharing your soul to another is hard. You feel vulnerable, open for judgement and misinterpretation. Yet the more I observe the world around me the more I believe now is the time for us to raise our voices, to share our stories. 

Writing Living like Livvy wasn’t easy, sharing my heart with Andre often left me broken. Reliving the memories tore open my heart. I found myself sitting upstairs praying that when I walked downstairs Livvy would be sitting, laughing, clasping her hands with her cheeky smile on face. Writing her story brought her closer but it also renewed the rawness of her loss, the gut-wrenching anguish of the reality. 

Still I am thankful I did it and I’m sure Andre agrees that the hours, days, months invested were worth it. The impact Living like Livvy has made on this world has shocked us both. The ripples the book has created and how far they have reached is wider that I have imagined or dared hope for. Reaching into the hearts of Rett parents, informing professionals and raising awareness one page at a time. 

So, I guess what I am saying is sharing my story made a difference. I’ve received messages, emails from people who feel less alone due to my words. Professionals who have been educated by my story. 

Right now, in this world people are feeling isolated, different as if they are lost in a crowd. If my words can bring one person in from the dark I will continue to write. But my story is not everyone’s, to some my life may be an ocean away from theirs. I may not be the person some can relate to, but you may be. 

You could be. 

I’m not expecting everyone to be able to write a book, but for most of us social media is a tool we use daily. What if we all started being honest on our platforms, started sharing our realities rather than the rose-tinted perception’s we feel people want to see. Sharing our highs, our victories so that people can rejoice with us but also our battles, our daily struggles.

Let’s turn our social media into a celebration of truth.

Fighting off soul tearing comparison with the power of compassion.

Removing envy with the joy of celebration. 

Life was never meant to be a pathway we walk alone. It’s a journey full of laughter and love but it also one full of sadness and tears.

Let’s love one another openly truthfully and transparency. 

How dare it

I tidied my bedroom today, a job I’ve been putting off for months maybe years. My bookcase was overflowing and my make up case was going wild.

I didn’t want to touch the bookcase as I knew it was full of memories and moments I couldn’t repeat. Full of bits and piece’s of my missing little girl.

As I started tidying up I felt extreme anger at the dust, I mean how dare it fall on her things. I know the fault is mine for not keeping on top of it, but common sense often doesn’t play a part in grief.

I remember films I’ve seen of rooms left untouched forgotten by the years, the only visitors being dust and decay.

How blooming dare it.

I wonder if my mind will ever become like the bookcase slowly building up with dust so I cannot see her, hold her memories.

How dare time go by, the days into the years, the years now into a decade.

Is time the dust of the moments?

I’ve cleaned and I’ve dusted and I’ve cried. The tears opening the rawness of the pain, the emptiness of the missing. If love could hold Livvy close she would be wrapped up now in my arms.

As I wipe I am reminded of the numerous times I cleaned those beautiful cheeks. I remember clearly brushing that wayward hair.

I remember,

I remember and I hold on tight to the sound of her laughter in my ears. The touch of her fingers in my mine.

I remember

The dust it may fall and the pages may curl but my heart holds her tight.

Time is not my enemy just the journey
towards my beautiful girl x