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

No, I’m not used to it.

Daniel is having surgery tomorrow and my mind and my heart are in pieces. Whilst I know it’s all for the best reasons my little boy is still going under anaesthetic, he is still at risk.

Yet I often find the comments I receive to be less than what I hoped.

“You are used to it,” He has had many operations, It’s only a simple operation.

The list goes on.

Is there really an understanding that the more I have to face as a medical mom the less it hurts, the less fear I feel?

Let me explain something to you as a medical mom I actually find that it’s worse, I know too much.

If Daniel is ill I don’t find myself reassured by Drs, I know how quick life can change and I question. I want, I need to see the numbers, want to read the results. Take for example a few weeks ago when Daniel had sepsis I asked for a blood test that showed his rising infection marker. Why because I know only too well how quick an Infection can take over Daniel. How quick a little chest infection can turn serious. I actually sometimes pray for the days when I never understood the results never knew what the looks Drs give each other meant or what the next stage in a treatment is. I miss the innocence of ignorance.

Tomorrow I know that surgery, any surgery is a risk. I understand that Daniel’s condition makes him extremely vulnerable and it scares me silly.

I dont become numb to the feelings of handing my son over to the surgeon. I dont ever find it easier as times go on. I will still leave that operating rooms in tears, praying beyond hope that all goes well. Trying with all my heart to trust in the surgeon and the amazing team around him, praying with my heart and soul that God watches over him. It’s not easier and I will never get used to it.

“He has had number of operations now, he is a professional “

Yes my son has been under anaesthetic over 28 times that I can count and hopefully some of those he was to young to remember but it’s never been a pleasant experience for him. A day in surgery isn’t like a day at the park. Surgery brings with it fear, separation anxiety and most often pain. He is 4 years old far from the professional. Please dont trivalise what he goes through.

Its only a simple operation, I have had it done, my kids have had it done.

Yes all of the above, tonsils isn’t classed as a major operation but it Is an airway operation with risks involved but most of all please return to the previous paragraphs it’s my little boy having surgery its going to be my boy at risk and its going to be my boy in pain.

I dont understand at times how Daniel’s complexities mean less compassion. Does the fact that he has all these conditions separate him from the empathy given to others?

Honestly I could drone on about this subject for a long time and extend in so many ways but not now. Not now when my internal filter is broken and I may say more than I wish. Fear is twisting me up inside.

Tomorrow is about Daniel, about praying hard that all goes well. It’s about fighting the fear that tries to invade my brain and it’s about being there when my boy opens his eyes telling him I’m right here and I love you and boy, I do love you.

Uncomfortable

When people talk about living life they often use the phrase “I want to be comfortable”, I wonder if I’m strange as I honestly don’t see life this way. 

You get one life, one chance to make an impact on this world and the people in it so how does being comfortable achieve this?

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Maybe it’s due to my faith but my heart just feels like it has to give all it has. Why love one person when you can love a hundred?

I think often of some of the great people in this world and their lives were far from comfortable. Mother Teresa lived in poverty, Nelson Mandela in prison and of course Jesus, without seeming flippant I think being crucified is the furthest thing from comfortable.

I’m not saying I am any sort of martyr far from it but I want to leave this world knowing I’ve exhausted every ounce of love and compassion my heart can hold. I want my legacy to be about people loved not possessions. 

Now don’t get me wrong I wouldn’t pass up a night at a spa for some pampering but is there anything more fulfilling than knowing you have made someone smile. Realising that someone knows that they are loved, insuring someone feels less alone. 

I get the desire to be comfortable to feel safe. Growing up struggling for money and worried about who knocked the door I get it. Yet even when money was tight my mom never turned anyone away for a meal. 

I don’t know maybe I am strange, I’m happy with that. 

Even today someone asked me if I don’t like rest, of course I do, but I also know I have one life and I want to make the most of it and I’m comfortable with that. 

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