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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My favourite day

To lay down your life for someone is a concept many of us will never have to consider.

We pray it’s never a situation we have to face.

I mean would we lay down our lives for our children our families ,maybe but for strangers?

For people that openly hate us?

Today is my favourite day of the year, a day that brings pure joy to my heart.

A promise made

A promise honoured

The truest definition of hope.

I need today, I need the enormity of the sacrifice to refresh my soul.

I need to know true love.

I need to know the grave has no hold on anyone.

I need to know I am not alone.

I am not alone.

Hallelujah

We need to remember what Livvy taught us.

I worry we are forgetting, not about Olivia herself but all that she taught us.

I can still see her in my mind clear as yesterday. Her blond hair that twirled between my fingers. Her cute mouth and the way it did it’s little Elvis curl.

I can hear her giggle at the silly things or the most incorrect moments.

Her teasing way towards her sisters, her daddy.

I can see it all and I’m so thankful for this but what she taught us is slipping through my fingers, through her Daddies fingers.

To make the moments matter.

This was what Livvy taught us, on the day of her diagnosis we realised that we didn’t have forever so we needed to focus, needed to revalue and we needed to make the moments matter.

We were never going to be wealthy enough for amazing trips but Livvy didn’t care less where she was as long as there was laughter in the air.

Give her a sea shore and splashing waves and she was content.

Give her a battered roe and couple of your chips and she was happy.

Give her your arms to snuggle in and she was in her moment.

Life has become a little forgetful as of late. The normal is invading into our moments a little more than I like. Laughter feels rationed and magical moments are becoming less.

I know we cannot live in a permanent state of magic but we do need a reminder of what Livvy taught us.

Daniel needs us to remember.

Yes money is tight and that always adds the extra weight upon anyone’s shoulders but money does not equate happiness and it doesn’t bring guarantees.

I want to remember the moments we shared.

I want to create new moments for Daniel.

Tropical hurricanes aside I want magical moments again. I want to laugh until I cannot breathe, dance in the rain, drink tea with friends whilst the night sky entertains us with star dances.

I want to throw Daniel into moments the Drs never imagined for him, defy odds and breathe life in deeply.

I want to remember what Livvy taught us and make her proud by being her best student.

I don’t want to forget, we all need not to forget.

Life is for living,

Living like Livvy.

Celebrating the gift of motherhood.

Mother’s day is a day of celebration, a day where we honour the bond of a mother and a child. The period of time you are a mother is irrelevant. Physical birthing isn’t a necessary. Motherhood is about loving someone more than yourself. Living and breathing for their dreams to come true.

I adore being a mother, from the moment I knew I was carrying my first child in my womb my heart has loved hard. I’ve made mistakes, I’ve messed up and I’m sure I still will but my children are my life, my world.

One of the hardest things I have faced as a mom is letting go, watching my children grow and flourish and become Independant and assured. Seeing them bravely love, suffer, face heartache and rejection. The overwhelming urge to take them away from painful situations, to stop them before they try. Yet as a mom I’ve had to let them be, to live is to learn.

I am a mom to four amazing daughters and one handsome son, each one so beautiful and incredible in their own right. Individual with their own needs, wishes and dreams.

My dearest Livvy is in heaven and whilst the veil of this lifetime separates us physically now. No time, space or worlds can separate the love of this Mom from her daughter. My soul craves for my girl, my arms ache to hold her. My heart will be forever missing a piece, beating with a broken melody.

Yet I would do it all again in a heartbeat.

Mother’s Day is a celebration and I have a lot to be thankful for. So I’m going to hold on tight to the memories, run forward widely into the future with the knowledge that the greatest role I get to live, is that of a mother.

How blessed am I?