Lets Live like Livvy

Wow, what a roller coaster these last two weeks have been, the release of Living like Livvy has sent me through a cascade of emotions. I have laughed a lot and I have cried a great deal. Sharing Livvy with the world has been amazing and blessed my heart more than words could ever describe, its also left me feeling emotionally raw and extremely vulnerable.

Still it’s been worthwhile, we have raised so much awareness and an incredible about of money already and this is just the beginning.

Yet I want to write about something that has really been my inspiration to keep on sharing our story.

I have been receiving emails and Facebook posts from people who have read the book and who have been inspired to Live like Livvy.

Both Andre and I have received photo’s and videos from Rett families and others who have planned events and gone places they never would before. They have been challenged and encouraged by “Living like Livvy” to step outside their comfort zones, their safe zones and to make the moments matter. 

This is amazing and more than I could of ever imagined. I often write here about the importance of the magic in the moments. How none of us should ever take this life for granted, but to live fully and love hard. This was the greatest lesson Livvy ever taught me.

Confession time though, I’ve realised that since losing Livvy I haven’t been making the moments matter as much as I should of.

So I’m setting myself a challenge and extending it to you all. Lets make those memories.

Let’s fill social media with memory magic, using the hashtag           #LivinglikeLivvy lets get out there and have some fun.

Sharing our fun hopefully will encourage many more to make the moments matter.

Lets do this, lets Live like Livvy.

 

 

Privilege

As I sit here breathing in the smell of my son who lies in my arms I know privilege.

The gift of full arms, of a full heart is so obvious to me. Yet others seem to feel the need to tell me how lucky he is, how fortunate.

I’m not sure if my view of adoption is different to others but I know without a doubt how privileged I am to call this boy, my son.

Each day I get to witness his smile, to hold his hand in mine, to hear him cry out for me his Mama.

I get to love this precious one.

That is my idea of pure privilege.

Living like Livvy

So it’s finally here, a years worth of work, a lifetime of memories all collated together in “Living with Livvy.”

I’m so excited to share my girlie with you all, for you to read and learn how incredibly brave and courageous she was. I’m also feeling extremely vulnerable as well. Here in these pages I have not held back, I have opened my heart and my soul and its laid bare for you all to see.

It’s not been an easy journey, i have returned to places in my mind I was trying to hide from. Revisiting some of the hardest moments I have every faced.

Yet it will be worth it, if this book educated one more person about Rett Syndrome if it raises more funds for Reverse Rett Uk it will be worth it.

So people, I am laying out my heart and soul here for you all so please, please support me in this venture. Go visit Amazon and purchase my book and help me raise much needed funds, help me help those working tirelessly to one day have Rett syndrome cured. One day have this diagnoses be one not of fear.

It can happen and it will happen,  let’s help  make it so.

Please visit Amazon and purchase the book, please let your friends, family, coworkers know about the book. Share this post on your social media, lets get “Living like Livvy” out into the hearts of minds of everyone. Lets make Livvy”s legacy really one of hope, lets do her proud.

Surrender

When I saw today’s word I was surprised by how apt it is for me and the time I’m in now. As tomorrow is the launch date of my story, a book that shares the journey of the life of my late daughter Livvy.

I haven’t written the book, I could never find the way to detach from the moment to write in clarity. It’s been written by an amazing man who over the last year has let me cry on his shoulder, encouraged me to remember and then used his words to explain my heart to honour my daughter.

It’s not been easy I have to surrender my heart and my soul, to share truthfully and openly my story. Allowing my mind to go to places that it’s had tried to protect me from. Having to surrender to the pain I faced to find the words to bring reverence to the courage of my beautiful daughter.

Yet as I sit here excited for release day tomorrow I confess I am nervous. Tomorrow between these pages those that read it will know my heart. They will walk my journey through Olivia’s life with me. I’m not expecting judgement, I’m not expecting dislike but transparency can come at cost.

Still it’s a cost I’m willing to pay in hope that one more person learns of the devastating condition of Rett Syndrome. Learns what each and every girl has to face each day. Understands maybe a little more the pain and anguish the parents and families face.

I’m surrendering my soul in awareness, sharing my heart in hope.

Hope that those that read will learn of the condition, pray that one day a cure will be found for this evil syndrome.

But more than this I hope and pray that people learn that life is a gift not to be kept perfectly wrapped up in a pretty bow but a life that should be ripped open and enjoyed to the max.

I learned the hard way that none of us have the promise of forever, but we all do have the gift of today.

Go live it xxx

Joining in again with the Five minute Friday party.

Intentional

I wonder if I am the only person who self analyses themselves daily? I sit in bed each night wondering if the decisions of the day were the right ones or if I could have done something different or better. Yes these self refections sessions often do turn to self judgement but its something I have always done and at my age I cannot imagine me stopping.

Yet since the beginning of this year I have seen a change in the way I reflect upon myself.

I am finally allowing myself some space, I’ve become intentional in the decisions that I am making. Saying yes when I only actually wish to do something, saying No when I need to.

I’m learning to give myself peace, switching off from social media, leaving emails to the next day. I am finally understanding that I can not be all things to all people, I have to focus on the roles that fill my heart.

This is a massive emotional step forward for me, so often I have said yes not because I have wanted to but because I have not wanted to upset another, to let others down. Finding myself stretched and exhausted and often extremely unhappy.

I am learning its ok to sit with a baby in your arms and just breathe in their innocent smell. To veg on the sofa and watch too many episodes of the big bang theory, to relax in a bath until the water goes cold.

I’m realising that my body needs rest, that if the baby is awake through the night that the care hours can be used to sleep and recharge.

Its been a journey of intention and one that has made me smile a lot more.

How did i get to the place where self care felt wrong. That by taking care of myself I was being selfish and lazy? How did I let myself down so often?

I don’t know, or maybe I do but just don’t want to face it right now. Maybe that in itself is self care, sometimes its okay to just move forward without having to understand the past.

So 2018 I am moving forward, being kind to others and myself.

Intentional self care. 

 

 

Women of spirit.

So I’m entering 2018 really excited to be a woman, it finally seems that women are coming together to say enough is enough. Last night’s Golden Globes saw women and men standing together to say “Time’s Up”. With Oprah’s speech receiving the loudest applause as she stated

“For too long, women have not been heard or believed if they dare speak the truth to the power of those men. But their time is up. Their time is up!”

Oprah speaks the truth and I finally feel that women’s voices are going to be louder and stronger than ever, and its about time too.

The collective of voices shouting Me too will hopefully encourage others to stand up against whatever discrimination they are facing.

Knowing that you are not alone gives many strength.

At the end of last year I was gifted an amazing book titled “Women of Spirit”,  compiled and photographed by Susie Mackie, and over the Christmas period I have worked my way through this book, often finding myself in tears at the bravery and strength of the women who share their stories between the pages.

Women who have faced so much throughout their lives yet still move forward with such courage. Refusing to be beaten they somehow found the strength to fight.

Truly incredible women.

Women sharing their stories in hope of inspiring others to live their lives with transparency and strength. “ If we can do it so can you.”.

In a time where woman are so needed to support one another this book was a breathe of fresh air for my lungs. When the news is full of so much hate and discrimination this book just sings hope.

If you are searching for inspiration or just want to read the stories of 20 incredible women I highly recommend this book.

Bye bye 2017, Hello 2018

So as we begin 2018 its only right that we take time to reflect on 2017 and all this year has brought us.

1.What was your happiest event?

This is an easy one to answer, the adoption of Daniel. Although we have had Daniel as part of our family since December 2015 being able to officially call him my son was such an amazing day and one I will cherish for a lifetime. It is the day the paperwork caught up with my heart.

2. What was the saddest thing to happen?

We lost more children to Rett Syndrome, each one breaks my heart. I pray that this year will be the one of the cure.

3. What was the most unlikely thing to happen that actually went ahead and did?

I had my first jager bomb and got gloriously drunk with a group of new friends and ended the night dancing in a 80’s/90’s nightclub. Not something I would do often but it was nice to let myself go especially after the year we had.

4. Who let you down?

I don’t actually think people ever mean to let others down, sometimes I wonder if I do have too high expectations but I’m working on entering 2018 stronger in myself and relationships.

5. Who supported you?

This list is vast, from family, friends, church, internet peeps its been an intense year but I have felt myself lifted up by so many.

6. Tell us what you learned

I am responsible for my own happiness, I often find myself feeling upset by others yet I am not responsible for them. My happiness, my joy is mine to find. I cannot expect others to know what I want if I don’t, so I’m excited to work on this in 2018, making more time for myself and my hopes and dreams.

7. Tell us what made you laugh

So many things, I have a really dry sense of humour and love nothing more than a good belly giggle.

8. Tell us the things that made you cry

Anyone who knows me will tell you I am a crier, I mean even adverts set me off. Yes 2017 has brought me to tears in so many ways, the loss of too many too soon. The current governments disregard for human life, seeing first hand people waiting in hospital corridors on trollies in pain. Doctors and nurses searching around for much needed equipment. Food banks, family breakdowns due to financial pressures, and so much more.

I have watched families with children with disabilities battle daily for essential equipment, support and care. Watching those who try to live the best way they can be belittled and broken by a system that cares more about profit than people.

I need to believe we are a world that loves, yet right now I am having to search for the light in the darkness.

9. Tell us three things your child or children did to make you feel proud.

My children make me proud everyday.

This year my eldest Kennedy, graduated university and is now doing a Master’s. I love her thirst for study and cannot wait to see where the future takes her.

Eden has started a new job and is doing so well, proving finally to herself what we have always known, she is awesome.

Brodie has left school and started at college, her confidence has grown incredibly and whilst she still is anxious she is finding the courage to live life to the fullest.

Daniel has done so well this year, although the beginning of 2017 was rather scary he has defined the odds in so many ways. He is really expediting expectations, I love watching his character form.

10. Tell us the things that made you proud of yourself.

This is a hard one as I struggle to see pride in myself yet over this last year I can see I have become stronger. The adoption process made me really look at who I am and besides gaining a new son I have finally realised that I’m not too bad.

11. Tell us the challenges you overcame

Life is a challenge so everyday I am learning to see all that I have overcome and to pat myself on my back now and again. I have faced situations which I would normally shy away from but I’ve also learnt to say No. This has been a massive challenge for me.

12. Tell us the things you would like to change about your life in 2018

I want to be a builder in 2018.

Building on my education

Building on my friendships

Building on my writing

Building on my family,

Building more laughter into my life.

But most of building the memories.

Life is for living, hoping 2018 is a year of living life to the fullest, loving hard and laughing louder.

 

 

 

Joining in with https://kateonthinice.com and her HIGHS AND LOWS OF 2017 link up.

Feel free to join in if you want to

1. What was your happiest event?

2. What was the saddest thing to happen?

3. What was the most unlikely thing to happen that actually went ahead and did?.

4. Who let you down?

5. Who supported you?

6. Tell us what you learned.

7. Tell us what made you laugh

8. Tell us the things that made you cry

9. Tell us three things your child or children did to make you feel proud. Please miss this question out if you are not a parent.

10. Tell us the things that made you proud of yourself.

11. Tell us the challenges you overcame

12. Tell us the things you would like to change about your life in 2018

I survived Christmas

So I’ve survived Christmas just about, it’s certainly had its moments. Having a toddler again after such a long time has brought back the element of magic into the season. The excitement of Santa isn’t the same for stroppy teenager and young adults as it is for a three year old. It’s been wonderful for me to allow the joy to be central again. I’m not saying my three girls don’t bring me joy but not one of them would put a mince pie out for Santa or a carrot for Rudolph, I mean how rude.

Christmas hasn’t been the same since Livvy passed I cannot try and pretend it is but this years was special in its own new kind of way. Daniel does in no way replace Livvy but his new dimension is certainly one of innocence which until now looking back I didn’t realise how much I missed. Whilst Livvy often found Christmas overwhelming her excitement and giggles certainly did bring upliftment.

In fact her inability to handle the stresses of the season made us all slow down and work out what was actually needed to celebrate. Not held down by the unrealistic expectations.

Christmas should be a time of celebration of togetherness. The gifts we share aren’t about the cost involved but the fact that we love one another.

For me personally it’s a celebration of the birth of hope. I celebrate the promise that one day my heart will be whole again.

So I’m hoping you have all had a wonderful celebration. I hope Santa has brought you all what you wished but most of all I’m hoping the season has brought your memories to cherish.

The greatest gifts ever xx

No drama

I had a friend once, I use the term friend rather loosely now but then she was what I would class as dear to me. We had walked though a lot together and I assumed we would continue to do so.

Then when in the midst of Livvy’s regression I was crying down the phone to her when she uttered the words that have scarred my heart for such a long term “I swear your life is like a trashy soap opera, everything happens to you, or maybe you just like the drama”.

I remember the impact of these words as if it was yesterday. How anyone could believe that this was the journey of life I had wanted to take was beyond me but to accuse me of being dramatic hurt. In fact it hurt so much that I shut down, I didn’t allow my feelings to show. I closed the door on that friendship and many others in fear of judgement.

Why am I telling you all this?

Because I am in a place now where I am ready to own my own story. Ready to embrace what I have lived, not with echoes of shame but with pride.

Having a child who was born with a debiliatiting condition was hard but not knowing what it was and not expecting it was literally a nightmare. I cannot find the words to explain how painful it was to lose my daughter to Rett Syndrome, twice. Watching her eyes leave my face, her words disappear from my ears and her movements lost to the stereotypical.

To see the fear in her eyes as she screamed and screamed, crying out for me to rescue her. It broke me in inside, I cried out to God so often to heal her.

But he didn’t.

Yet slowly and surely he healed me.

I finally began to embrace the journey I was set upon, although it was very different from anything I could have ever imagined it was full of wonder and joy.

Joy, does that surprise you?

My daughter had a severe devastating condition, my son has a very complex disability but both of them loved, loves life in a way that brought, that brings me so much light.

It’s took me a long time to get to a place where I don’t apologise for what some see “as drama” in my life.

I have surrounded myself with people who get it or who try to understand it.

I have walked away from those who don’t or who don’t want to.

I can accept that some people cannot understand the life I lived or now the life I have chosen and that’s ok.

We are never going to be a typical family and I am embracing that, celebrating that.

Yes at times I am lonely and I do get sad at having to apologise for another missed get together, group activity or friendship meal.

But my children will always be my first priority, always my heart.

I don’t know if my friend understood the impact of her words or how they would change me inside. Maybe it was meant as a throw away comment that wasn’t supposed to find roots and bury itself deep.

Maybe it was my state of mind back then that fed and watered these seeds of deceit.

I don’t know and I actually don’t care.

Because I’m not that person anymore.

I cannot say that harsh words don’t still sting or dig deep in my heart, but they don’t get to stay and or get to take root anymore.

I am stronger than I have ever been.

I have faced the darkness of death and my memories, love brought me the light.

I face the suffocation of fear but my sons smile breathes air into my lungs.

My children are my world, they are the air that I need to breathe.

I am stronger for being their Mama.

My faith is stronger than my fear.

Only

There is no time limit on grief, yet recently after spending an afternoon with another bereaved mother I do wonder if the rest of the world has not got this memo.

Is there an unspoken, unwritten set of rules that no one has let me in on?

It breaks my heart to hear another who feels she needs to say no more because her loss has been years not days. Worrying that others will judge or be fed up of her pain.

I so get this, I so understand the agony of the awkward silence. The fear that you will ruin people’s moments.

The pain of loss is timeless, your heart is forever missing a piece.

Yet the world still carries on and time still passes by.

If only the world could understand that our world has forever changed. That the next breathe in will always be different to the one before.

If only people wouldn’t expect us to be the same people we were before, we cannot and never will be.

You see the loss of a child is like no other, I make no apologies for stating that because it isn’t.

A child is a little one full from the top of their heads to the tips of their toes with dreams, aspirations you have for them.

What would they look like, whose characteristics have they inherited?

Will they love music, books, to dance?

Will they prefer science, maths or English?

Will they fall in love, be happy and content?

Can I keep them safe and protected?

From the moment that you hold them in your womb, your arms you life’s destination is their happiness.

Your life’s work is their hearts.

So how can your ever be the same, how can you ever get over it?

How can you ever breathe completely again with a missing piece of your heart.

If only.

* Joining in again with Five minute Friday, take the prompt of the week and let’s the words flow.