All posts by sara

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.

Familiar

 

I miss the familiar, the knowing that this is what happens and how it happens. The routines, the traditions, the moments that make sense.

I find comfort in these, in the knowing and the expectation.

My familiar is changing, whilst I have craved for its continuity it merges like the seasons, Spring into Summer, Autumn into Winter.

This was my normal, this became my new normal and now well, I’m still in the process of adjustment into another new.

I miss those that aren’t in my life anymore, the familiar sibling teasing, annual disagreements and over played songs.

I know life is ever changing but sometimes I just wish It would stand still just a little.

Someone once told me “that life was an adventure”. But every adventurer has to have a time of rest, of recuperation.

Who can endlessly search the oceans, or travel the world?

Who can endlessly swing from moment to moment,
without pause, a breath?

I want to breathe deep right now. I wish I could breathe deep into the smell of Olivia’s freshly washed hair. Breathe deep into the familiarity of what used to be.

But I’m breathing,

My lungs are inhaling the new. The season of thankfulness is upon us and I am so thankful, so very blessed by my new.

My heart it sings for my little man, how the excitement of a an advent and the celebration with him as mine.

My new son, is slowly becoming my familiar.

His blond gentle waves and curls than won’t lie down. The little cusp of his lip that raises with his cheeky smile. The softest of his fingers as he reaches out for my hand. I’m loving my new familiar.

Past, present and future all the combination of my heart. Part of me longs for the moments gone yet another is just so thankful for the now.

I’m torn between the then and the now,

So I close my eyes, open my heart and embrace the familiar.

 

To love is to be vulnerable

I am in a little bit of a state right now, anxiety is winning the battle for my mind and my soul.

I hate that I get this way, I wish I could lie still in the peace of faith but I cannot. In fact I suck at lying still anywhere.

Tomorrow my little one is having an MRI which requires him to have a general anaesthetic and the fear of the ‘what if’s’ are just eating away at me.

Do I pack for more than a day? Can I trust he will be out on the same day as planned and the major one and the truth of my heart, will he be ok?

My head tries to remind me of how many people have this kind of a test each day, how its a simple non invasive test but my heart just is screaming “My son”.

Having a child with complex needs leaves you open and fearful. Your heart and mind goes to places many others never venture. Being a mom who has lost a child my mind has been there and lived it and somehow is just about surviving it.

So why do I do what I do?

This is a question I get asked a lot, mostly from parents who have children with disabilities or those that have lost a child. Why do I put myself back there. Why have I adopted, why a child with complex needs and why do I risk my heart again?

To be truthful I am not sure I have an answer for this question.I think we need to go back to the beginning. I truly believed I was a weird child, I struggled with emotions and worries before I even knew what they were. Sensitive to other people’s feelings to an extent that would have me cry myself to sleep with another’s pain. The world seemed a scary place and people often cold and distance. I didn’t understand people and to be honest I am not sure I actually do now.

I would watch people destroy each other with words out of hate, jealously or indifference and I just wanted to run and hide. I tried often to lose myself between the pages of a book preferring the lands of make believe to reality. When books didn’t work I turned to alcohol just to allow me the freedom from thinking, from caring. A few drinks in and life made more sense or so it seemed. But with sobriety came reality and my reality was that I was difference and that was something I had to find a way to accept, to understand.

I had to learn to embrace who I was and the ways of my heart. Understand that oblivion wasn’t a place I could stay or actually a place I really wanted to be.

I had to find what made me happy and that journey of self acceptance started with my marriage but mostly from becoming a Mom. I guess this reads as mush but I truly believe being a Mom allowed me the freedom to know and understand true love. Everything I wanted for my children was what I had always wanted for the world, It was a real aha moment.  But being a Mom is scary stuff besides having to feed, clothe and keep these little ones alive you are the window through which they start to see the world. I never wanted them to feel weird or difference. I wanted them to realise that they were unique, that each of them had been individually made with purpose. That they were exactly who they were supposed to be.

But guess what if my children were made with purpose and they are exactly who they are supposed to be then by default this means so am I.

Yes I may be a little weird or strange (I’ve been called) my heart may break more often than others and I may love with an intensity that seems insane to others but this is me. This is my heart and just as my girls were perfectly formed in my womb I was in my mothers.

I still strive for answers to questions others don’t understand, I think way more than should be humanly possible (my husbands words) but I am who I was meant to be.

I love to love. 

This is me in a nutshell.

I love the joy of knowing that someone understands how valuable they are, how they are a gift to my life in so many ways. I want everyone on the planet to know their true worth.

Happy clappy, airy fairy, who cares, I am who I am.

So why wouldn’t I be sitting here in a state of fear loving a child that was not born to me. The biology bit is irrelevant, God called me to be his Mama and I am so damned happy he did. Yes it’s scary, yes I am fearful but I am so blessed to love this kid.

Why did I adopt?

Why not, when there are children in this world that needs a home and someone to love them, why shouldn’t I. The complexities of anyone comes in so many difference forms, who cares, we are all uniquely and wonderfully made.

I feel C.S Lewis says it perfectly here, “to love is to be vulnerable” but after spending so many years of my life trying to stay in that dark and safe casket I can truly tell you that right now I am fearful, but I am living fully.

Anxiety, heartbreak and fear they are emotions that do and will often overwhelm me, this is part of who I am. Acceptance of these is still journey I am travelling. But non of these compare to the joy of living my life fully, how being true to my heart is freedom in itself.

Nine years too long

Nine years, nine years why does this number stick in my throat?

Why do I see it as an evil coiled snake with a deadly bite. Nine years ago the venom of loss entered my life, moving through my veins inch by inch with an intensity I could have never imagined. Twisting, turning, absorbing, consuming.

Nine years ago my daughter died. 

Why does the fact that it is nine years burn at my soul, rising like bile from a stomach overflowing with acid.

Why is nine years any worse that eight or seven ?

Why does this number feel like mockery of my heart.

Livvy only lived for nine years.

I only got to hold her for nine years, only got to care for her for nine years, only got to breathe in the sweet smell of her hair, to twist those tiny curls around my finger for nine short years.

She was only mine for nine years.

Right now I’m holding on to the fact that she lived to be nine years and six months. Holding on to that six months as a victory over death. I cannot look towards the day when she has been gone longer than she lived.

Why does it matter, one day without her was agony, a month a living nightmare a year so full of pain I never thought I would survive.

Why does it matter? 

I actually don’t know, I have no reasoning or actual understanding of why this number is now haunting my dreams. I am lost in a insane theory than makes no sense. I feel as if the nine years gone counteract’s the nine years here. That nine years dead removes the nine years lived.

It’s doesn’t make sense but it hurts. The nine is twisting at my soul right now, branded like a weapon from my enemy.

I’m struggling to fight back, reminding myself of the magic of the moments we shared. Arming myself with the promise of eternity, the surety of my love for her.

Time does not erase our love, memories may fade but the heart never forgets. My soul will always remember the sound of her heartbeat as she laid down beside me. My fingers hold on tight to the sensation of twisting her curls around them. Her smell, her laughter,  my heart, my soul they hold them tight like the precious gifts they are.

I will never forget my beautiful daughter, no passage of time will ever erase the impact she made on my life.

I will never forget the way being her mom changed me.

Livvy is my DNA, her genetic code is entwined with mine.

My heart it beats stronger because of loving her.

My soul is kinder because I knew her.

I  am eternity blessed I got to be Livvy’s Mom.

I am forever blessed, I am forever Livvys Mom. 

Lights, camera, hallway

Have you ever started a DIY project and regretted it straight away. Seriously I have now many  times and you would think I would finally have learnt my lesson, yet in September 2016 we decided to update our hall and stairway.

When we had first moved into our home it had the old fashioned artex  on the walls and while it was durable it wasn’t what we wanted and it’s been bugging us for at least the last 10 years.

So as you do you when you have a job that you aren’t skilled for. You find yourself someone who is, or in this case said they were. We found ourselves a plaster and paid him a load of money to make our walls worse than when he had started. I think he had over stretched himself a little and the job was more than he could handle but instead of being left with lovely smooth paintable walls we were left with a mess.

Besides the physical mess I was also left with a husband who lost all enthusiasm for the decorating and was seriously down about everything. Its often said that when you live a life of high stress its the little things that can break you down. This hall, stairs and landing was his little thing.

Fast forward a year of apologising for the state of my hall to visitors I finally decided to take matters into my own hands and ask for advice (this time) on decorators. I wanted a recommendation off someone I trusted thats for sure. Anyhow a few months later I am now in love with my new hall, stairs and landing. The decorators work was spotless and my chosen colour I love and even better I have a happy husband who found his enthusiasm again and got busy changing the bannisters and wood work around the doors. I still have to put back the family gallery but I am super happy with it all.

Anyhow what am I telling you all this because just as we were coming to the end of completion i was contacted by a light company called Litecraft  asking if I would like to review their site and lights. Err yes please, what a perfect way to finish the hall with a new rather dazzling light.

I’m in love

It’s she beautiful.

Litecraft has an amazing range of lighting, and accessories, home decor and much more. Believe me you can spend an hour or two having a browse. I fell for a number of lights, lamps and shades and I’m now planning room decor around some lights that I need. (It’s need not a want).

Ordering was super easy and delivery was swift and the light was well packaged. All you can want from life.

So  right now I am super  happy with my new hall  and stairs but most of all.

He is too…

*I was gifted this light for the purpose of this review, but the choice was my own as are all my opinions.

Marriage is hard work

My husband and I are celebrating our 21st wedding anniversary today and if I could give any advice to a couple just starting out it would be simply this.

Marriage is hard and you need to work at it, always”.

I love my husband deeply but my goodness at times I could have easily walked away from our marriage. I write ‘easily’ because at times walking away would really have been the easiest option.

I do pray that no other couple ever has to face what we have in our 21 years. The loss of our children nearly destroyed us and we had to make a conscious decision to work through our pain and grief together. To find a place where we could internalise and externalise our heartache. I use the term “conscious decision” because that’s actually what it had to be. We had to consciously think of each other when we we could barely deal with ourselves. It would have been so easy to allow ourselves to be consumed by our pain and to be honest it was blooming exhausting to find the strength to acknowledge each other’s.

21 years is a long time and both of us are far from the people we were at the beginning. We have grown in so many ways and often in different ones. We have again had to work on ‘us’ not to get lost in our separate interests or lives. To celebrate our individualities whilst working and enjoying our common interests. We are so different! . From when we first met we seemed like chalk and cheese but Alan allows me to be who I really am. He has encouraged me to develop and grow. I truly believe my marriage saved me, but that’s a whole other story. I admire him greatly and I love him deeply but our marriage does still need work.

One of the first learning curves we had to face was learning our style of love. If you have heard of the “love languages” concept you will know that we all express love in different ways. Some use words, some enjoy time together, others like to do jobs to show their love, whilst others give gifts.

I am a wordy person but words are not my love language I just loved spending time with Alan and could never really understand why he wanted to be apart (clingy much). I just enjoyed his company, his opinions and his attention. The fact that he worked so many hours made the time together special. Alan on the other hand is a doer, he would want to show his love in DIY, cleaning the house anything that he thought would make my life as a Mom easier. We used to and still do clash a lot over this but we have found a place that works for both of us.

And that’s what marriage is “A place for both of you”.

A place where two separates become whole.

But I do truly wish someone had told me 21 years ago that marriage doesn’t come easy. That two individuals even those madly in love aren’t always going to agree on things. Aren’t always going to enjoy the same things or want the same things. How marriage needs to be a dance of giving and taking. Of mutual respect and of trying to see another’s point of view.

It’s a work in progress but a wonderful, exciting, rewarding one.

Thank you Alan for the last 21 years and here’s too many more.

Our work in progress.