Tag: words

Doing

On By rebelwithkindnessIn griefLeave a comment

How am I doing?

A valid question I guess but I don’t have a answer unless it’s ok to just say “doing”. I wake up each morning to a life I don’t want, a life that’s missing so much that it hurts from the first moment my eyes open. I’m trying to be better, trying to behave like life is still worth it, but right now it’s not. I hate that I feel this way, hate that I cannot find the old me who could find joy in anything. No that’s a lie, the old me pretended to find joy.

Faking is my superpower I guess.

I miss my beautiful boy, how hollow are these words, they just feel empty because the depth of my emotions cannot fit into the space of these letters.” Missing Daniel “ doesn’t really comprehend the devastation and the brokenness.

I’m living a life I had never planned for, it’s not a bad life, I like my job and I do wish to progress and grow but it’s hard to enjoy when the reason you are there wasn’t your choice. The reason you aren’t in your happy place loving on your boy wasn’t your choice. You,me, my life. How easy is it for me to feel like a spectator in my own existence. On the outside looking in, not consciously attaching myself to the weirdness of a world that shouldn’t exist, a world without my beautiful boy.

It’s normally about here where I try to reach for the reason, reach for something, or to somehow make it right but there isn’t any right. There isn’t any silver lining, if there are lessons for me to learn well the teacher can go do one, losing one child gave me the opportunity to painfully learn and grow, two has fucking destroyed me.

I don’t feel like there is a way back anymore, the Sara I was has gone, broken pieces are just left behind. Will those pieces come together to reform, knit together to create someone new, I have no idea. Right now they, no i am just broken.

Broken

You cannot rush grief

On By rebelwithkindnessIn Dear Daniel, grief, UncategorizedLeave a comment

Ok ok I’ve made a rookie error. You know this grief business, well you would think I would be be an expert. Losing three children, one would assume I would have this grief journey down. I wouldn’t need the map or sat nav; this journey should be set in my sub conscious, innate directions.

So why oh why am I finding myself trying to rush through to the end. You know the part where you find some acceptance and maybe a little peace. Come on Sara you should know better that this, there are no short cuts and no quick way through. There isn’t even a toll road that costs you a fortune but cuts out half of the journey time. Nope, no chance,not happening.

No matter how much you don’t want it to the pain of grief has to be lived, the reason why is simple , we love.

Right now it’s perfectly ok and right for me to be lost in the pain of losing Daniel. It’s correct for me to find every breathe painful in missing him. My tears should fall and my heart should be broken because I loved my beautiful boy, I love him, desperately.

Changing the sofa around, painting the walls even maybe putting his toy box out of sight may be what I need to do just to calm the waves but a fresh lick of paint won’t erase the memories of Daniel giggling on the sofa, holding him on my lap, snuggling into my chest, nothing will.

There are no short cuts in grief. What is it the Going on bear hunt book says “you can’t over it, your can’t go under it, you have to go through it”.

I know why I’m trying to push through the pain, the truth is I’m scared I won’t survive it. I survived losing Livvy by the love and need of her sisters, I am truly scared I’m not strong enough to survive losing Daniel.

I’m actually really scared of this darkness I feel.

My whole world changed with Daniels death, my identity as his mom, his carer, his nurse, physio et etc all disappearing with his last breath. He was, my purpose, my joy and my reason. My life was planned with him, I still cannot comprehend a life without him. It’s like my mind just won’t go there, a robot stuck moving back and forth “I just can’t compute, I just can’t compute”.

Oh gosh I’ve sat here thinking how better it would be to be a robot with no feelings, no emotions, no grief ; yet I wouldn’t be happy. I’m a person that feels intensely, if you are loved by me, well you get loved my me. I don’t do half measures. I tell myself I will protect my heart again and again but if I had of done that then I wouldn’t have had the gift of Daniel. I got to love and care for my boy for 6 years, I got to wake up knowing cuddles awaited me, that smiles that would fill my heart would bless my day.

I have spoken and walked through child loss with a number of people over the years ( too many ) and the one thing I tell them is it’s ok to feel broken, it’s ok to feel the pain, because you loved. Give yourself time and to be kind to yourself. This wasn’t how life should be.

Missing someone you love will never be easy and it shouldn’t be. This pain, this agony that I feel now it’s worth it, because I got to love Daniel and if I had to live this pain all over again for just one more moment with my boy I would do so.

So right now all I have to do is be, to be whatever I need me to be, to hold on and allow myself to grieve. There is no rushing grief, it sets it’s own timetable just like love does, as it should because grief is the love we cannot give and I love Daniel intensely.

Start here

On By rebelwithkindnessIn UncategorizedLeave a comment

I’ve decided to try and follow a January prompts writing plan. This year is for me to be about learning to enjoy writing again without the pressure of a false idea of perfection.

So here we go.

January 1st : Start here

Start here at the beginning, this should be a time of excitement and anticipation yet I always struggle to start anything. The fear of failure looms above me like the dark cloud on a miserable day. Expectation breeds anxiety inside of me, I’m scared to fail before I even try.

I’ve learned a lot about myself this last year especially. How I have build up false accounts in my mind to protect me. I had convinced myself of so many falsehoods, hiding myself from judgement or the pain of broken promises.

I’m examining these lies I’ve told myself and trying to work out what’s truth from the protective façade.

From simple things like I don’t like craft to places I have convinced myself I don’t wish to visit. Unpicking the pain and brokenness and trusting myself to make my own judgements. Not allowing the past to define my future.

This may just sound vague and that’s ok. Todays not the day to open wounds in a public arena but a day that I start to allow myself to heal.

Trusting myself to feel the rejection and stand strong in my own truth.

Believing that I am ready to finally allow myself to be me.

So here on the first day of the new year, I allow myself to begin to heal.

To begin a journey of new understanding.

Let’s

Start here.

Let’s find me.

Desperate

On By rebelwithkindnessIn Five minute Friday15 Comments

I woke last night screaming, somehow my sleep had become a time machine and I was there again in the hospital begging my child to wake. Desperate to see her chest rise again, begging the Lord to save her.

How can 12 years just disappear in a moment?

Yet I know in grief, time is only my enemy.

I miss my girlie so much, how I wish I could just hold her in my arms once more, to just breathe in the sweet smell of her hair.

Grief is a complex devil, playing games with your heart moment by moment, memory by memory.

Does it ever end?

Only with eternity I guess.

Oh I never knew the heart could survive such pain. The crushing weight becoming bearable against my wishes.

I don’t want to sleep again, I had to leave her once I’m not sure I could do it again.

Why does your memory invade your dreams?

Is there nowhere free from grief?

I couldn’t pretend for a while, I could not create the facade of being ok in those darkness hours. So I let the tears fall and as my whole soul hiccuped through my body I allowed myself to miss her.

I let the memories swarm my mind like a tapestry of bees as they create their honey, I created my moments again. I held her in my arms, I heard her sweet giggle of mischief on the symphony of the night and I breathed her in deep and I sobbed.

I still don’t understand why I had to lose her, why Rett Syndrome had to win the battle for her life. Yet I know it wasn’t for the lack of love. My Livvy, their Livvy, your Livvy was loved with the depths of so many hearts.

If love could have saved her life she would be here.

No the question still stands unanswered, our hearts still forever broken.

I couldn’t breathe anymore the tears had tore my soul and I did fall into an exhausted sleep.

I wake still desperate to hold my daughter once again.

The new day begins,

I trust, I breathe and I hope.

Until we meet again my beautiful girl, until.

Joining in again with five minute Friday, set your timer for five minutes and write.

It’s not ok that our children died.

On By rebelwithkindnessIn UncategorizedLeave a comment

Often when we face a loss in our community of special needs parenting, our hearts break alongside those facing the pain. We emphasise with the anger and missing we feel the disbelief and sadness. Myself personally I ache for the pain I know those left behind will feel. Each new loss reopening a wound that is far from healed.

Yet one of the things I still do not understand about loss in the disability community is that from those outside of it, is the feeling that somehow it’s acceptable. That in some way it is less. The concept that a life lived with a disability is not as full as one without.

There is no denying that being part of the special needs community we face loss maybe more than most, the wider our community the wider amount of pain. But that’s our life, we choose to walk alongside one another through the good and the bad. We celebrate the achievements and too often we have to grieve the loss.

Yet often those outside the community do not understand our journey and more often than I would like, do not understand our joy.

Statements like “oh well she had been poorly for a while” “sometimes it’s for the best” or my favourite (irony) “God knows best”.

When Livvy died she had a devastating neurological condition. Her body faced so many obstacles, seizures, abnormal breathing, sometimes uncontrollable movements. Yes, to list her conditions it may seem dire. Yet what the reality was that yes she had this list of issues but what she also had was a life filled with love and laughter. She had a family that adored her, she had parents she wrapped around her fingers. Sisters she teased and played with. Teachers she adored, friends she loved. Her life was full of joy and mischief. She was not her list of conditions. Yet still when I speak of my missing, people speak of her with pity. When I speak of her loss, people speak with acceptance, as if her disability makes her death more ok.

Whilst I know this attitude is meant with kindness I need to share that it’s not. When someone who has a disability dies it’s not ok, it’s not even a little ok. It’s a heartbreaking, soul destroying grief.

You see people are not their disabilities they are simply people. A child with disabilities is simply a child.

So I beg of people, I ask desperately that when dealing with a grieving mother, a broken father a missing family, that before you speak of freedom from pain, limited lives or God’s choices, STOP. Whilst the lives lost may have seemed hard to you, or the disabilities overwhelming those grieving see the little boy whose eyes twinkled as he looked at them. The little girl whose smile lit up the room, their son, daughter, sister, brother. We don’t grieve the disability, we grieve the one we loved and their disability wasn’t what defined them. Our pain is not less and their death is not and never will be acceptable.

My favourite quote.

On By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

I love absolutely love quotes, I have them in notebooks, on my walls and I even have a few tattooed. So choosing my favourite isn’t easy, so I’ve decided to go with one that inspires me to continue on.

 

“There is some good in this world, and its worth fighting for.” Tolkien

 

Tolkien is one of my favourite authors I can completely lose myself in his words. Travel in my mind into raging battles or on Elvish adventures, getting lost in the magical, incredible world of Tolkien’s imagination and creation.

 

There are many quotes from his works that I love but today I’m choosing this one.

 

With all that’s going on in this world it’s easy to lose sight of the good.

 

When the media is full of hate I want to hold on to hope.

 

It’s this hope that gives me strength, the strength to keep fighting against unfair systems, undemocratic governments and unjust decisions.

 

Why I will continue to advocate and educate about disability, social care and so much more.

 

There is good in this world and I will continue to keep fighting for it.

 

 

 

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If my words were never to be seen. 

On By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

“Write as of no one would ever see your words”. 

I saw this statement on Twitter yesterday and it really made me stop and think, what would I write if my words would never been seen?

Would I tell you that I am pissed off at humanity, that the images I see and the news I read from around the world actually makes me sick at times to be part of the human race. 

The disgusting way we are treating the refugees from Syria. Destroying make shift homes, attacking those that already have nothing. Treating them as the enemy as they flee from all they know all they love. 

The current state of the political system the way it’s leaving people soul destroyed. Budgets being slashed for the things that really matter, social care disappearing, vulnerable people being left in crisis. 

The NHS slowly being sold off to rich selfish corporations whose only compassion is for the money it can make. 

People coming second to financial gain.

Would I tell you that I truly believe the world has changed. Gone is the love each other sentiment of this planet to love myself. 

The art of conversation is lost, gone are the days of real words and sentiment now we are a society of text talk or emojis.

If my words were not to be seen by anyone I would tell you that I worry. I truly worry for society. That I wish people would wake up and realise that we aren’t meant to walk through this life on our own. That our actual DNA needs to us to be sociable and to build relationships. 

We need to think outside ourselves. That the greatest joy can be found in giving not in taking.

If my words were never to be seen maybe I would admit that I’m tired of selfishness. Of seeing some that have so much and others that have nothing.

I’m angry at the rise of homelessness, emotionally corrupt landlords raising rents that only the elite can afford. Forcing families who have lived in an area for generations to have to move away from all they know, all they love. We are building lines between those that have and those that don’t. 

If my words were never to be seen I would admit that I too have to change. 

That I know I can be selfish at times. That my expectations of others can sometimes be to high. That I need to learn to let things go. 

If my words were never to be seen I would admit that I hurt. 

That sometimes I actually feel as if my heart may physically break. That I’m tired of pretending, that I crave to be true. That sometimes I don’t want to be the bigger person or rise above it. I want to call some out on their behaviour. Tell them it’s not ok. 

If my words were not to be seen. 

Well then they would be just words. A formation of letters that hold no power.

Words are to be seen.

To be shared 

To be experienced.

So I’m writing today without fear, writing with my heart wide open. 

For I want my words to be seen.

I want my words to matter,

But most of all I want my words to be my truth. 

Wow, I’ve been blogging for 7 years

On By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

blogging for 7 years

I realised yesterday that I have now been blogging for 7 years this month.

What a lot has happened over the last seven years.

I first took to blogging to share what it was like being a mom of four and how raising a severely disabled child affected our lives. I mainly wanted to share how besides the difficulties how wonderful life could be. How Olivia loved life and lived it to the full. How our family motto was never say never. From iceskating to rock climbing we somehow found a way for our girlie to enjoy it all.

Yet only a month after my first post I was to write through the pain of losing my beautiful girl. How the darkness of grief strove to consume me. How in the depths of despair I somehow managed to find hope.

Writing my grief allowed me to feel less alone, from the comments to the messages so many of you walked along side me. Some never realising how often they were the ones that gave me strength to carry on, yes that’s you Kelly. 

I then shared my journey into fostering, my hopes and my fears but also the joy we felt when we had our first placement. How one little boy became part of our family at the first hello. As you know forever wasn’t going to be ours again and whilst our hearts were torn open and raw my words helped me find some semblance of peace.

On this blog especially I have shared the growing of my beautiful girls how they have stumbled through their teenage years into beautiful young adults, well two have my baby still has a way to go and of course a few more posts for me still to write.

Together we have celebrated their joy, cried with them through their sadness. We have laughed at their drama of which there has been plenty and you have sympathised with me through their tantrums.

This blog is part of my records of my daughters lives and how they have changed me in so many beautiful ways. Taught me patience, resilience and the meaning of pure love.

Through this blog I have had many wonderful opportunities from modelling to  reviews. It’s brought me many online friends who have wonderfully tumbled over into my real life.

This blog has also been a call to action, a place where I have fought for awareness for Rett syndrome and for disability rights. I’ve ranted on politics and so much more and of which I promise there will be many more posts to come.

Where I have written about injustice, screamed about discrimination and cried about tragedy.

This blog, these words are truly my heart in print.

Thank you for being my readers, my friends and for visiting me here in my virtual home.

Thank you for the last seven years and lets hope the next seven are full of love and laughter and plenty of words.

 

thank you 7 years

#mybloggingtruth – A challenge to all bloggers

On By rebelwithkindnessIn Uncategorised, Uncategorized3 Comments

I started my first blog back in the early part of 2008, I wanted to share my life and what it was like raising a severely disabled child. How it could be hard but it could also be truly amazing. In the last 7 years I have seen many changes in the blogging world some good, some not so much. I know it has expanded greatly thats for sure, both in the personal and business world. Bloggers have become influential and can really make a difference to the public perception of a brand or a product.

It will come as no surprise to my regular readers of which I know there may be one or two that I am an emotional writer. My words fall from my heart onto the pages here. Sometimes I read my old posts and think maybe I shouldn’t have shared that or maybe I could have written it different but often I write for freedom and at that time writing that blog post may have given me that.

Sharing your heart here in the virtual world isn’t easy, especially when you put your name to the words. Of course we have all read the anonymous nefarious hate that has been written by trolls but in my book if you don’t put your name to it well then your cowardly shit isn’t worth the webspace you are taking up.

But even the most honest of all writers hide.

Are we really not photoshopping our words, our lives, hiding behind the filters.

Do we really share all our true faults, our failings?

Hands up I know I don’t.

Why would we?

It’s scary being vulnerable.

Well, as a writer who has shared her struggles and also from reading and talking to others what I have learned is that honesty makes people feel less alone.

How many of us moms have really felt that we have had enough, I know have. Seriously at times I wonder if I am cut out to be a mother. I screw up so often that I’m glad my children don’t keep score. Yet when I read blogs that seem full of perfect parenting I truly struggle. Questions like “what did I do wrong”? Raise their mind destroying heads.

Or the blog of the woman who dropped her pregnancy weight in 2 weeks whilst 14 years I still have my baby belly.

The perfect home baking whilst my kitchen looks like a war zone.

All this seems just out of reach.

So I’m setting all bloggers the #mybloggingtruth  challenge.

I want you to write a post sharing your truths.

Be open and be vulnerable and lets come together to celebrate our imperfections, our  struggles and our mishaps.

I will start the ball rolling here’s my truth……  I run away. 

I get so scared of failing that sometimes I’m to scared to try. I hate this about myself, I look back at the opportunities I have missed because of fear. The friendships I didn’t allow to blossom because I didn’t believe in myself. The many times I have said no when my heart really wanted to say yes. So many experiences, prospects lost to my fear.

I’m working on this but  I am truly still a work in progress.

So join in with me, write your post, tweet it to me @livvyssmile and use the hashtag #mybloggingtruth and lets use our words and our truths to make us all feel less alone.

Let our transparency be the the light for others.

Let’s do this, lets share our blogging truths.

Ambition and ego in the blogging world.

On By rebelwithkindnessIn Uncategorised, Uncategorized3 Comments

I’ve been thinking a lot about blogging the last few weeks and why I personally blog. I was started on this thoughtful path after reading a few comments from within the blogging world, comments which upset me. Bloggers arguing with each other and tearing each other down.

This doesn’t sit well with me, to be truthful I was rather emotional about the whole thing.

Then I realised something.

Not all bloggers blog for the same reason I do.

For me I write to free my head of my words. To allow my thoughts to tumble out through my fingers and onto the pages. I also enjoy sharing my dreams and my hopes. My heartache and my struggles. The words are mine, I don’t expect them to influence you in any way, its just me opening my heart to the virtual world. I’m documenting my journey though this crazy thing called life. Even my reviews are written from my perceptive on what I like or what I don’t like. I just like showing you my fashion choices, books I have enjoyed reading and so on.

Still these are my reasons for blogging and they are not everyone else’s.

Some bloggers have ambitions and aspirations for their blog and you know what thats ok.

The problem (is it a problem)? Is when something becomes full of ambition or desire then ego also starts to play a part in it.

Along with our beloved egos comes jealousy and I think this is what has been rearing its head within the blogging community or maybe its always been there and I’m just slow on the uptake <-this has been known to happen.

Now don’t get me wrong I actually don’t have any issue with ambition. In fact I am highly ambitious in my own way in a different field from blogging. I have hopes and goals that I want to achieve.

Blogging for some is a business and you tell me of any business that doesn’t thrive on ambition. Ambition is what feeds growth.

So I guess what I am rambling on about is this, I’ve realised I cannot view the blogging world with my rose tinted glasses anymore. I have to open my eyes and see it as the business, the trade that it is for some.

I have to accept that there will be underhand comments and hurtful things happening. But I don’t have to like it but I can stop it from getting to me.

I don’t have to be as naive, but I also don’t have to change the way I view blogging. Personally for me its about the words, the dreams and the amazing friendships I have made along the way.

I’ve enjoyed widening my experiences, challenging myself, pushing my own limits and I’m not going to let this change.

What I am going to do is work harder on encouraging other bloggers. Congratulate those who have achieved awesome things. Hug those who are struggling and be a better blogging friend.

This little piece of the internet has brought so much into my life and I am truly grateful. Yet I will be constantly reminding myself why I started writing and the core values I set for myself.

Be honest and stay true to me.

It’s a simple statement but it will be my anchor in this crazy choppy virtual world.

be yourself x