LIVING WITH DIFFERENCE & BEAUTY THAT’S BENEATH.

  

A laid bare post..

The Mad Blog award ceremony is only days away and I’m absolutely bricking it….but not for the reasons you’d think. 
So here’s why I’m petrified of the awards pretty much just the same as I’m petrified of school runs, playgroups, meeting people, socialising….I’m hoping a little honesty may support me a comfy shoulder. 
Vanity is shite, there’s no getting away from it, it’s a natural blanket that either keeps us warm or gives us a chill….some personal perceived flaws can be hidden, make-up and clothes do a good job..some flaws can be hidden by radiance or smiles, or a confidence that flattens your flaws.

Others cannot be hidden or no matter what you do or what logic tells you, those flaws, which are teeny, even unnoticeable to those around you are the hugest thing in your life. 
There’s an ironicness to the natural play ethos that we live by…we love sticks! We love climbing trees, throwing, rolling, jumping…living dangerously within childhood…we don’t care about ‘you’ll have your eye out!’ or ‘you’ll break your leg!’ echoes… we’ve not got cotton wool here, we’ve got bruises and war wounds and oodles of knee scraping memories to keep smiles forever with us. We get our hands dirty, filthy our fingernails and fill our hearts.
At 3 years old I lost my left eye in a childhood accident involving sticks.

It really puts play to the term that ‘everything changed in the blink of an eye’.

Damaged beyond repair I was left with a hideous looking ‘dead & deformed’ eye. I was provided with a contact lens shell for vanity purposes which I wore through school but due to health problems I had my eye completely removed at the age of 8. This was then replaced with a full bodied non moving artificial eye, which i still wear today. 

I was fortunate in my school years to never be bullied much, there were occasion but all in all other children were often in awe of the girl with the glass eye. Friendly banter, a harmless acceptance. But inside I hurt. 

I’m a girl, vanity runs deep. Mirrors don’t lie and every time I looked in them the truth confronted me, and quite frankly the truth hurt. I could not hide my flaw. I still can’t. 

Isn’t the saying ‘the eyes are the window to the soul’?….

Monsters were always portrayed with a disproportion amount of eyes, or with just one eye, like me. Badies always seemed to have missing eyes or patches. It was constantly accepted and still is now to make yourself look like a fool or a freak by crossing your eyes….even today my newsfeed is full of people thinking it’s the norm to post selfies of eyes out of line/crossed etc…. I don’t do selfies….I wish I could. 
Truth is, it’s easy to acquire a confidence when sat behind a computer screen….people can judge by portrayals you give but they can’t judge on what they see. If first impressions last like they say then the impression I give is not pretty, but there’s nothing I can do to change that so I avoid first impressions where I can. There’s no getting away from looking someone straight in the eyes…that’s what you’re supposed to do, it shows confidence, self worth, spirit etc…..unless you’ve a glass eye and are faced with inquisitiveness, confusions & on occasion looks of horror. In a nutshell that’s the truth. It’s human nature to be inquisitive about difference but unfortunately when that difference is a deformity in the eyes there’s no ability to display discreetness. Apparently the eyes don’t lie and are the first point of contact. 

With no movement in my artificial eye I often look at people and they look over their shoulders to decipher if I’m looking at them or somebody else. It’s a natural thing to do but momentarily reminds me of my difference and breaks my heart.
The eyes don’t lie..

But the eyes do lie. 

Strange really as its so easy to paint an unrealistic picture of yourself from behind a screen, to big yourself up, show the good bits, but equally, sometimes it’s the only way that some people, like me, can be who they are without judgement, be themselves without giving the false first impressions that people naively take when faced with difference, the only way you can get to see the beauty that goes beyond the skin but is often shadowed by the first impressions that are left by either disfigurement or the issues that make us unapproachable, not able to fit in, the things that we deem to be unacceptable flaws within social circles that make us refrain with the sad knowledge that because we’ve got little confidence, we may have anxiety, body issues, self doubt etc, we refrain knowing that we’ll be viewed unsociable, rude, ignorant, arrogant, better than others…..it’s a vicious circle and it hurts.
Most often the people that seem the most comfortable in being solitary are the ones that really would rather not be but can’t bring themselves to step forward. 
We don’t help ourselves sometimes, not because we don’t want to but because are scared to do so.

We all have reasons that make it hard for us to fit in, low self esteem that situations put on us. We all want acceptance. Some of us can be deemed as loud but still amble along the sidelines feeling teeny and unable to jump in.
We’ve all got our own insecurities that can make social situations excruciating…..most of us hide that really well. 

What may be a mountain to me could be a molehill to you…and most often is.
I’d like to be the life and soul of the party, I’d like to fit in, I’d like to rock up and slide into the conversation with ease. I don’t want to stand on the sidelines scared of unacceptance feeling meek when I’m really not. I don’t want to be the weird one. The loner. I don’t want to feel pushed out….But i make myself feel pushed out. 

Socialising is ridiculously tough, and it’s not because you make me feel uncomfortable, it’s because I do that to myself.  

 
The brutal honesty of my post is that I am so so SOOO proud to be going to the MAD Blog awards…proud of myself beyond belief but I’m petrified and sad that I’m anxious, I’m scared & i’m embarrassed for who I am, what I look like in the flesh.. for my flaw…it’s what circumstance has given me and no matter how hard I try I can’t shake off my feelings of difference. 

If there’s a sore thumb in the room then that’s me.

I don’t want to feel like that and that’s what I hate most.

I’m scared of the cameras, photos which capture reality and never lie, photos that I don’t have chance to pose for that capture hideousness…I’m scared to be me with false first impressions.

I hate that it’s such a small thing to everyone else in my world but such a stupidly overwhelming thing to me.

It’s the people who care about me that matter, I know that, but I care about myself and I want confidence, I exude confidence in so many other ways but am void of it within social situations.  
 
I don’t even care if I’m not deemed as beautiful on the outside I just want people to have the ability to immediately see what’s beneath without judging from the outside in.

  
I’m still Mrs FD..my heart is laid bare on FD because it comforts me that it remains a place without vanity, a place without face to face judgements…a place I feel I can be accepted for who I am. Not a rosy portrayal or bullshit made up words to turn myself into something I’m not…it’s a place I’ll happily give warts and all….I may sit behind the screen and make my choices but I don’t choose falsely, I choose to be honest, to grasp onto confidence that the shadows gives me. I don’t bring with me a vain disfigurement that I struggle with in tow….I just bring me…deeper than the skin..a beauty that’s there without a face & I fit in. 
So there you go… the reason I might hide behind my shades at a red carpeted awards ceremony than I’m ridiculously proud of. 😎 It’s not because I’m arrogant self obsessed rude or a vanity driven woman… 
It’s because I’m scared to be me although that’s all I want to be.
Maybe a little vanity driven too. 
Vanity is shit.
Most importantly though, I absolutely know that whoever I am or what i look like, I’m loved and am soaked in the beauty that surrounds me when I shut my front door. It’s those who see me without glasses and look into my eyes directly at who I am that matter most. 
My family make me feel beautiful but no matter how I try I can’t grasp onto that feeling of beauty and take it with me into society… 

 
Maybe one day I’ll shed that.

The aim of this post is a completely selfish one in the hope that laying myself bare will help me step out and not give a shit what others think..truly. To look people straight in the eye….And smile. 

DODGY TICKERS & LOVE… LIVING WITH A HEART CONDITION

20140525-194101.jpgLiving with a heart condition…

It’s not something we ever imagined would grace us & certainly not something that we could imagine living with so flippantly and accommodatingly… but we do.
Some things can’t be changed, you can choose to wrap your children in cotton wool, pander to every tear that’s shed and succumb to giving in and sitting back for the absurd reasons of ‘what ifs’ & ‘you never knows’ or you can dust them off before they’ve even fell, let them see that ‘they can’ and crack on with life.

Our aim is to crack on..

That’s not to say we’re not responsible or we lack in sympathy, it’s just a recognition that you can let life consume you and stop you in your tracks or you can grab it full on and live each day like it could be your last.

Mila,5, is our reason for living in this way.

Mila came into the world on the 28th of December 2008, nestled between Christmas & the New Year… She was a healthy & beautiful baby born in the middle of the night, by sunrise I’d spent most of her first few hours in the world staring at her and examining every piece of her, her fingers, her toes, kissing her lips on a loop and smoothing the lack of hair she had. She was perfect.

She was a content baby, covered in love by all her brothers and sisters. She slept well, ate well and wasn’t a sicky baby, she smiled at the right stage, held her head up, rolled over & sat up, all her milestones were met and celebrated…she was a completely normal baby and a joy to have.

At three months I noticed her pulse flickering in her neck like something poking rapidly from beneath her skin, it prompted me to feel her chest which in turn I felt her heart pounding very fast. Unsure if it was normal and not remembering it in our 4 other babies I rang the NHS Direct who assured me that babies hearts beat considerably fast in comparison to adults and reassured me it was nothing to worry about… So I didn’t. I’m not a doctor so my knowledge of heartbeats was zero and I took comfort in their reassurance and put it to the back of my mind.

But i noticed it happening again, twice, so I visited the GP whom after checking her over determined that she was normal and maybe I was just a little fretful as a new mother. He was right, she was fine as each time we got to the doctors her heart was beating normally and I was indeed a little fretful.

Still trying to put it to the back of my mind it happened again at nearly 6 months old, I could see her neck flickering so I decided to take her straight to the GP without making an appointment……and that’s where it all started.

I’m not even sure how we got to the hospital that day, I just remember driving her to the GP to get her checked out and the next moment being in the emergency room at the hospital with hook ups and wires and what seemed like the entire hospital watching over us. It was determined there and then in the blink of an eye that things were not right. Milas heart rate was beating at a dangerously high level of 350bpm instead of the normal 120 & she was teetering on the brink of heart failure…at just 6 months old it was likely that if her heart rate wasn’t reduced she would have a heart attack & all we could do was stand by & watch as everyone battled to correct it.
They tried various manoeuvres on her, threw her into iced water & tried several attempts at stopping her heart with Adenosine and restarting it in the hope of obtaining a normal rhythm, nothing worked, at best her heart would stop beating and restart normally for around 3 seconds before shooting back up to a life threatening level… after all avenues were exhausted & every cardiologist within the hospital was summonsed without joy we were transferred to a high dependency heart unit 30 miles away still aware that at any moment her heart could just decide to stop, give up….
Here they continued to battle to stabilise her heart with different drugs being directly fed into her body via a drip, I thought we were watching her die & ironically as life threateningly poorly as she was on the inside she remained with a smile on the outside, whilst being poked & prodded, having bloods taken and being examined, with wires and drips she still smiled, …eventually after around 6 hours of battling and drugs finally absorbing into her body her heart rate returned to an acceptable level but we spent the next week in the high dependency unit as the cardiologist tried different drug concoctions to keep her stable, during this time she remained on monitors and was drip fed drugs as her heart continued to flit in and out of the danger zone.

20140525-194126.jpgIn those few days she was diagnosed with ‘PJRT Supra Ventricular Tachycardia’….something that the doctors explained is often a common thing for babies to have and be unaware of and mostly grow out of it by the time they are a year old. We were also told that due to the aggressiveness & stubbornness of Milas heart rate and it’s difficulty to control her prognosis would be a permanent condition only correctable with surgery but until that time she would be controlled by beta blockers. To be fair it was a little hard to take in, I thought beta blockers were for old people not a 6 month old baby! But with faith in the doctors we went with the flow.
We understood that the physical structure of her heart was normal, which was good, but the electrical wiring (the pulses) would get confused and fire the wrong way causing her heart to go into overdrive. It was controllable & once big enough she could undergo surgery to try and ‘rewire’ her.

A week later having had training on how to check her heart rate and how to do different manoeuvres to try and restart her heart we were sent home. We had instructions to listen to her heart often during the day and should we establish she was beating too fast we were to monitor her and should it beat too fast for over 20 minutes we were to ring an ambulance….so we cracked on with life and in the next year we ordered ambulances like taxis! We were lucky to go a week without an ambulance or a trip to A&E to help her. It took a while to establish the right medicine mix for her and each time she grew a little her heart would kick off to let us know it needed an increase to keep it stable. We learnt to live with it and take it in our stride. She wasn’t disabled, her mind was still intact and she was physically fit, she just had a dodgy ticker and for that we were thankful and still are.

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She lives life completely normally & dances whenever she can…

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We still live life and crack on, this little lady is a strong and resilient person, she plays, she learns, and she climbs mountains faster and more enthusiastically than I ever could….

Her heart is still broken but it exudes unbelievable amounts of love every single day….
the love that she shows for life even when that life looked like it was slipping away from us has taught us how precious things are and how everything can change in the blink of an eye.

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Every night I ask her ‘what do you want to do tomorrow Mila?’
We always live for today and know that tomorrow is not promised, but we still look forward to it because Mila does.

She has taught us to embrace a little bit of magic & make believe in the moment..

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Living with a heart condition is what you make of it, we don’t have bags of cotton wool here, we get by on ‘you can’s’, beta blockers & love.