Bravery ???

I have been thinking a lot about how we view bravery, how often the word is used and how sometimes it can be detrimental rather than encouraging. How people mean to encourage yet in truth can do the opposite. 

I can only write from experience but there are times in my life when I have felt the complete opposite to brave yet have found myself surrounded by people telling me I am.

When Livvy’s was diagnoses and I found myself facing life with a child with a complex disability so many said,  “you are so brave” “ I don’t know how you cope” all statements were being said to encourage and celebrate me. Yet I was far from brave, I so wanted to run out of my life, to pick up Livvy and live in a world where disability could not enter. A world where Rett Syndrome was banished. I wasn’t brave, I was surviving the only way I knew how, encouraged by the bravery of my beautiful girl.

“I don’t know how you have gone on” this was a statement that haunted me when Livvy died. I was caught in a whirlwind of emotions. It felt like a two pronged comment, my mind actually spiralled for such a long time due to this statement. I mean how have I gone on? Do I not love my daughter enough that I haven’t just given up on life without her, what kind of mother am I? Did I fail her by not giving up? 

Nearly ten years on and I still have no answer on to the question “how I have gone on?” Seriously it has been through God’s grace and the love I have for her sisters and also the innate knowledge that she expected nothing less of me but to live this life fully and that she would certainly kick my butt if I didn’t. I was not brave, I was surviving. 

I still wish people would think before admiring another’s bravery because those words offered in love often becomes a noose around someone’s neck, pulling tighter holding those who so need to admit to being scared, to being vulnerable no safe place to unload. 

Instead please, ask them how they are doing? 

Tell them its ok to be afraid? 

Tell them them they are doing well but don’t ask them how they have got through it, because truly if you are waiting for me to get through my grief for Olivia you may be waiting a long time. 

Be a safe place for people to unload, cast no judgement about where they are at. Just listen, really listen and if you cannot find the words to support just hug them tight. I know there is no answers to the pain, no reason’s to the why but sometimes its just nice to be held. It’s not ok and it may never will be, but I am not alone. That means more than words. 

“Allowing others the space to be vulnerable may be the bravest thing we can do.”

 

 

 

Losing myself in space and time

I can’t explain how I am feeling today.

It’s rather strange I actually feel In two halves.

One half is so happy and so excited for the future. The other is sad and consumed with missing and the past.

Is this normal?

Are any of us ever in one space and time?

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I read a lot about being present and focussing on the here and now, but is that truly possible.

Can we really hold our mind in the present?

Our souls have grown through our memories and experiences. The life lessons we have learned are still actively teaching us.

Emotions, feelings, patterns, experiences aren’t they what control who we are and what we do?

What about those we have lost? If we stayed in the here and now wouldn’t that mean leaving them in the time behind us.

Do we all walk through life with one foot in the future and the other in the past?

Is there actually a present, I mean the next second makes that moment past.

I did warn you that I was feeling a little strange.

I mean for the presence to really exsist, it must mean that for a moment time is just constant, but we know that isn’t the case. Beyond the normal measurements of time that we recognise, seconds, minutes there is something more that is always in movement.

Always moving forward, never still.

Sometimes I wish I could just switch off my mind, I actually surprise myself at times where my thoughts and wonderings go. When I lose myself in my thoughts of the past and recreate memories in my mind I am still moving forward into the future.

So is my mind in the past or in the future?

Any ideas?

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As the year comes to an end…..

So its the end of another year.

A lot has happened in the last 365 days.

I became the parent to all teenagers

Then a few months later I became the parent of an adult. (crazy)

I also then had to wave the said adult off as she left for university

It has truly been a crazy year, at times it has felt my feet have barely touched the ground.

We are still fostering a handsome young man with special needs and he is certainly keeping us on our toes.

Livvy’s Smile is doing well, we have held some fantastic memory making days and been busy fundraising. We have also had our story featured in a weekly woman’s magazine.

Personally I have had my writing published in a book and also walked the catwalk as a plus size model.

It’s honestly been a go go year.

As I wave 2014 goodbye I do so with two emotions.

Pride and exhaustion.

Proud of all we have achieved.

Exhausted, well simply by achieving all we have achieved.

I am super excited for 2015 though.

I have so many hopes for this forthcoming year.

In September I start at university, this is something I have dreamed of for such a long time and I cannot tell you how excited I am.

I’m also modelling again at Style XL and have a couple of photo shoots already lined up.

We may be adding another foster child to our family, and the girls are still trying hard to drive me completely insane.

So yes 2015 I am looking forward to you.

But while I am not making any new year resolutions I am making myself some promises.

Firstly I’m going to learn how to take time for myself.

Allowing myself space to breath, stop feeling guilty about wanting time out.

Also working on my health and fitness, continue with my swimming and working on my diet, as in healthy food not weight loss (not that I wouldn’t mind shifting a pound or twenty). I’m also going to try and stop stressing about things i cannot change and stop letting others have power over me. Anxiety has had me for the last 38 years, no more.

Secondly I’m going to work harder on my marriage.

It’s so easy after 19 years of being with the same man to take him for granted. To take each other for granted. I want to work on cherishing each other, spending quality time together and having fun. Reminding my husband that I still love every inch of him and that i find him sexier now than ever.

Thirdly Im going to work on believing in myself more.

For too long I have let myself down, rejected compliments or turned away opportunities because I didn’t believe I could do them.

This next year is going to be different.

I am a bright, intelligent woman and I am going to embrace all that I am. Negativity and self disbelief can stay in 2014 where it belongs.

This woman is going places.

Fourthly I’m going to have fun and make more memories.

This year I want to be more spontaneous and just enjoy the moment.

Let go and just take each day as it comes.

Play more with the kids and generally try not to stress as much as I do.

 

So there you go, my 2015 promises to myself.

Still before this year comes to an end i want to thank all my readers for the support that they have given me.

Blogging has afforded me many opportunities but the greatest of all these has been the people I have connected with in real life and here in the virtual world.

Your comments, emails, tweets have all lifted me when I was low.

Inspired me when I was lost and loved me when I was lonely.

I started blogging in 2008 for different reasons than I write now, but as always in 2015 this blog will be my heart.

What you read is simply who I am.

Heart on my sleeve

Words on the page.

So with that I would like to say…….

BLOG NEW YEAR

I won’t apologise for writing about disability.

I had a message the other day regarding how often I post regarding a disability issue and I wasn’t sure how to take it.

To be honest at first I was rather cross but then I thought back to before Olivia was born.

I knew nothing about disability.

I had a disabled cousin but besides the occasional visit I really wasn’t affected by it.

Never really had to think about it.

Then I realised “that’s it.”

Unless we live it or someone close to us does we really haven’t a clue.

Why should we?

I don’t mean to be trivialise it but I know nothing about space engineering as it doesn’t effect my life.

So why should be people whose life isn’t effected by disability understand it?

So I guess what I’m trying to say is this.

I do understand why people may be a little tired of me posting about disability.

Yet I won’t apologise for it.

Because disability does now affect my life and has done from the moment my beautiful daughter was born.

It was a complete shock to me and I found myself immersed in a world that I knew nothing about.

It was scary.

Though one of the biggest issues I faced was other people.

The lack of awareness made for some hurtful moments.

Ignorant comments and so much more.

 

It wasn’t always negative though a lot of people wanted to understand.

They wanted to learn more so they could help us more.

Still personally the real issue i faced was the isolation.

Not knowing where to turn to for advice and support.

I write in hope that maybe one post will help someone feel less alone.

 

So yes I have been writing about disability a lot but that is my life.

And the truth is I didn’t choose it but I love it.

When Olivia died it would have been easy for us to leave the disability world.

To go back to having a normal life and never thinking of medical appointments, wheelchairs or anything to do with special needs.

But we couldn’t.

This life had become our kind of normal.

The children and the families i met because my child had a disability had become my friends, my family.

Caring for a disabled child became my vocation.

My choice.

So yes I write about disability and I always will do.

Simply because it is my life.

 

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I can’t and won’t apologise for that.

Back To The Moon for Good.

On Sunday we were part of a group invited to the National Space Centre for the first public showing of the new full-dome planetarium film “Back to the Moon for good”.

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I want to first start of by telling you that the National Space Centre is truly incredible place to visit. I went with all four of my children so thats two stroppy teenagers and two 12 year olds one with severe special needs and everyone of them had an amazing time.

The centre has a lot to see but it offers the information it such a way that everyone gets to interact and learn. The staff are super friendly and seem generally interested in the subject they are discussing. I honestly recommend it for a family day out. My youngest went from believing space was boring to now wanting to study the subject.

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The day was planned as a promotion for the film Back to the Moon. This is a film that was actually created at the National Space Centre by the award winning NSC Creative team. It is a 25 minute film that is narrated by the award winning actor Tim Allen and after you get over the desire to hear the words “To infinity and beyond” you realise he is is the perfect man for the job. The film shows the fascinating story of the teams competing to land a robotic spacecraft on the moon and to win the Google Lunar XPRIZE.

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The film explores both the history of lunar travel and the vision of humanity’s future on the Moon. I was surprised to find out that my children had never learned a lot about past moon exploration. One big parenting fail on my behalf.

Also something I didn’t realise until this event was that the last time someone was on the moon was before I was actually born.

The film was incredible and kept the attention of all my children including the one who never sits still for more than five minutes. It was helped of course by the setting it was shown in, the Sir Patrick Moore Planetarium is rather awesome.

To be honest my invitation to this event was the first time I had ever heard about the Google Lunar XPRIZE but after a question and answer time with Alex Hall, Senior director, Google Lunar XPRIZE and Robert Bohme from Part Time Scientists I felt I knew a little more and was extremely excited for both the moon race but also the wider implications from the technology being designed.

Robert especially had me enthralled with the Artificial Intelligence progress they had and were achieving.

Part time scientists

“The Google Lunar XPRIZE is a competition to challenge and inspire engineers and entrepreneurs from around the world to develop a lost cost methods of robotic space exploration. The win the Google Lunar XPRIZE a privately funded team must successfully place a robot on the Moon’s surface that explores at least 500 meters and transmits high-definition video and images back to Earth.”

“The XRIZE was founded in 1995 it is the leading the organisation solving the world’s Grand Challenges by creating and managing the large-scale, high profile, incentivized prize in five areas: Learning; Exploration;Energy & Environment; Global Development; and Life Scientists. Active prizes include the $30 million Google Lunar X PRIZE, the $10 million Qualcomm Tricorder XPRIZE, and the $2.25 million Nokia Sensing CHALLENGE, and the $2 million Wendy Schmidt Ocean Health XPRIZE.

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The day was something we all enjoyed, we were all well treated by the Space Centre staff and I really recommend that you all try and see the film “Back to the Moon for good” regardless of your interest in space travel it is both informative and entertaining.

I know my family and I will be following the progress of the Google Lunar XPRIZE and are excited for the year 2015 when hopefully we will see the launching of the robots into space.

I am super excited to see who the winning team will be, I do have a soft spot for the Part time scientists now after meeting Robert. Though I seriously wish we had a British team in the running.

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My day was rounded up by a statement  my youngest daughter made. She asked me to buy her a keyring with an image of the space footprint on it. When I asked her why she replied “It was to remind herself that all things are possible. That years ago many would have thought a man on the moon would be impossible so who knows what the future will bring. “ I thought this was pretty awesome

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Favourite time of day – Brit Mums Prompt

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One of the Brit mums weekly blog prompts was the question

What is your favourite time of day?

I took my time answering this it’s the blog persona versus real life debate. Should I be making myself out to be this truly devoted l mother whose favourite time of the day is the moment the children awake or shall I be honest and confess my favourite time of the day is the end of the night when all are asleep and the house is quiet and I get some me time.

Now don’t get me wrong the time I spend with my children is a gift. I only know too well how precious life is and how short time can be.

Yet that moment when the house goes quiet and the television is mine or the peace to write is there, then that is bliss.

My life is chaos and I love it. I have two teenage girls one just sitting her GCSE’s and one trying to change the world. I also have an adorable 11 year old who seems to be growing up overnight, trying to be like her older sisters yet still wanting to hold on to the fun of childhood. I also foster children with special needs, so yes my life is chaotic.

If we add running the charity Livvys Smile, studying and blogging into the mix life is very full.

So it’s in this quiet time I find my peace.

No phone calls to answer.
No emails to read
No children to tend to
Chores can be ignored

It’s my time and it’s my recharging time.

Brain is switched off and I am happy to just watch television or read or just let the words flow into my notebook.

Just my time

So yes my favourite time of the day is when the house goes quiet around 10pm at night.

And all these monkeys are asleep. (or pretending to be at least).

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True Wonder

Last night I attended a show organised by the awesome pastor from our church at the Think Tank planetarium. The show was to explain to us the wonders of the universe, the stars, the galaxy’s and so much more.

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It has been known that I don’t really have a scientific bone in my body, I’m sure that’s not true but I do tend to glaze over very quick when someone starts using technical terminology. It’s strange as a young child I used to love biology and at times chemistry but physics, well let’s not go there.

Anyway back to yesterday the planetarium show was amazing, I was surprised by the amount of stars that fill the universe and how much more I actually didn’t know about, shepherd moons, stars bigger than the sun and so so much more.

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One of the reasons I moved away from learning about science when I was in college was the fact that I believe in an awesome God and a few tutors I have had along the way have been atheists and while I respect anyone’s opinion and always will, I struggled to listen to their version of the truth while in a learning environment.

So to hear about the stars and the wonder of the universe explained by our incredibly intelligent pastor was as they say a breathe of fresh air.

But what I really took home with me from the evening was simply WONDER.

The wonder of God’s creation.

Evan spoke of scientists who have learnt about matter and energy but cannot yet recreate it.

Have learn of the beauty of the human body, the genetic makeup of each organ and cells yet cannot breathe life into existence.

A blade of grass so simple and so perfect, we can know it, we can understand it, yet we cannot create it.

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This is where I find the wonder of the universe in the unknown.

When there are no answers we find the answer.

“By the word of the Lord the heavens were made,

and by the breath of his mouth all their host. (Psalm 33:6 ESV)”

God is the only answer we need.

All things were made through him, and without him was not any thing made that was made. (John 1:3 ESV)

It is here I find my wonder.

Yes I find beauty in the nights sky

The innocent in the birth of a new baby

The world is full of beauty!

It can be found in love and laughter,

It can be found in people and friendships.

Yes the universe is full of wondrous things.

Yet for me my wonder, my awe is in my God.

My Saviour

My friend.

I’m considering becoming a hermit

Ok maybe the title of this post is a little extreme but I am finding myself increasing enjoying my own company more than ever.

Having time to work through my thoughts.

Reading books and having the time to digest the meanings.

No small talk

Quiet time in conversation with God.

Journaling to my hearts content.

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Ok ok being truthful I couldn’t become a hermit. I need my daily fix of cuddles and smooches.

But it is nice once in a while to have some time out.

Since Christmas I have taken a step back from social networking, my mobile phone, my laptop.

It didn’t start out as an intentional thing just an escape from feeling overwhelmed . I couldn’t keep up, my twitter feed was out of control. Tweets on events that I had completely missed out on. Situations with friends that had just bypassed me in the numerous irrelevance that I was following.

Facebook was the same how can one person have over 100 notifications in a day, I’m so not that popular, just group updates etc etc

My email box looked scary, I just began to avoid it.

So I took a step back. Decided that if it was important I would deal with it but if not I would let it go.

Refusing to check my accounts no more than 5 times a day rather than every 5 minutes.

Radical maybe ha ha but I survived and I’ve thrived.

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I’ve read whole books in one sitting rather than a couple of chapters while checking twitter.

I held conversations with my children without checking my phone just in case.

I’ve watched DVDs snuggled on the sofa with my husband, no pausing or losing the plot just to return this email.

I’ve been present in my life. In the here and now with the person I’m standing with, not allowing half of my mind to be whirling around in cyberworld.

In the silence I have began a journey of reminding myself of who I am and who I wish to be.

I’m not really ever going to become a hermit but I have and will be continuing with the changes I have made.

Being present in your loved ones life’s is so much more important that being present in the virtual world.

Lesson learned.

“Life is all memory, except for the one present moment that goes by you so quickly you hardly catch it going.” — Tennessee Williams

“You must live in the present, launch yourself on every wave, find your eternity in each moment.” — Henry David Thoreau

My perfect bubble

After writing about how I really need space yesterday. My mind got wandering,thinking about what would be my perfect bubble, my haven from the world.

A lot of ideas went through my head. A desert island, a house on the beach. A farm in the middle of nowhere. My final choice was a remote log cabin on a lake.

Somewhere where I could watch the water, listen to the trees and just feel at peace with the world.

I would have with me the books off my waiting to read list. Some music and of course my laptop for the moments I require human contact. Also stocked cupboards with my favourite foods and my preferred tipple.

Notice I haven’t mentioned my husband or children and yes this may sound horrid but for a few days solitude is what I need, what I am desperate for.

Of course after a few days they can join me playing on the lake and climbing trees. No Blackberrys allowed. ( anyone with teenagers will understand the need for the absence of BBM).

Just writing this down sounds heavenly. The idea of no one calling my name, no phone ringing. Nobody needing my attention. The joy of an uninterrupted meal. A cup of tea that hasn’t gone cold.

Before I disappear into the heavenly place I’m creating in my mind. Share with me your perfect bubble, create your haven. Maybe even write a blog post about it. If you do don’t forget to link back to me so I can have a read.

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