Style on Sunday

After a week of camping I am feeling the cold so I think my first choice is perfect for the coming weather.

From the So Fabulous range with Very.

I love this jacket.

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Being a bag addict my second choice is a little cutie from Next.

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My third choice is a dress I have had my eye on for a while.

A beauty from the Claire Richards collection for Fashion World.

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and of course a girl needs shoes to match.

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So there is my choices for this weeks, Style on Sunday.

The crazy bunch of people I love.

So after I  had published my countdown post to Special Kids in the UK I found myself re-reading it from the perspective of someone who didn’t know the people I was writing about.

 

I wondered if I had given you the impression of a camp that was about disability and only disability.

 

Now after spending a crazy wonderful week there I want more than anything to give you a little more insight into who we really are.

 

Yes Special Kids is a charity which was formed by parents with children with disabilities for the use and support of other parents in the same situation.

 

It is true that this is the life we live, but it isn’t all we are.

 

We are fun crazy people that have somehow found ourselves in the world of disability.

 

Yet we aren’t just parents and carers of children of disabilities and our children are far more than just syndromes and conditions.

 

We are a diverse group of people.

 

From wine drinkers to tee-totals.

 

Drag queens to doctors.

 

We are sporty, creative, energetic,caring, imaginative and eccentric.

 

We have parents with full time careers and we have stay at home parents (a full time job in it’s own right.)

 

We are each unique and that’s why it works.

 

We are different but united.

 

Please don’t imagine this camp as a group of people sitting around a camp fire full of woe me for life.

 

You will find us sitting around that said fire laughing at the antics of our young adults, roasting marshmallows chatting into the small hours.

 

You will find us dressing up in weird and wonderful ways, wheelchairs transforming into race cars and families transforming back into the stone ages.

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Sharing life with others that understand that really get it.

 

Life is about living and the people that I camp with understand that more than most.

 

Special kids in the UK camp is about support and compassion but mostly it’s about friendship and laughter.

 

I am so blessed that I get to call this crazy bunch of people my friends.

speshfest 2014

 

So thankful that one day about 9 years ago i came across Special Kids in the UK.

 

I love these guys xxx

 

*Credit for the photographs go to members of Special kids xxx

 

My A-Z of Special Kids in the UK camp.

The last few days I have been having a fantastic time at Special Kids In the UK camp.

I wasn’t sure how to describe my time away until I wandered past a group of campers playing the A-Z game in a rather unique way.

So here is my time at camp from A-Z.

 

A – Amazing

B -  Beer o’clock

C -  Caring

D -  Drag queens

E-  Enjoyment

F-  Friendship

G -  Games

H-  Hugs

I-  Informative

J-  Jumping

K-  Karaoke

L- Livvy & Lucy- Mai

M-  Memories

N- New friends

O-Old friends

P- Pig roast

Q- Quality

R- Restore

S- Special

T- Tea tent

U- Ugly bug ball

V- Volunteers

W- Wobbly walkers

X- X-citing

Y- Young & old

Z-zzzzzzzzzzzzz

 

Is it my fault my child is disabled?

When my late daughter was born I contracted MRSA and was so very ill. I was trapped in hospital in isolation not allowed to see my children including my precious newborn.

 

I blamed myself for such a long time as I knew how important those first days of bonding were.

 

When Livvy’s regression started I was told so many things including “I have to accept that not all kids are the same and that I should be grateful for two bright kids”. “Are you lonely and want attention” “you are neurotic” to the worst one from a doctor “I think you want there to be something wrong with your child”.

 

I was broken I had this child who had gone from a pleasant baby, toddler into a screaming child

who wouldn’t even look at you.

 

The doctors eventually diagnosed global learning but I wasn’t convinced they just wouldn’t listen when I told them she used to walk, talk and engage with you. They just smiled and brushed over the subject.

 

I honestly thought I was going mad. Yes I was exhausted I had a 5, 4 and 2 year old to care for. I started to let the words of the doctors convince me I was wrong. Maybe I had missed the signs, I mean I did have my hands full.

 

I had lost my baby girl into a world that she wouldn’t let me access I was devastated. Maybe it was my fault. If only I hadn’t got ill. I hated myself and was sure I was the worst mom in the world.

 

I sat at toddlers groups watching Livvy scream when other children came close. My heart was in pieces.

 

In the end I retreated, my own world was safer.

 

Then Livvy’s seizures started. The first one scared me so much I nearly dropped her. Febrile convulsion I was told, twenty more later the doctors were confused.

 

The same doctor who had accused me of wanting to believe my child was ill was now informing me that I had a very poorly child and was looking worried.

 

Was this my fault again?

 

Life got crazy, nobody had any answers until a community paediatrician handed us the words Rett Syndrome.  A week later the neurologist confirmed it.

 

I didn’t want this diagnoses but the more I read into it I realised i wasn’t to blame.

 

I couldn’t have caused it.

 

Something inside of me changed right then as I read the research into the condition.

 

“Baby girls are born “normal” but begin to lose acquired skills between the ages of 1-3 years old. ”

 

See I wasn’t wrong.

 

This gave me so much strength. I wasn’t a bad parent, I hadn’t let her down.

 

It wasn’t my fault,

 

This realisation gave me the courage to break the chain of lies that were in my head.

 

No more.

 

I was determined to do as I had been.  Being the best mom I could to my now four beautiful girls. I armed myself with knowledge to quieten those who shared their ignorance with me and believe me many still did. I don’t believe it was with malicious intent but my goodness some people do need to think before they speak.

 

The darkness began to lift and I realised that it had been the fear that her condition was my fault that was slowly eating me up inside robbing me of my joy.

 

It’s not easy when you realise your child is disabled. You question everything you did. I ate healthily when pregnant. Didn’t drink or smoke.

 

Yet somehow the comments from people and professionals had cast doubt in my mind.

 

Was it my fault that my daughter was disabled?

 

No it blooming was not.

 

It was one of those things in life that just happens it was caused by a single gene mutation that leads to underproduction of an important brain protein.

 

I couldn’t be responsible for that.

 

This knowledge set me free and the fear dispersed.

 

I was then able to live life for the gift it was.

 

Livvy emerged slowly from her own world and her mischievous spirit started to show.

 

My other daughters just grew and bloomed.

 

Life was good.

 

Then in 2008 we lost my beautiful girl.

 

As the pain tore into my soul the words “it’s your fault ” returned to mind. “You should have seen, you should have known.”

 

Thankfully, I can’t believe I’m writing this but thankfully the inquest told me otherwise. Livvy had lost her battle to a rare virus and the complications of Rett Syndrome.

 

There was nothing I or anyone could have done.

 

One thing I have learned this last few years is that even with the truth in their faces some people will believe what they want to believe.

 

Maybe it’s ignorance maybe at times it is spite.

 

I can only be responsible for my own mind and my own thoughts.

 

I was blessed to be Livvy’s mom and nothing or no one will ever take that from me.

 

 

I honestly believe the whole process of the diagnosing of children’s disabilities need to be looked at.

 

Doctors, health professionals need to listen closer to parents. We may not have the medical degree but we do know our children.

 

If doctors had listened closer to me when Livvy first went into her regression her diagnoses would have come sooner. But also I personally wouldn’t have had to face the internal pain believing it was my fault.

 

I’m sharing this today after reading my friends blog over at Autism and love. Although our journeys are very different again I see how easy you can be left believing your child’s disability is your fault.

 

The time up to Olivia’s diagnoses was so hard. Hearing words like “naughty child” or “attention seeking” leaves you feeling so very lost.

 

Health professionals need to be more aware of the impact that statements like this leave on a parent . To be aware of what they must be feeling. No one plans to walk this pathway so more support is so needed.

 

Finding out your child has a disability is so hard. You have to let go of many dreams you had for child’s future. Let go of the life you used to have.

 

But with the right help, support and friendship your life can and will be a good one.

 

My life is so different because I got to be Olivia’s mom and for that I am truly grateful.

wonderful gift

 

 

 

 

Tarzan – Review & Giveaway

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Tarzan is a great film, it has many funny, scary even shocking parts which all makes it really interesting.

 

The film is all about Tarzan a boy who was the only survivor from a helicopter crash which killed his parents.

 

He grew up in the jungle raised by a group of Gorilla’s.

 

Life in the jungle was happy until greed came to play.

 

Without spoiling the story  Tarzan is a film with love, comedy and hard parts.

 

My favourite part is the relationship between Tarzan and Jane, such different people falling in love.

 

I’m glad that this film is PG as there are some parts that may be scary for very young children. Such as the ones where the gorillas are fighting.

 

However, it is a great film and it is very entertaining and well worth a watch.

 

TARZAN will be available on digital download, Blu-Ray 3D/2D and DVD from 25 August

 

Review written by Brodie.

 

I have a 2 Tarzan merchandise packs available  to giveaway which include a rucksack, bug viewer, T-shirt, twig pencil, and water filterer.

 

Enter here

 

 

a Rafflecopter giveaway

Such a loss

 

 

 

 

You would have to be buried deep somewhere last night not to have heard of  the tragic death of Robin Williams.

 

I am still in shock over the awful news.

 

Robin Williams was one of those men that made you believe you knew him.

 

From Mork and Mindy to Good Will Hunting his presence filled the screen.

 

Dead Poets Society was one of those films that changed my thinking.

 

It gave me the courage to challenge, to wonder.

 

That was Robin’s Williams gift to the world, one of wonder.

 

We have laughed so hard at his comedy moments and felt so deep with his straight roles.

 

The man was true talent.

 

 

There are many stories floating around  regarding the reasons for his death, many stating his depression.

 

This saddens me deeply.

 

Yet it is not surprising.

 

Its is true that many from the acting profession find themselves experiencing the lows after the highs.

 

They also find themselves not able to ask for help due to the extreme scrutiny on their lives.

 

I don’t want to speculate, I don’t know the truth of what was happening in Robin Williams mind.

 

What I do know is that mental illness is something that needs to be brought out of the shadows.

 

It is not something anyone should be made to feel shame for.

 

You can not be blamed for having a mental illness as much as you cannot be blamed for having cancer.

 

Yet it still lurks in the darkness.

 

It is time to stop the stigma and discrimination.

 

One in four people in Britain suffer from mental health problems.

 

ONE IN FOUR.

 

This is a frightening statistic and something needs to be done.

 

We need more funding into services and support but we also need more awareness raised to remove the stigma that is attached to mental illness.

 

My heart goes out to Robin William’s family .

 

I can only imagine the pain they are in right now.

 

But I want to raise awareness today.

 

If only to reach one person who is suffering right now.

 

I want them to know they don’t have to be ashamed.

 

They don’t have to hide.

 

Please contact someone to support you.

 

Get help.

 

 

Lets us raise our voices in memory of Robin Williams and all those that have fought a battle against mental illness.

 

Lets be united in ending the discrimination.

 

In the words of the late man himself

 

 

“No matter what people tell you, words and ideas can change the world.”

 

Robin Williams
 

 

Lets start the change today.

 

 

Rest in peace Robin.

 

dead-poets-society-quotes-15

 

 

 

If you or anyone you know is suffering with a mental health issue there are places you can find support.

 

Unknown

Our lines are open 9am – 6pm, Monday – Friday

0300 123 3393
info@mind.org.uk
Text: 86463

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CALL US

If there’s something troubling you, then get in touch.

We’re here 24 hours a day, 365 days a year.

If you need a response immediately, it’s best to call us on the phone. (*call charges apply)

 

 

Style On Sunday

This week I have been busy filling my diary with future meetings and conference’s that I need to attend.

So I have decided I need some smart casual workwear.

So this weeks choices are a little of that, but first I want to share with you an awesome top designed by a guy who I think one of the best photographers ever and he is also married to my blog crush Betty.

From the T-shirt  Emporium of the uber talented Nicky Rockets.

 

Curverella

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I just love it.

 

 

My second choice this week is a top that i think could be worn for either work or play.

Its a stunning Live Unlimited Black lace Blouson top  from Evans.

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I just love the lace detail on this top and maybe I just love lace generally too.

 

For my 3rd choice I am following a recommendation I was given by a few of the ladies at Style XL

It seems if you want a pair of jeans the Chloe ones from Simply Be are a good choice.

So after taking a look I agree, I do need these Chloe skinny jeans.

 

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My final choice for this week are these super stylish ankle boots from New Look.

 

 

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I love how the zip detail on these is subtle but gives it a little edge at the same time.

 

 

 

 

 

 

It’s countdown time.

So the official countdown for Special Kids In the UK camp has started.

 

Though for many it began the moment we pulled away last year.

 

How and why is this camp so important?

 

So special to the members of this charity?

 

Well to be honest its pretty simple.

 

For the most part we live our lives on the outside.

 

Exclusion is not only for our children but us the parents and families too.

 

In an ideal world I would be writing about inclusion and community but when your lives consists of endless hospital visits, medications, physio, adaptions, assessments and so much more.

The conversations are rather different to many around you.

 

 Life is so very different. 

 

This is why this camp means so much.

 

For a week each year we are inclusive.

 

We all understand.

 

We live on the inside of our own special world.

 

I am so excited for this years camp.

 

I can’t wait to relax in a place where I know people get it.

 

Where friends have become family.

 

I may not know everyone’s name but I know they understand my life.

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I love the fact that this time next week we will be laughing around  the communal  BBQ.

 

Watching the men become BBQ kings.

You have never had a sausage until you have a Special kids in the UK sausage.

Yes i really wrote that ha ha.

 

Kids will be dancing in wheelchairs and jumping on bouncy castles.

 

There will be wheelchair races with screams of go faster.

 

Wobbly walkers and fun running battles where often the older show the younger how its done.

 

There will be tea parties with strawberries and cream, cakes and more cakes.

 

Dvd nights and wine fuelled chats under the stars.

 

I cannot wait.

 

My children cannot wait.

special kids 1

 

I am bias I  do so love Special kids in the UK. 

 

Some of these people have been my friends now for over 8 years, they have walked beside me through the dark times.

 

They have held me when I have cried.

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They have laughed at me and with me.

 

Whatever the dally battle of raising a child with special needs brings I know that somewhere on that forum is advice and compassion.

 

I think Special Kids In the UK is unique, its not aimed at any particular syndrome or disability.

 

In fact many of our kids are undiagnosed.

 

It’s just a place that offers friendship and support whatever the situation or circumstance.

 

I love this crazy bunch of people.

 

We are so different yet so alike in our desire and drive to give our children the best quality of life we can.

 

So yes I am counting down the days to next week.

 

To when I get to pull up on that Field in Wem.

 

When I get to find my little place in this world that makes total sense.

 

The camping field of Special Kids in the UK.

 

 

 

 

 

Lets talk about Style XL

This weekend was all about Style XL. 

 

The fantastic midlands plus size event I had the pleasure of modelling for on Saturday.

 

Organised by the beautiful Leah from http://www.thirtysomethingcurvyme.com it was certainly a day to remember.

 

Beautiful clothes and beautiful ladies.

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The event was held in Leicester at the Sanctuary workshops.

 

The organisation was first class’s and the support Leah received from family and friends was priceless.

 

It was amazing to get to meet the brands some I knew and some that were new to me.

 

We had. Apples and Pears, MS.SVG, Dizzied plus, Topsy curvy, Yours clothing and Simply Be,  and Pink Clove. Not forgetting Iridescence, Chunky Cat Cuddler and Curvaceous 

 

I fell in love with so many outfits and accessories. My husbands blood pressure was rising with my list of I wants or I needs.

 

I had the pleasure to model for Simply Be, Apple and Pears and Topsy Curvy while wearing some beautiful Iridescence jewellery. A big thank you to the brands for letting me wear their beautiful clothes.

 

Wow I still can’t believe I wrote that.

 

Me, modelling.

 

Yes on Saturday I walked the catwalk.

 

I felt truly amazing the clothes were stunning and in the words of my husband I just glowed.

 

It was a fabulous day and It was wonderful to actually get to meet the ladies that I have come to know and love via social media in real life. I have also added to my list of blog crushes.

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As the first Midlands plus size fashion event Style XL set a standard and after chatting to Leah I know it’s only the beginning. She has plans for next year that are bigger and better.

 

Regardless of what 2015 will bring Leah I hope you can see what a great success Style XL was and maybe give yourself a few hours of rest.

 

As for me, I am still on a complete high. I loved every minute of the day. Walking that catwalk, wearing those amazing clothes is something I could get used to. Now I am super excited for Plus North.

 

It was a real moment of realisation and body confidence for me a major step on a  journey I have been on for such a long time.

Modelling is something I never Imagined I would ever get to do again but you know what I loved it and to be honest I looked pretty awesome too ha ha.

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Style on Sunday

I have had an amazing weekend at Style XL which I will be sharing with you all later but before Sunday actually comes to a close here are my favourite fashion picks.

First off I completely fell in love with this tshirt from ASOS Curve, I love unicorns as my tattoo will prove and this top is so pretty and I need it.image1xl

I have been after a blazer for a while when this week this one from New Look caught my eye.

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The colours and style on this are stunning.

After a conversation with my husband which included the words “those shoes smell so bad they need burning” I have been on the search for a smart but funky day to day pair and I think I found them in this gorgeous pair from Evans.

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I also came across the dress of my dreams this evening. No words are needed as it is truly stunning from Lady V London.

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