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

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.

317670449

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.

20S01RBLK_large-1

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

AW13HEPTealButt

 

 

Blogging should be fun not frightening

Sometimes I find myself sitting at the keyboard completely blank.

Its as if my words have just disappeared.

I want to write words that are wise and full of wisdom.

Yet I am far from wise and as for wisdom, heck i don’t even have wisdom teeth.

When did blogging become frightening for me?

When did i start to feel pressured by my own words?

I wonder if the influx of bloggers has made me more aware of my own writing.

To be honest I haven’t got a clue.

What i do know is that its time I got over myself.

When I started this blog i wrote because I simply loved it.

I wanted to share my life and experiences.

It didn’t matter if anyone actually read it.

My words were simply for me.

So this is where I need to get back to.

Finding my freedom in my words.

Blogging should be fun.

Not frightening.

 

It’s my birthday

Today is my birthday I am 38 years old.

I cannot believe how amazing my 37th year has been.

I have finally found me.

That sounds crazy doesn’t it.

How do you lose yourself?

I don’t think i  actually ever lost myself because I don’t believe i had ever found myself before.

For so long I have tried to be who I perceived others wanted me to be.

Hiding my heart to keep others happy.

But its not honest and its certainly not a way to live.

 
I will be ok when I get my degree.

I will be better when I lose weight.

I will become nicer.

I will try to be kinder.

More open, more trusting

A better mom.

A better wife.

 

My list became endless and always out of reach.

 

No more.

 
I finally can see that.

I am kind hearted

I am a good friend.

Good mom.

Good wife.

I am beautiful.

I am so loved.

 
What a year!!!

I wish it hadn’t took 37 years to get to this place but hey ho I am here.

I am so excited to see what my 38th year will bring me.

I already have exciting things planned.

I mean I’m modelling for goodness sake.

Whatever happens I know it will be fun and filled with love, laughter and friendship.

What more can this birthday girl ask??

 

graphics-happy-birthday-161793

 

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.

 

disability

I can’t and won’t apologise for that.

Bee – Happy

Seriously I have a happy buzz going on right now.

I’m not sure why as I’m still physically shattered and the bills still need to be paid.

Yet regardless of all this I am really happy.

My girls are doing well, my eldest passed her theory driving test and my youngest conquered her stage fright to sing and dance in a local theatre.

My middle one is getting great grades at school in her mock GCSE exams and even better seems to be really happy in herself.

My foster son is changing daily and is such a gift to have as part of our family.

Life is pretty good.

It’s so easy at times to look at the negatives of life.

Focus on the crappy bits and miss the beauty and joy all around us.

I know I am guilty of this at times.

But not this week.

I want to post something joyful and say life is good.

I’m getting to work with some great people and support some great charities.

I’m surrounded by family and friends that I cherish.

And we have sunshine.

What more could a girl ask for, well besides a cambridge satchel.

Life is good xxx

beehappy

Newlife- Making a difference

A number of years ago Alan and I were parents surviving on little or no sleep. This wasn’t due to the demands of a newborn as you would expect but because of our severely disabled daughter and her severe epilepsy.

Every night we faced the dreaded pounding of the cot sides as our daughter whacked her arms ravaged by a seizure.

We were in desperate need of a specialist bed but the words “not funded” were becoming the norm.

Well that was until the community nurse asked us if we had heard about a charity called Newlife Foundation for disabled children.

Newlife_Foundation_Logo

Well we hadn’t but they soon became known to us as the ones who gave us our first night sleep in years.

So now ten years later when I was asked as a blogger if I wanted to go behind the scenes and learn more about the charity I jumped at the opportunity.

So this is me telling you about the amazing charity known as Newlife.

Since its beginning in 1991 Newlife have kept at their heart the needs of disabled children and their families.

Raising funds to support and advocate for disabled children and terminally ill children across the UK.

Newlife is rather unique its its fundraising “actually earning most of the funds needed by operating a successful recycling company which offers environmentally sound services to major retailers, manufacturers and brand holders from across the High Streets of the UK sf increasingly in Europe. All profits from this recycling company are donated to Newlife.”

My girls and I take advantage of this recycling company getting some great bargains.

Newlife are a fantastic charity and offer support and guidance with real compassion. After only spending a few hours with the staff I could see and feel the passion for what they do.

They have four key national activities.

Nurse Services

A free national helpline which supports and informs families. Its confidential and trusted. Nothing is too important or trivial to discuss with a Newlife nurse.

A Newlife nurse can help discuss the grants needed for essential equipment and progress those which may be funded straight from Newlife funds or help provide information of grants available nationally from other sources.

karen

The nurse service has provided families with a professional listening ear since its origins in 1993. Since 2004 the service has directly helped over 35,000 people at the number of families continue to grow.

I know I have spoken to friends who have disabled children who tell me that this service has been a lifeline for them. Even when they cannot physically help, their kindness and willingness to listen has really supported them. One friend told me that she was at rock bottom and it was a Newlife nurse that lifted her up.

Personally I think this is an incredible service and one I know is highly regarded in the disability community.

Equipment Services.

One of the biggest issues when raising a disabled child is the cost of equipment. This is a major area of a families life and can effect everyday. The constant battle to get what your child needs is something I am so aware of. The time needed for assessment through statuary services left us struggling every night for a number of years only to reach the end of the assessment to find that although they agree there is a need they do not have funding left us exhausted and in pieces.

This was when Newlife came to our rescue and to the rescue of over 7000 children nationwide.

I really want to state that the equipment I am talking about isn’t just added extras that would make our children’s life brighter. It is vital equipment that is essential to a disabled childs life.

These have included pain relieving beds, wheelchairs, communication and other aids.

Newlife grants have funded over £10 million in equipment changing the lives of disabled children and their families all over the UK.

We were one of the families that was helped right at the beginning. On my visit I found out that Olivia’s bed grant was number 147. I cannot describe in words the impact that having a bed that protected my little girl when she slept when she seizured made to us as a family. To be able to sleep without fear was such a gift to us. To able to sleep without hurting herself made such a difference to Olivia.

Newlife also offer an amazing ‘Just Can’t Wait Service’  this provides loan equipment to terminally ill children nationwide. This is an incredible service as it has allowed terminally ill children to be cared for at home rather than in hospice. As one who knows the importance of every second counts I know this loan scheme has really blessed many families.

Newlife also offer a ‘Play Therapy Pod’ scheme this is the free loan of specialist development toys for families who care for a disabled or terminally ill child. Each pod consists of a variety of specialist toys that suitable for the age and ability of the child. Some of the greatest teaching can be achieved through play, so again a fantastic service.

Medical Research

This was a something I was not aware that Newlife were part of so I was extremely surprised and encouraged to learn that over the years Newlife has funded over 220 research projects at over 50 leading institutions around the UK funding around 15 million in research.

Can I get a collective WOW.

Chatting to the staff from Newlife it was evident that they were really passionate about this area hoping that one day grants won’t be needed as treatment and cures for disabilities will be so advanced.

I know I too have this hope.

Let me show you some numbers

15 million invested in child health medical research

70 young doctors directly supported through investment in research training, leading to improved child care and research.

50 genes identified, through Newlife research, aiding diagnosis and treatment.

220 grants funded for pioneering research.

59 The number of leading institutions where Newlife has funded medical research.

How amazing are Newlife !!

Campaigns & Awareness

Raising a disabled child is hard work there is no way to hide from that but at times what makes it worse is the constant battles we face just to get the help that we need. Newlife listen to parents and carers and take these messages, these struggles to the policy makers through their campaigns and awareness activities. They have become the voice of the families on important issues and they have helped to overcome the isolation many face.

As a leading charity Newlife are often consulted by Government on major issues around healthcare, services and policy. They also liase with local authorities and local health care providers to ensure policies regarding provision are fair and reasonable. The excellent relationships they have with these professional bodies allow them to raise awareness about the needs of children and their families.

 

Seriously I attended my visit to Newlife believing I knew most of what they did as a charity but honestly I hadn’t a clue. The work and the people they support is simply marvellous.

On my visit to their superstore the staff at Newlife asked me for two things.

Firstly and in their words ‘most importantly they wanted me to raise awareness of what services they offer. They honestly wanted more families to be informed about how they can help them.

Secondly like every charity they need our help. They need people to come forward and support the charity and help change the lives of disabled children and their families.

Newlife receive no government funding so every equipment grant, every research grant and every policy change has been funded by their supporters. So obviously the more support they get the more difference they can make in the lives of children and their families.

They have a great number of ways you can support them.

Visit the Newlife stores

Run a marathon

Hold a cake party

Host one of Newlife’s Sparkle parties

Be part of Newlife’s annual Santa Dash

Leave a legacy gift.

Visit the Newlife’s Facebook page for more ideas on how to get involved.

There are seriously so many ways you could get involved. Get your workplace on board, your school.

Every penny raised makes a difference, I know this personally. Newlife gave our family peace of mind. We could finally get some sleep knowing that Olivia was safe from harm. I cannot stress how much that meant to us.

Newlife is an incredible charity and although this is a rather a long post I haven’t touched on all they have to offer.

Over the next few weeks I will be continuing with a series of blog post regarding Newlife. I want to share some of the fun ways that you can support them.

So stay tuned there is more to come.

Lastly I want to leave you with a short video that really shows how much Newlife changed our lives.

 

 

 

Giving my child a voice – MyChoicePad

Writing this blog over the last years has allowed me to experience opportunities that have given me wonderful memories. It has also allowed me to review things that have really made a difference to my life but nothing has really come close to making a such an impact like this item I wish to share with you.

This has given my foster son a voice.

When our kids are born we wait excitingly for their first words yet for a number of children these words don’t come.

Now this could be for a variety of reasons including shock and trauma but for the most part it is because of a disability.

This is the category my foster son falls into. Due to a learning disability he has no real communication.

So when approached by Insane Logic the creators of the communication tool MYchoicePad to review this educational  app I was super excited.

MCP Logo No BG

Disabled children can use a number of ways to communicate including verbal language, sign language and communication symbols.  This app offers them the chance to use all three.

Launch Blog Post 2

Within the app You build grids in which the child structures a sentence from. The MyChoicePad Pro offers a wealth of vocabulary which can be personalised to the needs of the user. The package offers over 4000 makaton symbols.

You can build grids specifically to the child’s interests and activities.

IMG_0681

A sentence is formed with Makaton symbols which the child then plays out verbally.

This allows the child to communicate with both those who understand Makaton and those that don’t.

One of the added bonus of this app has been the videos that accompany the makaton symbols. These videos are essential in helping you and your child use and learn makaton signs.

See it, hear it, sign it.

The reach of this app is endless and that is why it is already being used by speech and language professionals across the UK.

With this app

A child can tell you how they are feeling.

IMG_0684

Their favourite foods.

Image 2

What they have learned at school.

Image 3

Seriously the scope is incredible.

Personally for me this app really became priceless when my foster son told me this…

The look of joy on his face to be able to share his feelings and for me to understand them was incredible.

Now after years of looking into communication aids for my late daughter Livvy I was well aware of the cost involved. So imagine my surprise and joy when I found out that the pro version could be downloaded for a price of £129.99  this is simply amazing.

Truthfully I feel as if I am only touching the surface of what this app has to offer.

Please check out the MyChoicePad website and contact any of the staff. You will find them willing to walk you through anything and everything. They also offer different packages and training.

Seriously I am so impressed with MyChoicePad and happily recommend it.

MyChoicePad is currently available for Apple iPad. An Android version will release in Spring 2014.

MyChoicePad is free to download and includes Stage 1 of Makatons Core Vocabulary. MyChoicePad Pro, which includes over 4000 Makaton concepts and aimed at professional organisations, can be purchased for £129.99.

AppIcon72x72@2x

 

 

 

 

 

Because thats who I am.

I was lying in bed last night and thinking about my blog when suddenly I was filled with fear. I realized that I was sharing my heart open and honest to anyone who wishes to read it.

Its like walking up a stranger in a shop and telling them my deepest darkest feelings

I wondered if I actually had got it before, really understood what I am doing when I allow my fingers to roam the keyboard and click the button saying publish.

Its a strange feeling knowing that someone you have never met knows your heart.

For a couple of minutes I actually thought twice.

Maybe its time to stop blogging.

Maybe I should start filtering my feelings, censoring my words.

Then after a while I began to wonder why?

Why do I need to hide who I truly am?

So what if strangers have read my words, in fact i am actually glad they have. Maybe one person has heard my heart and knows that they are not alone.

Sometimes the gift of company is all you need to face the day.

Knowing that tomorrow will come and somehow you will survive.

Understanding that everyone everywhere has a journey they need to take.

That we all get lost and lose our way.

Accepting that life is lousy at times.

We hurt, we ache and sometimes we break.

This blog is my heart and yes at times I may over share but who cares?

I have finally learned something,

Really understood something I should have always known.

Being me is ok, 

The ups and downs they make me who I am

And who I am is pretty awesome over sharing and all.

So there will be no filtering no censorship just pure raw Sara.

It may get messy.

But it will always be true.

Because thats who I am.

IMG_0255

We are all in this together.

Throughout our lives we find ourselves becoming parts of communities, part of set groups or to use the sociology term subcultures.

Be it a group of work colleagues , all the technicians together. Be it a parenting group, parents of two year olds please hang here. We come together through shared experiences or passions.

We are never really ever only in one group, different aspects of our lives play into different groups.

Myself I belong to many, parents of teenagers, parents of 12 year olds, foster parents and also the one group I really wish I never had to join parents who have lost a child.

All these groups I am proud to be part of but one thats on my heart right now is parents of children with special needs, especially as I like to call them my Special Kids in the UK family.

This is one amazing group, you find us  in all shapes and sizes . We have varying beliefs and certainly different personalities. Our children have different conditions even with the same diagnoses or in some cases no diagnoses.

So what makes this group rather special?

We can bitch and moan as good as it gets but when one of us is hurting we stand along side them.

If you were my friend on Facebook today you would see that my news feed is full of pictures of Minnie mouse. These pictures are our way of showing one of our members that we stand beside her. Most us wish that we could literally be standing beside her tomorrow as she lays to rest her beautiful son. We wish we could swap our virtual hugs for real squeezy ones.

Thinking of you xxx
Thinking of you xxx

But we cannot,

Life, children and distance keeps us separated. Yet nothing will stop us thinking and sending our love and wishes in support, compassion and remembrance tomorrow.

This same group right now are also sending prayers and healing to children in hospital. Sending strength to parents who are utterly exhausted. Families that are at breaking point.

At times we cannot offer more than the words “I’m here”  but believe me over the years those words have meant a great deal.

I am blessed to be a member of this group. For over the last 8 years they have been my strength. I have made friends whose friendship goes over and beyond the fact that we are special needs parents.

When I lost Livvy one of the crazy worries I had in my head was that I would lose these friends. How wrong was I, our children may have been what introduced us but they aren’t what bind us.

Maybe our binds are forged in exhaustion, endless battles with professionals and way to many late nights. Maybe they were joined in the many melt downs and medical jargon and repetitive forms.

Who knows, who cares, regardless of the why there is simply the just is.

I am so thankful to be part of this unique subculture to know and to share my life with these crazy people. At times I am not sure I would have coped without one or many of the group members.

Together we have faced the worst.

I am so grateful that one day many years ago I stumbled upon a small yahoo group. I have watched in grow over the last 8 years watched the number of members change from the tens into the thousands.

Being a member of this group means that although we may be facing uncertain futures with our children. We are never facing them alone.

We are all in this together.