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

 

 

 

 

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.

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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.

 

 

 

 

 

Scotty’s Little Soldiers

After losing Livvy holidays were never the same, every experience was entwined with a little sadness.

Its hard and there is no two ways about it. It’s one of the ‘first’s’ that really hit hard.

So when I came across the charity Scotty’s Little Soldiers I so wanted to share what they did.

Scotty’s Little Soldiers is dedicated to supporting the children of men and women killed while serving in the British Armed Forces. The charity provides Christmas and birthday gifts, treats, trips and activities for the families of the fallen as well as enabling them to use the charity holiday lodges.

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 How incredible is this!

The men and woman who protect our freedom often do so by paying the ultimate price. But its not just the soldiers that pay this price the families that left behind suffer too.

The military charity for bereaved children was set up by army widow Nikki Scott after her husband Corporal Lee Scott was killed in Afghanistan in 2009 and came about as a result of Nikki seeing her children laugh for the first time following Lee’s death whilst on holiday in Turkey.

Nikki Scott, Founder of Scotty’s Little Soldiers, said:

“Whilst life following the death of a spouse or partner will always be painful, the first year and the first family holiday can be particularly difficult, especially when facing the long summer holidays as a single parent.

“That’s why we’ve released our advice to help and support parents facing this difficult time. Whilst it’s seldom spoken about, going on holiday whilst still grieving is a reality for many across the UK and so we want to offer our advice and support wherever necessary.”

Scotty’s help children to smile again after losing a mum or dad, and helps the parent left behind to cope with facing life as a single parent. 

As the charity’s children look ahead to six weeks of summer holidays this year, we wanted to share founder Nikki’s top ten tips for parents facing the school break alone.

1.     Long road journeys can be a nightmare!  I invested in some car DVD players and they worked a treat.   If we are going on a long special journey I normally surprise them with a new DVD when they get in the car.  J  I would also recommend breaking up long car journeys with roadside stops at services or cafes to give you and your kids a break.

2.     Special things from home.  At the Scotty lodges we try to provide everything families would need and fill them with toys and goodies so the families can pack as light as possible but I would also suggest taking that extra favourite toy or teddy from home.  Maybe even taking a photo of your loved one may help.  

3.     Take a family member or friend with you.  It is stressful with little ones on your own especially that first holiday.  When I went away after Lee had been killed I went with family and my mum and it was a massive help.   It just gives you some support and helps take some of the stress away, plus my little ones loved playing with their cousins.  At Scotty’s we allow the families to take other family members or close friends with them on the breaks we offer as a way of support.

4.     Be organised!  I found the airport really stressful! Going through check in especially.  Folding a buggy up whilst keeping my eye on Kai, whilst carrying bags and Brooke so they could scan the buggy etc was tough so my best tip would be to try to be as organised a possible.  

5.     Plan your activities.   Do your research before you go.  Check out what facilities there are around you so you can plan what to do and where to go. 

6.     Smile!  As painful as my first holiday was especially because you are constantly imaging “if Lee was here” and feeling guilty for having some time away, you have to remember to smile. I kept telling myself “Lee would want us to have some fun, it’s ok to have some fun.”   I soon found out if you relax the kids relax!

7.    Keep busy – I found keeping busy and just spending time playing with my little ones really helped.  If you sit by the pool to long, you start to think to much and start noticing all the families around you reminding you what you have lost.   I found it was good to keep busy and enjoy spending some quality time with the kids.

 8.   Write Lists – I am a big fan of lists!  Writing a list for packing and travelling times really helped me as when I first lost Lee my mind was all over the place and I found it hard to focus so lists defiantly helped me to feel in control.

 

9.    Check in Early – If you are off on a break aboard I’d recommend looking into checking in online to save queuing with the little ones and remember buggies can be taken all the way up to the gate where you board the plane.

 

10.  Looking into the Kids Clubs – My kids love the kids clubs on the Haven sites where our Scotty Lodges are.  It can give children the chance to mix with other children and forget about all the sadness they may have been experiencing at home for a short time.  Sometimes being away from mummy may help them to open up and relax so it may be an idea to quietly let the guys at the kids club know about your recent loss in case the little ones bring it up to someone else.

 

“I guess it’s important to remember that everyone is different and has different ways of coping but these are a few of my personal top tips on how I make the holidays for me and my kiddies that little bit easier,” said Nikki Scott.

Personally I think this charity is amazing.

When Olivia died we had to teach our girls that it was ok to be happy.

That laughing and feeling joy only honours the ones we have lost.

 Scotty’s Little Soldiers invites everyone who is passionate about their cause and wants to support their work to get in touch via their website at www.scottyslittlesoldiers.co.uk or by calling them on 01553 763 000.

 

 

 

 

 

 

Turning the page

I’m not quite sure I can find the words to describe my feelings from this last Saturday.

It’s quite ironic really as it was my words which brought me to such a magical moment.

You see a few months ago I came across an email asking for pieces to be submitted into a writing competition called Turning the Page.

The writing was to be a piece sharing your positive experiences of disability.

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Now I love to write as you already know and I’m a passionate advocate for disability awareness so this seemed a perfect opportunity to do both.

 

Yet entering my words into a competition was a little scary. Asking others to judge my heart.

Yet with Livvy as my subject matter the words came freely.

 

The competition was being run by Irwin Mitchell in conjunction and support of the charity KIDS a fantastic organisation which works with disabled children, young people and their families.

 

The idea was to raise awareness about disability from the ones who live with it.

 

Well I’m glad I found the courage to submit my piece as I was awarded joint winner in the 18+ category.

 

How amazing was that and on Saturday my family and I got to attend a special event at The Globe Theatre in London.

The whole event was truly wonderful. The welcome was warm, the food divine and the venue beautiful.

The Globe theatre is a an incredible place to visit. You feel such awe as you stand inside.

It fact awe was really the emotion of the day as I was truly spoiled. Besides my wonderful prize of a Kindle which I had already received. I was presented with a lovely framed copy of my writing and also an original drawing from the artist Louise Marshall.

TTP Presentation

 

This talented lady had taken the winners writings and created beautiful illustrations in interpretation of the words. I was shocked at how amazing the artwork was and I certainly loved mine.

Add to this a beautiful bouquet of flowers I was one happy lady.

flowers ttp

 

It was wonderful to listen to staff from Irwin Mitchell and KIDS and to hear their desire to raise awareness for disability. Their passion was evident.

I had a wonderful time and the highlight was definitely seeing my work published. Holding a copy of a book which had my heart inside was overwhelming. Knowing that I got to share my beautiful daughter with people meant more than words could describe.

TTP Brodie & I

The book is a compilation of the entries. It is being sold to raise funds for KIDS and can be purchased right now from the website.

I hope they sell many copies of Turning the Page not just because the funds are so needed. But because I believe that the writings in the book are truly insightful. A little visit into the world of disability.

I am still on cloud nine after such an amazing day. I am so grateful for all the staff that worked so hard to make the day so wonderful an would like to give a special shout out to Michelle from Irwin Mitchell who in the words of my youngest “is a lovely lady”.

Turning the Page is the title of the book and to be honest this whole experience has been a page turner for me. It has really given a much needed boost of confidence.

It also had given my heart a much needed lift.

I got to share my girlie with others.

Her memory lives on.

 

To live in hearts we leave behind is not to die.

Thomas Campbell

 

Thank you Irwin Mitchell and KIDS for a fantastic day.

Thank you Livvy for being my inspiration.

 

Look what we did.

There are very few days in your life where you can look back and see all that you have accomplished.

Monday was truly one of those days for me.

With my charity Livvy’s Smile we hosted a fantastic memory making day for over 60 children with special needs and their families.

It was a truly perfect day.

I could tell you about the laughter that filled the centre.

I might mention the new friendships that were created.

But in this instance I’m going to let the photos speak for themselves.

Livvy snap 2014 (1) livvys snap 2014 (2) livvys snap 2014 (3) livvys snap2014 (4 x 2)

It was a wonderful day and although now I am physically and emotionally exhausted I am super proud of all that we have achieved.

Our charity is run in honour and memory of our beautiful daughter Olivia who lost her battle with Rett Syndrome in 2008.

Olivia was an amazing girl who had a real zest for life. Mischief and mayhem were her two favourite things.

I think she would be happy with the magical day created in her memory.

I’m also so sure she would think her sisters are amazing because I certainly do.

Running for our girls

I’m so excited and can’t wait to share this news with you all.

My late daughter Livvy has been chosen as one of the 195 girls to be honoured by Team Sparkle in the So Cal Ragnar Relay. 6 amazing women are running 195 miles for 195 girls with Rett Syndrome. “195 miles” that works out about 30- 35 miles each, can i just say OUCH.

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Livvy’s mile is number 171 and is being run by a Rett mama Allison Foley.

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As you can imagine I am super excited having Livvy honoured in this way it has certainly blessed my heart. But I’m also so happy to be part of this amazing fund-raising event dedicated to funding the research into curing the devastating condition Rett syndrome.

I am  seriously stoked to be part of this event.

So why am I telling you guys all this?

 Its simple I need your support.

I am hoping to raise $100 to support this amazing cause.

Help me, help Team Ragnar honour Livvy.

Seriously no donation is to small, it all goes to an amazing cause.

teamsparkle

Please check out Team Sparkle Facebook page and learn more about this amazing ladies.

Make a donation, please let them know its made in Livvy’s memory.

Also go check out Livvy’s Page over at Girl Power 2 cure, I am slightly bias about this charity as they have been strength to me in times of weakness and have given me comfort in times of sorrow. But more than that they give me opportunity to honour Livvy and to keep her memory alive by fighting alongside them against Rett syndrome.  To quote Kelly Butler from GP2C ” once a Rett mama always a Rett mama” I can’t tell you how much I needed those words.

So thats my exciting news for the day, lets support Team Sparkle as they support our girls.

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.

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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.

 

 

 

My new Livvy’s Smile T-Shirt

Over at my alter ego Livvy’s Smile we host many events that require me to wear a promotional T-shirt, both for publicity and recognition. So over the last few years I have gone through a number of tops.

So when I was asked by T-shirt Printing.net  if I would like to review one of their tops I asked with a “hell yeah”.

It was easy for me to design my top with the sizes and colours the site has available and most important was the fact that I could add both the charities logo to the top but also Livvy’s photo.

The site offers a lot more that just T-shirts they have hoodies, kids-wear and workwear too.

I was really pleased overall with the ease of use with the site also the quick turnaround of the order.

Here I am modelling my new Livvy’s Smile top.

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As you can see the quality of the printing is pretty good.

So if you are after promotional wear check out T ShirtPrinting.net.

An inspirational night

On Saturday I attended a spring ball
held at the Queens hotel in Leeds a beautiful and very regal hotel. With stunning architecture and incredible rooms.
The reason I attended this ball was to help raise funds for charities that I am passionate to support, Special kids in the UK being one of them.

Yet this ball was extra special as it honoured a beautiful little girl Lucy Mai.

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Four years ago last november Dean and Annie and my husband and I faced the worst thing that could ever happen to a parent. The loss of a child. Within a week of each other we lost Livvy and they lost Lucy Mai.

Within a week our hearts were forever broken.

We began on the journey nobody ever wishes to start.

The year after our loss Dean and Alan invited Alan and I to the Lucy Mai’s Spring Ball. To join them as they raise funds in celebration of the life and the gift of Lucy Mai.

Now I can tell you that we didn’t attend due to money issues, child care etc but the truth is we didn’t have the strength.

You see to be part of the world of special needs when you have a child with disabilities is hard.

Yet to stay part of the world when your connection to it is lost is truly courageous.

And that is what Dean and Annie are , truly courageous.

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So four years on we finally found the strength to attend.

We were there on Saturday raising funds in memory of Lucy Mai. A beautiful young girl who was a gift to her parents and to all that knew her.

We there to raise funds to support charities that are lifelines to parents with children with disabilities. Each in its own way giving strength to many on this hard journey.

I know that Dean and Annie would tell you that they don’t do this all alone. That they have an amazing team behind them and yes to that team I say thank you.

But to Dean and Annie I want to say this.

“I’m sure Lucy Mai is looking down on you both with such pride.

You are a amazing couple who have faced heartache with such grace and courage.

I think I write on behalf of many when I say thank you for all that you do.

But I write on a personal level when I say that you both rock and that you both are inspirational”

Saturday night was a memorable night in so many ways.

I’m praying the night raised lots of money.

I’m also praying Dean and Annie realise how truly amazing they are.