Tag Archives: Charity

Living like Livvy

So it’s finally here, a years worth of work, a lifetime of memories all collated together in “Living with Livvy.”

I’m so excited to share my girlie with you all, for you to read and learn how incredibly brave and courageous she was. I’m also feeling extremely vulnerable as well. Here in these pages I have not held back, I have opened my heart and my soul and its laid bare for you all to see.

It’s not been an easy journey, i have returned to places in my mind I was trying to hide from. Revisiting some of the hardest moments I have every faced.

Yet it will be worth it, if this book educated one more person about Rett Syndrome if it raises more funds for Reverse Rett Uk it will be worth it.

So people, I am laying out my heart and soul here for you all so please, please support me in this venture. Go visit Amazon and purchase my book and help me raise much needed funds, help me help those working tirelessly to one day have Rett syndrome cured. One day have this diagnoses be one not of fear.

It can happen and it will happen,  let’s help  make it so.

Please visit Amazon and purchase the book, please let your friends, family, coworkers know about the book. Share this post on your social media, lets get “Living like Livvy” out into the hearts of minds of everyone. Lets make Livvy”s legacy really one of hope, lets do her proud.

My Special week

So I’ve just returned from what I often describe as the best week of the year Special kids in the UK camp. The week where one field becomes full with family.

I believe this year for me personally has been the best year ever. 

I pushed my own personal boundaries and chatted to more people than ever and have made some amazing new friends thanks to this.

The camp site we stay on is called Lower Lacon and I can say beyond any doubt that it’s one of the best sites anywhere. They go beyond anything for us all and really make the whole group feel welcome. The facilities are fantastic and always spotlessly clean. 

It was certainly a busy camp with everything from adult colouring sessions to a kids magician.

My personal favourite time is always the Special Kids in the UK Olympics. There is nothing better than seeing the determination on the faces of the children as they line up to race. The wobbly walkers, manual wheelchairs and so many more. You can only imagine the intensity of the men’s race, I’m sure there is year round training for this one. 

Seriously I love this afternoon it just sums up Special kids in the UK for me. Its not about being inclusive, it’s that for one week of a year there are no differences, there are no boundaries. No one looks at what our children can’t do it’s always about what they can.  

Alan getting broody over the youngest member of our special kids family.

This year I finally managed to watch the Ugly bug ball, The annual fancy dress competition. Again I think this year topped all previous ones. With the special guest appearance from the Spice girls, though to be honest I think Old Spices would be a better description.

Truly how amazing are they!
  

  

Add to these Miley Cyrus, a ninja and the cast of Narnia it was an awesome night.

One of the most poignant times of each camp is the balloon release. Seeing the sky filled with colour in honour of those who have gone too soon both breaks and blesses my heart. I was invited to speak before the release but emotion got the better of me. I wanted to honour all those missing but my heart was just broken. One family from our special kids family had laid their beautiful girl to rest last week. My heart just ached for the pain i know they are facing. My words just spilled into tears. Grief holds a rawness like no other. 

I love this camp, it’s a week where memories are created that will last a lifetime. I love that I get to share stories of Livvy with people who remember with me. At this camp I am always a mom to four girls and I am so incredibly grateful for this. 

Livvy is remembered so much on this camp and not just because her name hangs on the tea tent that we sponsor each year but also because we hold our annual Livvy’s Smile tea party. So many cakes, so many smiles no better way to remember my beautiful girl. Check out the hashtag #makingmemorieswithLivvyssmile on social media sites to see the memories we have created, Facebook especially.
  

All in all it was an amazing week, yes I was glad to return home to my bed but I was sad to leave this field. 
I want to say a big thank you to Lower Lacon for their wonderful welcome. It seriously is a fantastic camp site and I highly recommend it.

  

I have especially loved watching my youngest daughter flourish. She became a little like the Pied piper this week always surrounded by children. It certainly makes sense that she wants to work with children with special needs later on in life. I’ve pinched this photo from her Facebook cover. How special is this?

 

 

I want to say thank you to the trustees for arranging an awesome week.

A massive thank you to the BBQ team for their constant effort at keeping us all fed. I didn’t realise how much you actually do each week until I camped behind you. Twice a day, every day you were there working hard and for that and the yummy curry I am truly grateful. You guys rock. 

Special kids in the UK is an amazing charity from the forum to the meet ups it’s a wonderful place for parents and carers of children with disabilities to get support. 

This camping week whilst a highlight of the charity is only a part of what it offers. I cant actually remember how long I have been part of this charity but I’m sure it’s been over 10 years. 

If you are a parent or a carer of a child with special needs check out the website and the forum. Honestly you won’t find a bigger welcome anywhere. 

It’s more than a charity it’s a family.


My Special kids in the UK family.

In honour of Livvy

Saturday was an amazing day, we held a Livvy’s Smile Donkey Tea Party.

The sun shone for us, the donkeys behaved and memories were made.

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I had a truly wonderful time.

I got to catch up with old friends and make some new.

I got to listen to laughter as it filled the air.

I got to watch children cover themselves with chocolate and cream as they ate their cakes.

Donkey rides, cart rides and so much more.

Seriously it was awesome.

Yet as I sat at home editing the photos from the day my tears began to fall.

My heart just ached for the missing piece of my puzzle.

Whilst I was blessed with some amazing hugs from some truly incredible children my heart yearned for my little Tinkerbell.

Birmingham Donkey Sanctuary holds a special place in my heart.

Each corner is filled with the echo of my Olivia.

Those first steps she took defying the Drs.

The giggles as she rode her favourite donkey.

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The dirty looks she gave Amber when told to sit up straight.

So many moments, so many memories.

 

I was asked why we started Livvy’s Smile and why I hold events that bring me pain?

It is simple really we started Livvy’s Smile because we are so grateful.

So thankful for the wonderful memories we have stored from Livvy.

Memories that truly get us through the darkness and we just want to give that light to other families.

On Saturday we created those special memories full of chocolate eclairs and cool moms.

Memories that will give us hope through the hard times.

Why do I it when it causes me pain? 

Because I can and because I have to.

I was blessed to be Livvy’s mom, to get to call this amazing girlie my daughter.

Livvy changed my life. 

The realisation that we didn’t have forever taught me to live in the here and now.

To live a life full of laughter and love.

 

So yes hosting these events will always be bittersweet.

I’m sure I will always return home and cry for the missing piece of my heart.

But I will never stop working hard to create memories because each moment, each memory is in honour of my beautiful daughter.

Every smile I see brings her closer.

 

Yes, I know my heart will always ache,

Grief is relentless.

Like a snake it slowly twists around your heart until you cannot breathe.

Your body craves for one more breathe, one more moment.

So as the tears fall I know they do so in honour.

Each teardrop is formed in everlasting love.

Livvy is part of who I am and who I always will be.

Livvy’s Smile is testimony to eternal love. 

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Thank you doesn’t seem enough.

I’m not sure how I am feeling right now, yesterday was a whirlwind of emotions. I laughed, I cried and I laughed some more.

There isn’t really a guideline on how to feel I guess, no instruction book on how to celebrate birthdays of those that never reached them.

I know some think i’m strange, that to celebrate the birthday of a child that has passed is wrong or odd. That’s ok, everyone is completely entitled to their own opinion and the fact is grief is so unique. Nobody feels the same, everyone has their own journey through it or as I believe ‘with it’.

I’m struggling to find words to describe yesterday it was one of the hardest days of my life but also one of the most blessed.

From the moment the clock struck the new day the messages started to flood in.

Birthday wishes for my beautiful girl.

Messages, pictures and names drawn in the sand my girl was remembered.

Friends all over the world wishing my girl a Happy 16th.

Yesterday was a blur of family, friendship and cake, it was a truly special  day.

It is only now as I sit back and reflect that I really realise how completely amazing it was.

I could not thank people enough for what they gave me yesterday. After many nights of wondering and worrying that my Livvy would be forgotten my heart was swollen by the love I felt and the amount of people who remembered her day.

The fund-raising event for the charity formed in her memory Livvy’s Smile was a great success I don’t yet have a final total raised but I know its in the hundreds which is so wonderful.

Besides the donations I also want to say thank you to those who ate cake with their friends and family in honour of this day. I know I harp on a lot about this but memories are the greatest gift we can give ourselves and I am so blessed that you all made new special ones yesterday in honour of my girl.

So yes I’m not sure how I am really feeling today but what I do know is that my heart is full. My girl was honoured in such a beautiful way and for that I will always be grateful.

Thank you doesn’t seem enough but THANK YOU.

Livvy's banner

 

I’m on the T.V

So a few weeks ago I blogged about my youngest daughter winning the Mayor Civic award  due to this amazing achievement Brodie and I were asked into our local tv station to share more about the award and Livvy.

Take a look at our interview here.

Be kind, I love to talk and Brodie bless her got stage fright.

 

 

If you want to learn more about Livvy’s Smile check out our website Livvy’s Smile and if you are interested in joining us to celebrate Livvy’s 16th Check out the facebook event here…

We need special dresses for a truly special event.

Now if you read this blog you will  know I am one proud mom, my children are my world.

My girls have faced so much loss in their short lives and yet still have held on to their compassionate hearts which isn’t easy when faced with so much hurt I can promise you that.

Besides being fantastic sisters to Livvy they now have happily opened their hearts and homes to the children we foster.

So when I found out that my youngest was a finalist in The Eleventh Annual Mayor’s Civic Awards I could have cried, ok I did cry.

The Mayor’s Civic Awards are now in their eleventh year honouring local people who make outstanding contributions to the borough and my girlie is one of those they are honouring.

We are all so excited for this special evening but are a little worried about what to wear. We don’t really attend many formal events so this is both exciting and nerve wracking for us all.

Especially for my daughter and I as dress shopping is a little overwhelming for us denim loving ladies.

Still we have been searching the internet for our special dresses for this special event.

Here are our choices.

Brodie and I both fell in love with dresses from Chi Chi Clothing 

Brodie loved this elegant lace skater dress

 

Chi Chi Florence Dress

 

Whilst I fell head over heels with this cap sleeve baroque style maxi dress the detail is simply beautiful.

Chic Chic Avril Dress
Chic Chic Avril Dress

 

These dresses are truly beautiful and would turn a special night into a truly amazing night.

Brodie also fell in love with this stunning dress from New Look 

I love this one and think the colour would really compliment Brodie’s beautiful big blue eyes.

John Zack navy low lace dress
John Zack navy low lace dress

 

I love this Little Mistress Wrap Front Maxi dress from Asos. It’s so special, I am so nervous about this event so making sure I feel good is so important.

 

 

Little mistress wrap front dress
Little mistress wrap front dress

 

Brodie doesn’t have a third choice but this Little mistress emb nude maxi dress.  from Simply Be caught my eye, I love the detail on the top of this dress.

Little mistress nude maxi dress
Little mistress nude maxi dress

 

Brodie and I are both excited and nervous about this event. It is so special that Brodie has been named as a finalist, I am so proud of her.

 

It will also be a wonderful opportunity for us to tell people about Livvy’s Smile.

Me and my girl

 

If any of the brands listed or any other brands would like to work with us on this we would be extremely excited and please email us at walkingwithangels@live.co.uk

 

Gift and Befriend

Each Christmas we always try to take time and remind our girls about the true meaning of the season.

Behind all the excitement of presents and the enormous amounts of food.

We remember those who haven’t what we have.

The girls get one monetary gift each year which they choose to donate to a charity of their choice or to buy something for someone in need.

So this year when I heard of the charity Gift and Befriend I was excited as this was the perfect way for my daughters to really see those they are helping and also giving them freedom over what they wish purchase.

Over at Gift and Befriend you register to become a giver you then get to learn about those in need known as the receivers and what they actually need from their own Amazon wish list.  You then get to choose the items you would like to purchase from their lists and they get shipped directly to them.

I think this is a fantastic idea, especially as one of the main reasons I hear about people’s reluctance to donate to charities is their concern about how much the actual person in need really gets. This site take the fear away as you purchase and ship straight to the receiver of your choice.

I sat down with my youngest daughter Brodie and  looked round the sitebig heart

 

She really enjoyed reading the profiles and learning about those she could help. It took a while mostly due to her desire to help them all but Brodie decided she wanted to help little Moses, his story just touched her heart.

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I know Christmas is always a financially tight time of year for many of us but before you buy that extra stocking filler maybe consider adding a gift to one of the receivers instead.  I know my girls really appreciate this and its one of their favourite parts of Christmas.

Stop hating on Band Aid 30 and start loving those dying from Ebola.

So Its official I am getting serious peeved with all the negativity surrounding the Band Aid 30 single.

 

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It’s as if whatever people try to do someone will have a moan.

From comments regarding the tax status of the singers to the rampant disregard for the devastation Ebola is causing.

Let me state a few things here.

The tax status of the singers involved has no place being discussed alongside the single.

If Sir Bob or Bono are evading taxes then that’s a issue for the government to deal with.

They will be tax evaders regardless of our spending of 99p to buy the single,

If we don’t buy the single in protest the only people that will lose are those dying from Ebola.

If you have an issue with the wealthy receiving tax breaks well then us your vote wisely at the next election.

Those dying from this disease in Africa right now well they don’t make government policy.

Secondly I don’t give a damn if One direction are flying about in separate planes because they don’t get on.

Does this effect the support we can provide to fight this disease “No.”

Should the singers involved in the single be donating their money not their time?

Maybe they have !

Who knows why are we jumping to the conclusion that it’s one or the other.

Let’s be honest if they were out in the media shouting about their donation we would be ripping them apart for this too.

Damned if you do damned if you don’t. 

There are also many other entertainers out there who have done jack shit let’s not beat up on the ones that have.

So what if Sir Bob swore on television maybe he was annoyed that a reporter decided to take the subject matter away from the real issue “the people dying”.

We can all take cheap shots over tax breaks another time maybe when this devastating disease has been beaten.

It’s crazy it’s a 99p single.

It’s not about the singers.
It’s not about the lyrics.
It’s certainly not about the tax returns of the performers

It’s about a devastating virus which has so far infected over 13,000 people and claimed the lives of over 5000.

I’m tired of excuses.

Like the single or don’t that your choice.

Buy it or don’t.

But stop telling others how they should help and do something yourself.

Imagine if we all waited for others to act.

How many lives will be lost due to our inaction.

Donate today and let’s stop the outbreak in its tracks.

Let’s not lose anymore lives to Ebola.

Compassion Sunday

Today I want to introduce you to two special members of my family.

Nyiranzayakira and Diana.

I may have never met these beautiful girls but they are my family.

They both have special places in my heart and are always in my prayers.

As a family we sponsor both with the charity Compassion UK

I have mentioned Compassion UK here on my blog before but as today is Compassion Sunday I really wanted to share with you the heart of the charity.

 

The children

 

We first started sponsoring Nyiranzayakira about 5 years ago.

My youngest daughter Brodie just felt she was the one for us from the profiles we got to view.

Nyiranzayakira is now 11 years old and she comes from Rwanda.

 

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She loves to learn and help take care of her family.

 

Diana is 5 and from Tanzania.

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She loves to colour and play.

 

We choose Diana for a very special reason.

Diana was born on the day we lost Livvy.

By sponsoring Diana we hope to give life when one was lost.

 

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Sponsoring these girls has been true gift for us as family.

We love receiving letters and learning about their lives.

Reading about school and how their families are.

 

Compassion UK are a wonderful charity they work through local churches in poor communities around the world to release children from poverty in Jesus’ name.

Compassion’s Child Sponsorship Programme is the heart of Compassion’s ministry to children living in poverty. It aims to disciple, equip and enable children to develop into fulfilled and responsible adults.

We are so blessed to sponsor these two beautiful girls and having them both in our lives has really enriched them.

Reading and watching these girls flourish has impacted on us as a family.

We value the little things so much more.

I ask you today to consider sponsoring a child with Compassion UK.

For £25 per month you can transform a life of a child.

 

Tell a child today that you are here for them.

 

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