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.

It’s nearly August (squeak)

I cannot believe we are so close to August. 

This summer month means so much to me. 

This month is filled with the friends I get to call my family. 

My Special Kids in the Uk family.

  

I am so excited to turn my virtual hugs into real ones.

To wrap my arms around those I haven’t seen since this time last year.

To see how people have changed, how the children have grown.

I’m so excited to meet our new families, to get to know how special and amazing each one are.

I am bubbling with joy to be hugging on the new additions, babies not even conceived this time last year but now very welcome members of our crazy tribe.

I cannot wait to congratulate those who have major achievements since we last met. New doctors, new nurses, new drivers , new walkers and new talkers and so many more. 

Each one so inspirational in their own way.

I could cry with the excitement I feel, these people are friends who walk alongside me in the world of disability. 

Those who battle each day, challenging decisions, fighting for support and so much more.

This camp makes my summer.

This field is our island for a week or so.

A place where no one looks at our children differently.

Where no one questions our parenting or blinks an eye at tantrums or melt downs.

Where laughter is the daily medicine that heals our hearts.

I want to laugh with men in dresses, give thanks for women with socket sets.

  
Where,we challenge the term normal in so many ways.

This year is a special camp, well even more special than usual. 

It’s the 10th Anniversary.

  
How incredible is that!

10 amazing friendship making camps.

Camps full of memories that are lasting lifetimes. 

Ugly bug balls, balloon releases and the best last night chats you will find anywhere.

I love this camp.

I have the fire pit ready just have to get the marshmallows.

See you in a few weeks xxx

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.

alvis livvy

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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Would It change what I believe? 

As I placed my lottery this weekend I was wondering about what I would do if I won the jackpot. A dream i’m sure we all have had at one time or another. I was wondering if being a millionaire would change my political view point. 

It’s easy I guess to say tax the wealthy when you are poor. Would my view be the same if I was one of the elite?

I didn’t have to think about it that long because I truly think my answer would be no.

I don’t think my viewpoint would change.

You see no amount of money can replace my compassion or my empathy.

But most of all money couldn’t replace my need to feel part of something.

You see we have all been sold the lie that being individualistic is the only way to live. To only think about oneself and our own wants and needs. But this only leads to one thing loneliness. 

The consumerism lie that things can make you happy has been pushed down our throats way to long.

Yet the truth is far from it. 

The newest model phone can be fun, but will it hug you close as you fall asleep?

That gorgeous designer handbag will look good on your arm but will it laugh out loud at your stupid jokes or wipe away your tears when you are sad?

Community and relationships are the greatest of things and money cannot buy them. 

Having money won’t stop me loving on children who have no place to call home.

Stop me fighting for services and support for my friends who are either disabled or raising disabled children.

Having a full bank account will not stop me encouraging those who need support or guidance. 

I’m not going to lie and say winning the lottery wouldn’t be amazing. My adapted home on a farm depends on it. 

Yet whilst the money would make life easier it wouldn’t make me complete.

It’s my, family, friends and passions that do this. 

   

Lets play on National Children’s Day

Play, that thing we assume all children do.

But do we realise how important it is to our children’s development?

  • Play increases self-esteem and self respect.
  • Improves physical and mental health.
  • Extends their social skills, teaches turn taking and patience.
  • Encourages imagination and creativity
  • Offers opportunities and for children of abilities and cultures to play together.

 

Today is National Children’s Day

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Let’s celebrate our children and make today one of play.

 

The crazy bunch of people I get to call my friends.

“I’m tired of friendships mom” words I wasn’t expecting to hear from my 14 year old daughter. I mean giving up on friendship at 14 seriously I think I was at least in my twenties before I felt this way.

My daughter and I are similar we tend to lay our hearts on the line a lot quicker than most. We have so much hope and often find ourselves a little shell shocked from life, from people.

Our hearts can be a little battered.

Friendship is a seriously strange thing, it can bring so much joy but can also turn you upside down and inside out.

My life has been blessed by friendship but also my heart has been broken by it too.

I hate watching my daughter walk this pathway, watching her turn herself in circles.  I am shocked at how cruel we can be to each other. How words can be flung about without any reproach.

I hope that one day my daughter finds the friends she deserves, those that will cherish her tender heart.

I know I am so grateful for my friends, the people that surround me in my life today. My friends keep me sane, they drag me out of my moments of darkness, they challenge me to be the best that I can be.

I love that I get to surround myself with friends who share my passions, ones that are willing to stand up for others. Fight for disability rights, free speech, equality and to challenge and change political policies.

I am honoured that I share my life with mothers and fathers of children with special needs, parents caring for their children with compassion, empathy and kindness.

With foster parents, adoptive parents who open their homes and hearts to children in need.

Recently I have found myself building friendships with amazing women who are pro active in the body positive movement, woman who are encouraging  other woman to love their bodies and celebrate who they are.

Friendships are ever evolving, some friends are there for a lifetime some for just a moment.

Yet for however long your friendship lasts its special, it changes you, makes a mark on your life,

So today I’m taking time to celebrate my friendships and to say thank you to the crazy bunch of people I get to call my friends.

I truly love you all.  xxx

 

Friends

Not staying down

So we now have a Conservative government and to be honest I cannot even pretend to be anything but devastated about it all.

I have real fear for the future of those with disabilities. Those who struggle to make ends meet. Those who have nowhere to live and my list goes on and on. 

I am actually feeling truly despondent. 

Yet after listening to Ed Miliband’s leaving speech I was reminded of something.

“Finally, I want to say this. The course of progress and social justice is never simple or straightforward. Change happens because people don’t give up, they don’t take no for an answer, they keep demanding change.
This is my faith: where we see injustice, we must tackle it. ”
Ed Miliband

People can bring change and we can fight injustice. Maybe Russell Brand is right it’s time for a revolution.

A time for compassion.

A time for community 

A time for change.

A time for us all to find our voices and start shouting louder.

A time to fight for what we believe in.

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.
Margaret Mead

I have to have hope and I for one aren’t staying down