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. 

IMG_0004livvy2

#Nationalbestfriendday

Well, yes I’m a day late but hey ho yesterday was National best friend day, and I just want to say a massive thank you to those crazy people I get to call my friends.

Friendship is something I haven’t always found easy, I didn’t really have the best school years. Yet over the last 20 years my life has been blessed by some amazing people.

Friendship has formed on school playgrounds, hospital wards,camping fields, via the plus size community and here on the internet.

I have friends I get to see often and friends I have yet to physically hug but each and everyone has blessed my life.

Friendships are beautiful things and I know I wouldn’t have survived the last 6 years especially without some incredible people who have held me tight and lifted me up.

My Grandad once told me that  “Strangers are friends you have to meet” and this philosophy has stood me well over time and I hope it continues to do so.

So here’s to the strangers I now get to call friends and those I have yet to meet.

I love you all xxx

best friend

I promise

The beautiful Katt from The Curvy Cupcake  inspired the amazing  Debz at The Not So Secret Diary of a Wannabe Princess to set us all a challenge, the #PlusSizePromise.

The challenge is to blog five promises that we make to ourselves this summer.

Here’s mine.

 

1. Get my legs out, I’m tired of being hot and bothered every summer. This year I’m going to get my milky white legs out and let them breathe.

get my legs out

 

 

2. Take time out for myself. This is something I really need to work on, I need to say NO a little more and give myself some quality time, to read, to enjoy a meal with friends, a nights of dancing and copious amounts of alcohol

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3. To not back out.  I can list you a million reasons why I shouldn’t do something. This summer is the start of me doing less of this. I want to be positive and believe in myself. I CAN DO THIS.

Icando this

 

4. Its not always my fault.  I am so good at blaming myself that it could be considered an art form. I’m happy to blame myself from anything from a squashed spider to a natural disaster.  But guess what it’s not always my fault and this is something I need to learn.

Itsnotmyfault

5. More time for us. To spend some more quality time with my husband. After twenty years of being together we need to start carving time into our schedule for quality time. More romantic meals, walks, cuddles.

moreofthis

 

So here are my five promises.

Why don’t you join in x

 

Trigger points

I remember reading an article about the effects of grief on the mind. How many grieving parents, loved ones could suffer from a form of PTSD.

Post traumatic stress disorder is often though to be only related to soldiers, those many brave men and women who come home battle scarred. Who have seen more than most could imagine. I for one am not disputing how terrible and awful this is. Still it is true that post traumatic stress disorder can occur for different reasons. It could happen to a victim of a crime, a witness of a traumatic event a harrowing close call , etc.

So yes I can see grief causing PTSD in fact let’s be honest I think I could venture out and say that grief could actually be at the heart of it. Grief is the extreme sadness at the loss of something and in all cases I have mentioned there is an element of loss.

Soldiers have lost part of themselves through all they have witness.

Victims of crime have lost part of themselves to the perpetrator.

Whatever has happened, who ever caused it the event has taken away who you were before it. So yes you have lost a part of you.

I know I lost a part of me when Livvy died. I changed right there and then. I could never go back to the person I was before. I had lost my daughter. How could it not have changed me? What greater loss is there than the loss of a child?

This article was trying to get people to really understand how badly one could be effected by grief. How what some would state as a mental condition is actually also a physical condition.

How we need to accept and understand our trigger points.

Personally this all made sense, I know there are places, smells even people that cause my heartbeat to race. That when I am at a certain place or I smell a certain aroma ,I see or hear certain things I am transported back into the time when I was there with Livvy.

This is often beyond just memories, take for example the local emergency unit I cannot enter it without feeling nauseous. It was there I left my beautiful girl. Even now still the siren of an ambulance makes me tremble.

Triggers aren’t always expected either they can hit you when you least expected. Like only the other day when I was at the children’s hospital.  I was sitting there minding my own when a girl passed me with blond crazy curls. My body shook and  I could have just sobbed right there and then.

Being truthful I had expected to be little upset. I had spend so long in this hospital with Livvy. I could see her in the corridors, the cafe everywhere. So maybe my body was primed, but blond curls, seriously.

I actually had to pinch myself to stop me from falling apart. Here I was trying to be brave for my foster son, losing it wasn’t an option. Well, it wasn’t until a few hours after when in the privacy of my bedroom I could let the tears fall.

I guess why I’m sharing this is because sometimes we need to understand our minds and our body’s and how one can seriously effect the other. Also I think we need to be kind to ourselves a little more.

Grief in any form is a powerful thing. Maybe you are grieving the loss of a friendship, job, marriage. Maybe like me you heart is forever broken by the loss of a child. I don’t know. Yet understanding that this loss changed you is the only way you can more forward. It’s not easy and their will always be triggers but to put it simply life goes on. Even when at times you don’t want it to.

Listen to both your mind and your body and understand that sometimes being brave isn’t an option.

be kind to yourself

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 need you to eat cake.

I have something to share with you all today, its information on a fundraising event I really would love you to be part off.

Now before you turn off thinking oh no she is after my money please just read on a little more.

On May 5th I’m asking you to eat cake.

That’s right you ‘EAT CAKE’ how cool is this?

16thbirthday

On May 5th 2015 my beautiful daughter should be celebrating her sixteenth birthday, her ‘sweet sixteen’ and to be honest I’m rather peeved thats she isn’t.

In fact as I write this I’m tumbling through the crappy vortex of grief, I’m hurting, I’m missing and I’m damned angry at life.

Yet rather than allow myself to fall into the abyss I decided many weeks ago to turn this painful day into the celebration Livvy would like, the birthday Livvy deserves.

So here is the bit where you come in.

I have created a Facebook event called Livvy’s 16th birthday fundraising celebration and the hashtag #Happy16thLivvy

What I’m asking you do is this, wherever you are at home at work with friends or family come together and eat cake.

Celebrating my beautiful girl by making the memories that we all hold dear.

Then each, or all together pledge £16 to the charity formed in Livvy’s memory, Livvy’s Smile.

This can come in the form of a cheque to Livvy’s Smile or via Paypal, Livvyssmile@hotmail.co.uk

Also I want photographic evidence  ha ha.

Upload to any social media sites using the hashtag #Happy16thLivvy  maybe if you can tag me as well @livvyssmile on twitter or upload to the event page also on Facebook. I so want to see you smiles and you making memories as I cherish those I have of my beautiful girlie.

Every penny raised from this event will go towards creating memory making days for children with disabilities.

So are you with me ???

16thbirthdayinfographic 600

 

 

Life is a roller coaster

Today I’m feeling really reflective. I guess birthdays often have that effect on people.

I’m 39 today.

I look at that number and it freaks me out. The following one the big 40 is so scary.

I never used to really consider age.

I’m remember turning 30 was hard for me. I think for a long time I had thought of my parents as being in their 30’s, so I was freaked out that I had reached it.

Yet wow 40 that’s gonna bite.

My 30’s have been one hell of a decade. I have faced more than I could have ever imagined.

Losing Olivia very nearly destroyed me if it hadn’t been for her legacy of strength and her beautiful sisters I’m not sure I would be here.

It’s certainly been a decade of pain.
Still it’s also been one with some hope.

I’ve found a job that I love. I have had my life blessed by children who are not mine from birth but are mine of heart.

I have made fantastic strides in my writing. Seen myself published and had many wonderful experiences thanks to the gift of words.

I’ve also been on what I call “my journey of self loving”. Finally learning to love myself as I am, not how I felt I should be. Modelling and walking a catwalk are things I never ever imagined I would achieve.

My life has been blessed with new friends, yet my heart aches for those that turned away too . Never expected it to be like this and I do desperately have a void in my heart. I miss them.

So I guess it’s been a roller coaster decade. The Ronan Keating song is running about my head on a crazy loop.

“Life is a roller coaster and you just got to ride it”.

 

How blooming true is this!

The ups and downs of my particular ride well, has left me either screaming with joy or sick to my stomach.

Yet my decade isn’t over. From today I have another 364 days to make it count.

I want to push my boundaries before the end of this year.

To challenge myself more.

To make those memories and maybe tip the scales of this decade to the side of the light not the darkness.

To one of joy not pain.

So here’s where I need your help.

What crazy memory making things have you done that you would like to share?

Special places you have been?

Art that needs to be seen?

Books that need to be read?

Food that needs to be tasted.

Sunsets that need to be watched.

I want to really live these last days of my 30’s. I want the decade to hold more joy that pain ( if thats possible).

Help me remember my 30’s with a smile rather than tears.