Tag Archives: friendship

A special field

This weekend I received some news I knew was coming yet never wanted to hear. My friends child had passed away, disappeared into the hours of the morning leaving behind a heartbroken mother. My friend knew she didn’t have forever but was praying desperately for one more day.

One more day.

How often I would wish for Livvy one more day, one more hug, one more giggle.

How often do i allow grief to consume my heart?

Too often .

This last week I have been camping in a special field in Shropshire, the field itself isn’t rather special but for a week or two each year it transforms into something rather remarkable.

From the grassy emptiness it becomes full with love, laughter and friendship.

It overflows with energy, life and living.

For this time each year this field becomes a place where friendships are forged in life experiences.

This field becomes a place where children the world tells cannot, CAN.

This field is rather dangerous though, it is rife with infection, a infectious disease known as hope.

It creeps up into your soul and you start to believe that anything is possible.

Children who can not communicate start to talk, children who cannot walk take steps.

Parents close to breaking become refreshed, families divided are reunited.

This field has no barriers, its a place where everyone gets to be exactly who they were made to be. Not everyone gets on but there is a freedom in acceptance. We are all walking our own pathways and sometimes they can be overwhelming, but here on this field thats ok. You can cry, scream or break down, complete in the knowledge that we all get it.

Over the last week I have become a people watcher, I have observed shy children blossom in confidence, from the first awkward hello to beginnings of life long friendships.

From fire pits to bouncy castles friendship has flowed around this field, some already a lifetime in the making, others being created in that moment.

I have heard so much laughter than even in my grief it has lifted my spirit.

We have had fancy dress from the cute to the never to be unseen, quiz nights, animals and magic. We have hosted our own special Olympics with a level of competitiveness and determination I still can not get over. A child may not be able to walk but they can scream with joy at whizzing over the ground determined to get a medal on their chest.

A balloon release so painful yet so beautiful, how can the most painful part of the week be the most amazing? My heart breaks as I watch those balloons lift up into the sky, my soul aches for my Livvy so desperately I can hear it scream. Yet as my eyes drop to those around me I am struck by how wonderful life is. How everyone standing there beside me gets it somehow. Some may have experienced a loss, others may live in fear of it.

Yet fear of death isn’t found on this field, fear isn’t welcome here.

This field, this camp is about living.

Its about packing life into every moment.

Its about cherishing one another and holding on to what really matters.

The world isn’t allowed on our field, for a week each year we are protected from the daily battles our lives bring to our doors. People who don’t understand don’t visit this sacred place, every chair is filled with people that understand or accept.

Different struggles, different issues, different lives but we are united in our love, our love for our unique wonderful courageous children.

Our special kids. 

 

  • A big thank you to  all at Lower Lacon caravan park for looking after our special field for us all. For welcoming us in a way I have never experienced on any campsite anywhere else and for also being just truly wonderful people that I am pleased to call my friends.

Inspire or destroy?

Last week I was lucky enough to get to listen to the inspirational Nick Barwick. Nick is a motivational speaker who came to a fostering meeting to share his experiences as a care leaver. His story is incredible, he has faced adversity, pain and suffering throughout his life but still found the strength and courage to achieve his dreams, he defied the odds and he overcame.

Nick is passionate about sharing his story, he wants the success stories of life to be shared. We need our children to have hope, that if they are struggling and finding life a struggle they can remember that where they are right now is not where they need to end. This is doubly important for all children within the looked after system, they especially need the reminder that there is Hope in this world.

I took an awful lot away with me after listening to Nick speak, but what has been twirling around in my head since I left the meeting was the impact of ‘words.’

Let me explain a little, as Nick was sharing his story he spoke about being told by some professional in his life that he would not achieve, academically, financially and emotionally, and how these words for a long time became a self fulfilling prophecy for him.

How the words spoken to him became the words he spoke to himself.

Words have power!

They can inspire but also they can destroy.

words

Hearing Nick’s story just hit home how important our words are,

How as Mother’s, as fathers, as teachers, carers, our words have an impact on hearts.

How as a friend, a wife, a sister I need to use my words wisely.

How often have we let words spoken to us bury deep in our hearts?

How what may have been a passing comment has be able to consume our minds.

Someone else’s opinion become our truth.

I know I can look back in my life and raise my hand numerous times for when words spoken in hate became my reality.

“You won’t pass it.”

“I wouldn’t even bother’

“You are not good enough”

“Who would love you?”

How I let these lines of letters sink deep into my heart like an anchor dropped into the ocean, dropping slowing until they find a place to settle and hold, hold on tight.

How I  have allowed hurtful words to crawl under my skin until I believed them completely, burying under my skin into my blood to pump through my veins, straight to my heart.

Burrowing deep until I owed them as my truth.

Thankfully like Nick I had someone in my life who challenged me to question these words. To remind me that my future was mine to create.

That it was up to me to write my own story. 

story-of-your-life

I’m still a work in progress, my story has many chapters left to write.

I’m still learning to throw away the words that hurt, to erase the words that are wrong and untrue.

To protect myself from words that do not inspire or encourage.

I’m creating my own vocabulary and as I do this I hope to create another for my children.

I want their story to be one of adventure, excitement and hope but what I want most of all is that the biggest chapter that they write will always be one filled with love.

I pray that story is one of knowing, knowing how loved they are. 

What defines you!

If you were to read about my past in script form you would be forgiven for thinking that this may have been a script for a television drama or more likely a soap opera.

It’s a story full of pain, loss and at times anger.

Yet it is my life and right now I am walking a journey which is laying it completely open and completely bare and its hard. It fact it’s blooming painful, yet in the midst of the tears of which there has been plenty I have actually found myself feeling a strength that is holding me all in place. In fact it must have the wire that has held me together through this life’s journey.

My faith in myself.

DSC_0147

 

I cannot go back and change the past. In fact I’m not sure I would ,as everything that has happened has formed me into the person I am right now and I actually rather like who I am.

We all have pathways to walk and as human beings we will make mistakes, we mess up and at times we completely screw up but its how we move forward that defines us. How we learn from experiences and how we grow.

 

My life may have been messy, but it has challenged me to see beyond the barriers. I love with all my heart, I believe in people with all my soul and most of all I have hope. Hope that with love and empathy this world can and will be a better place.

 

So if right now like me you are feeling scared and vulnerable keep pushing forward because you may not realise it, but these moments, these challenges may be the moments that define who you really are.

Countdown to 40

40

 

I realised last night that in under a month I turn 40. This is a major milestone in my life but one I am so excited for.

Growing up I remember thinking 40 was really old, I mean it seemed that my mom was 32 forever so I was sure I would stay this way. Yet time has moved on and I have been slowly creeping towards this age.

I remember when I turned 30 I was really freaked by it all, I didn’t feel ready to be 30 years old I was uncomfortable and not happy in my own skin. Life wasn’t easy and I had just started to show signs of the illness that changed my life. I look back to those days when I was chasing after 4 children under 10 and teaching dance. I remember just not feeling complete as if I wasn’t living life to the full.

Fast forward the last ten years and my goodness a crazy amount has happened. I have walked through some of the darkest moments of my life. My heart has been broken, tore up into millions of pieces and then trodden on. I never imagined at 30 that I would have to bury a child let alone two. I would have never been able to comprehend surviving the loss of my daughter and my foster son. Never in a million years. Yet somehow I have survived, my heart may never be complete but it is learning to love on, learning to beat strongly again and I am learning to live life to the full again.

I know deep down that 40 isn’t really a special age. I mean I preach often about celebrating every day we have here, but still I am rather excited for the day.

This may sound big headed but I like who I see in the mirror now. I may not be a dance teacher or able to fit my bum into a size 12 but I truly love my body and I’m so grateful to it. It has given me four amazing girls, completely different, independent ,inspirational girls. It allows me to foster two truly awesome boys, each a blessing in their own special way. My body may be a little battle worn but it’s not been beaten and I am so thankful for this.

I look back to the person I was 10 years ago and I know I have been on a journey. I use the term “self discovery” loosely  as is the only way to get close to describing  the transformation I feel I have faced.

I love who I am (yes I may have said that before) but I seriously do. I love my emotional side, no more will I apologise for my random tears or unexpected hugs. I’m empathic and I care and this is something I am proud of now. No more calling myself soppy and pathetic, I actually rock.

I love my courage, I am more willing to put myself out into the danger zone, being vulnerable, feeling scared but still moving forward.

I love my brain, it’s ok that I am a little geeky at times, that sometimes the idea of a good book wins against a movie or a night out. That I appreciate my own company and yes at times I get lost in my own mind.

I love myself and I love my life.

As I head towards this birthday milestone I do so with so much gratitude.

Over the last years I have had people walk into my life that have blessed me in so many ways. Friends that love me for me, deep true friendships that can pick up after a time apart just where we left off. Friends I can laugh with, friends I have cried on. I am so grateful for each and every one of them.

I am so thankful for my family, my daughters and my sons each so unique and so beautiful. Getting to watch them grow and learn and experience life is such a wonder, such a gift. My Dad, my Step Mom, my inlaws, my aunts, uncles, cousins, relantionships that I truly value and people I truly love.

My husband, I am completely in love with this crazy man, after nearly 20 years of marriage I still get that flutter in my heart when he walks into a room. He makes me laugh, he drives me insane, but he truly is my soul mate.

I am so thankful that I miss my Livvy, because missing someone is the recognition of an amazing love, a truly unbroken bond. My girl and I will be together again one day, but until then I am going to try and live as she did, fully and with all my heart.

So the count down to 40 begins and I’m so excited. I’m so ready to celebrate the 40 years I have been here with all my family and friends. An evening full of laughter, music and hopefully a gorgeous outfit.

Yet 40 is only the really the beginning, the start of a new stage in life, one I hope will be full of love and laughter and the people that really make my life truly amazing, my family and friends, because with them and because of them I actually love myself more at 40 then I ever did.

 

40 looking good

Hold on

different then

 

Every day brings changes and sometimes I want to run and hide from them.

I want to return to the time when life made sense and my heart wasn’t broken.

Yet I know I cannot, I am not now who I was then.

In fact I barely recognise the old me at times. It’s not the hair colour or the extra pounds it’s the scars on my heart that make me different.

Life changes you everyday and sometimes the changes are good and sometimes they aren’t but for everyone change is an opportunity to grow.

Becoming a mom was one of the greatest things I will ever achieve but I never expected how having children would change the way I view life.

Having a disabled child was something I would have never foreseen, but getting to be Livvy’s mom created something inside me I am so very proud of.

I guess what I’m trying to say is this…..

Sometimes life will throw you in a direction you didn’t have planned, send you down a pathway you didn’t want to go. It may be hard, it maybe heartbreaking but don’t give up.

Know deep in your heart that every journey comes with  its own unique scenery. Places too see  so breathtaking you would have missed if you had taken the journey you had planned.  Places that will bless you heart, soothe your soul.

You may meet people you would have never have met if circumstances hadn’t of changed.

Worlds apart colliding to produce incredible friendships.

I  know I have met some of the greatest people since I became a parent to a disabled child.  Parents with passion and determination. Parents  with compassion and loyalty. So many have really blessed my life and I am so proud I get to call some of this crazy bunch my friends.

I never imagined as a child I would be a Foster carer but here now I know how incredible my job is. How amazing it is that I get to love on children in need.

Yet  even beyond fostering I would have never foreseen in a million years I would be a university student, working towards a degree that will allow me to help children who have faced neglect and trauma.

AND….

Even here in this little piece of the virtual world,  I never would have considered that this place where I share my heart, my thoughts would bring me so many experiences and create so many connections.

 

No matter how life seems right now, trust in yourselves.

Trust that tomorrow is a new day.

Keep fighting and hold on tight.

We cannot go back to yesterday

and today may be hard

but tomorrow may just be amazing.

Wow, I’ve been blogging for 7 years

blogging for 7 years

I realised yesterday that I have now been blogging for 7 years this month.

What a lot has happened over the last seven years.

I first took to blogging to share what it was like being a mom of four and how raising a severely disabled child affected our lives. I mainly wanted to share how besides the difficulties how wonderful life could be. How Olivia loved life and lived it to the full. How our family motto was never say never. From iceskating to rock climbing we somehow found a way for our girlie to enjoy it all.

Yet only a month after my first post I was to write through the pain of losing my beautiful girl. How the darkness of grief strove to consume me. How in the depths of despair I somehow managed to find hope.

Writing my grief allowed me to feel less alone, from the comments to the messages so many of you walked along side me. Some never realising how often they were the ones that gave me strength to carry on, yes that’s you Kelly. 

I then shared my journey into fostering, my hopes and my fears but also the joy we felt when we had our first placement. How one little boy became part of our family at the first hello. As you know forever wasn’t going to be ours again and whilst our hearts were torn open and raw my words helped me find some semblance of peace.

On this blog especially I have shared the growing of my beautiful girls how they have stumbled through their teenage years into beautiful young adults, well two have my baby still has a way to go and of course a few more posts for me still to write.

Together we have celebrated their joy, cried with them through their sadness. We have laughed at their drama of which there has been plenty and you have sympathised with me through their tantrums.

This blog is part of my records of my daughters lives and how they have changed me in so many beautiful ways. Taught me patience, resilience and the meaning of pure love.

Through this blog I have had many wonderful opportunities from modelling to  reviews. It’s brought me many online friends who have wonderfully tumbled over into my real life.

This blog has also been a call to action, a place where I have fought for awareness for Rett syndrome and for disability rights. I’ve ranted on politics and so much more and of which I promise there will be many more posts to come.

Where I have written about injustice, screamed about discrimination and cried about tragedy.

This blog, these words are truly my heart in print.

Thank you for being my readers, my friends and for visiting me here in my virtual home.

Thank you for the last seven years and lets hope the next seven are full of love and laughter and plenty of words.

 

thank you 7 years

Know your own value.

Dear teenagers,

There is nothing more than I hate to see then you posting photographs on social media asking for likes. Your need to get reassurance from others. The value you place in the number you receive really worries me.

facebook like button

You cannot allow your self worth to be based on a number.

The world of social media is a fickle place someone may not like your photo for reasons that are way beyond you, but the fact is, that is irrelevant.

You need to know your own worth!

To know how truly amazing you are.

Post as many photos as you want but love them yourself.

Know that what you see is a beautiful, handsome incredible individual.

Know that each and every one of you is an amazing unique person.

That your life is worth so much more than a like or twenty, in fact no number can hold your value.

You are priceless.

Go ask your parents for a number that holds your value, they couldn’t give you one as their love for you infinite.

Go ask your best friends to number your friendship, believe me when I say true friendship  is beyond any number.

This world is so quick to put a number on things, from the latest iPhone to designer clothes.

This is not true value.

Your smile, the twinkle in your eyes, the sound of your laughter this is what people will remember.

A new dress will become last seasons fashion, a kind giving heart will be cherished forever.

Hey I’m not saying don’t share that photo of you in your new top, coat, jeans hey we all do, personally a good make up day is always a share for me.

It’s not about not posting, its about why you post.

Post because you feel good, post because you are happy with the way you look, post because you just want to.

Don’t hold on for likes, know you are liked and loved.

The number does not hold your value because it cannot,

Because simply you are priceless. 

Priceless

 

Happy 18th Eden

I cannot believe than my second born daughter is 18 today.

Wow I have another adult.

I am so proud of my girlie.

I love her unique spirit.

I admire her passion and convictions

Happy 18th Eden Rose

18 today

Thank you for my late night chats.

For the endless perfect cups of tea you make.

Thank you for loving and caring for your siblings, your annoying brother especially.

I hope you have a fun day.

May adulthood see you living your dreams.

May you find your way in this crazy world.

Never change who you are, because you are truly amazing.

You dad and I love you so much.

Happy 18th my beautiful girl. xxxx

Happy18thEden

 

 

 

* No up to date pics are per your request xxxx

 

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.

No, I’m not OK… 

I’m tired of the word O.K.

We hand it about so often that it’s become a nothing word.

It has no meaning.

No substance.

Often we use it because we think we should. 

It’s up there with the sentence “I’m fine”.

It’s polite, it’s expected, it’s crap.

You know what , it’s actually ok not to be ok.

To feel upset, angry, hurt. 

You don’t have to be ok. 

“You look tired is everything alright “?

“I’m ok” No you are not you have been up all night with children and are surviving on caffeine, you are tired and exhausted. You are not ok.

I heard you have lost your job, you ok?

“I’m ok” no you are not you are worried about paying bills finding money for the kids new school uniform. You are feeling rejected and confused. 

“I heard what that woman said to you, are you ok?”

“I’m ok” No You are raging she embarrassed you for no reason other than pure rudeness. You are angry and hurt.

Why do we say I’m ok when it’s obvious we aren’t and why do others take it knowing that we are not? 

Is it politeness?

Is it a fear about getting involved?

Or a general don’t really care ? 

Maybe all of the above, I don’t know but I want to banish I’m ok. 

I’m challenging people today to be open and say “you know what today is hard I’m struggling”. Or even “I’m feeling fantastic today is a good day”.

I also want you to challenge others “I’m ok” when it’s obvious they are not. “Can I help” or simply “I’m here for you”. Could seriously make someone feel less alone. 

Because “I’m ok” can destroy you, it can leave you feeling so isolated . It can make you question yourself and drive yourself crazy ” why aren’t I ok” ? “What did I do wrong? Why do I feel this way?

When the truth is our emotions are part of who we are. We feel, we laugh we cry. We know joy and we know sadness. 

Our emotions are our humanity. 

By pretending we are ok we don’t allow ourselves to validate our hearts. 

Let’s leave the polite bullshit behind and be open and honest. 

Let’s share how we really are feeling today. 

Let’s be be vulnerable. 

Let’s be transparent,

Let’s be true.

No, I’m not ok…