Bravery ???

I have been thinking a lot about how we view bravery, how often the word is used and how sometimes it can be detrimental rather than encouraging. How people mean to encourage yet in truth can do the opposite. 

I can only write from experience but there are times in my life when I have felt the complete opposite to brave yet have found myself surrounded by people telling me I am.

When Livvy’s was diagnoses and I found myself facing life with a child with a complex disability so many said,  “you are so brave” “ I don’t know how you cope” all statements were being said to encourage and celebrate me. Yet I was far from brave, I so wanted to run out of my life, to pick up Livvy and live in a world where disability could not enter. A world where Rett Syndrome was banished. I wasn’t brave, I was surviving the only way I knew how, encouraged by the bravery of my beautiful girl.

“I don’t know how you have gone on” this was a statement that haunted me when Livvy died. I was caught in a whirlwind of emotions. It felt like a two pronged comment, my mind actually spiralled for such a long time due to this statement. I mean how have I gone on? Do I not love my daughter enough that I haven’t just given up on life without her, what kind of mother am I? Did I fail her by not giving up? 

Nearly ten years on and I still have no answer on to the question “how I have gone on?” Seriously it has been through God’s grace and the love I have for her sisters and also the innate knowledge that she expected nothing less of me but to live this life fully and that she would certainly kick my butt if I didn’t. I was not brave, I was surviving. 

I still wish people would think before admiring another’s bravery because those words offered in love often becomes a noose around someone’s neck, pulling tighter holding those who so need to admit to being scared, to being vulnerable no safe place to unload. 

Instead please, ask them how they are doing? 

Tell them its ok to be afraid? 

Tell them them they are doing well but don’t ask them how they have got through it, because truly if you are waiting for me to get through my grief for Olivia you may be waiting a long time. 

Be a safe place for people to unload, cast no judgement about where they are at. Just listen, really listen and if you cannot find the words to support just hug them tight. I know there is no answers to the pain, no reason’s to the why but sometimes its just nice to be held. It’s not ok and it may never will be, but I am not alone. That means more than words. 

“Allowing others the space to be vulnerable may be the bravest thing we can do.”

 

 

 

My rainbow tribe

Last Friday night was one incredible evening along with a wonderful group of people I hosted a Rainbow disco, a fundraising event in aid of raising funds for our local Children’s Development Centre sensory room.

Over the years I have hosted a number of fundraising events, but Friday was so different as I didn’t do it alone.

I first attended the Children’s Development Centre 16 years ago when we started on our journey into investigating what was happening with Livvy. I was welcomed by staff who wanted to support and help me as much as they could. I can honestly say that some of the faces may have changed but the philosophy hasn’t everyone really wants to support you and your child.

I started at Little rainbows  a specialist playgroup for children with complex needs in April 2016, Daniel had been with us for a few months and it was time for us to encourage him to socialize and challenge him to learn and engage with others outside the family. Whilst he struggled with attachment and often switched off, from day one we were all made welcome by the group. The staff are genuinely lovely and the parents, well they are some of the best people I have had the pleasure to meet.

I have written here often on my blog how I struggle with friendship yet here at Little rainbows I have been blessed by some amazing friends. Women and men who have opened their heart and arms to both Daniel, I and even Alan (lol). We have become part of a tribe, the rainbow one.

Daniel will be leaving this group very soon as he starts his school journey and whilst I will miss the lovely staff at rainbows I know I won’t have to miss my friends, little rainbows is what introduced us,but friendship is what holds us.

We are the rainbow tribe.

I want to hug you in real life.

Do you know one of the main things that frustrates me about the internet and social media in general? That some of the people I really would love to do life with often live miles away. People who I have connected with strongly are so far out of reach. How I wish I could turn my virtual hugs into real ones.

I have met some really incredible people via the internet. I get to follow some really inspiration women who have truly blessed my life. Some without knowing have got me through some extremely dark times.

I have had conversations with people that may not have happened in real life. Some finding vulnerability safer on line than in real life. Sharing their hearts filling mine with strength and courage.

I have been challenged by perceptions I would not have seen without the internet. Opinions and reasoning set out allowing me to educate myself without prejudice. Knowledge being as always the greatest power.

I have been inspired by those doing life in the only way they know how. Sharing the good, the bad and the ugly giving me freedom to admit to the reality of my life. The pain, the struggle.  Whilst not always easy  but celebrating the joy and the magic of the moments.

Yes the internet does have a dingy side, a side where bullying and trolling has its slimy place but these cowards can stay hiding behind their keyboards because they don’t scare me. Validation isn’t found in their mean nasty words.

Validation is found in your army, your keyboard warriors who stand beside you each day. Who reach out across the fibre optics across the broadband and reminds you that you have got this.

We have this.

But I do get frustrated at times, how I wish I could arrange one mighty dinner party and invite you all. Get to hear the laughter rather that read the ha ha’s or the lols. To give the hugs instead of virtually receiving them. To just be surrounded by all you weird and wonderful people.

But until then I’m celebrating the gift of the virtual world, the expanse of the internet and all you incredible people that I get to call friends.

My friends.

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