Tag Archives: friends

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.

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. 

Freedom at forty 

Wow it’s official today I am forty years old. I know I should be freaking out moaning about the wrinkles but to be perfectly honest I love it. I am celebrating not just the coming of a milestone age but also the freedom in who I am.

  

Finally at forty I am comfortable in my own skin. I know the direction of my life and I’m content and fulfilled. 

I am celebrating more than 40 years on this earth. I am recognising my struggles, my heartbreaks, my relationships and the way they have all shaped me into the person I am today. 

  

I am looking back and seeing the many blessings I have had in my life. Celebrating my beautiful girls, my handsome boys, my wonderful husband.

I am grateful for the friendships that I’ve had, those that have stood the test of time and those that were brief but valuable. 

I can look back and see the life’s lessons I have had to learn. Some I got quickly some which took a little longer, all had value, all had purpose. 

I’m excited about the coming years, excited to embrace all the future has for me. 

I’m moving into my 40’s determined and head first. 

I’ve learned a lot over the last 4 decades and I’m hoping I will take this knowledge forward into new experiences and new memory making moments. I’m hoping that older may mean wiser but hey you know me. Heart first and the head a little later. 

So today Happy birthday to me, thank you to all the family and friends who have walked alongside me. Thank you for the memories and the moments and here’s to many many more. Bring on the next 40. 
  

Simply worth it.

How do you do it?

How do you move forward?

How do you breathe again?

These are only a few of the questions I get asked often regarding grief. When people are lost in the pain, in the missing they need anything to hang on to. I know I did and at times I still do. 

Grief is a unique journey, no two people can face it the same way. Your heart is individual so your pain will be too. 

Some have to scream and rage and allow the anger to be free. Whilst others bury the heartbreak deep, hiding under layer of layer of pretence.

I don’t think there is a right way to grieve it’s about survival and that’s to be found in each of us differently.

At times I have raged against the world, screamed at God and actually hated others for surviving. While other times I have pretended, hid myself under a camouflage of “I’m ok”.

I think one of the worse grief moments I have faced was when I was told by another mum that “she wouldn’t have survived losing her child” as if the fact that I’m still here now is a disrespect to my beautiful girl. That I failed to love her enough. 

This makes me so angry as I would have only failed my beautiful daughter if I had given up. If after watching her face battle after battle to live, I chose not to. 

Grief is unique no one can understand the journey unless they are walking it. It’s like explaining a space walk whilst on the ground. You cannot fathom it, you cannot come close. 

It’s a personal journey that people have to walk on their own but hopefully not alone. 
It has its own timetable for each and everyone of us. Sometimes it’s five steps forward seven back. 

The only advice I would offer is to be kind to yourself and to be true. Don’t hide how it hurts because if you don’t allow it out it will twist up inside of you. Speak to others, share your pain with those who are walking alongside you. 

Remember those you have lost as they were. Laugh at the antics they used to pull, smile at their characters. 

I truly believe they never leave you. So talk to them, let them know what you are up to, how much you miss them. I chat to Livvy daily, remarking on what are sisters are up to or how I may strangle her dad. 

I was struggling to find the words to end this post. How do I explain my relationship with grief? How to convey how I would face this pain a million times over for Olivia. That although it hurts like crazy it is so worth it, because I got to be mom to this beautiful, brave girl. 

  

  

Then I read a post from the beautiful Ann Voskamp and this just simply says it all. 

  

I would pay the price again and again because simply she was worth it. 

The one he needs 

I can’t believe it’s 4:30am and I’m wide awake. Our new little man is teething and nothing besides being pushed in his pushchair seems to be helping. I’m actually not sure whether it’s the movement or the constant reassurance that I’m there that is bringing him comfort. 

To be fair whichever it is as long as he is happy then so am I. 

Yet as I sit here at this crazy hour with nothing else to do but rock the pushchair my mind is off doing that crazy thing again known as thinking.

I’m pondering on how much better we all feel when we know we have someone there for us.

From the moment we are born we are dependent on others. We need our parents to feed us, care for us and keep us safe. As we grow older we find ourselves more independant but can we really ever reach a point in life when we don’t need others?

Now I guess we could talk about hermits and the solitude they prefer but besides the extreme cases I truly believe we all need at least one other person in our lives. 

I know I couldn’t imagine my life with out some of the crazy people that bless it. My family, my friends and even the wider circle including the amazing lady who does my ironing. 

Everyone of these people play a part in my life, in my survival.

So right now as I’m exhausted and just praying this little one would sleep I’m feeling grateful. 

  

Thankful that here in this moment I get to be the person he needs. 

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…