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.

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