Category Archives: Uncategorised

Sixth form style 

So my daughter has just finished her GCSE’s and i was expecting her to relax and have a few weeks not thinking about school, tests etc etc. Erm no she is now driving me mad talking about her style for sixth form. You see she finally gets to escape the uniform she has hated for the last five years. The lovely burgundy blazer that can never be removed even in the hotest weather and the white blouses that never ever fit right.
Yet whilst she hated the uniform it was a comforting place to hide within. Everyone having to wear the same does stop the judgement, well a certain amount of it as anyone who has a child in senior will concur that teenagers will find any reason to argue and tease.

So sixth form is a big deal for my baby girl. Its a time for people to see her beyond the uniform. Its exciting and scary at the same time. She has to find her own style in the confines of the prescribed restrictions.

She is excited but nervous.

Last nights conversation was regarding her bag. For many years due to the number of sporting activities she has done she has always had to have a backpack of some sort, one large enough for sport’s gear, school books and drinks etc. So returning back to school with no sports obligations she can now  look at all styles. She is now wondering what would be best. This article by Mahi has been helpful “Tote or Backpack for college?” 

Whatever she chooses Im just hoping 6th form will be the where my girl can find her place. The place where she realises how beautiful and amazing she is whatever she is wearing and she learns that her style is whatever she wants it to be.

 

Happy 21st to my firstborn

My baby is 21 today, how did that happen? Obviously i’m using the term baby figuratively but honestly how can it be twenty one years since i gave birth to my first born.  My beautiful entrance into motherhood came with lungs to challenge the strongest of divers, she came kicking and screaming and has lived her life at full speed ever since.

My blond haired mommy’s shadow has turned into an amazing young woman. I’m so proud of this girlie, she has just completed her degree and has already accepted a place on a masters. Her dissertation was so incredible and whilst her degree may have placed a lot of stress on her liver I love her thirst for knowledge.

This girl does drives me insane at times, she returned home this weekend for a few hours before flying off for a few weeks travelling around Europe, in those few hours she needed to wash and dry her clothes, pack her bag, complete her graduation paperwork and accept her place on the Masters, oh then of she mentions she hadn’t organised travel insurance. I promise I nearly strangled her. How she manages to achieve anything at times surprises me but i do love her carefree ways, well unless you count the other night.

Watching her grow up has been a gift I always remember her auditioning for her primary schools talent show. The shock on her teachers face when this powerful voice came from this little quiet one. She has been surprising people ever since, never underestimate the Kennedy. She has shocked many with her strength and determination and her sheer audacity to achieve her goals.

Right now my baby girl is in Vienna. probably drinking way too much but Im sure she is packing everything into her days.It’s weird not being there to celebrate her special day with her, not getting my birthday cuddle but I’m so excited for her to be off doing what she loves, travelling the world immersing herself into the history and culture of the places she visits.

Have an amazing 21st Kennedy, never stop surprising the world. Never stop being carefree and loving and living life to the full.

Love you to the moon stars and back again, my sweet frustrating first born Kennedy Mary xxxx

Expect 

Today has been a strange day i have placed my heart in places of vulnerability, places of pain, in hope of peace.

The realisation that to truly heal one has to allow oneself to feel.

To wait in expectation of the agony to know the rewards of joy.

Grief is an state of expectation, the cost of love or the reward of love.

The irony of that statement, pain the reward of  love.

The honour of love.

How often i find myself lost in the darkness of grief. 

I struggle to remember why it has to hurt so much?

Why my soul cries out?

Then a memory rises to the edge, allowing me the freedom of remembrance, 

the joy of loving

 and 

the trust of forever. 

Joining in with five minute fridayWrite for five minutes on the word of the week. This is meant to be a free write, which means: no editing, no over-thinking, no worrying about perfect grammar or punctuation.

Giving up blogging. 

I was ready to give up blogging. Preparing myself to put down the keyboard and walk away. I was tired of fighting to be heard in an ever increasing mass of voices. Exhausted by the endless distractions of reviews and  giveaways. 
It began to feel like a collective gaggle of the same old same old.

It didn’t feel like it used to. The pressure of statistics and keywords and SEO was drowning out my voice. It was as if my authenticity didn’t have a place.

I’m sure I wasn’t alone in this as i had slowly seen writers disappear from the ether. Returning to the privacy of their journals and the silence of their mind.

I was so close to joining them, so close to deciding enough was enough and allowing my blog to come to end. I couldn’t seem to grasp reasons for continuing or being able to validate the time needed.

I casually mentioned this decision to my husband who for some reason has never understood how the blogging world worked or to be honest never worried about the how. I told him I was tired of chasing opportunities, receiving emails that were insulting to my time, my worth. He was rather surprised at my thoughts and told me he would miss my words. I thought the sentiment was sweet but was it enough to continue when about five minutes later he turned to me and asked. ” why did you start blogging in the beginning”.

Why in 2008 did I feel the urge to share my words?

I remembered my first blog posts, I never wrote them worried about readers or views. I never had concerned myself with the number of shares the post recieved or the keywords it held. In fact at that time i didn’t even know of SEO (not much progress on that anyhow). I wrote to share my life, to share the struggles and the joy of raising a family. To be transparent in the life of a mom of a child with disabilities, the fear, the heartbreak but mostly the laughter. The achieving of moments that we will cherish forever. The can do’s  and the never say never’s.

My blog is a wonderful journal of memories. A incredible source of my heart. Yet how and why have Iet myself become so jaded and lost?

Comparison.

Somehow along the way I had started judging myself against others. Distracting myself from my truth with judgement and envy.

Why do my photographs never look that good?

Why couldn’t i explain that better?

Why didnt I get invited to that event, asked to apply for that opportunity?

Why and how became “you aren’t good enough”,your words suck and everyone is happier, prettier and generally better than you.

Every word I was writing was filled with fear of judgement. Every photograph waiting to be mocked.

I realised that comparison was stealing my joy.

I had a decision to make, I could stop right here, right now or I could reclaim my joy.

This new home is my declaration of my joy.

This new blog is my celebration of my renewed love of words.

This blog is mine, it’s a place where I will capture my moments. 

Where I will celebrate the adoption of my beautiful new son, where I can journal his wonderful life and our journey together.

My blog is simply that,my blog.

It’s my heart in words.

How can I compare it with others when no journey is ever the same?

The blogging world is changing at a rapid speed and that’s ok, life is and always will be ever evolving.

I will seek validation only in the happiness of my family.

My blog

My truth

My heart.

My first baby show in 20 years

I attended my first baby show in over twenty years last weekend. To say I was a little excited is an understatement. I had won the tickets via a Facebook competition and once we got the ok from the hospital It was all go.

Saturday morning little man was  happy and well so we headed to the NEC. I wasn’t sure what to expect as my turtle is 3 in a couple of months. But due to his disabilities he is still in baby stages for many development milestones.

I had my mental list of things I wanted to check out and I have to say I managed to tick them all and some.

The baby show was well set out, plenty of room for pushchairs, wheelchairs and beautiful pregnant women.

The day was pretty awesome and one I so needed. I had a lot of fun and really enjoyed chatting to a lot of the store owners. I also loved spoiling my boy. I mean after all he had been through last week he so deserved a treat or two.

Our first purchase of the day was from the lovely Books and Pieces. The ladies were so lovely, after telling them that little man was blind they suggested some touch and feel books that he will love. The black and white books were suggested by our vision impairment teacher to encourage the little vision he has.

Our next stop was a store that caught my eye was Gigglemind  a company who have designed a car vision mat to inspire babies on journeys. Its a brilliant concept and one that caught my eye not for car journeys but because the colours are what we have been told to use it encourage turtles vision. I was so impressed by this product and as a special needs mom this was amazing as I had been looking at similar mats like this in special needs catalogues and the price difference is rather dramatic. Turtle is already enjoying his mat time. 

Due to his diabetes insipidus Turtle often has very dry skin and i have been searching for a skincare range that was gentle on his skin. Someone had recommended to me the brand Child’s farm so I was rather chuffed to see them at the show. They use natural free-from ingredients and essential oils to produce mild, kind and delicious smelling toiletries. Two bath’s in I am so happy with them. They are so light yet leave his skin feeling lovely.

A week ago Turtle had a Video Fluoroscopic  to check his swallow and after passing with flying colours we were given the permission to move forward with him and solids. He still swallows like a baby so it was important that we started with puree’s etc. For me knowing that he can only have a small amount of food I wanted to make sure that he had a quality product. I was really impressed by the Babease range. Created by a chef using the best quality locally sourced organic ingredients.  Turtle is impressed, and emptied his bowl rather swiftly.

My main reason for attending the baby show was to find myself a new changing bag. Turtle does not travel light and I really need a larger bag to accommodate his changing needs and the extras medical bits that we are now having to carry. After a wander around the show we settled on a PacaPod Mirano Black Changing Bag from Mummy and little me.  Its a lovely bag and seems to be working well. Stylish and functional.

I think my favourite buy of the day was a blanket from Babybird Blankets. Turtle cannot regulate his temperature so we have to have a blanket on hand at all times. The blanket is so beautiful.

I admit it felt a little strange being back at a Baby show, I had only been to one previously and that was when Kennedy was a few week old, she is 21 next month eek.

Besides the strangeness I had a really amazing time. I cannot wait for my next one.

 

 

I can breathe 

Whoosh

The air is returning to my lungs. 

I can breathe again. 

He is in recovery 

The operation went well. 

For three hours we had trusted 

Trusted in the skill of the surgeons the anaesthetist.

Trusted that they would look after my son.

Keep him safe

Keep him well. 

It’s not easy 

The internal battle of the mind.

Does he really need it?

Is it worth the risk?

Wanting your child to live a happy fulfilled life is all a parent wants. 

Your hopes and dreams are tied up in their happiness. 

I don’t dream of success or wealth for my children.

Just a lifetime of happiness and laughter. 

We will learn a new skill today.

A new way to keep him well.

Our bag of skills is getting bigger.

But my boy is good.

My boy is happy. 

I can breathe 

I nearly lied to my daughter

I nearly did it again last night,

I caught the words as they were just about to tumble out of my mouth.

I almost lied to my daughter

Lied to her again.

“ It will be alright’

“it will be ok” 

“ You have got this”.

Why do I do this?

Why do I make statements that I know not to be true?

You see life isn’t easy.

It can be cruel and harsh.

It hurts and causes us pain

and sometimes there is nothing we do can change that.

Right now for my girl its the pressure of GCSE’s that suck, but my telling her that all will be ok does not actually make any difference to the outcome.

Yes GCSE suck but me promising her a rosy ending isn’t true.

Of course her results are not the end of the world but the truth is that they do make a difference to her future.

She has to work her way through the endless hours of revision and hopefully she will get the results at the end of it.

 

There is no gain without pain. 

Benjamin Franklin

 

We  all have to make choices  on how to live life.

How to walk the journey.

Sometimes we will make what we believe are the easy choices but I believe that those are only the shortsighted ones.

For my daughter throwing in the towel in on her GCSE’s seems attractive, she gets to stop stressing and stop putting the hard work in, but her future wont be as easy without those grades.

Yet these GCSE’s are only the beginning of a life of challenges and obstacles and decisions she will have to make. She is going to have to face many choices in life, moments that will hurt her heart and leave her scarred. By lying to her i am not going to make these moments easier I will just make our relationship untrue. 

“I’m sorry dear girl that your head feels like it might explode, I’m sorry that teachers cannot see how hard you are working but I’m also sorry that I cannot change these situations for you. 

All i can promise you is that I do have your back.

I will walk along side you with no false hopes or fairytales falsehoods but with truth, love and faith,

faith in you. 

Livvy’s Ball – Her legacy is love.

 

 

Friday night was incredible, amazing and inspirational all in one.

I was so blessed to be surrounded and supported by some wonderful people.

Livvy’s Ball was an fantastic success and over the next few days I will be sharing so much more about it all.

But lets start with the most important thing, we raised an incredible £1400 to be split between Livvy’s Smile  and Reverse Rett Uk 

I cannot tell you how proud I am of this achievement.

I have been asked to share my speech from the evening, so i thought this would be the best place to start my posts all about the ball.

 

I would first like to welcome you all this evening to Livvy’s Ball. Alan and I cannot express in words our gratitude for each and every one of you for being here supporting this evening.

Those of you here who knew Livvy I’m sure would each have a memory or two to share about her. She certainly left an imprint on those who met her. To those who didn’t get to meet Livvy, I can assure you that the reason you are here has some basis in who she was.

You see Livvy changed who I was, who we all were

If you are here tonight supporting us as work colleagues I can promise you that we now foster because of what Livvy taught us,

my friends whose children have disabilities I can honestly say I wouldn’t be part of your world without Livvy.

Rett syndrome research warriors again because of Livvy.

Deciding how to mark Livvy’s 18th birthday was a easy decision. We knew we had to celebrate and celebrate in style. It had to be something that would represent all that she stood for and that was simply to live life fully.

You see although we only had Olivia for nine and a half years she packed into those years so much. She taught us her family how to love unconditionally, how to make sure that everyone knew how special their were to you.

No hold backs, means no regrets. Knowing that we didn’t have forever gave us the opportunity to stop wasting time and to love fiercely.

To make the moments matter.

 Livvy didn’t hold back anything, well unless you count sharing chocolate biscuits. She loved with all that she had, she laughed as often as possible and she lived wholeheartedly.

So it was a given that her 18th had to be special, had to honour her.

What better way than to have a evening of fun and friendship.

Still it had to be more than just a party we had to to celebrate with a purpose. So that’s why we decided that whilst we were having fun we would also fundraise.

I am as I said so very grateful for each and everyone of you who have bought your ticket to come celebrate my beautiful girlie with me tonight. But I’m going to ask a little more of you. We have been lucky enough to be supported with amazing raffle prices for tonight and I hope that you will buy as many as you can to support our chosen causes for this evening.

So who am I asking you support this evening.

First off we have Livvy’s Smile the charity endeavour that we started in Livvy’s memory. An idea of what we would thought would be one event which has now been running for eight years.

Livvy’s Smile is a memory maker.

When we lost Livvy we were so very grateful for the memories that we had to share. As I said Livvy loved life, from camping trips to ice skating days, from canoeing to barge boat trips we have some incredible moments to hold dear in our hearts. Yet we know that at times creating those moments wasn’t that easy. Raising a child with severe disability isn’t easy, throughout Livvy’s lifetime I personally experienced a lot of isolation and fear. It’s not a case of let’s go here or let’s do that everything took time and planning. With Livvy’s smile we wanted to create memory making days for children with disabilities but also for their families. Host events where siblings could play alongside their disabled sister or brother. Inclusion and fun. We wanted to host events where families could meet others in the same or similar circumstances, building friendships and lifelines of support.

Livvy’s Smile was started to make memories to create moments that children and families would cherish for a lifetime. I’m proud to say we have done that and although some children are no longer with us their families have memories to hold on to. This is something I am incredibly proud of and with your support is something we can continue doing. Making the moments matter.

Our second charity of the evening is Reverse Rett Uk. As you all may know Rett Syndrome is what Olivia had and what we lost her too. REtt syndrome is a devastating condition. It you were to imagine, Parkinson’s, cerebral palsy, epilepsy, autism all rolled into one you may get a little understanding of what Rett Syndrome is. I remember only to clearly Olivia being diagnosed with Rett syndrome, we actually had a late diagnosis as she was four years old. I had been searching the Internet googling her symptoms and had come across Rett Syndrome and simply decided at that point  that she couldn’t have that one. I didn’t want that one. Because back then the future for children with Rett syndrome seemed bleak, there was at that time no real hope. I’m so pleased to say that this isn’t the case anymore thanks to the wonderful work of Reverse Rett syndrome UK and other charities like this the future is brighter. The research is showing real promise that one day there will be a cure for this devastating condition. But of course research isn’t cheap but I promise you it is priceless.

I started a campaign a few years back to highlight Rett syndrome awareness called nomoremeptyarms and this is why I am asking you to support Reverse Rett tonight. My arms will never hold Livvy again but I am determined to do all that I can to make sure that the other parents with children with Rett syndrome their arms stay full.

Reverse Rett UK is simply hope in action.

I won’t go on for much longer now, we do have a wonderful evening planned for you and I wish you all an amazing time.

But I do want to say one thing more.

Life is not measured by the length you live but by the moments your create and the hearts that you touch. Livvy may have only lived for nine years,but the impact she left on others still lives on today in my heart, her daddy’s heart and her sisters hearts and in the hearts of all that knew her.

Her legacy was and always will be love.

I want to thank you all for being here to celebrate that legacy tonight, to celebrate my beautiful girl.

Happy 18th Livvy

Thank you all,

How I do life? 

I sometimes wonder about how I do life and if I’ve got it all completely wrong.

You see life hurts like crazy at times,

It soars to great heights and then to some truly awful lows.

Its scary and it’s so raw that I wonder why I do this to myself?

You see it would be so much easier if I didn’t open my heart so easily, if I shut down my emotions. If I stopped walking forward heart first and allowed my head to take the lead now and again.

I love to love but loving can leave you sore and damaged and burned. Yet for some crazy reason even when scorched I still love forward.

Am I my own worst enemy?

I know this sounds crazy but for a moment over the Easter weekend I wanted to be a post office attendant.

I was there in my local town post office picking up a parcel and as I normally do I got chatting to the people around me and the lady serving me. When I asked her if she had plans for the Easter holidays she replied with a massive smile “no”. She was planning on finishing work going home and doing nothing just relaxing for a few days. She was so excited and looking forward to having nothing to do and right then and there I wanted to be her. Now let’s be realistic here I don’t know this lady. She may have a stack of issues to deal with and life may be far from perfect but in that moment I wanted to be her. I wanted to do nothing.

I wanted to do nothing 

Think nothing 

Worry about nothing 

I wanted to have a job which I could leave at the office and come home and do nothing.
As I thanked the post office lady for my parcel I smiled and walked away actually thinking jammy cow. I was actually peeved at the woman for not having to do anything.

I was jealous at her and frustrated with myself.

Why don’t I make life easier for myself?

How do I get myself here?

Why do I may the choices I do?

As I walked away from that post office I found myself laughing at myself, giggling at my reaction.

I reminded myself that yes whilst I may be completly exhausted at times, I am never unfulfilled.

That whilst often my brain feels like it may explode, one smile from my children can make it all seem worthwhile.

Thats whilst I honestly have no idea how I got where I am, it feels right.

I do hope that post office lady had a weekend of rest and relaxation and I hope it was exactly what she needed, mine was very different. It was hard, tiring and at times to messy but it was mine and it that it was perfection for me. 

I may not choose the easy pathway in life but i know I have chosen the right one for me.

Yes I may crave a day of nothing now and again but I will never swap my life for another.

Because somehow my life became perfect for me. 

Perfection in Wales 

Holidays scare me, I’m in a place where things are out of my control. I read reviews over and over again making sure im not wasting the money we pay. I also have to trust that the place in which we are staying is clean. It’s not that I’m a clean freak but having a complex child requires a certain level of hygiene. 

It’s partly this and a few other reasons that we decided to invest in a tourer caravan. Firstly we could go where we wish but also I could have some control over my environment (control freak much). 
Anyhow these last few days we have been  on our maiden voyage testing out our caravan. We didn’t want to travel too far from home for our first trip whilst we found our feet, so a trip to North Wales was planned. 

We stayed on a lovely site called Plas Farm and when I say lovely I really mean it. From the moment we pulled on to the site I was relaxed. It was obvious that they hold themselves to a high standard because even in the middle of the Welsh countryside the grounds were spotless. We were running late as per normal for us and the reception had closed but thankfully we had already received a call from the site and we knew which pitch we had been allocated and where to find the key for the disability facilities. As we pulled up to our pitch we couldn’t believe how beautiful it all was, we had spectacular views in all directions. The pitch was well set out and it was easy for us to set up.

 My girls have an obsession with toilets ever since they were little they have had to check out the loo’s and like myself they have high standards when it comes to peeing. There was no disappointment, the toilet block was spotless and I don’t mean just clean I mean spotless. The showers were immaculate and the set up wonderful. They even had free hairdryers which was a welcome addition. 

Honestly our stay at Plas Farm was amazing. Nothing seems to be too much for the owners. They were so helpful in all ways.

We had a wonderful four nights enjoying the peace and quiet. The boys slept so well, I even managed 8 hours one night. 

We had an amazing time exploring North Wales we visited Rhyl a place I had loved as a child. It’s changed I think or maybe I have. Some memories shouldn’t be revisited or maybe some are a little too tied up in pain. 

A trip to Llandudno was a welcome one, I so love this town, it was such fun to introduce my boys to the pier. It was too windy for the cable cars so obviously we must return in the summer. 

On our last day we took a drive to visit The Glassblobbery a chance leaflet pick up in Tesco let to a Facebook obsession and real need to visit and we certainly wasn’t disappointed. It was incredible watching Dave make a giraffe from a stick of glass. Watching it come to life in front of you. Even my big boy enjoyed it and that says a lot. I fell in love with many items and was so lucky that Alan treated me to a beautiful drangonfly. I am now planning a new order. The Glassblobbery is certainly worth a visit. 

All in all for our maiden trip it has certainly wetted our appeitite for more. I cannot wait for our next adventure.