My earliest memory 

I remember the chair in the corner, the smell that lingered in the air which I now know was from his cigarette smoke, strong and pungent but I loved it, it was him. Capstan full strength 

His smile and his eyes that sparkled, full of humour and intelligence. His old rocking chair which held me for so many hours. The book that always lay down by his side. 

My earliest memory is of my Grandad, sitting on his armchair having him read me book after book. Teaching me about the world and how wonderful it could be.

I miss him so much, his desire was for me to be the best person I could be. His constant reminder to be good to others, to treat them as you want to be treated. 

I remember him teaching me play cards, I was a card shark at four, taking on the pensioners around the pubs table.

I remember him teaching me to question. His favourite saying “the only stupid question is the one you don’t ask” is what I have passed on to my girls.

He gave me the freedom to dream.

He challenged me to think beyond the normal. 

Encouragement, trust, faith and love, these are my earliest memories.

These are my Grandad. 
  

A beautiful place 

This week I’ve spent my first night in our local Acorn’s children’s hospice, giving the staff chance to get to know my little one whilst I’m on hand and I cannot believe how amazing this place is. 

When Livvy was still with us the word hospice filled me with fear. As far as I was concerned a hospice was where children went to die. 

I was so wrong it’s a place where children live.

In the last 24 hours I have seen so much laughter, 

so much love 

so much life. 

Children with smiles that light up a room, laughter than echoes through the corridors.

It’s a truly wonderful place , full of staff that really care for the children and for who nothing is too much trouble. 

I cannot believe how wrong I was. 

Yes it’s a place that cares for severely disabled children but it’s not the disabilities that are seen here it’s the characters, the spirits. Here in this special place children are simply that children.

It’s a welcome relief for parents knowing they have a place that their children can go and be cared for whilst they get their much needed respite. 

It’s a magical place where children can escape the boring parents have fun and laughter with friends.

Honestly it’s beautiful.

The support that families receive is second to none. I personally know of two families who walked the painful journey of losing their child with Acorns by their side. Of course it doesn’t stop the pain but having someone who understands is priceless. 

I have really enjoyed my stay here and I know little one has too. We are looking forward to more visits and the making of more memories. 

Please take a look at what amazing things Acorns achieve. 
  
The children and families they support

Acorns has helped over 2,470 children and their families since it was established in 1988

Last year2, Acorns supported over 760 children and more than 980 families, including those who are bereaved:

Acorns is currently supporting:

Over 250 children and around 340 families at Acorns in Birmingham3

Over 200 children and over 280 families at Acorns in the Black Country3

Over 190 children and more 250 families at Acorns for the Three Counties3

Read more about how amazing they are here

Please take time today to check out your local children’s hospice and maybe even consider making 2016 the year you decide to fundraise for them. Every penny raised in a penny towards keeping families together and children happy. The services and support is so needed.

For more information on Acorns and how you could support them visit here…

19 years

Wow today My husband and I celebrate 19 years of marriage, I think one or both of us deserve a medal or five ha ha.

What have I learned in the last 19 years?

wedding image

Well, marriage is hard, fighting at times to stay together when walking away would be easier.

Learning to accept that you are both far from perfect. That you both are works in progress.

I’ve had to learn patience to understand when he doesn’t get me. To work harder at communicating. I cannot expect him to know what I’m thinking and feeling when for the most part I never know myself.

I’m sure he will tell you that listening is so important that often underneath my rage is me just asking to be loved. That somethings which seem little to him are often important to me.

I know I’ve had to learn to listen better too, sometimes when he says he doesn’t want to, it maybe because he feels uncomfortable or unsure. I have to learn not to expect him to have the answers all the time.

Time apart is good, it doesn’t mean you love each other less it’s about respecting the fact that you have different ideas of fun. Whilst a library may be my favourite place Alan so prefers his RC clubs or getting his hands dirty in his shed.

The kids are crafty they won’t think twice about playing mom and dad off against each other. So communicate as parents. “Dad said it was ok” has been my girls favourite since they became teens. Now dad says “I will check with mom” and vice and versa.

Love needs work, it’s so easy to get caught up in being parents, in work, that we forget to work on being husband and wife, on being lovers.  Date nights are great but even an hour chatting  together is lovely.

I still cannot believe it’s been 19 years since I said I will. Some days I want to strangle him, yet sometimes when he smiles at me or reaches for my hand I get that little flip in my stomach that takes me back to that 19 year old girl who fell head over heals.

I can honestly say it hasn’t been an easy 19 years. We have faced the worst heartbreak that can happen to parents, the loss of a child. Yet somehow instead of pulling apart we pulled together. Grief can destroy the strongest marriages but somehow we managed to grieve together. I had to learn that sometimes he cannot find the words to share his pain. He has had to understand that sometimes I have too many words.

I guess if truth be told I was lucky I fell in love with a man who wasn’t scared of fighting for what he wants. All the times I’ve tried to pull away he has just stayed strong. He understood my fear and just overrides it with love.

My husband has taught me that love can be true. That sometimes what people say is what they mean, and that promises can be kept.

I cannot believe that I have now nearly been married for half of my life. It seems crazy. In fact we have now been together over half of my whole lifetime. Most of my memories now have him at the core.

Yet still I am so excited about the future, the next 19 years.

Is it sad that I’m excited to grow old with this man.

We have so many plans, watching our girls grow up, maybe a marriage or two. Yet the greatest gift we have is being able to walk this life together.

Making new memories and cherishing on our old ones.

Happy Anniversary Alan, thank you for the last 19 years and here’s to many more.

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Perfect sense

I was restless last night as I sat and tried to catch up with my weekly television programmes. I just couldn’t relax and I didn’t know why. 

I checked the oven, the doors and my diary but I just couldn’t work out what I was missing.

Then it hit me. 

I was listening out for Livvy, somehow I had stepped back in time to seven years ago. The Friday night ritual of Alan going out for the evening and me staying in caring for Livvy.

My mind was listening out for her noises. Her gentle snores or crazy giggles.

I was even waiting to eat with my sister and have one our much missed Friday night chats.

For those few moments I was in my before time. 

Before my heart broke.

Still I wasn’t allowed to stay for long.

Only seconds later the pain overwhelmed me. 

Like shadows slowly consuming the light.

My heart was beating so swiftly, my brain pounding against my skull.

Raw open wounds.

I don’t know why our brains do this to us? 

Flashbacks to moments we cannot hold on to.

Memories so real you can almost touch them.

I cried last night, gut wrenching sobs of missing.

Time really doesn’t ease your pain. 

I was so angry, the frustration of being able to do nothing dominated my mind.

Why,

Why,

Why?

Finally I could cry no more, my soul was empty, my tears exhausted.

I know I cannot go back, 

so many ways and so much time. 

But for that brief moment then I wasn’t broken.

For those few minutes life made sense.

Perfect sense 

First Aid Waves

The last two days have knocked the crap out of me. What I thought was just going to be a normal run of the mill First Aid course has actually be a major trigger for my grief.

Sitting there in the conference room when asked if anyone has ever used CPR my heart started to pound within my chest. 

My mind left the conference room right then, I was there back in the moment, the moment I have tried so often to forget. 

I breathe deep, drink a little water and try to bring myself back to the here and now.

Seizures “anyone saw a child seizure”, what ?? 

Yes too many.

Choking, Yes

Severe vomiting, Yes

Sometimes I don’t realise how much in life I have seen. Raising a disabled child opens you up to a world of medical practices, symptoms, treatments that many others will never face. 

Losing a child tragically, well let’s not go there. 

Too much 

and it just blooming hurts.

I’ve had to bury my head the last couple of days. 

Allowing the waves of grief to flow over me. 

Trying to change the horrid memories for good ones.

Burying them I guess.

Yet they won’t ever leave me.   

But life has to go on, 

I have to get my first aid certificate and will need to get it again in three years.

This is a requirement of the job I love.

So I ride the waves, 

Holding on tight to the good memories and learning to swim harder through the bad.

  

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.