Capture those moments

My friend today shared a photo of Livvy and I today on her Facebook, its so lovely to see but it does really hit home of one of the greatest mistakes I made in Livvy’s life.

Not being in photographs with her.

You see I think I have three or maybe four photos of Livvy and I. My fear of being photographed actually has robbed me of precious memories of my darling girl.

How often do you find yourself saying “ I will take the photo” “Oh not with me, I’ve not done my hair, makeup.” I have an endless list of escape sentences that I now regret so much.

You see my daughters didn’t care how I looked they just wanted memories that I was visible in. I wouldn’t have cared how I looked to have images of me holding my precious girl, moments I could close my eyes and recapture in my mind.

Yet I cannot go back no matter how often I wish I could, but I can make changes and slowly I have been, pushing myself in front of the camera instead of behind.

Adopting Daniel and the level of his complexity has hit home again the fact that we are not promised forever and so I have made sure we all have precious memories to hold on too. So this is why for Mother’s Day this year I treated myself to a Mother and child photoshoot and its been one of the most amazing things I have done and honestly  I will cherish the images forever.

Choosing a photographer you trust is paramount especially if you are like me and are petrified of having your photo took. I went with Baby tree photography .

Liza is so amazing, we came across her when she photographed a friends christening and she is so lovely, she captured Daniel’s dedication in September and the characters of the guests were just so visible in her images and Daniel well is just completely gorgeous anyway.

I attended her studio a little nervous but within minutes I was relaxed and actually excited. I did wonder how Daniel would react to the day as he gets sensory overload and often just switches off in new environment but he was a complete star and honestly I think the images speak for themselves. I cannot thank Liza enough I look at the photos and my heart just beats with joy. The moment she captured will be a moment I get to forever cherish “A Mama and her son.”.

Honestly if I can challenge you all to do something this year it would be to capture those moments, don’t be like me wishing you had.

 

Happy 35th Birthday Dear ZOO..

Walking back  again through the toddler years with my new little one has filled me with so many déjà vu moments.

Holding my little man in my arms I am transported back 15 years to when my girls were little enough see on my lap.

So many things have changed, yet still many are the same.

One thing that i’m really loving is the opportunity to read again some of my favourite children’s books. Books that my girls left behind as they grew older.

One extra special blessing is that now my big girls are enjoying rereading their favourites to their little brother.

 

One of those old favourites being enjoyed is the Rod Campbell lift the flap book Dear Zoo.

 

Can you believe that this wonderful book was first published in 1982, that makes it 35 years old, WOW.

To celebrate this special birthday Macmillan Children’s books have released this special edition with a beautiful shiny gold jacket and specially designed gift slipcase. The celebrations don’t just stop here though, Macmillan Children’s books have an exciting year planned to celebrate 35 years of Dear Zoo, including a live on stage version, an Easter treat at ZSL London Zoo. Find out more at http://www.dearzooandfriends.com

I am surprised at how long this book has been out but not by its success, my girls loved lifting the flaps and arguing over what they considered to be the best pet. My son gets rather cross when we send the lion back I think he would prefer to hold on to the lion, my eldest always wanted to keep the giraffe.

Happy Birthday Dear Zoo, thank you for 35 years of story time and here’s to many more years of enjoyment.

 

 

 

 

 

 

  • I was gifted a copy of this book for this post, but my love for it is completely genuine and truthful.

So very thankful 

Sitting here in a hospital bay with a poorly little man is sending me on a journey of memories. Endless nights of observations, temperature checks and the general hustle and bustle of a hospital ward. I am so thankful for the wonderful NHS and all it’s amazing kind nurses and doctors and ward assistants and cleaners, yet I miss my Livvy. 

I remember as if it was yesterday how she took over the ward, how she charmed doctors with her cheeky smile and how her laughter infected the nurses. The handsome Physio who melted her little heart. There is nothing more special that watching your daughter play coy with the man that makes her work hard to stretch and bend. Even having chest Physio was ok as long as it was with the cute one. I’m smiling to myself right now because I remember when the handsome Physio had a trainee with him a lovely lady he told her how to work on Livvy yet he never expected Livvy to be a stubborn, obstinate little minx she would have none of it, she turned over in her bed and refused to even look at this poor trainee. Five minutes later the handsome Physio came to check up on his trainee and well wow there were the smiles and arms wide open ready to work again, what a madam

I feel her close whilst I’m here, I don’t know if is just the memories or the fact that it’s quiet and I’m allowing my mind to wander. But I feel her. I can sense her laughter, her joy for life. As I sit here and watch her new brother sleep I know she watching over him. 

This hospital had been the place of many awful memories but it has also blessed me with some wonderful ones and some wonderful ward mates that became dear friends. How I wish A was here with me now, how I long to spend the night talking and giggling until we got told off by the nurses. We put the world to right over those camp beds. It’s New Years tomorrow how I wish Ryan and Livvy were causing us trouble and drinking my wine. Love you A and your beautiful family. 

It’s a weird night and it could well be a long one. But I am so thankful for the wonderful NHS, how now whilst I may be wallowing in my memories they are caring for my little man. Working hard to get him well and home. I am watching him sweet talk the nurses with his beautiful smile. Pulling his tubes and giggling.
We are moving forward making memories that are different from how I planned but that’s life I guess 

Yet whilst my heart will always have a missing piece I am so thankful for all I have in my life. 

So very thankful. 

Survival of the fittest 

Ok the holidays are coming to end and I’m ready to scream hurrah, I honestly don’t know what happens to me over the summer. It truly feels like I’m at a survival camp just trying my hardest to get through each day.

Don’t get me wrong I love my children but keeping them occupied for seven weeks is insane. It’s just to long, way to expensive and certainly not good for my sanity. 

The issue I have as a special needs parent is that my children love and need routines the slightest change can bring down an avalanche of anxiety and behaviours. The thing is I don’t want to be doing the same things everyday.

Take my eldest son for example he would happily wake up every morning have a shower, brush his teeth, eat breakfast then sit and watch the chart show countdown. He would sit there from 20 to number 1 over and over again. Only getting annoyed when a song he doesn’t like comes on. Don’t get me wrong I love music but my goodness how many bieber songs are in the top 20, it’s crazy. Also how dare there be adverts I mean what.. 

Routines and more routines. 

I don’t actually mind some routines especially the one where the kids wake up and the school bus arrives and I wave bye bye.

No all joking aside summer has been hard, yes having a new little one has left me craving for sleep and dreaming of a hot cup of tea but in all honesty it’s been rather awesome. 

We have had some lovely time away, Mablethorpe and those beautiful seals. Special kids in the UK camp and getting to spend time with friends old and new. 

Memories made and laughter created but hands up right now this mom is so ready for the start of school. 


I am actually dreaming of my alarm clock wake up call and school uniforms. I think my boy feels the same as he keeps bringing me his school bag and his answer to my ” are you fed up of mommy ” question was met with a firm yes. I would be offended but I completely understand him. I mean I’m actually fed up of myself. “No more music” “but that down” “do not lick the dog” I’m so tired of my own voice. 

So hallelujah the end is in sight the days are in single numbers and the uniform is ready to be stamped. Life is looking brighter by the day. 

And for those who think I’ve disappeared this summer I do apologise. 

It has genuinely been a case of survival of the fittest and in my family the kids won hands down. 

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.

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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.

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. 

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?

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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