Sorry I couldn’t rise.

I’m not sure where my head has been for the last few weeks, I’ve completely felt a detachment from the world. On the outside looking in. I’ve been falling into an abyss of what if’s, what should of been’s and to be honest a hornet’s nest of why not’s.

Social media has been full of graduations and moving on photos and I’ve just felt angry and raw.

Grief isn’t pretty, it doesn’t come tied in a pretty bow. A ornate basket with a jar of missing tears and bottle of memories.

No grief is a raging ocean, dark, bottomless and threatening to pull you under at the least expected moment and I’ve been drowning.

I feel such a bitch but I’ve scrolled past photos without commenting, without celebrating the achievement because I was angry, I was resentful because Livvy didn’t get to celebrate it.

I couldn’t drag myself up out of the pain to celebrate others when there will be no prom for my girl, no sparkling dress, no fancy shoes.

There will be no graduation for my daughter, she didn’t even get to complete primary school let alone head out of education into the great unknown.

I hate that I’m angry, I’m appalled at myself for being jealous but my goodness missing her hurts In a way I just cannot describe.

There is always going to be moments that are raw, moments that should of been and I’m always going to try and be ok about them but I’m never actually going to be ok with them.

There will always be a Livvy shaped piece in my heart. Always another tear to fall in missing. A breath to be lost in grief.

Rett Syndrome took so much from us, it took Livvy from us and right now I’m tumbling into grief, anger and complete sorrow.

I miss my girl, I miss her so damn much.

So to those who I haven’t celebrated this last few weeks I’m sorry. My heart does sing for your moments, I’m so very proud of all of you and I’m so sorry. Sorry that I couldn’t rise from the depths of missing this time, sorry I didn’t have the strength to pretend.

I just miss my beautiful girl so,so very much.

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.