“You are doing it wrong”.

I’m getting tired of unwanted opinions, you know the ones. I’m chatting on social media, which a quick side note, does not give people free range regardless what some trolls believe, you are responsible for your words in real life or online.So when someone feels the need to tell me I’m wrong. When someone feels the need to tell me I’m grieving all wrong. Erm what the hell?

I was chatting to someone about the realisation I’ve had about why I cannot or will not fill all this extra time I have in my life since Daniels death and how recently with help I have finally realised that it is because the only thing I really want to fill my time with is my beautiful boy. My reluctance to go back to familiar places etc is because my boy won’t be with me. It wasn’t and isn’t guilt about moving forward ( I know Daniel would want me to) but simply me just wanting my boy back and refusing consciously or unconsciously to accept that he won’t be coming back. Maybe it’s the anger wave or the refusing of the acceptance one but no, I’m sorry I don’t want to go shopping or for a walk because I want to be sitting down cuddling my beautiful son watching the Yorkshire vet. Right now I cannot even watch the programs we used to share because I’m broken hearted and damn right angry that he isn’t there.

The thing is this realisation was something I needed and whilst what I was doing wasn’t wrong (in grief nothing is wrong) it’s not healthy for myself and for those that love me. Also the reality is Daniel cannot be with me right now so how long would I hold on to this dangerous hope and what and how will my mind cope as time goes on. I have to find a way to live life with Daniel in my heart and mind just not here physically.

Anyway the opinion I got was “I’m doing it all wrong” and the person helping me realise this was wrong too. Now I would never tell anyone how to grieve but when someone firstly wasn’t asked into the conversation but secondly who has not walked my journey has an opinion that makes me out to be wrong, well that does make my blood boil.

Now if I was saying “let’s go out and party and forget all about Daniel because he is dead and he doesn’t matter anymore” I could understand a little but what I was saying is that I need to realise for my own mental health that no matter how many invitations I turn down, or places I don’t visit or even programmes I won’t watch I cannot bring Daniel back. This really sucks and it hurts like hell. But in this crazy waiting period I’m aware of damaging relationship’s and hurting the ones I love, whilst also losing myself into to darkness. Because you know what whilst my grief is individual to me I know I am not the only one grieving my beautiful boy. Would I want to see his sisters give up on life, would Daniel, of course not.

So I guess what I needed to realise is the why behind the no’s, the fear that I felt regarding acceptance. Was it that I felt guilty laughing and having fun again without Daniel, answer to that is no. Daniel brought me joy and I know he would want me to continue to find joy, especially in the things we shared together. Was I just so sad that I couldn’t face these things and if that’s the case should I be seeking further help? For me the answer was simply (not that simple) I was place holding. You remember when we were kids and we would hold a place in line for our best friend, well I was holding a place for Daniel. I wanted him back and I was holding this space until he would be there. I wanted him back more than anything and I was so angry at life that I was refusing to fill the place where he should be. I don’t want to do this or that, I want Daniel.

Whilst that may sound like spoiled brat behaviour it’s grief and I think I felt that if I accepted, if I accept his loss I would lose him completely. But the harsh truth is I have physically lost him and I do have to accept this but I will never really lose him. Not whilst my memories hold him, whilst my heart still beats to love him. Love isn’t constricted by the physical realm.

Deep, crazy thinking which I do hope I am make some sense explaining.

So I guess the thing about the unwanted opinion is those words shared at me, were firstly ignorance, because I’m sorry without losing a child you have no idea how it feels. It’s not like losing your parents, sibling or pet (all completely valid and painful I’m not taking away from that) but losing your child the one you thought you would outlive, the one who you had dreams for, the one you raised, cared for. The one who holds your unconditional love it’s different. So whilst I will happily take thoughts, gestures and love unless you have walked this journey I will not accept someone telling me I’m doing it wrong. Grief is a journey and whilst many will walk through similar stages grief is unique to the individual. Heck it’s unique to both the individual and the one you have lost. I mean I thought I knew grief when I lost Livvy but this journey of grieving Daniel is completely different. It should be, I had a different relationships with them both, Livvy and Daniel were different people and my life looks different now and of course I’m different. I’m not the same person I was in 2008 who would be?

I am in no way pretending to be an expert on child loss and grief and to be honest I’m rather p*seed off that I’m having to live this pain again. Believe me, Jesus and I have had words. But I do know me and that means I know how my brain works and what it needs or I know (in this case) to find someone who will allow me to walk through this with support and guidance and patience to allow me space to work through it. I am well aware I’m not a easy person to walk with at the best of times, if there was an Olympic sport in overthinking I would be gold medalist for sure. But even if I was making a complete mess of my journey that’s my mess to create and unless you are pulling me from the edge of the cliff don’t you dare tell me or anyone that they are grieving wrong.

So back to opinions, look we all have them, I’m sure I’ve offered a few unwanted ones. The thing is I hope I do them in love or at least a shared understanding. Yet even when asked for advice on grief i can only offer my own experience. You see grief is unique, it’s mean and unpredictable and whilst it comes from love it often feels like hell. You have to live your own grief journey and I have to live mine.

Yet even beyond grief I wonder if In a world that allows us quick access to others. Where in a minute we can share our thoughts and feelings with others, what if we stepped back just for a minute or two and ask ourselves a few questions

1. Firstly am I speaking in love?

2. Do I have personal experience?

The main one should always be

3. Was I actually asked to share?

Maybe if we all did this the world and especially this online world would be a lot nicer of a place.

As for me I’m going to continue on my journey, I know it’s going to be messy, hard and painful I mean it’s life after all. Yet regardless of the pain I’m yet to face and the heartbreak that is right now ripping into my very being, I am so thankful. Thankful that I got the gift of loving my beautiful boy, so blessed to call the cheeky monster my son.

Daniel you Mommy misses you so so much. Xxx

Dear Daniel

Dear Daniel it’s been over three months since we lost you to the evil know as Covid. Three months since our world when dark, where I fell deep into the pain of missing. Life is so different and not in any way we like, yes we can go out when we want, sleep as long as we want but none of them mean nothing. My joy was found in caring for you, seeing your cheeky smile when you decided it wasn’t time for sleep, or watching your cheeky grin before you closed your eyes and pretended to sleep so you didn’t have to engage with others. Gosh I miss you.

I received a phone call today, a Secetary wanting to book you in for your appointment, having to explain to her that you had gone broke me into a million different pieces. Saying the words “my son has died” burned on my tongue. I cannot say this without the waterfall of tears that follow. I’m dreaming of waterfalls recently, I’m stood under the drop and the water falls on me, sometimes it beats at my body, I lose the air to breathe, it’s fast and it’s strong and it those moments I can think of nothing, my mind is full with the moment, the water wipes my mind. Then some times it’s slows to a trickle and as I wait for it to drop gently on my head, my mine is full of you. If you fancy working the meaning out Daniel let you mommy know.

I still haven’t got the hang of living without you in fact although my brain knows it my heart often refuses to accept it. I feel like shouting at God, “what the f@ck wasn’t one of my children enough? How many times do you want to see my heart broken”. Still waiting in his answer, still waiting.

You were my North Star and now I’m without direction. I mean you know you mom doesn’t remember her left or right so without you here to guide I feel like I have no chance. It would help if I knew were I’m supposed to be going.

I hope you are having some fun there, have you convinced Jesus about the need for a farm, have you got Livvy helping you with the animals. Like you Livvy loved the donkeys especially when they pooped.

Anyway my beautiful boy give your sister and big hug for me. I miss you both beyond words, I don’t understand why I had to lose you, but I hold you both in my heart, i wish it was my arms but my heart it will have to be until I’m there with you.

Dance on the rainbows and bounce on the clothes my beautiful boy.

Mommy misses you so much it physically hurts.

I love you to the moon and stars and beyond my sweet boy.

Always

Mommy xxx

Maybe you should wait?

Maybe you should wait until you get over it?

It?

Getting over it?

Right I have to touch on a subject that is really starting to drive me crazy. I recently posted about my excitement regarding my new job only to recieve comments or questions regarding “should I go to work if I’m grieving?

Is it too soon, are you ready?

Maybe you should wait until you get over it?

I just want to be honest and tell you how I feel how I feel regarding these comments and this field of questioning. Firstly full disclaimer I truly do believe you all mean well…

But and I mean a gigantic but….

If I was to wait until I stopped grieving Daniel I would never work again because grief doesn’t have a time limit unless you count eternity as a valid measurement. So whilst there will always be tears and pain regarding Daniel I cannot wait until I’m over something that I’m never going to be over. Olivia passed over 14 years ago and I miss her daily, far from over it. Grief is a lifetimes journey.

Also can I just state that my husband returned to work and the comments he’s received have been “it’ll do you good” “good on you” “fantastic it will be good to keep yourself busy” not one comment saying should he not be staying off work and grieving, or it’s too soon. All I find remarkable because believe me his grief is as strong as mine and his heart is as broken. Is this a gender bias, the man has to be the provider, well you know what I feel about gender bias and discrimination of any form.

I know myself well enough to know what works for me, what I need and there is only so long I can sit in a pit of misery and missing without it consuming me. I need a purpose,(Daniel was the best purpose ever). But having a reason to get up in the morning is something I need in my life. I live to serve, to fight for change, to make a difference, this is who I am. I cannot change the fact that Daniel has gone, you don’t know how much I would want to, if love could have saved him he would be still in my arms but it didn’t and all I can do now Is to try an honour my gorgeous boy by living with purpose.

Also I need to be blatantly honest here, with the cost of living so high and rising how can I afford not to work? Daniels death did not stop my bills. No one is going to pay for me to sit at home and grieve it just doesn’t happen in fact the opposite happens, the day Daniel died any kind of money or support we were getting died with him ( don’t get me started on this). So I have to go back to work.

I cannot do sitting around,it’s just not me whilst I will always be grieving my beautiful boy I also know that I need to be moving, to be achieving and thankfully I’m entering into a field that I’ve wanted to work in for a long time. A field where I hope I can make a different. A job I hope will bring me the purpose I need. Nothing will change how much I am going to miss my beautiful boy, the agony of missing him is mine for a lifetime. The only thing I can hope for is that I can make him and his sisters proud and for me returning to work is now a step towards this.

You cannot rush grief

Ok ok I’ve made a rookie error. You know this grief business, well you would think I would be be an expert. Losing three children, one would assume I would have this grief journey down. I wouldn’t need the map or sat nav; this journey should be set in my sub conscious, innate directions.

So why oh why am I finding myself trying to rush through to the end. You know the part where you find some acceptance and maybe a little peace. Come on Sara you should know better that this, there are no short cuts and no quick way through. There isn’t even a toll road that costs you a fortune but cuts out half of the journey time. Nope, no chance,not happening.

No matter how much you don’t want it to the pain of grief has to be lived, the reason why is simple , we love.

Right now it’s perfectly ok and right for me to be lost in the pain of losing Daniel. It’s correct for me to find every breathe painful in missing him. My tears should fall and my heart should be broken because I loved my beautiful boy, I love him, desperately.

Changing the sofa around, painting the walls even maybe putting his toy box out of sight may be what I need to do just to calm the waves but a fresh lick of paint won’t erase the memories of Daniel giggling on the sofa, holding him on my lap, snuggling into my chest, nothing will.

There are no short cuts in grief. What is it the Going on bear hunt book says “you can’t over it, your can’t go under it, you have to go through it”.

I know why I’m trying to push through the pain, the truth is I’m scared I won’t survive it. I survived losing Livvy by the love and need of her sisters, I am truly scared I’m not strong enough to survive losing Daniel.

I’m actually really scared of this darkness I feel.

My whole world changed with Daniels death, my identity as his mom, his carer, his nurse, physio et etc all disappearing with his last breath. He was, my purpose, my joy and my reason. My life was planned with him, I still cannot comprehend a life without him. It’s like my mind just won’t go there, a robot stuck moving back and forth “I just can’t compute, I just can’t compute”.

Oh gosh I’ve sat here thinking how better it would be to be a robot with no feelings, no emotions, no grief ; yet I wouldn’t be happy. I’m a person that feels intensely, if you are loved by me, well you get loved my me. I don’t do half measures. I tell myself I will protect my heart again and again but if I had of done that then I wouldn’t have had the gift of Daniel. I got to love and care for my boy for 6 years, I got to wake up knowing cuddles awaited me, that smiles that would fill my heart would bless my day.

I have spoken and walked through child loss with a number of people over the years ( too many ) and the one thing I tell them is it’s ok to feel broken, it’s ok to feel the pain, because you loved. Give yourself time and to be kind to yourself. This wasn’t how life should be.

Missing someone you love will never be easy and it shouldn’t be. This pain, this agony that I feel now it’s worth it, because I got to love Daniel and if I had to live this pain all over again for just one more moment with my boy I would do so.

So right now all I have to do is be, to be whatever I need me to be, to hold on and allow myself to grieve. There is no rushing grief, it sets it’s own timetable just like love does, as it should because grief is the love we cannot give and I love Daniel intensely.

In the brokenness

I’ve never been one to follow the calendar. I often don’t know what day of the week it is let alone the date, this has especially been the case in the last two years due to shielding. I mean who cares what the date is, we aren’t going anywhere. Yet since Daniels death I have found myself coming slightly obsessed.

When April turned to May my heart was aching, a new month that Daniel won’t be part of and today we begin another month that won’t hold him in it, it’s so very hard and feels so wrong.

How do I do this life without my beautiful boy? I really feel the need for direction. Nothing makes sense , the things I loved are now too different without my son. Alan suggested I join him in keeping the house tidy but even thinking about it makes me tired. I mean we are just cleaning up our own things when I’m so used to changing beds because Daniel had peed on the sheets, often literally after I had just changed his pad. That boy loved a clean nappy. I should be cleaning up milk when I forgotten to clamp the tube. Weighing pads, chasing prescriptions and so much more. What i am not doing makes what I should be doing feel so out of reach.

I know it’s going to take time and it should, shouldn’t it. You don’t move on from losing your heart in a day, week, lifetime. I’m just so lost it’s crazy, I think that may be my forever statement. “I’m lost.” Then I think of one of Daniels favourite hymns “ i was lost but now I am found” maybe I will be found or find myself again.

Who knows?

Alan and I are struggling so scared about the future. It’s hard trying to make a life you so didn’t want. Everything is different, everything is hard, everything is missing Daniel. People keep telling us of the holidays we can now take, the places we can now visit, the freedom we now have. I know they mean well but this so called freedom came a high cost. Plus I never felt so free when I got to love on Daniel.

I remember so vividly when we lost our beautiful Livvy my anger, I was so angry that the world continued to turn without her in it. I feel that same anger with Daniel but with an extra element of bitterness, we lost him to what we tried so hard to protect him from. His life was stole by a virus the world wants to forget. He is just one in million statistics that we just have to accept. It’s shocking, it’s cruel and it’s so very wrong.

I’m never going to be the same person again and I don’t think Alan will either. Sometimes the spotlight is too powerful to not see the truth. I don’t want to stay bitter but the brokenness of my heart allows it to creep in.

My wonderful friend reminded me at Daniels celebration of the Japanese art of embracing brokenness, Kintsugi. Kintsugi teaches you that your broken places make you stronger and better than ever before. When you think you are broken, you can pick up the pieces, put them back together, and learn to embrace the cracks. Kintsugi teaches you that your broken places make you stronger and better than ever before. She reminded me that I had once before filled my brokenness with gold and that I will do again.

I’m beginning to think I may end up with a bowl full more of gold than china but that’s ok every crack, every bit of brokenness was made because I was blessed enough to have loved and to be loved.

To be so very loved.

Baby steps

How i remember my girls taking their first baby steps. Kennedy completely bypassed crawling she was up on her feet before she was one. I mean she wasn’t going to get her dresses dirty rolling around on the floor. Eden was a crawler she walked early but wasn’t fussed how she got somewhere as long as she got there and Livvy well she was a late walker but could crawl faster than the speed of light ( slight exaggeration there but you get the picture.) and of course my baby girl Brodie, her want for

50 pairs of shoes had her up and running early too . I guess what I’m trying to say is we all go at our own pace and we have to allow ourselves time to make those baby steps.

Oh don’t I sound so calm and wise yet the reason I’m writing this is because I was so angry at myself today and felt like I have failed but now on reflection I don’t think I did.

You see I tried to return to church today, we haven’t been in the building since before the pandemic and I knew my anxiety would be high returning but that was when in my plans Daniel was with us. Walking in there today without my beautiful boy was agony. Daniel loved church, he especially loved the worship he would just shout out not always to the tune of the song but who carers he was telling the world how much he loves God. I remember his cheeky way he tried to take over the service when our leader was talking, how the more I tried to quieten him the louder he got. I miss the way he would pull into me when we prayed, when we loved on those that needed prayer and those that didn’t realise that they did. At home Daniel would sit in my lap and when we prayed he would pull me closer to him. Listening intensely to make sure he heard the words, the need.

So yes today was hard but I had been determined to go to church and I mean if you are going to fall apart it’s best to do it with family. I did okay I appreciated my hugs and wishes I was calm and ok well until the worship started. As James’s voice lifted up my heart shattered into pieces. Where was my boy, why wasn’t he here, his voice not there for me to here broke me. I tried and I really did try but be it the words of the song or the emptiness of my arms I had to leave. You know the moment when your crying becomes beyond control your sobs become loud and shallow yes that was the one. So I left, I just had too. Our church leader came and chatted with me and Alan and I calmed myself down but I was so cross at myself , I was cross I couldn’t find comfort in a place that brought Daniel lots of joy. But I just could not.

But you know what, baby steps.

After we left the church we decided to go to the food festival in Lichfield, our plan had been to go yesterday but my grief had other plans. Instead I sobbed until I gave myself a migraine, wasn’t the best of a plan really was it, oh well. Anyway off we went, it was super stressful even parking made me want to turn round and just go home. It wasn’t helped by my husband’s aggravation at the lack of parking spaces and definitely those who do not use indicators. I honestly thought he was going to combust. It’s strange how anxiety can make you feel, Alan gets cross at people, I start apologising for breathing.

Anyway we parked and we walked around the food stalls. I’m not going to say I enjoyed it,the vast amount of people was beyond overwhelming and after shielding for over two years having that many people around me was too much. But it was the missing that got me, now don’t get me wrong there is no chance Daniel would open his eyes at that festival it would have definitely been sensory overload but his missing presence was felt in so many ways. Firstly we just got out the car and left, no checking of bags unclipping of wheelchairs, making sure we have blankets and so on. Secondly we realised today that we used Daniels wheelchair as a ram, pushing through the crowds with the wheels getting knocked not us. It was just so strange even the knowledge that the only reason we could actually be there was because Daniel was gone. Crap that hurts.

So I managed as long as I could, Alan enjoyed a burger which he described as “the best ever”. I got overwhelmed by the choice and came home for my cornflakes.

But guess what I went and tried and last week I couldn’t have done that so as they say , Baby steps.

Dear Daniel

I did it again, I pressed my phone to call your Daddy to ask him if he had put you on your milk yet. Why is my body still waking me a month after we have lost you? Why is my normal no longer my own?

Oh Daniel there are not enough words in the languages of the world to explain how much I’m missing you. Even now as I lie here unable to sleep I know I haven’t accepted the fact that you have gone. I’m a mess, a complete utter mess and for once in my life I do not care. My mind isn’t full of wondering, afraid if others are judging me in my sorrow, I don’t give a monkeys it hurts, it’s agony.

The house still echoes of you, our home, your home, your scent still lingers on the air. I’m still using your shampoo as a body wash so I can smell your sweet scent of strawberries all around me. It’s running out, would it be weird to buy it again? Maybe I will search for an actual strawberry scented body wash. Maybe that’s a compromise. How I hate that word right now “compromise” it feels that’s all I am having to do. Grieve whilst trying to move forward. Rest whilst job hunting, always having to give a little when I really haven’t got a lot left anymore.

I don’t have you anymore.

Oh Danny, I know they will call me soon to collect your equipment and whilst I know you are free from the disabilities that made you need them, letting them go is part of an acceptance I have yet to reach. I’m scared of the emptiness their return will leave behind. I know I have to do it at some point, there is so much to sort out. Your wardrobe is full of new summer clothes you have yet to wear. No sorry clothes you will never wear. This sucks!

Your toy box is still in the living room, your book case full to the brim. Talking of books the new book written by Jacqueline Wilson came today, it shocked my heart. I had forgotten that we had put it on pre-order, “ A new adventure of the Faraway tree” do you think Moonface will still be in it ,maybe Silky too. We loved reading the original written by Enid Blyton together, I’m sure we would have loved this one too. Maybe when I get you home I will read to you. Is that a strange thing to do? Maybe I will just curl up under your blanket with Edgar and read it. Yes I’m going to cry, come on everything is making me cry. Do you know how hard losing you has been?

I guess I need to try and sleep, the irony is that now I have no one waking me at every two hours but I’m sleeping less than ever. I am hiding in my bedroom more than I should be, I’m not sleeping I’m just pretending you are downstairs with your Daddy. I know it’s not helping but let’s be honest nothing does.

Hey beautiful boy, I’m trying I promise I am. Giving up would be easy but I know you and Livvy didn’t teach me that way. Your both fought to live; I promise I will try to honour that. You guys need to help though, sprinkle me with some heart healing dust from heaven, how I wish that was a real thing. I remind myself that I “grieve with Hope” well I’m working on the Hope part, but I’ve got the grieving down perfect.

Oh my gorgeous handsome son, missing you is so so hard. Just to hold your hand in mine once more, yet I know once more is never enough, would never be enough.

So it’s been a month my dear boy, one whole month since your took your last breathe this side of heaven as you lay in my arms. As I held your body close to mine your spirit ran to Jesus.

Until my time comes, until I can run to you and Livvy.

I will miss you

Forever heartbroken

Your Mommy

Xxxx

My beautiful boy xx

It’s to hard

When I started my first blog in 2008 it was to share my life as a mom to four amazing girls. My third daughter Livvy, had a neurological disorder called Rett Syndrome. I wanted to share how life with a child with disabilities was hard but also one full of joy. Well as the irony of life is that joy quickly turned to sadness when I lost my beautiful girl to a rare virus that happened due to her disorder and my heart was broken into pieces. It was then I was ready to close down my online space and disappear into the pain of my grief but I was encouraged to share my heart, to share my pain in hope that maybe it would make others facing the same thing feel less alone. This is what I did and I have many moments that I’m so grateful that that’s what I chose to do.

Over the last 6 years the story of my life on these pages was changing, yes I was still grieving for Olivia but through the presence of a special handsome little boy my life began to fill with joy, with laughter and with hope once again. Daniel entered my life, an emergency weekend placement that became my forever son. My beautiful, beautiful boy. Yes he had his mega list of complexities but more than that he had a smile that blessed my heart and a cuddle that made me feel whole again.

Yet I didn’t get to feel whole for long because on my 46th birthday my heart was tore to pieces once again. On the 27th April 2022 Daniel went home to Jesus. The virus known as Covid 19 claimed another life., it stole my beautiful boy.

I have no idea what to do now, my purpose has gone. When Livvy died her sisters were so much younger they needed me. This time they are adults and in fact I really need them. You see I’m lost, I’m hurting and in all honesty I am broken. I have no idea or desire to do this life without Daniel. Through the Grace of God I survived losing Livvy but right now I have no idea how to survive this pain.

Daniel needed me in a way that allowed me to be free. To allow my heart to live its destiny of loving hard. Daniel taught me how to use my voice and to advocate for him and all children with disabilities. To not hide any more but to shine in loving him.

My light isn’t shining now. I am so very lost. Do I return back to these pages and share my heart once more or have the words already been said.

Will the story read too familiar?

I have no idea, I really don’t. How do you journal the lost of another child? Do I really or should I really put words to the devastation I feel? Will putting them out there for others to see blow back at me. I do not know.

All I know right now is that I’m so very lost, I don’t know my purpose anymore and my heart, well it’s forever broken.

I miss my gorgeous girlie.

I miss my beautiful boy.

This life is too hard.

Hope Day

Yesterday we received the news that the The Joint Committee on Vaccination and Immunisation have given approval for a low-dose vaccine to be offered to vulnerable primary school children aged 5-11 years old. This news has literally had me dancing around my sofa.

I finally feel hope that one day soon Daniel will be able to live his life fully again. This is something I have openly campaigned for and today my heart is so blessed.

Throughout this pandemic we have heard that Covid 19 does not adversely affect children and whilst this has been great news for the majority there have been thousands of parents, carers and children like myself living in fear.

My son Daniel has complex needs in total he has over 15 diagnosis and a number of them affect his immunity and his ability to fight infections. He has been hospitalised numerous times due to the common cold so you can imagine the fear Covid 19 has brought to our door. The only way I can describe it is that for the last 22 months I have been unable to breathe deep. The fear has closed up my chest in panic and anxiety and I know I am not alone. Thousands like me have lived in fear, hiding away, not living our lives fully to protect those we love.

Campaigning to get this vaccine has been hard, sharing my heart, my worries, my fears to the country in hope of having our children’s voices heard has been scary.

Yesterday’s decision has made this all worthwhile.

I have spoken about children like Daniel as the “forgotten children” today we can say we were not forgotten and we were heard and we were given hope.

I now have hope for a vaccine that will help protect my son.

Hope that soon Daniel will be able to live his life fully again. Return to school, return to his therapies, visit with his animals and get hugs from those he loves.

Yesterday was a good day.

Today is a Hope day.

To just miss you.

Sometimes I wish for the innocence of a child. If I ignore it then it will go away, fingers in my ears means I cannot hear it. If I don’t believe then it’s not real.

But it is and I’m not.

My innocence has gone

I tried so hard to hold on but into the ground it went with you.

I mean how do you bury your child then believe the world is a good place?

How does your heart break and you still have hope?

I live a seasaw existence trying to believe through a curtain of pain and missing.

How do I have Hope, when Hope was lost?

It’s been 13 years since I lost you, 13 years to the day the whole world should of ended. How dare this world continue without you a part of it.

Grief is unfair and cruel, spiced with an extra splash of agony.

Time is a healer is the biggest lie, fraudulent words whispering off so many tongues.

I will never accept losing you, your death was not a experience for growth or a period of learning. It’s a evil, awful thing that tortures daily.

Don’t ask me to rise upon it today, today on your anniversary I get to speak my truth. My words not shielded in polite conversation. I’m angry, I’m hurt and I’m furious at God.

Why why why?

Don’t ask me to look at Daniel and be thankful that I have him now. Yes my love for him infinite but one child doesn’t not replace another. Daniel is a unique blessing on his own accord not a replacement for Livvy. That would be unfair to us all. You don’t just pop to the store to replace a child, here you go have a new one,all is better.

Don’t ask me to pretend today, pretend that this world is still a place full of joy and love and light when my brightest light is missing. Don’t tell me she shines in heaven, yes maybe she does but I’m not there and I cannot see it and I’m selfish like that.

Don’t ask me to understand if you have forgotten her or what day this is. Because how bloody dare you, if you were lucky enough to be loved by her how dare you forget that gift.

Screw time moves on or life changes she was a gift that you should forever cherish. I’m not understanding today, not being forgiving I’m raw I’m angry and I don’t understand.

My beautiful beautiful Livvy how can it be 13 years since your light left this world? How can my heart still continue to beat without you. I still feel betrayed by my own body.

I don’t understand why the world continues to turn without you. Why your time was so short? Why why why?

Maybe tomorrow I will find my peace again but today on your anniversary I’m angry, I’m sad and I’m lost without you. 9 and a half years will never be enough.

I know you wouldn’t want pain for me and I do try my sweet child, I do. But the hole in my heart will always be there aching for it’s missing piece.

I know you want me to have joy and maybe tomorrow I will again but today, today I allow myself to be real, to be in truth. To tear down the veil of pretence and grieve you wholeheartedly . To let the missing pour out of my heart, to cry, to shout, to scream, to just miss you my beautiful girl.

To just miss you.