My beautiful boy.

I have been asked by a number of people if I would share what I said at Daniel’s celebration of life and to be honest I wasn’t sure as it was me being honest and very vulnerable. Then I was reminded that’s what I do I share my heart to allow others to share theirs. So here is my speech please if you don’t like it keep that to yourself because this was literally just for my beautiful boy.

My beautiful boy, my son.

It is said that grief is the love that you cannot give so right now this pain feels validated, feels true. You see Daniel I love you with every breathe I take. From the moment I met you I fell in love, breaking all the rules but not caring at all. The day you officially came our son it was day that the the legality caught up with what my heart already knew, you were my boy, you were my son.

Thank you Daniel for reminding me of the joy in the world, for allowing me to love you with no restrictions. It has been a gift to be so needed, to be your safe space, to be your person. I’m not sure how to go on with this endless void in my heart but I will try for you. You fought to live with a strength that is beyond comparison, if love could have saved you well we wouldn’t be here today.

How I wish I could hold your hand in mine again, how I could run my hands through your thick crazy hair. How I could feel your head on my chest and your gentle breathing in the place your called home, my arms they ache to hold you. My lap feels empty and lost.

Daniel your Daddy misses you so much, his Grand Prix buddy or sofa naps excuse. How he wishes he could moan again about the number of clothes, shoes, coats you needed, well I believed you needed. How even his fear of animals was lost in your excitement.

Daniel Robert you were a gift, a mind so full of questions always wanting to learn more. Your love of animals was unbeatable, your desire to put your hand up a cows bum unrepeatable.

Your love of nature was inspiring, teaching us to slow down and really take in the glory of our world. We listened to the trees as they danced on the wind, marvelled in the bird song, and cherished the fragrance of the flowers.

Daniel you loved God with all your heart, how I will miss hearing you sing along to worship. How I wish you would try and shout over Tim once again in church . Our prayers, oh my our prayers how you prayed for those you loved with a compassion beyond your years. You prayed so hard for your sisters, for their happiness, their hope. I know you are still praying over them and hopefully having words with the big guy up there.

I used to call you my little old man, childrens tv or music you didn’t care for. The documentaries, zoo programs and of course your complete favourite the Yorkshire vet. I’m going to miss your Dad complaining, so sure that we had fixed a prolapse viewing for every mealtime on purpose. We didn’t but maybe now I will.

Oh Daniel my beautiful boy, You touched the lives and hearts of everyone who met you. Your cheeky Elvis smile, your dirty looks all part of your character that we loved. You were joy, hope and faith all rolled into one handsome cute package.

So many people here today will miss you, your nurses and your flirting, the hiding in your hospital room for sneaky cuddles, you loved them all. Your Drs all inspired by your courageous spirit and your ability not to do it the usual way, always the Daniel way. “That’s Daniel”

Daniel you were a gift to us all, you gave us all hope again, you taught us to love hard once more. Right now I’m not sure I will ever fully love again but I know that’s not what you would want from me. Not the legacy you would choose.

I will feel you Daniel in the wind that blows around me, In the flowers that bloom and in the dancing of the trees.

Thank you my son for giving me the gift of loving you. Thank you for loving me with a need unlike I have every known.

Thank you Daniel for being my son, my forever beautiful boy. Now go dance with Livvy and sit in the arms of Jesus until we meet again.

I love you x”

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

Job hunting is painful

Ouch, my heart is beating so quick it’s a question a simple question.

Do you care for someone?

Job applications, oh my goodness when did they become so in-depth I mean I’m literally waiting for the question asking me my bra size. How much do employers need to know to see if I’m suitable for a job, why does the number of dependents matter? Are they only after those without. Then the realisation hits, I don’t have any dependents any more. My girls are adults they don’t depend on me. No one does, then to knock the realisation out of the ball park, the final question, do you care for someone?

Ok ok please leave me alone. Isn’t it hard enough that I’m applying for jobs I never expected to have. That my world looks completely different to the one I was in a month ago.

How much more of this pain can I take?

Oh my goodness how hard, too hard.

I know people have told me not to job hunt yet but obviously the bills still need paying and the day the one you care for dies, all payments stop. Giving myself time isn’t a option. Also the truth is time is something I have too much of right now. The days are endless and I mean endless. I swear my days are now made up of 48 hours not 24.

I need a focus, I need a challenge. I’m not the kind of person who can sit still I thrive on being challenged and I love being busy. Yes I have to learn some boundaries for my health and well-being but I need to do something. But what, and who am I now? For the last 13 years I’ve been a proud foster carer but after losing Daniel I cannot do this right now. Maybe in the future but not right now. I need something different, something that doesn’t make the familiar painful. Does this make sense?

But beyond being a foster carer who am I? I’m definitely not the dance teacher I was in my 20’s that’s for sure.

Could I do something in my passion, could I use my words to earn me a living? I would love that but have no idea how to make that happen.

Could I continue to advocate? When I write, speak and fight for equality and against discrimination the words form themselves. My passion allows the letters to fall from my fingers. It matters, I want it to matter.

So who, what and how?

If you haven’t caught up yet the reality is I’m in pain, I’m lost and I really want direction.

Any suggestions?

Any jobs offers?

Pretty please.

It’s just a van

It’s only a van I tell myself.

But it isn’t. It’s a symbol of the life we lived, the life we lost.

The boy we have lost.

This van was our escape to the Yorkshire moors, our spaceship to the land of green fields and so, so many cows. It was Daniels and with its return it’s another piece of my beautiful boy that I have to lose.

It’s not only a van, it’s a vehicle full of so many memories that I can never repeat. A vehicle with blemish’s created from adventures. Sand from the beach, leaves from the trees and a wheelchair now devastatingly empty.

Every piece of equipment taken away feels like a vicious blow to my stomach. I’m nauseous with the pain of loss. I know we don’t need them anymore but my goodness it’s just not fair.

We should be packed up ready to go visit with Daniels favourites, to feel my heart slow in it’s dance as we pass the border into Gods own country. I should be parked up by the river with my gorgeous boy on my lap feeding the ducks. Listening to the sounds that they make, laughing at Dads reluctance to come close.

How many “ should i’s” can one heart take, we are only weeks in and there has already been too many. How in the world can I survive a lifetime of this?

Grief is not new to me but this pain is unique unlike anything I have ever known, anything I have ever felt. It’s grief for Daniel, individual for my beautiful boy. Pain twisted in the memories that we shared, agony in the cuddles we won’t get to share again.

To say I miss him feels like the understatement of my life, I literally feel like I’m walking about with my heart missing. Breathing is pained by grief, my memories are torturous.

So as the van leaves the driveway for the last time. It takes with it a dent of my bollard hitting moment. The scratches of bushes too close to the sides but most of all it takes away another part of a life that I cannot live again.

It’s not just a van, it was Daniel’s van

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.

Start here

I’ve decided to try and follow a January prompts writing plan. This year is for me to be about learning to enjoy writing again without the pressure of a false idea of perfection.

So here we go.

January 1st : Start here

Start here at the beginning, this should be a time of excitement and anticipation yet I always struggle to start anything. The fear of failure looms above me like the dark cloud on a miserable day. Expectation breeds anxiety inside of me, I’m scared to fail before I even try.

I’ve learned a lot about myself this last year especially. How I have build up false accounts in my mind to protect me. I had convinced myself of so many falsehoods, hiding myself from judgement or the pain of broken promises.

I’m examining these lies I’ve told myself and trying to work out what’s truth from the protective façade.

From simple things like I don’t like craft to places I have convinced myself I don’t wish to visit. Unpicking the pain and brokenness and trusting myself to make my own judgements. Not allowing the past to define my future.

This may just sound vague and that’s ok. Todays not the day to open wounds in a public arena but a day that I start to allow myself to heal.

Trusting myself to feel the rejection and stand strong in my own truth.

Believing that I am ready to finally allow myself to be me.

So here on the first day of the new year, I allow myself to begin to heal.

To begin a journey of new understanding.

Let’s

Start here.

Let’s find me.

Christmas present.

I cannot believe it’s Christmas in a few days. I have struggled with Christmas for as long as I can remember without going into details I have finally started to understand how childhood trauma can create a fear that may not seem reality to most but to those who have PTSD can be often overwhelming.

This is me.

I’ve tried for so many years to create the perfect Christmas to break the patterns of fear in my mind and to make sure those patterns were never created for my children. I wanted their memories of Christmas to be filled with wonder and excitement. I believe for them I have done this for myself it’s still a game of pretend.

Whilst I love the illusion of Santa I have never played the you better be good card on my children. The gifts they receive on Christmas Day are those bought by those that love them. We honour the tradition of Santa but also we celebrate the birth of Jesus. Yet there is no guarantees on what will be under the tree, yes we have listened to your wishes but also it is what can be afforded etc etc. But for me it’s about teaching the children about the love of the season, not making promises I cannot keep.

I listen to my children and live to see their faces when they receive something that had mentioned a while ago, it’s not about the gift it’s about the being heard.

This Christmas I’m struggling, it’s seems fear is the only thing I’ve managed to wrap and place under my tree. My anxiety has been on steroids I’m so tired of being fearful. So fed up of the nightmares of Christmas past I really wish Jacob Marley would just past to the light and leave me alone.

Christmas spirt just seems to be further away then ever. Yet for some reason this year my acting skills have left me I cannot pretend anymore I’m broken. Please don’t ask me what I want for Christmas I cannot cope with expectations. I was working on them but that Covid bitch stole my progress along with everything else.

I just don’t want to engage with the excess of Christmas I just want to hold Daniel in my arms and read him stories, watch some Christmas films and just be. I don’t want the noise, I want the calm and the peace. I mean Christmas is the celebration of the birthday of the prince of peace so why shouldn’t it be tranquil and gentle.

What do we have to go big and loud?

Why does it have to be too much?

Why does it have to be so full of fear?

Covid of course has done a dirty again on the season along with Christmas carols came the rising numbers. New variants, new restrictions and a new dose of blooming fear. I mean can Santa even visit if he has to quarantine after every sleigh flight? Seriously though how can people build joy without knowing what will happen.

It’s sucks it all sucks.

Yet I’m going to try and fight back, fight through the memories and try and change my own thought patterns. Try to learn to love the season again. Maybe understanding and acknowledging the past will allow me to fully embrace the future. Obviously working hard on your mental health in the middle of a pandemic hasn’t been easy but what else do I do with all this down time it’s not like I’ve been able to go anywhere (yes there is bitterness there). Covid is like a dodgy ex you think he is going away but no comes back with all the extra drama, showing up when unwelcome, bringing chaos and pain with it.

Yet allowing myself to feel has been worth it, sometimes the memories and emotions have felt more than I can face, but face them I have and although I may have boxed a few for another or never time, I have learned more about myself than ever. I know who I am deeper than ever before. Which is a mixture of bad and good, I mean we all have things we wish to change about ourselves.

So I am going to enjoy Christmas not in the excess way of the tv adverts or holiday promotions say it should be but our way. I am going to curl up under a blanket with Daniel and so many stories to share. I am going to veg out on the sofa and watch Christmas films that are cheesy and full of hope. I’m going to enjoy good food without the expectations of fancy tables and decorated plates. I’m going to cook extra and bless my elderly neighbours with a Christmas dinner I hope they enjoy and I’m going to breathe deep.

I’m allowing the past to wash over me and build myself memories that are different. The past doesn’t have to haunt you, you are allowed to leave it when it belongs in the days gone before you.

So bog off Christmas past and hello Christmas present, please leave the chains behind you.

The veil of pretence

What is it about the early hours on a hospital ward that makes you feel so alone? Yes there is the hustle and tussle of people in the other rooms, the pacing of the nurses as they walk their endless steps up and down the corridor. Even the constant beeping of the machines all which should make you feel less alone but actually have the opposite effect.

I’m going to be completely vulnerable right now and tell you along with the isolation I feel fear. Right now I feel like the weight of the world is on my shoulders. Daniel is doing ok but the residue of previous visits, previous trauma tastes bitter on my tongue.

I can hear Daniel swallowing and for some reason I’m swallowing with him. Anxiety is making my mouth go dry. I’m lonely here in this side room yet I also know I’m not on a holiday and the reality is I’m extremely grateful for the individual room.

I think this is something that parents of children with complexities don’t talk about enough. The fear hospital stays bring with them. The isolation and weight of the world we feel when we are here, but also the echo of past trauma and how even though the situation is different it doesn’t allow us to breathe deep.

My husband tells me to go home and he will stay yet I cannot it just doesn’t feel right, I actually feel like I’m abandoning my boy. He tries to explain that he is also his parent but I’m sorry , I do him an injustice as I cannot hear his words over my own fear.

I guess I don’t know what to say really or why I’m tumbling over these words. I think it’s just awareness that I really want to raise, for all those that watch our stories and seem to think we are used to our hospital stays, immune to our children suffering.

We aren’t, we are trying to hide our fear to calm that of our children’s. We smile and chat with nurses we have come to know and love but in reality would rather not see again. We survive because we have to, but each visit, each stay tears at our fragile veil of pretence.

For me right now the veil is torn, I’m struggling. Please let tomorrow be a better 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.

Still

My head hurts, the noise level just seems to be getting higher snd higher.

People talking, screaming to be heard over one another. It really feels like it’s a world of who shouts the loudest, wins.

When did we stop listening, holding out for the sweet silence of a moment. Waiting for the small voice of our intuition to speak to us before we spoke?

Holding our own counsel?

I know I can be the same reacting before thinking. Engaging my tongue before I engage my brain.

I think lockdown has changed me, the silence whilst often isolating was also freeing. I don’t have to be anyone but me, no illusions to fulfil beyond the ones that hold truth.

The quiet, the time to be still. I realise now how much I need it and how much it calms my heart.

I sometimes wonder if my heart is attached to my life the crazier it gets the harder it beats. Yet that would make some kind of sense, yet as I lie in my bed praying for sleep my anxiety has other plans.

I’m breathing deep but insomnia is becoming a fast friend. I know we all have periods of this but recently the noise has begun to hurt my brain.

This is this

This has to be

Covid, petrol shortages, empty food alises. Why does 3am feel the best time to worry about them?

Hospitals struggling, NHS at mass. Drs and nurses once being clapped are now being condemned.

Unfair, unkind, untruth

People reacting without researching, laying blame at the accessible rather than at the feet of those that hide away. Those that hold the responsibility.

Oh mind please

I just want to sleep

I just want to be still.

I see the dawn is coming and before long the sun will rise.

I need some rest

I need my mind to just quieten down.

How do I be still in this crazy world, how can this fallen world learn to stay true?

Joining in with Five minute Friday