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

Do you get ice cream in heaven?

My phone vibrates, it’s a reminder to tell me it’s the Derbyshire county show today. I remember vividly adding the date to my calendar. Telling Daniel about how much fun we were going to have. The animals we would see. Describing how loud and full of so many different sounds, how I hoped the highland cow class in the show ring was going to be on again. Daniel sat eyes wide open listening to me, cuddling in closer as I went on telling him about the horses the tractors. He wasn’t happy that his favourite vet and wife wasn’t going to be there but we were going to have a wonderful day, I’m sure of it.

How I wish I was back there in that state of ignorance. Not knowing how less than a month or so later my world would be in pieces, shattered completely by my broken heart.

How I wish that I could have got up this morning and got Daniel ready for our day of animal heaven, not a day of grieving him in heaven.

How I wish

How I wish.

I hope Daniel visited the show today, that he and Livvy watched the show rings and guessed at the winning animal. I hope they danced to the music playing, flew high on the fairground rides, enjoyed ice-cream and candy floss. Do you get ice cream in heaven? I hope so.

I on the other hand have spend the day in tears, valid of course but overwhelming and so so painful. I truly feel like my future is over, I just have no idea what to do or who to be. I did wonder about going today but decided I couldn’t. The pain would have been too much and actually finances wouldn’t allow it. I do really need to find a job.

No one warns you about the loss of identity that comes with grief, with the loss of your loved one you lose the role you were to them. If you lose a parent you stop being their child, if you lose a child you stop being their parent. I don’t mean in name but in what your day consists off. Losing Daniel I stopped being his mom , carer, nurse, advocate my favourite role, the cuddler all gone with my beautiful boy. Of course I’m still Daniels mom but right now he doesn’t need me and oh my I loved being needed by my boy.

Along with the county show today I have many more moments, appointments that I don’t have to attend any more. My days are empty and I’m finding this hard to navigate. What the heck do I do with myself, 24 hours are now endless and empty.

As I’ve said I’m job hunting but even that has me at a lost. I haven’t spend the last years planning, working on my future career. I had my plans perfectly set before me. I would live to love on Daniel, to spend my time caring for him. Using my time to advocate for Daniel and any one with disabilities who are facing so much discrimination right now.

I had my plans

Did God laugh at them?

I don’t think so

Covid just stole them.

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.

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”

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.

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

Rabbit hole

Have you ever found yourself falling down a rabbit hole, I do often. In fact it’s something I recognise about myself that when something interested me or intrigues me I have to learn more. I can lose hours to learning more, researching and trying to understand.

You see I’m not a face value person, just because someone says it is doesn’t make it true. It’s the reason I have struggled at times with religion, society norms and in general life.

I mean even the history we learn has been written by someone with bias. In fact the way we view life is with some form of bias, our upbringing, the beliefs shared, even the political landscape of our country.

It’s something I struggle with a lot hence the falling down rabbit holes often. I mean if something is said, who said it, why did they say it and where’s the evidence?

I love to read and learn and this is something I’ve always enjoyed but sometimes it would be nice to just say it is because it is.

I often wonder is my brain is strange, the way it views everything with a little mistrust. I really don’t understand people when they quote me the Daily Mail or some other media outlet as truth, I mean come on. You do know journalism is bias from the outset. Be it the ownership or political leading or the blatant scandalisation to sell more it should always be questioned.

But beyond bias I’ve realised that the world is so big that I have hardly touched the surface of my understanding and knowledge. This is exciting and sometimes upsetting I mean I like to think of myself as knowledgable but the reality is I don’t have a clue. I am knowledgable in my small piece of life but my goodness they is so much I do not know. What if I believe something, yet more knowledge would show me I was wrong?

Do you ever feel this way? That you have so much to learn? That you actually don’t know enough?

See rabbit hole.

I often struggle with anxiety and sometimes I do wonder if it’s because I cannot stop the thinking. Throw away comments often get stuck in a loop in my mind requiring research, understanding often beyond what I need to know. Reciting of conversations seems to be a hobby of mine.

My husband frustrates me to my core he doesn’t think past the here and now. He can lose himself in TikTok for hours, get obsessed about a new car and do research for this but when I ask him to think beyond his immediate world he isn’t interested. “Why worry about what I cannot control” or the worst one “just stop thinking about it”. I mean come on as if that’s possible. He frustrates me partly because I would like him to think a little more and share the worry and stress but mostly because I’m just completely jealous.

I’ve always been this way, when I was young and I asked my Granddad a question he would encourage me to either go to the library and read books on the subject or ask others and get a variety of viewpoints. I loved our conversations they could be so random yet always interesting. He never allowed me to view the world one way, he would remind me that everything’s is dimensional and we need to know all the dimensions to make an informed decision, ooh I wonder if it’s his fault my mind has no off button ha ha.

Beyond the sometimes brain exhaustion and anxiety I do love my inquisitive mind. Yes sometimes it breeds anxiety and fills me with fear but I do love my rabbit holes and learning. One life doesn’t have to mean one view of the world, we are a world of so much culture and beauty and yes a lot of darkness and hate but even that grows from a bias, a different view that I maybe cannot understand unless lived.

In the special education needs world we often say that all behaviour is a form of communication but to be honest I think this concept is wider. The way we behave is often based on what we have learned, our actions based on what we believe. Our beliefs start with what we are taught. So the way we behave is communicating who we are.

So to understand one another, we need to understand the lives we each live.

Rabbit hole anyone?

Let’s banish “I’m fine”

I swear my body and mind are in conspiracy to drive me crazy. My body aches and I’m so tired I can barely keep my eyes open. I finally fall into bed and ping, my mind starts its endless racing. Have we done this? Did you remember to do that? What about this? What about that? What happened, what if this happened oh my goodness please stop.

I read a post the other day, a friend not a close friend we haven’t met but someone who matters to my heart reached the darkeness and her world was so dark we nearly lost her to it and my heart broke. Yes the joy of the nearly was full of gratefulness but the sadness that the facade of social media had not let us see their pain.

But it’s hard isn’t it, to raise your hand and say I’m struggling.

I call it my advance and retreat. I try to be honest, to be brave, to be raw then in the morning light my weakeness fuels my shame.

I should be coping

I’m so blesssed

Others have it worse

Be grateful

Others have enough on their plates

Don’t put on others

Stop being dramatic,

This last statement is my core enemy.

My childhood was full of being told I’m to dramatic, to emotional, too much.

Even now the narrative is different yet still hauntingly the same, you care to much, what if doesn’t happen, let it go.

Still shame based observations of my heart.

You see we are all unique and whilst the stiff upper lip is so celebrated it is also the weight that holds so many people down.

We should be taught from an early age to be open and honest. Tender hearts should be celebrated, anxiety understood, overthinkers heard.

Our children should learn from day one that the way they feel is perfectly ok. If it doesn’t make sense to others that’s also fine, that the world would be a boring place if we all thought and felt the same.

But we aren’t are we, our children are taught by rote, uniformed to be, to do, to fit.

To be seen and not heard once held by parental control now often controlled by technology.

Yet we should know better, with the ever increasing levels of mental health issues we should be better.

“I’m fine”’should be banished from everyone’s vocabulary. “Are you ok” should be asked with truthful concern. We should listen deeply and we should take time to care.

Yes the world is a busy place, yet the viewing numbers of the last reality programme proves we have time. Yet it’s easier for us to invest in the loves and lives of those we don’t know because no effort is needed. So yes we have the time or can make time to check in on those that we know and should care better for.

So why don’t we ?

I know I need to do better, I need to reach out more, when a friend goes quiet just check in. But I also need to be honest to create a place when it’s safe to speak our truth.

To not hide behind the illusion that’s I’m ok when I’m not. Someone once told me that they couldn’t speak to me about a problem, they felt that my life as hard at it seems meant that they didn’t wish to put upon me. But also they felt ashamed because I was doing well in my journey how could they complain? This broke my heart, I am far from ok, sometimes I lie in bed and beg my mind to leave me alone. To just for a moment stop thinking, stop torturing me with agony of what ifs or what should be. I’m not ok and maybe if I’m more honest in my struggles and vulnerabilities it will allow the others the space to be transparent with theirs.

Hey, we can not be ok together.

I do not believe we were supposed to live this life alone, but alone it will be if we don’t let those we love know our hearts.

So here’s to being truthful, to banish “I’m fine” and to reach out.

Let’s be better

Let’s do better

Let’s love better.

Drive

I never imagined I would drive, I come from a family of HGV lorry drivers and after watching them manoeuvre those gigantic machines I simply thought“not me”. The responsibility, the awareness needed all seemed out of my grasp.

It’s easy isn’t it to tell yourself that you cannot do it. That it does not happen to people like you, it’s out of your reach, beyond you.

This is what I thought as I sat in the public library one day, no matter how many notebooks I filled with my stories, poems, songs holding a book I had written in my hand was beyond me. Seeing a book I had written on the bookstore shelf well that didn’t happen to people like me.

Well it did and it has, yesterday my first children’s book was released. I’ve got to hold my dream. I’ve overcome my fear of failure, my fear of not being good enough to hold my story in my hand. To allow the dream of my heart to be realised. My hope printed from my soul.

It’s strange as today feels like a game changer, just like the day I passed my driving test (not HGV’s) and the world became larger for me. Today the world feels a little clearer, my mind a little braver and my heart a little stronger.

No more telling myself what I cannot do or what shouldn’t happen to people like me. Im going to dream and dream big and drive forward with conviction, with belief.

Belief in me.

Joining in with five minute Friday

1. Write for five minutes on the word of the week. This is meant to be a free write, which means: no editing, no over-thinking, no worrying about perfect grammar or punctuation. Just write. Write, post then link up.

Strong

“Oh she does so well”

“I don’t know how she does it.”

“She is always in control.”

“She is so strong.”

These words are often spoken over me, as a mom who has faced loss then chose to adopt a child with complex needs people seem to think I’m some kind of superwoman, a special heart, so strong. 

I may be all of those things at times but I have allowed these words to stop me opening up, fearful that in my honesty people would see weakness.  

You see there is beauty in strength but choosing to be vulnerable is one of the scariest things we can do. Allowing our hearts to be transparent, now thats hard. 

Yet I often think strength and vulnerability are the same thing. 

Some days I feel far from strong, I find myself hiding in the bathroom as I let the tears fall. I feel the nausea in my stomach as my legs go from underneath me. 

I feel all of this and in this I am strong. 

When my heart beats so rapidly in my chest and I can barely catch a breath, I am strong. 

In the panic and fear I feel, I am strong. 

Yet I still find myself hiding for fear of judgement, fear of weakness. 

How wrong am I? 

You see life is going to be hard, we were never promised anything different but its in the showing up I realise my strength. 

Yes, adoption is hard, but I show up

Grieving is hard, but I show up

Being a medical mama is hard but I show up

Being exhausted from caring is hard, but I show up. 

Being lost in the anxiety is hard but still, I show up. 

I am strong, I am vulnerable, I am a glorious mess of all these emotions. 

Strength isn’t in not breaking, it’s allowing yourself to fall apart in love.

And then showing up. 

I am no longer going to hide under the words spoken over me but I do choose to stop them allowing myself to be honest. 

I refuse to allow the fear of being weak stop me from being vulnerable. 

My weakness is my strength 

In my fear I am strong. 

I show up. 

Writing again in the Five minute Friday link up.

Write for five minutes on the word of the week. This is meant to be a free write, which means: no editing, no over-thinking, no worrying about perfect grammar or punctuation. Just write.