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

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 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

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?

Explore

Day three #hopewriterlife

I never thought I was one who wished to travel. I never got the itchy feet or desperate need to go exploring. But I’ve realised I hadn’t learn my passion yet. Over this last year my son Daniel has become obsessed with animals and veternairy programs and from joining him in watching them I have discovered a desire to go places and explore the wilderness. I have fallen in love with places from Yorkshire to the YukonI. want to go visit the places that we watch. We started with the beautiful Yorkshire last year and I have fallen completely in love and seriously would pack up now if I could. The beauty of the area has literally enriched my heart.

I want to go see the animals in their natural habitat or as close as possible. I want to explore.

Actually I want to explore more than I have ever have done and I mean ever before. I think sometimes you have to find you to find out where you wish to go. Over the last year along with Daniel I have got lost in the learning of Gods beautiful creatures. Watching, learning has left me with a desire I never knew I had. I mean I’ve always liked animals but never wanted to know them as I do now. The idea of just waking up surrounded by space and animals just sounds so wonderful to me. Forget the big cities they have never held excitement for me, give me mud, grass and air I can breathe in deep.

I think it’s so easy to just assume you should go where others go. The places chosen by others do not have to be your places. Understanding this has allowed me to understand me more and the places I want to explore.

Sleepless in the middle.

I am wondering about life too much, my mind stumbles over the what if’s, the maybe’s, the should be’s. I am feeling lost and I am not sure why.

This last year have been hard on so many, the losses, the isolation, the fear has placed a heavy toll on our society and yes I have missed so much and my worries for Daniel’s health, his anxiety, his fear of people leave me with a uneasy feeling I can not shift. Can I get him back to where he was physically, can I get him back into school, can I stop him having such awful panic attacks? Are all questions I cannot answer right now. Yet I have a quiet acceptance that a pandemic is trying times and holding on to what should be, seems lost in the thankfulness that we are still here when so many others aren’t. The fact that I can worry about Daniel is a gift that I am trying to be grateful for. How strange is that of a statement being grateful for a worry, maybe it’s the fact that I have one child in heaven that I desperately wish I could worry about once again gives me this perspective.

I am trying to be thankful more,I cannot stay in this negative fear based reality anymore, if I do I don’t think mentally I would survive. For months I have been obsessed with numbers, with testing, with symptoms with fear. Frightened that allowing anyone into our lives would be a risk that I couldn’t take. Honestly I have been awful, hating my husband for his RC racing, for talking to someone outside a store, the fear of everything being so overwhelming that my stomach has not settled for months.

So I am trying to fight the negativity in my mind, giving thanks for the vaccine, for the lateral tests, for the research, for the scientists and especially for the wonderful NHS those that haven’t given up when many would have done.

I’m trying to find a balance between safety, protection and living. Daniel and I cannot hide between the walls of our home anymore, I cannot hide anymore.

So as I write this I am in the one of the places I swear my soul knows, North Yorkshire, we visited here for the first time last year and I never wanted to leave. The people, the places, the air all somehow allows my soul to breathe deep. I know my worries and fears haven’t disappeared but in the openness of this country my heart just finds peace.

Its not perfect, I mean today we tried to park our wheelchair adapted van in Whitby and it so didn’t happen, besides people deciding they fancied dicing with death crossing roads, today we just could not find anywhere to park our big van that allowed us to get Daniel’s chair out. So after a rather stressful (husband) drive around the town we gave up and decided to take Daniel to Staithes the little seaside village where Old Jacks boat was filmed. The information we read told us of the lovely harbour, the beautiful quaint cobblestone streets it forgot to mention the heart attack hill to the harbour. Holding on to Daniels chair for dear life as we went down the hill, returning up was well actually fine as I sent poor hubby up to drive the van down. It just wasn’t safe for us to push Daniels chair up the hill the gradient was so high it would be an extreme risk and thats my excuse and I am sticking with it. Also Old Jack’s boat wasn’t to be found. So as I was saying far from perfect but somehow it just felt different.

Full disclosure I am not a great traveller, especially now with Daniel. Anyone who is a parent of a child with complex needs will tell you packing for your child feels like planning an army mission. You cannot just wing it because the things you need cannot just be picked up at the local shop whilst you there. Medications, pads, feeding supplies, formula, syringes the list is endless. This is all after I have done my recognisance on the area, where is the local hospital, will it cater for my child, is there a specialist, PICU etc etc ? The worry of making sure I can keep Daniel safe does weight heavy but again full disclosure he is so worth it all. But yes it does impact on my desire to travel. My girls used to joke I had to say “I wasn’t going” at least three or four times before we finally got into the van. I personally blame them I mean essentials for a weekend away does not mean you need 8 pairs of shoes, also underwear is a must.

Anyway back to my title of this post, its 2am and I cannot sleep yes the heat isn’t helping, yes the desire to suffocate Alan for his snoring is strong but mostly my soul is restless. It’s a weird feeling like I am supposed to be doing something but I just don’t know what. I feel a tugging at my mind telling me something but what it is saying is just out of my hearing.

Does any of this make sense?

I am not sure but for some reason I think change is coming. I don’t feel anxious about this change which is a miracle in itself, but I do feel itchy as if I am ready to get started. Maybe it’s Yorkshire I mean they make the best tea here so I definitely could believe its a county of change, vision and hope.

I am just going to try and get some sleep and see what tomorrow brings. Whatever the sunrise brings with it I will try and be thankful and stay hopeful.

Sleepless in Yorkshire in the middle of what is yet to be.

Desperate

I woke last night screaming, somehow my sleep had become a time machine and I was there again in the hospital begging my child to wake. Desperate to see her chest rise again, begging the Lord to save her.

How can 12 years just disappear in a moment?

Yet I know in grief, time is only my enemy.

I miss my girlie so much, how I wish I could just hold her in my arms once more, to just breathe in the sweet smell of her hair.

Grief is a complex devil, playing games with your heart moment by moment, memory by memory.

Does it ever end?

Only with eternity I guess.

Oh I never knew the heart could survive such pain. The crushing weight becoming bearable against my wishes.

I don’t want to sleep again, I had to leave her once I’m not sure I could do it again.

Why does your memory invade your dreams?

Is there nowhere free from grief?

I couldn’t pretend for a while, I could not create the facade of being ok in those darkness hours. So I let the tears fall and as my whole soul hiccuped through my body I allowed myself to miss her.

I let the memories swarm my mind like a tapestry of bees as they create their honey, I created my moments again. I held her in my arms, I heard her sweet giggle of mischief on the symphony of the night and I breathed her in deep and I sobbed.

I still don’t understand why I had to lose her, why Rett Syndrome had to win the battle for her life. Yet I know it wasn’t for the lack of love. My Livvy, their Livvy, your Livvy was loved with the depths of so many hearts.

If love could have saved her life she would be here.

No the question still stands unanswered, our hearts still forever broken.

I couldn’t breathe anymore the tears had tore my soul and I did fall into an exhausted sleep.

I wake still desperate to hold my daughter once again.

The new day begins,

I trust, I breathe and I hope.

Until we meet again my beautiful girl, until.

Joining in again with five minute Friday, set your timer for five minutes and write.

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.