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.

Another first

It is said that when you lose someone you love the hardest moments are the firsts. The first day without them, the first birthday, the first Christmas and the first holiday.

This is my first holiday, first without any children and most heartbreaking the first without Daniel.

The sun shines above me, the waves lap gently at the shore, the birds fly above me. Yet all I feel is this emptiness, the longing.

Longing for my boy.

I’m trying to tell myself he is with me, as I walk across the shoreline, he is with me. As I watch the birds circle the sky, he is with me. As I laugh when the sea gulls pooped on Daddy he laughs with me. Yet pretending is often as painful as the reality. I try to imagine him listening to the waves, feeling the wind as it blows through his hair and his smile, oh his beautiful smile it lights up when he hears the birds in the sky. I’m trying but I’m failing, it hurts so desperately.

I walked into a shop the other day, I saw this beautiful jumper covered in sea life. I found myself searching for a size 7-8 years and the jumper was in my hand before reality hit. Oh how I cried, sobbing in a clothes shop another first for me, but for that spilt second Daniel was with me. For just that moment life made sense once again. Yet the truth fell upon me as the tears fell from my eyes.

Oh my heart I miss him so much.

Alan and I are so lost, finding things to do is easy but it shouldn’t be. I should be checking out accessibility, places to change Daniel and so much more. It took me no time to pack, that isn’t right and our car wasn’t bursting at the seams with equipment and medications. It’s all wrong and I just don’t like it.

I’m honestly tired of people telling me “it’s our time now” the assumption that we didn’t live as we cared for Daniel. The truth is far from that, we lived fully due to our gorgeous boy. We saw the world in more detail as we described it all to Daniel. We got to see the beauty in nature. To hear the dancing tunes of the wind. I don’t care for this new life at all and I feel I never will. This wasn’t my choice, this is far from the reality I dream off. This is painful, an agony in the missing and so very strange. I’m so lost in the surroundings that once were so very familiar.

“You can do all the things you wanted to do” no I can’t because my plans, my dreams all involved Daniel. Yes I could go do them but they won’t be as I wanted them to be.

Different and wrong, broken in the missing.

So as I watch the sunset I try and embrace the beauty. I try to give thanks for the time I had with Daniel, I try because I’m not there yet. I’m so thankful but it wasn’t enough. No where near enough.

So as the sun disappears into the ocean I breathe deeply as I face another first.

My first sunset without my beautiful boy beside me.

Another heartbreaking first

Another first without my beautiful boy.

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.

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.

On the cusp

Wow what a feeling as we wait on the cusp of a new year. The feeling of trepidation, the tenderness of maybes.

I’m sure you can all think back to March 2020 when we first went into lockdown. That feeling of temporary, if we do this now in a couple of months we will be back enjoying life to the max. Well I guess that wasn’t to be, 2020 was a year of sacrifice. Sacrifice from the NHS, delivery drivers, care workers, shop workers all the key-workers, they showed up so we didn’t have to. It was a year when we celebrated them, thanked them and was grateful.

Fast forward to 2021, the year I like to describe as our countries toddler year, tantrums were thrown, toys flung out of the pram. Rule breakers patting themselves on the back and lies spewing from those in power like a child on the waltzers after candy floss. It was a year of divisions and more sacrifice again from the doctors and nurses and the incredible NHS. A year of selfishness from those who assume they deserve to break the rules, that were there to protect all. Those that don’t care beyond themselves.

Yet and for the most part it was a year we had hope, the vaccine was created (thank you scientists). We had a way to protect ourselves and those around us. Yes some have decided that they don’t want the government to track them ( I mean they declare this whilst holding a mobile phone in their hand but hey ho) but for the most of us we celebrated a way to protect those we love. To protect the free and fantastic NHS service we have and try to have hope for a brighter future once more.

So where are we now, as I said before on the cusp, omicron has felt like a punch that is delivered to the back of a fighters head after the bell had rung and we were returning to our corners. Normality felt in our grasp then wham here’s another variant to add to the growing Covid 19 vocabulary. It sucks but again the hope is there in the science, can we just say thank you again to the scientists.

I have no idea what 2022 is going to look like, I pray that the vaccine rollout for vulnerable 5-11 year olds happens swiftly. I pray that the NHS and the care system gets all the support both financially and morally that it deserves. I pray for a new normality, one that has taken the lessons of the pandemic on board.

People matter not things.

Time is not guaranteed so love hard.

Gratitude is free, kindness is free.

We are more than the jobs we do, the money we make and the places we travel. We are more creative than we realise and hey maybe a few of us can now bake bread.

In all seriousness, we have all faced some mental battles, show me one person who hasn’t throughout this pandemic. If normality is ours again let’s not lose what we have learned in this time. Let’s not waste the painfulness, I mean growing pains hurt.

So as we ring in a new year, let’s go quietly in 2022 with hope, gratitude and kindness.

I wish you all a happy, healthy 2022.