Honestly I am at the end of my patience with myself, it seems I don’t know how to do down time. I don’t enjoy lazy hours and resting has a purpose to a certain extend. Everyone is telling me this is my time to relax, work on myself, grieve and any other chill out term there is out there.
I get it, Ireally do, I’ve faced a lot over the last few months, but I thrive on being busy. I get fulfilled by creation, by doing a good job, my being successful. The downtime has now turned into pure boredom.
I need a job desperately.
Financially of course I need to pay bills but more than that I need to start rebuilding my identity. It may not be what I had wanted, but I have no choice but to start creating the new me. I truly believe that there must be a purpose to my life and whilst I did believe it was Daniel and it was for a time, but now Sara has to redefine her life and work for me is a major part.
Interviews are scary though I will admit, I mean it’s been over 12 years since I was last interviewed so it is rather strange. I know I have the knowledge but the experience is really holding me back. I’ve achieved a lot in my lifetime but it’s hard at times for people to see this and often harder for me to evidence this.
Also my husband keeps making suggestions about me cleaning the house and cooking his tea for when he comes home from work. I seriously thought that old chestnut had moved on. Domestic goddess I am not.
All I know is that I’m hoping and praying that the interviews pay off and I get a job. I want to be occupied, I mean my days are endless right now. I want to have something to achieve again. I want to get tired by something rather than my own tears. I want to make Daniel and my girls proud. I want to be proud of myself.
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.
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.
Ok ok I’ve made a rookie error. You know this grief business, well you would think I would be be an expert. Losing three children, one would assume I would have this grief journey down. I wouldn’t need the map or sat nav; this journey should be set in my sub conscious, innate directions.
So why oh why am I finding myself trying to rush through to the end. You know the part where you find some acceptance and maybe a little peace. Come on Sara you should know better that this, there are no short cuts and no quick way through. There isn’t even a toll road that costs you a fortune but cuts out half of the journey time. Nope, no chance,not happening.
No matter how much you don’t want it to the pain of grief has to be lived, the reason why is simple , we love.
Right now it’s perfectly ok and right for me to be lost in the pain of losing Daniel. It’s correct for me to find every breathe painful in missing him. My tears should fall and my heart should be broken because I loved my beautiful boy, I love him, desperately.
Changing the sofa around, painting the walls even maybe putting his toy box out of sight may be what I need to do just to calm the waves but a fresh lick of paint won’t erase the memories of Daniel giggling on the sofa, holding him on my lap, snuggling into my chest, nothing will.
There are no short cuts in grief. What is it the Going on bear hunt book says “you can’t over it, your can’t go under it, you have to go through it”.
I know why I’m trying to push through the pain, the truth is I’m scared I won’t survive it. I survived losing Livvy by the love and need of her sisters, I am truly scared I’m not strong enough to survive losing Daniel.
I’m actually really scared of this darkness I feel.
My whole world changed with Daniels death, my identity as his mom, his carer, his nurse, physio et etc all disappearing with his last breath. He was, my purpose, my joy and my reason. My life was planned with him, I still cannot comprehend a life without him. It’s like my mind just won’t go there, a robot stuck moving back and forth “I just can’t compute, I just can’t compute”.
Oh gosh I’ve sat here thinking how better it would be to be a robot with no feelings, no emotions, no grief ; yet I wouldn’t be happy. I’m a person that feels intensely, if you are loved by me, well you get loved my me. I don’t do half measures. I tell myself I will protect my heart again and again but if I had of done that then I wouldn’t have had the gift of Daniel. I got to love and care for my boy for 6 years, I got to wake up knowing cuddles awaited me, that smiles that would fill my heart would bless my day.
I have spoken and walked through child loss with a number of people over the years ( too many ) and the one thing I tell them is it’s ok to feel broken, it’s ok to feel the pain, because you loved. Give yourself time and to be kind to yourself. This wasn’t how life should be.
Missing someone you love will never be easy and it shouldn’t be. This pain, this agony that I feel now it’s worth it, because I got to love Daniel and if I had to live this pain all over again for just one more moment with my boy I would do so.
So right now all I have to do is be, to be whatever I need me to be, to hold on and allow myself to grieve. There is no rushing grief, it sets it’s own timetable just like love does, as it should because grief is the love we cannot give and I love Daniel intensely.
Give yourself time, be kind to yourself, the pain will ease. I know people mean well and I love them for it, but in all honesty I don’t want time, I don’t want to be kind to myself and the pain, well shouldn’t I always feel it? They say that grief is the love we cannot give so this agony feels right,
As it should be.
I know I’m not helping myself but right now I don’t want to. I’m missing Daniel with such an intensity that I can barely breathe. Everything I see, every room I walk in his absence is suffocating. Everything reminds me of him and how my heart is forever broken missing him.
I just want to scream at God to bring my boy back.
Please.
If you have a faith the pain of losing one you love often lands you in two camps of thought. The first is closer to God, you feel him closer, you find your comfort in his promises. You know that Jesus catches ever tear you cry. You know with a certainty that you will see you loved ones again.
Or the second camp, you are angry, so angry that you cannot believe God had taken the one you love. You tell yourself you cannot believe in a God who does this. One who is all powerful but didn’t save the one you hold in your heart. Faith becomes lost in the pain.
For me I think I’m actually going to make a camp number 3. One where I love God and I know Daniel is with him but one where I really am angry that he didn’t save my son. How or why is my beautiful boy gone from me.
I was thinking as I was writing this that often people speak of a curtain between us. That to trust that Daniel is still close to me and it’s only a curtain that separates the living from those gone before us. Yet I often thing of the scripture when it tells what happened when Jesus was crucified that the curtain was torn in the temple. I want my curtain to be torn. I want Daniel to be here not behind a curtain or in another room, I want him here in my arms.
I want that curtain torn down.
I want to kiss the top of his sweet head and I want to feel his heartbeat next to mine. I want to hold him in my arms once more. I want it as it should be.
I want
I want
I want.
Please
“At that moment the curtain of the temple was torn in two from top to bottom. The earth shook, the rocks split. “
Ouch it hurts, an email, a simple email has left me sobbing into my pillow. No names nothing personal so why am I so heartbroken? I will tell you why, it’s because of what should have been.
Let me explain I opened up my Email and clicked the first one it’s become such a second nature thing to do I didn’t even check before I opened. It was Fatface the lovely, gorgeous brand Fatface telling me all about the new collaboration between themselves and the Marine conservation society. The email says something like ( I deleted rather quickly) “let your little one help save the seas”. Well along those lines, it was hard to read through the tears.
You see Daniel loved nature, he watched documentaries from Steve Backshall on the sharks and he got so cross at the damage we were doing to the oceans and even his Easter bonnet design was going to be a Save our Seas one, complete with plastic rubbish and a trapped turtle. But we didn’t get to make it and unfortunately I won’t be getting to buy him these clothes and support this fantastic cause. So I cried and to be honest I’m still crying. Seven isn’t enough time and no matter how thankful I am for the years we had together, they will never fill the void of how much I miss my beautiful boy.
So here I am sharing this campaign not for any obligation and I’m not working with the brand but because I know Daniel would want me to. Take a look and if this isn’t your thing or isn’t suitable for you just remember we can all do something simple to help save our oceans and do it for Daniel because Daniel was and always will be my little eco warrior.
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.
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.
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 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.
Rebel with kindness 