Hello 2023

On January 1, 2023 By rebelwithkindnessIn UncategorizedLeave a comment

Hello 2023 I’m not not going to even try and say “Happy new year” because the words get stuck in my throat, I choke on the sentiment of new beginnings, a better time blah blah blah. The date has changed on the calendar and like everyday since April 27th I start it with the pain of missing my boy.

When I lost Livvy in 2008 the turning of the new year destroyed my soul, I truly felt like I was leaving her behind and couldn’t comprehend a year that didn’t have her a part of, memories made that didn’t hold her within. So I guess the irony of losing two children is I now know I’m not leaving Daniel behind in 2022 I’m bringing him with me. Just like Livvy I may have left his physical in 2022 but his spirit, his love, my Daniel will be in everything I do in 2023. Alongside his big sister they get to be my heavenly cheerleaders and my biggest inspiration.

Now don’t get me wrong I am not tying the loss of my beautiful boy in an imaginary bow of “all is good,” far from it. 2022 you have been a hell of a year and losing Daniel well there are no words it’s just wrong and so fucked. He deserved so much more and whilst I will never understand why I had to lose him I will never not be grateful that I got to be his Mama, I am his Mama.

So what’s the plan for 2023, right now I’m just sticking with just survival. I know I have to work on being healthy, not the lose weight, get active healthy (though this wouldn’t hurt) but feeding my body decent fuel, hoping to stop tumbling from one illness to another and just working on caring for myself a little more, “walk the talk” is what a friend reminded me gently this week.

I also need to work on my mental health, getting a later in life ADHD diagnosis came rather as shock to me but it had as allowed me to understand my brain more than ever and this is allowing myself to be more honest with my feelings. I want to continue learning more about myself and my likes and dislikes and to stop trying to play the roles I think others want me to play and find my authenticity. Not going to be easy especially with CPSTD but working with some amazing people has really allowed me to start understanding it’s ok to like what I like and who I am. Like I said it’s a journey and I am definitely still at the beginning.

I start 2023 in a new career, it’s a field I have wanted to work in for, well forever. I didn’t want to have to lose my gorgeous boy to find myself here but maybe he sent me the job from heaven who knows. I’m hoping that I can find my purpose again and make a difference still in the lives of others. I truly believe we aren’t put on this earth for our own gratification but that true joy comes from service and enriching the lives of others. So I’m striving for growth, development and hopefully success in changing lives.

I want to see the world a little more, live in the moment a little more and breathe deeper a whole lot more. For as long as I can remember I’ve lived only shallow breathing scared so much of what could go wrong that I forget to see what could go right. The irony of writing this after losing my beautiful boy isn’t lost on me. But I guess when you are already so broken the only way forward is healing. I don’t believe I could fall any further into the darkness right now so the only way forward is towards the light.

I have no idea if any of this will materialise, I’ve learned that life will be whatever it’s meant to be. All I can promise is I’m going to try to live to honour all my children my earthly and heavenly blessings. To live each day knowing I’ve made them proud and myself too.

Hello 2023, I’m not ready for you but I also know you are coming regardless, so here we go.

As for 2022 “fuck you”.

I stand with nurses

On December 15, 2022December 15, 2022 By rebelwithkindnessIn UncategorizedLeave a comment

I try not to comment on political issues anymore mostly because it often brings so much hate and ignorance my way that right now I don’t have the strength to deal with it. Obviously I do things offline to support the causes and movements I believe in, but opening myself up for the keyboard warriors I do tend to avoid.

Yet today I have to speak up, across the country the heart of our NHS system is striking. For too long the nursing community has been treated with such disrespect by our government that it’s heartbreaking but also it’s intolerable.

I like everyone throughout the pandemic stood on my doorway and clapped and banged saucepans to acknowledge the courageous work our NHS staff were doing throughout this incredibly hard time. I watched nurses that I know and love come home broken and exhausted. Blisters on feet, scaring on faces from PPE and isolating themselves from their own families to save others. Yet as the pandemic went on clapping on a Thursday started to leave me with a bitter taste in my mouth. Not because I don’t love and respect those in the NHS but because it felt like a façade. Whilst we the public gave thanks the powers of be were ignoring the cries for a decent quality of living, for protection of those that were caring for us all.

Last year I watched as the clapping and the giving of thanks for the NHS turned to a campaign of blame in the media and public gratefulness turned to public abuse and frustration in A &E ‘s and wards around the country. Also I have personally witnessed this contempt and abusiveness before anyone comes for me.

Being a mom of a complex needs child I have often found myself in the hospital with my late son. I have watched the level of care and compassion given to patients and their families by the nurses. I have seen nurses who are ending a 12 hour shift yet to have a break for a drink or food due to caring for a patient or literally covering the wards. Staff giving up annual leave to cover for sickness and so much more. This wasn’t just in the midst of the pandemic it’s was before and after and is happening right now too.

Something has to change, we cannot keep taking the goodwill of nurses to keep our hospitals running. Quality nurses are leaving the service in droves unable to feed their families on the wages they earn. Having to leave healthcare completely taking their skills and experience with them.

I’m also aware that this is not the only public service that needs investment but right now l can only speak on my personal experience and what I have seen within the NHS.

I stand by everyone of those nurses that strike today. I understand how hard this decision was to make as it goes against all you believe in. Sometimes though you have to make a stand and this is yours. I also know that this isn’t just about the quality of life for yourselves and families, I have watched you as you have cried at the standard of care being given to your patients due to staffing shortages and lack of resources. I have seen you in A & E apologise again and again as you are being abused by those waiting to be seen. I have seen the tears when you didn’t think I could see.

I stand behind you all and hope and pray that your income finally comes some way in par with the service your provide. I stand behind you as you fight to save the NHS from falling further into privatisation oblivion.

I stand beside you because I love and respect each and everyone of you.

Nurses have saved my life, nurses have saved my child’s life. Nurses have become my dearest friends and some incredible nurses have walked beside and held me when my world crashed around me. They have loved me, cried with me and miss my beautiful boy alongside me.

I hope this industrial action will only be needed once. I pray that change happens swiftly.

Please everyone support your nurses today, whatever you feel about delayed appointments, missed treatments these failings do not fall at the feet of our nurses. Please don’t buy into the illusion and before your swallow the rhetoric that we all have to give a bit right now for our countries sake just take a little look at the reality of this. Just look a little closer at whose wages are rising, whose employment benefits are vast and whose expenses are out of control. Believe me it’s not those that are holding the hands of people in pain this evening, it’s not those who are treating your child right now and it’s not those who are the bedrock of our NHS.

I stand with nurses, today and everyday.

Sign today and tell the government that you Stand with nurses too.

https://action.rcn.org.uk/page/113118/petition/1?locale=en-GB

Being thankful

On November 24, 2022 By rebelwithkindnessIn UncategorizedLeave a comment

I know I’m British and Thanksgiving isn’t our holiday but I will always take any opportunity to be thankful because if I’m honest I often find gratitude is one of my tools for survival. By being thankful I get reminded of the joy, not just the heartache. It’s easy to focus on the brutal and forget the beautiful. So today I do want to give thanks.

My heart is blessed and stands with the NHS although we lost Daniel to Covid I wouldn’t have had him for so long as I did without the care dedication and love he received from the Drs and nurses we encountered. Some of those people are now my dearest friends and while I’m not really part of the medical world anymore ( well besides my own dodgy health) I will stand by them as they fight for better pay and conditions. I can truly say nurses are the core of the NHS and without them it will not survive.

I’m thankful for fostering and for adoption for blessing me with one of my greatest gifts. Without these systems, so many children would not be loved and cared for. Again whilst I cannot stay in this world I am forever inspired and thankful for them.

I’m thankful for the probation service especially my team, working in this service for the last five months I have witnessed some amazing dedication to rehabilitation and hope and I’m not just talking about for those we support. I have been lucky enough to be blessed with a manager that I really respect and who understands my brain (not always easy) but also a team that have taken a broken woman and reminded her of what she still has to offer. To listen to me when I have my Daniel moments and hug me when grief overwhelms. This wasn’t a thing I wanted to bring to my new profession but grief, well it plays by its own rules. I am so determined to learn, grow and move forward in this service following the examples of those I work alongside.

I am thankful to some amazing people who have been working with me to heal, to honour my pain and also to celebrate my determination. How I love our deep spiritual conversations even when they keep me away thinking upon them. You are all so incredible .

Of course I’m so thankful for my family, we have faced more pain than any family should ever have to face yet we know and hold on to how lucky we were to have Daniel and Livvy of course in our lives. Again whilst our family life is so different we will rise from the ashes and remember and honour Daniel by living like he did with laughter and giving the best hugs ever.

My Daniel, how i will always be so thankful for you. My dear beautiful boy how lucky I was, I am to call you my son. You taught me so much and my heart misses you so more than words could express but I am trying to live as you taught me, authentic and vulnerable, these are the super powers you reminded me I had inside of me. I miss you my gorgeous boy.

So yes whilst I’m not American I am incredibly thankful on this Thanksgiving day.

Sometimes it’s good to take stock of our blessings and give thanks. Gratitude is good for the soul.

What are you thankful for today?

Doing

On October 20, 2022October 21, 2022 By rebelwithkindnessIn griefLeave a comment

How am I doing?

A valid question I guess but I don’t have a answer unless it’s ok to just say “doing”. I wake up each morning to a life I don’t want, a life that’s missing so much that it hurts from the first moment my eyes open. I’m trying to be better, trying to behave like life is still worth it, but right now it’s not. I hate that I feel this way, hate that I cannot find the old me who could find joy in anything. No that’s a lie, the old me pretended to find joy.

Faking is my superpower I guess.

I miss my beautiful boy, how hollow are these words, they just feel empty because the depth of my emotions cannot fit into the space of these letters.” Missing Daniel “ doesn’t really comprehend the devastation and the brokenness.

I’m living a life I had never planned for, it’s not a bad life, I like my job and I do wish to progress and grow but it’s hard to enjoy when the reason you are there wasn’t your choice. The reason you aren’t in your happy place loving on your boy wasn’t your choice. You,me, my life. How easy is it for me to feel like a spectator in my own existence. On the outside looking in, not consciously attaching myself to the weirdness of a world that shouldn’t exist, a world without my beautiful boy.

It’s normally about here where I try to reach for the reason, reach for something, or to somehow make it right but there isn’t any right. There isn’t any silver lining, if there are lessons for me to learn well the teacher can go do one, losing one child gave me the opportunity to painfully learn and grow, two has fucking destroyed me.

I don’t feel like there is a way back anymore, the Sara I was has gone, broken pieces are just left behind. Will those pieces come together to reform, knit together to create someone new, I have no idea. Right now they, no i am just broken.

Broken

Dear Daniel

On August 5, 2022August 5, 2022 By rebelwithkindnessIn Dear Daniel, UncategorizedLeave a comment

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?

On June 27, 2022June 27, 2022 By rebelwithkindnessIn Dear Daniel, griefLeave a comment

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

On June 1, 2022June 1, 2022 By rebelwithkindnessIn Dear Daniel, grief, UncategorisedLeave a comment

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.

On May 28, 2022May 28, 2022 By rebelwithkindnessIn Dear Daniel, grief, Uncategorized2 Comments

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.

“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

On January 1, 2022January 1, 2022 By rebelwithkindnessIn UncategorizedLeave a comment

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

On October 22, 2021 By rebelwithkindnessIn UncategorizedLeave a comment

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?