I sit in my living room and it’s so silent, no dogs either snoring or trumping. No cat making weird sounds behind my head and no husband watching endless episodes of wheeler dealers. Silence this is my new normal.
So much has happened since I have last wrote here, my marriage has ended and I am finding myself both heartbroken and relieved at the same time. I will always love my husband but after so much brokenness and so much pain we cannot connect as we used to. It’s devastating but it’s true and I just have to move forward, moving with a heart so full of love for the last almost 27 years. I may have lost a lover, I hope I don’t lose a friend.
My life feels so strange right now, I’m still in so much pain from the loss I have faced, my heart still aches from the missing. Yet light is slowly creeping in and my weary mind is starting to feel awake once more. Navigating this new life is going to feel lonely at times but I would rather be lonely than alone in a relationship.
I’m not going to say that life is easy it isn’t, but I’m starting to feel the grit in my stomach start to rise. I can feel determination start to strengthen my spine and hope, oh wonderful hope, oh how I have missed you is now warming my soul.
My house may feel empty with echoes of memories of the past, but it’s nearly ready. Ready to welcome in new life, new love and a hell of a lot of laughter.
They say it is better to have loved and lost than to never love at all and I completely agree but I also believe love is not lost. It’s tender memories stay with you for your lifetime and your hopes and dreams aren’t gone they just have to find a new road to travel.
So here’s to new roads and a to many more memories to be made.
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.
I will let you in on a lesson I’m finally starting to learn. It hasn’t been a quick discovery I’ve had to wait until literally my body has betrayed me. The lesson is “Grief will find a way.”
It doesn’t matter how full you make your day, how many distractions you can find. Grief it’s a slippery emotion it either finds a crack in the armour or it simply bashes it’s way through.
I lost Daniel the end of April so I do accept it’s not been a long period of time but the truth is I feel like I did that day. Although others reassure me I don’t feel or see any growth. I’m broken and now my body has crashed so badly that I now cannot even find the energy to pretend.
I’ve been so poorly the last week or so, it started with vertigo, then an ear infection now issues with my Blood pressure and sugars. Now yes they all could be tied into my infection and my autoimmune condition but my GP believes that grief is playing a big part in my physical health.
I’m exhausted, from the moment I open my eyes the pain overwhelms me. I’m not waking to do Daniels medicine, I don’t have to turn off the pump. I’m not going to get that cheeky smile when I say “good morning”. Those are moments lost with my beautiful boy and before some tells me I have memories I know this but they don’t come close to the real thing.
I’ve tried to become someone else, I do enjoy my job and I want to be a super efficient employee now I’m off sick and just feeling like I’ve let the world down. I just cannot fight this infection, this exhaustion to be of any use.
I have so many presents to wrap even though I’ve cut down so much this year just looking at the piles it overwhelms me. I know I need to make more of an effort but it’s just not the same anymore. The tree is in the house and half way done but it still doesn’t feel right. I’m also hoping no one requires food over the holiday as the cupboards are bare and I just don’t have the energy to food shop.
Anyway back to grief, well it’s not like we ever left it but you know what I mean. Grief is a tapestry of emotions than come together to create an image of the missing. Every thought I have is a memory of my beautiful boy. My therapist tells me I’m grieving hard because I love hard and I know she is right, yet it’s scary at times. The overwhelming feeling of being so lost. Feeling empty, not recognising my own life.
But I guess I have no choice but to feel, hiding away doesn’t help, grief catches up with you. It grows in the denial. I just miss my beautiful boy, I just miss holding his hand in mine. I miss my arm aching from holding him whilst he sleeps. I miss his mischievous smile, I miss his voice as he shouts over my TV programme. I miss who I was when I was so blessed to be loving on him.
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.
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.
I’m getting tired of unwanted opinions, you know the ones. I’m chatting on social media, which a quick side note, does not give people free range regardless what some trolls believe, you are responsible for your words in real life or online.So when someone feels the need to tell me I’m wrong. When someone feels the need to tell me I’m grieving all wrong. Erm what the hell?
I was chatting to someone about the realisation I’ve had about why I cannot or will not fill all this extra time I have in my life since Daniels death and how recently with help I have finally realised that it is because the only thing I really want to fill my time with is my beautiful boy. My reluctance to go back to familiar places etc is because my boy won’t be with me. It wasn’t and isn’t guilt about moving forward ( I know Daniel would want me to) but simply me just wanting my boy back and refusing consciously or unconsciously to accept that he won’t be coming back. Maybe it’s the anger wave or the refusing of the acceptance one but no, I’m sorry I don’t want to go shopping or for a walk because I want to be sitting down cuddling my beautiful son watching the Yorkshire vet. Right now I cannot even watch the programs we used to share because I’m broken hearted and damn right angry that he isn’t there.
The thing is this realisation was something I needed and whilst what I was doing wasn’t wrong (in grief nothing is wrong) it’s not healthy for myself and for those that love me. Also the reality is Daniel cannot be with me right now so how long would I hold on to this dangerous hope and what and how will my mind cope as time goes on. I have to find a way to live life with Daniel in my heart and mind just not here physically.
Anyway the opinion I got was “I’m doing it all wrong” and the person helping me realise this was wrong too. Now I would never tell anyone how to grieve but when someone firstly wasn’t asked into the conversation but secondly who has not walked my journey has an opinion that makes me out to be wrong, well that does make my blood boil.
Now if I was saying “let’s go out and party and forget all about Daniel because he is dead and he doesn’t matter anymore” I could understand a little but what I was saying is that I need to realise for my own mental health that no matter how many invitations I turn down, or places I don’t visit or even programmes I won’t watch I cannot bring Daniel back. This really sucks and it hurts like hell. But in this crazy waiting period I’m aware of damaging relationship’s and hurting the ones I love, whilst also losing myself into to darkness. Because you know what whilst my grief is individual to me I know I am not the only one grieving my beautiful boy. Would I want to see his sisters give up on life, would Daniel, of course not.
So I guess what I needed to realise is the why behind the no’s, the fear that I felt regarding acceptance. Was it that I felt guilty laughing and having fun again without Daniel, answer to that is no. Daniel brought me joy and I know he would want me to continue to find joy, especially in the things we shared together. Was I just so sad that I couldn’t face these things and if that’s the case should I be seeking further help? For me the answer was simply (not that simple) I was place holding. You remember when we were kids and we would hold a place in line for our best friend, well I was holding a place for Daniel. I wanted him back and I was holding this space until he would be there. I wanted him back more than anything and I was so angry at life that I was refusing to fill the place where he should be. I don’t want to do this or that, I want Daniel.
Whilst that may sound like spoiled brat behaviour it’s grief and I think I felt that if I accepted, if I accept his loss I would lose him completely. But the harsh truth is I have physically lost him and I do have to accept this but I will never really lose him. Not whilst my memories hold him, whilst my heart still beats to love him. Love isn’t constricted by the physical realm.
Deep, crazy thinking which I do hope I am make some sense explaining.
So I guess the thing about the unwanted opinion is those words shared at me, were firstly ignorance, because I’m sorry without losing a child you have no idea how it feels. It’s not like losing your parents, sibling or pet (all completely valid and painful I’m not taking away from that) but losing your child the one you thought you would outlive, the one who you had dreams for, the one you raised, cared for. The one who holds your unconditional love it’s different. So whilst I will happily take thoughts, gestures and love unless you have walked this journey I will not accept someone telling me I’m doing it wrong. Grief is a journey and whilst many will walk through similar stages grief is unique to the individual. Heck it’s unique to both the individual and the one you have lost. I mean I thought I knew grief when I lost Livvy but this journey of grieving Daniel is completely different. It should be, I had a different relationships with them both, Livvy and Daniel were different people and my life looks different now and of course I’m different. I’m not the same person I was in 2008 who would be?
I am in no way pretending to be an expert on child loss and grief and to be honest I’m rather p*seed off that I’m having to live this pain again. Believe me, Jesus and I have had words. But I do know me and that means I know how my brain works and what it needs or I know (in this case) to find someone who will allow me to walk through this with support and guidance and patience to allow me space to work through it. I am well aware I’m not a easy person to walk with at the best of times, if there was an Olympic sport in overthinking I would be gold medalist for sure. But even if I was making a complete mess of my journey that’s my mess to create and unless you are pulling me from the edge of the cliff don’t you dare tell me or anyone that they are grieving wrong.
So back to opinions, look we all have them, I’m sure I’ve offered a few unwanted ones. The thing is I hope I do them in love or at least a shared understanding. Yet even when asked for advice on grief i can only offer my own experience. You see grief is unique, it’s mean and unpredictable and whilst it comes from love it often feels like hell. You have to live your own grief journey and I have to live mine.
Yet even beyond grief I wonder if In a world that allows us quick access to others. Where in a minute we can share our thoughts and feelings with others, what if we stepped back just for a minute or two and ask ourselves a few questions
1. Firstly am I speaking in love?
2. Do I have personal experience?
The main one should always be
3. Was I actually asked to share?
Maybe if we all did this the world and especially this online world would be a lot nicer of a place.
As for me I’m going to continue on my journey, I know it’s going to be messy, hard and painful I mean it’s life after all. Yet regardless of the pain I’m yet to face and the heartbreak that is right now ripping into my very being, I am so thankful. Thankful that I got the gift of loving my beautiful boy, so blessed to call the cheeky monster my son.
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.
Right I have to touch on a subject that is really starting to drive me crazy. I recently posted about my excitement regarding my new job only to recieve comments or questions regarding “should I go to work if I’m grieving?
Is it too soon, are you ready?
Maybe you should wait until you get over it?
I just want to be honest and tell you how I feel how I feel regarding these comments and this field of questioning. Firstly full disclaimer I truly do believe you all mean well…
But and I mean a gigantic but….
If I was to wait until I stopped grieving Daniel I would never work again because grief doesn’t have a time limit unless you count eternity as a valid measurement. So whilst there will always be tears and pain regarding Daniel I cannot wait until I’m over something that I’m never going to be over. Olivia passed over 14 years ago and I miss her daily, far from over it. Grief is a lifetimes journey.
Also can I just state that my husband returned to work and the comments he’s received have been “it’ll do you good” “good on you” “fantastic it will be good to keep yourself busy” not one comment saying should he not be staying off work and grieving, or it’s too soon. All I find remarkable because believe me his grief is as strong as mine and his heart is as broken. Is this a gender bias, the man has to be the provider, well you know what I feel about gender bias and discrimination of any form.
I know myself well enough to know what works for me, what I need and there is only so long I can sit in a pit of misery and missing without it consuming me. I need a purpose,(Daniel was the best purpose ever). But having a reason to get up in the morning is something I need in my life. I live to serve, to fight for change, to make a difference, this is who I am. I cannot change the fact that Daniel has gone, you don’t know how much I would want to, if love could have saved him he would be still in my arms but it didn’t and all I can do now Is to try an honour my gorgeous boy by living with purpose.
Also I need to be blatantly honest here, with the cost of living so high and rising how can I afford not to work? Daniels death did not stop my bills. No one is going to pay for me to sit at home and grieve it just doesn’t happen in fact the opposite happens, the day Daniel died any kind of money or support we were getting died with him ( don’t get me started on this). So I have to go back to work.
I cannot do sitting around,it’s just not me whilst I will always be grieving my beautiful boy I also know that I need to be moving, to be achieving and thankfully I’m entering into a field that I’ve wanted to work in for a long time. A field where I hope I can make a different. A job I hope will bring me the purpose I need. Nothing will change how much I am going to miss my beautiful boy, the agony of missing him is mine for a lifetime. The only thing I can hope for is that I can make him and his sisters proud and for me returning to work is now a step towards this.
If you had asked me this question in March or even April I would have told you I’m a mom, a wife, a foster carer so in fact I would have told you who I am to other people. All moments or roles I love to be but I couldn’t see me. As a mom to a child with complex needs to forge yourself something beyond this is hard and if you have achieved this go you. But I was content and so so happy just loving and caring on my beautiful boy Daniel. Losing him has broken my heart but as well of the agony of grief and the endlessness of missing it has also thrown me into a pit of discovery. I’m using the word pit because (A) I didn’t want to be here and (B) I am literally having to climb out.
I don’t remember not caring for someone, it’s been probably the most obvious trait to describe me for decades. Some people get described by their sense of style, their humour, their fiery temper, me I care a lot, I love hard. Not something I’m ashamed of at all I’m proud of my ability to love hard but I haven’t ever explored a life where I didn’t hold that role.
Well until now.
Losing Daniel has changed me in so many ways. My heart is broken and that’s not going to heal anytime soon but it’s also made me face a decision I could never of imagined before. How to stop!
How i need to care for myself right now, how my heart needs to heal. Obviously I’m not going to change over night and of course I have three amazing girls and some equally lovely partners of theirs to love upon. But this is a love that doesn’t have a need attached to it. They are all so beautifully grown and independent so I get to love on them without having the dependance. Right now I have no one depending on me and it’s scary as hell but yet I am learning it can be liberating.
Just want to put a disclaimer here and say that I miss Daniel and Livvy with every piece of my heart, every ounce of my soul and I would give anything to have them back in my arms. Oh my I would give anything to have that gorgeous boy of many faces smiling upon me again. Or the girl with the mischievous spirit making me blush as she flirted openly with any man she felt was handsome. I would give anything and everything.
But life hasn’t played fair and this cannot be and until I meet them both again I have to learn to live again, live again for them but also because I deserve to as well.
So back to the pit climbing, here I am on a journey where I’m going to have to learn to live a life very different from the one I had planned. Slowly but slowly I am making my way out of the pit, sometimes I climb up and the walls give in and I end up smack back down at the bottom again but I will climb and I continue to climb , I don’t do giving in, how could I after the inspirational children I’ve had the blessing to learn from.
Right now I am facing so many different experiences, emotions, situations and at times they can feel overwhelming and scary. After working side by side with my husband for over 15 years we are now both separating out into different career pathways. Alan has been working hard and pushing his boundaries for the last few weeks. I have watched him struggle, to grief, to push forward and to prove to himself that he can and I’m so proud of him. I have just had a conditional offer on a position that will see me working in field I have wanted to work in since I was teenager, so yes quite a while. I still in fact have to pinch myself that I am going to work in this field as it has been a dream of mine for such a long time but always felt just out of reach. Even in this pit I can feel the excitement and anticipation of this new role. Yes the excitement brings me guilt but this grief journey is a right evil it never plays fair.
So who am I?
I’ve decided that right now I’m a work in progress. I’m a grieving mom this will me for eternity but I’m going to still strive for purpose, for joy. I’m still going to try and make the magic in the moments, partly to honour the gift of Daniel and Livvy but also because I know that’s what they would want for me and it’s what I deserve. I’m going to care that’s who I am, loving hard is my set position I won’t ever apologise for this. I am proud of this and as a wonderful wise woman told me loving hard also means I grieve hard and that’s ok my beautiful children are worth my grief, my pain, my missing. I’m going to strive for purpose but in a way that it doesn’t consume who I am anymore. People will always be able to depend on me, but not be dependent on me. I’m going to live life in which ever way that’s looks like, I mean right now if I’m honest I haven’t got a clue. But maybe the unknowing is part of the journey, who knows. I am blessed to be surrounded by wonderful people who are ready and willing to pull me out of the pit over and over again. Friends that really want to hear my heart, family who love unconditionally.
None of us know how long we have left on this planet and I know and have experienced this only too well, but I’m going to live, learn and love.
As always here on the internet we come across and connect with some amazing, inspiring people but also some truly awful trolls that need to return under the bridge they came from.
These last months I’ve been very open in my grief, transparent and vulnerable, to be honest the only way I know how to be. Yet in my vulnerability I have come across a few that just don’t or choose not to get it. They seem to find it acceptable that Daniel died of Covid because he had complex needs. He is one of the few they believe are “acceptable losses”. One going as far to say he was going to die anyway, I mean how dare they ! There is nothing ok with Daniel’s death, there is definitely nothing acceptable about him catching Covid through the ignorance of others. His death is not validated by the percentages. His death is heartbreaking devastating and I and many others miss him desperately.
Disability does not mean less and in a world that supposed to be one of progression this archaic belief is shocking and one that’s so ignorant.
What if those who have trolled me these last few weeks take a drive out and end up in an accident and find themselves disabled, do they at this point become less? Would it be then acceptable for them to lose their lives to covid? Of course not, their value doesn’t change by the ability of their bodies.
Yet I wish that these beliefs were only those of the under bridge ugly society but the reality is there are not. Disability is still seen in a negative way, a less way. Parents fighting for their children to get the same opportunities as their peers, equal opportunities in career development and growth. Support, care systems all so lacking and don’t get me started on the fact that equipment and aids that would make a difference to a persons life are classed as not needed, beyond the basic requirements or my favourite (not) out of budget. We live in a country where is ok for us to fund the second home of our politicians yet we have people unable to leave their houses due to a much needed ramp being beyond budget for this year. Human beings being left in pain using ill fitted or outgrown equipment being told of a two year waiting list. Yes disability is seen as less, people with disabilities are not valued as they should be.
Equality feels like a myth.
So I guess I shouldn’t be surprised that some keyboard menace decided to break my heart with their apathy. How they could chose to say the death of a seven year old beautiful boy was acceptable.
Still what scares me more is this belief that Covid only kills the vulnerable, those with underlying conditions. The numbers show different, the lives lost show different, marathon runners, sportsman, dancers, armed forces personnel all have lost their lives to the evil of Covid. Until this recognition hits home and people understand that Covid isn’t discriminative, it doesn’t care who it kills the number will continue to rise and hearts will continue to be broken.
As for my heart well pieces of it are in heaven waiting for me. Until then I will continue to advocate and campaign for a world where people are valued equally. Where disability is seen as difference ( I mean who wants to be the same ) but not a burden, not less. As for the trolls I know they won’t ever disappear as the world is full of bitter ignorant people but I can choose to hold on to the fact that I am so blessed, so incredibly lucky that I get to call Daniel my son. I will always miss him desperately because he did and does matter.