Tag: covid 19

My son wasn’t a acceptable loss.

On By rebelwithkindnessIn Uncategorized1 Comment

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.

It’s to hard

On By rebelwithkindnessIn grief, Uncategorized3 Comments

When I started my first blog in 2008 it was to share my life as a mom to four amazing girls. My third daughter Livvy, had a neurological disorder called Rett Syndrome. I wanted to share how life with a child with disabilities was hard but also one full of joy. Well as the irony of life is that joy quickly turned to sadness when I lost my beautiful girl to a rare virus that happened due to her disorder and my heart was broken into pieces. It was then I was ready to close down my online space and disappear into the pain of my grief but I was encouraged to share my heart, to share my pain in hope that maybe it would make others facing the same thing feel less alone. This is what I did and I have many moments that I’m so grateful that that’s what I chose to do.

Over the last 6 years the story of my life on these pages was changing, yes I was still grieving for Olivia but through the presence of a special handsome little boy my life began to fill with joy, with laughter and with hope once again. Daniel entered my life, an emergency weekend placement that became my forever son. My beautiful, beautiful boy. Yes he had his mega list of complexities but more than that he had a smile that blessed my heart and a cuddle that made me feel whole again.

Yet I didn’t get to feel whole for long because on my 46th birthday my heart was tore to pieces once again. On the 27th April 2022 Daniel went home to Jesus. The virus known as Covid 19 claimed another life., it stole my beautiful boy.

I have no idea what to do now, my purpose has gone. When Livvy died her sisters were so much younger they needed me. This time they are adults and in fact I really need them. You see I’m lost, I’m hurting and in all honesty I am broken. I have no idea or desire to do this life without Daniel. Through the Grace of God I survived losing Livvy but right now I have no idea how to survive this pain.

Daniel needed me in a way that allowed me to be free. To allow my heart to live its destiny of loving hard. Daniel taught me how to use my voice and to advocate for him and all children with disabilities. To not hide any more but to shine in loving him.

My light isn’t shining now. I am so very lost. Do I return back to these pages and share my heart once more or have the words already been said.

Will the story read too familiar?

I have no idea, I really don’t. How do you journal the lost of another child? Do I really or should I really put words to the devastation I feel? Will putting them out there for others to see blow back at me. I do not know.

All I know right now is that I’m so very lost, I don’t know my purpose anymore and my heart, well it’s forever broken.

I miss my gorgeous girlie.

I miss my beautiful boy.

This life is too hard.

On the cusp

On By rebelwithkindnessIn UncategorizedLeave a comment

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

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

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

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

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

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

People matter not things.

Time is not guaranteed so love hard.

Gratitude is free, kindness is free.

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

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

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

I wish you all a happy, healthy 2022.

Holy cow it’s March

On By rebelwithkindnessIn UncategorizedLeave a comment

Well hello March, what happened to January and February? Oh that’s right Sara you got lost. Lost in sadness, lost in anxiety and lost in defeat.

2021 started wrong, I’m sorry but I survived 2020 by patiently waiting for it to end. Pretending that it’s ok, hiding in a false facade of a comradery of equal suffering. “We are all in this together” “if everyone looks out for another” “we can do this”.

What bull that was, whilst some were hosting garden parties or indoor raves I was still locked behind my door scared to breathe deep.

So 2021 you need to behave, I have no more inspiration for homeschooling. I don’t want to talk to my husband any more and as much as I love Daniel I need sleep and I really really want to hug my daughters.

I cannot pretend anymore and that’s ok but unfortunately in my brain it wasn’t. So January and February I did my familiar act I locked down. I couldn’t disguise my sadness any more so I hid. I found my anger at the injustice of the forgotten vulnerable had started to warp my life view, jealous of others park walks none the less. Shopping trips envied to the point of stupidness I mean who cares that Asda has a new bedding range.

I did it 2020 I survived you but 2021 you need to play fair.

I’m broken…

I’m not asking for a lot, I have no desire or money to travel (lockdown for foster carers didn’t fit the furlong scheme). Just to walk along a beach to feel the freezing cold of the British sea on my feet. To take Daniel to the local farm where he can indulge in his cow stalking behaviour to his hearts content. To eat in a restaurant where someone serves me and washes up.

I want to hold my daughters tight, to be there physically if they need me. To watch Daniel be held by those that love him as we repair his attachment bonds and remove his fear of rejection. To start his therapies again and to do all I can so he gets to live the fullest of lives.

I want so much to be there for my friends, to drink coffee, babysit whatever they need. To be able to hug them when they cry, to be able to listen without being out of reach behind a screen.

I want to people watch with joy again. To be able to see those around me without fear of infection.

I want to not feel so angry, so lost.

2020 I survived you, 2021 behave.

What if you are wrong?

On By rebelwithkindnessIn UncategorizedLeave a comment

Right now I am tired, tired of the opinions of those who think they know best. Tired of armchair experts ripping apart years of work and dedication from scientists worldwide. Tired of hearing ‘Liberty over life’.

I guess you could say I’m tired.

The thing is it’s ok, it’s ok for you feel this way and to have this opinion, I celebrate free speech at its best. Still free speech doesn’t come without consequences and right now all I can see is free speech at its worst.

I was once told by a Doctor “what if”

I was apologising for being a little over anxious with Daniel. For getting him checked out a little early than needed. Only for the Doctor to put his hand on mine and say “what if”. What if you hadn’t of brought him in and it was that sodium issue you feared, what if those chest noises was pneumonia, what if, what if.

So right now everyone and their dog, parrot, chinchilla has their opinion on Covid 19, it’s a myth, a government conspiracy, something we just have to learn to live with. All things I definitely disagree with and to what I answer “what if”. Yet what is really bugging me now is the false propaganda of the vaccine “Beam me up Scotty” being only one of the few theories I’ve heard. I again question you “what if?

Now don’t get me wrong I’m not telling anyone they should get the vaccine, my personal opinion is ‘get in the line’ but my decision is mine and I was so grateful to receive mine a few weeks back. Yet if I am asked by another for advice I point them towards the experts, the scientific community who have dedicated their lives to the study of diseases etc. People who know their stuff. I’m not an expert.

Yet I am finding myself seeing so many people on forums, Facebook pages , seeing parents especially being attacked for their decision to vaccinate and want to get their child vaccinated. Again I cry out “what if”. What if the fear of your judgement stops that person getting vaccinated and they then pass the virus on to their family. What if Grandpa Joe cannot fight the virus, auntie Katie, cousin bill etc etc.

What if.

What if people start listening to the pseudo science of false theories and harmful articles spreading it to the extent that more lose their lives “what if”.

I love this world, our creative, imaginative, far reaching minds. The uniqueness of each of us is to be celebrated. Yet please, free speech is not free if it causes harm to others. I don’t challenge your opinions, they are yours to own what I do challenge is that before you spread them far and wide you ask yourself What if.

What if .

Grief

On By rebelwithkindnessIn Uncategorized9 Comments

I am beginning to wonder if someone within five-minute Friday is reading my heart as the word choices over the last few weeks have cut close. At first, I feel shocked but then wonder if God is reminding me that hiding is not an option and that it’s also not healthy. How can we process emotions when we don’t acknowledge them? Yet ‘grief ‘I am not sure if this is an emotion that can be processed ,its definitely not one that we can work through, well its one I haven’t personally worked through and the end well I’ve come to the conclusion that the end of grief is heaven. 

November is one of the hardest months for me and this year has been no different, I have to face the anniversary of my daughter’s death but also this year has brought so much pain my heart aches just thinking about it. 

Yet I know grief isn’t just synonymous with death.

noun

keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.

a cause or occasion of keen distress or sorrow.

Right now, the world is lost in grief, many of us cannot see past the what should have been’s, the normal, the plans being cancelled, people we cannot visit and I know it’s hard. As one who has faced a lot of what should have beens’s I get it. I did not expect my child to be born with a severe neurological condition, I didn’t expect to not be able to travel due to illness, to spend birthdays and new year’s in hospital.

I did not expect to lose her.  

I have faced so many of what should have been’s. 

It’s hard. 

Yet sometimes “what is” can be rather special, 

No, I did not ever imagine having a child with a devastating condition, it never crossed my mind at any point. Yet she was one of the best things that life has ever blessed me with. I learned through her that life was to be lived for the moment that the reality is we are never promised a long duration, so we need to live in the present. We need to focus on the here and now and celebrate the moments. 

Expectations can be exciting, but they can also bring restriction. Sometimes we have to let go of what should be and celebrate the what is. 

Grief is hard and for me there is no earthly end, but I will never lose sight of the gift. 


“Grief, I’ve learned, is really just love. It’s all the love you want to give but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.”


― Jamie Anderson

If you are grieving now hold on to the why. The wonderful people you miss desperately but love so hard. 

Focusing on the blessings isn’t easy and grief sometimes become a curtain which hides the gifts from us. But try, try in this season to tear back the curtain and celebrate the moments that made the memories and appreciate the memories yet to be made.