You cannot rush grief

On June 9, 2022June 9, 2022 By rebelwithkindnessIn Dear Daniel, grief, UncategorizedLeave a comment

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.

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.

Christmas present.

On December 23, 2021December 23, 2021 By rebelwithkindnessIn UncategorizedLeave a comment

I cannot believe it’s Christmas in a few days. I have struggled with Christmas for as long as I can remember without going into details I have finally started to understand how childhood trauma can create a fear that may not seem reality to most but to those who have PTSD can be often overwhelming.

This is me.

I’ve tried for so many years to create the perfect Christmas to break the patterns of fear in my mind and to make sure those patterns were never created for my children. I wanted their memories of Christmas to be filled with wonder and excitement. I believe for them I have done this for myself it’s still a game of pretend.

Whilst I love the illusion of Santa I have never played the you better be good card on my children. The gifts they receive on Christmas Day are those bought by those that love them. We honour the tradition of Santa but also we celebrate the birth of Jesus. Yet there is no guarantees on what will be under the tree, yes we have listened to your wishes but also it is what can be afforded etc etc. But for me it’s about teaching the children about the love of the season, not making promises I cannot keep.

I listen to my children and live to see their faces when they receive something that had mentioned a while ago, it’s not about the gift it’s about the being heard.

This Christmas I’m struggling, it’s seems fear is the only thing I’ve managed to wrap and place under my tree. My anxiety has been on steroids I’m so tired of being fearful. So fed up of the nightmares of Christmas past I really wish Jacob Marley would just past to the light and leave me alone.

Christmas spirt just seems to be further away then ever. Yet for some reason this year my acting skills have left me I cannot pretend anymore I’m broken. Please don’t ask me what I want for Christmas I cannot cope with expectations. I was working on them but that Covid bitch stole my progress along with everything else.

I just don’t want to engage with the excess of Christmas I just want to hold Daniel in my arms and read him stories, watch some Christmas films and just be. I don’t want the noise, I want the calm and the peace. I mean Christmas is the celebration of the birthday of the prince of peace so why shouldn’t it be tranquil and gentle.

What do we have to go big and loud?

Why does it have to be too much?

Why does it have to be so full of fear?

Covid of course has done a dirty again on the season along with Christmas carols came the rising numbers. New variants, new restrictions and a new dose of blooming fear. I mean can Santa even visit if he has to quarantine after every sleigh flight? Seriously though how can people build joy without knowing what will happen.

It’s sucks it all sucks.

Yet I’m going to try and fight back, fight through the memories and try and change my own thought patterns. Try to learn to love the season again. Maybe understanding and acknowledging the past will allow me to fully embrace the future. Obviously working hard on your mental health in the middle of a pandemic hasn’t been easy but what else do I do with all this down time it’s not like I’ve been able to go anywhere (yes there is bitterness there). Covid is like a dodgy ex you think he is going away but no comes back with all the extra drama, showing up when unwelcome, bringing chaos and pain with it.

Yet allowing myself to feel has been worth it, sometimes the memories and emotions have felt more than I can face, but face them I have and although I may have boxed a few for another or never time, I have learned more about myself than ever. I know who I am deeper than ever before. Which is a mixture of bad and good, I mean we all have things we wish to change about ourselves.

So I am going to enjoy Christmas not in the excess way of the tv adverts or holiday promotions say it should be but our way. I am going to curl up under a blanket with Daniel and so many stories to share. I am going to veg out on the sofa and watch Christmas films that are cheesy and full of hope. I’m going to enjoy good food without the expectations of fancy tables and decorated plates. I’m going to cook extra and bless my elderly neighbours with a Christmas dinner I hope they enjoy and I’m going to breathe deep.

I’m allowing the past to wash over me and build myself memories that are different. The past doesn’t have to haunt you, you are allowed to leave it when it belongs in the days gone before you.

So bog off Christmas past and hello Christmas present, please leave the chains behind you.

A trashy soap opera.

On April 21, 2021 By rebelwithkindnessIn UncategorizedLeave a comment

I was once told that my life was like a trashy soap opera that I was full of drama. I remember the conversation vividly, at the time my daughter’s diagnosis was official and I held the letter in my hand and on that same day I had also received a call to tell me my Nan had died.

The literal definition of a day from hell.

It was a defining moment for me as I realised at the that point that my pain was my own. That others could not or would not understand it. I felt ashamed for being a burden for bringing others down and for basically existing. It was the reinforcement of what I had always believed of myself, I was broken, I was drama, I was too much.

You see this was the narrative I had been taught, my emotions were my enemy, my empathy my foe and my heart well it was too emotional and too much.

How I wish I knew then what I know now. How I wish I could have just put the phone down on that call or even challenged the uncaring, unthinking compassionless attitude of the caller. How could a so-called friend see a life -threatening diagnosis and the death of a grandparent as a soap opera?

I mean how?

I have worked hard over the last few years, I’ve had to challenge the nurtured narrative of my life that “I am too much” into a more truthful one of “I am”.

I am a human being that deserves to exist, I am a woman who has faced heartbreak and loved hard enough to feel the pain. I am strong, I am powerful and I am a survivor.

My life has faced tragedy, pain and loss but I am lucky that I got to experience a life of emotion. To grieve means I have loved, to have lost meant I have cared.

Yet people are still so quick to judge others, only yesterday a conversation with a friend broke my heart. She is facing a tough time right now but feels she cannot be honest about how hard it is for fear of people thinking she cannot cope. As if feeling fear, exhaustion was a crime. I find it ironic that when someone has a physically demanding job their exhaustion is allowed, it’s ok, it’s understandable and often respected. Yet when people are emotionally weary they are judged “you need to pull it together, stop thinking about it, you need to be stronger”. A world where those emotionally struggling are seen as weak.

We need to show compassion not judgement.

You see instead of calling my life a trashy soap opera my friend should have been a place where I could admit how my heart ached for my Nan and how the fear of the future for Livvy my daughter was often overwhelming and she should have told me how proud she was that I still showed up. That in the midst of this emotional tornado I was still fighting to give my girls the best life I could.

She should have loved me through it.

Loved me in it and through it.

You see, the British stiff upper lip crap needs to end. People need to feel free to say that today is hard. People need to support others where they are rather than where they feel they should be. A end needs a beginning and a middle before it is reached.

Emotions are messy, they are often uncomfortable and can be hard work, but they are what makes us human. We should never have to hide our hearts. What I know now is that I need to surround myself with people who love me for my heart.

So if like me you often find yourself apologing for your heart stop, find your people, find those that love you as you are, find your tribe. It’s not about changing to fit in, you cannot live a lie. You don’t need to be anyone but you.

Be you, be proud, cry, scream and love hard, because you are beautifully and wonderfully made.

Connections

On March 31, 2017 By rebelwithkindnessIn Uncategorised2 Comments

I was sitting down last night wishing I could tweet anonymously so I could be completely honest with the world. That I could stop pretending that everything is ok and just be true. But then I realised that the whole concept of hiding isn’t truth.

Sometimes I find this world so hard to understand and to fathom. It’s as if people don’t want to see others happy and enjoy in hurting and harming. It often feels that the selfish need of one is always more important that the needs of many.

Maybe I am as I was once told too emphatic?

Maybe I need to find a way to switch of my compassion. Or maybe I just need to find a peace between my mind and the world.

Does that sound crazy? It could, but sometimes I feel as if I am from another planet. As if my connection to this world is weak and failing.

Oh my goodness listen to me, connection to the world how far out do I sound.

But let’s be honest, isn’t the connections we make in this world part of our own definition. We come into this world connected, a son or a daughter born to a mother and a father, connections. Are we a sibling, a niece and nephew. Connections form from the moment of birth without any really effort on our behalf.

Inheritance of birth is connection.

These connections are our foundation, what forms us. Whilst we may not follow or at times understand the beliefs, reasoning of our parents but it’s these connections that educate us to grow, to question.

Friendship forming new threads of connectivity within the world. School pals, work colleagues and so many more.

Some connections are brief and tenuous whilst others become lifelong and strong.

Yet every connection defines us in some way. The realisation that we are not alone in this world comes with what should be the realisation that we are also responsible for others.

Yet this is the internal struggle I am facing right now. The endless battle that my mind wages against the world.

How and why can suffering happen?

How and why do people allow it?

Why does it feel like humanity is losing the world to greed?

I’m tired of being faced with selfish behaviour some my own.

I’m exhausted with people holding money over life.

Judgement not compassion.

Control not freedom.

Bigotry not acceptance.

I want to hide away from it all right now. Behind the anonymity of untruth. I want to not care for a while. To not worry about the feelings of others. To be selfish but free.

Yet I know I cannot not, because as much as I want so desperately to find peace in my mind it’s never going to be found in untruth.

I have to venture on, somehow finding a new place of truth whilst desperately seeking a way to find harmony for my mind.

Any suggestions?

Stop talking crap about the refugee crisis.

On September 10, 2015 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

I’m getting so tired of reading ill informed opinions on the refugee crisis. People who live in a land of diversity and tolerance acting if they really understand persecution. My news feed is full of comments which are either racist or completely uninformed.

Here are a few that have got my goat this week.

We should be looking after our soldiers first before anyone else.

Ok part of this is right, we should always be looking after our soldiers. Supplying them with the right kit to keep them safe, caring for them when they return. None of this is wrong but before anyone else? Tell me again how many of our soldiers have laid down their lives to fight against the persecution of others? They fight to protect the lives of their fellow man. I’ve never seen a solider ask to check the ethnicity or religion before he stands to protect someone. I think people do our armed force members a great disservice when they write this crap.

Our hospitals are struggling already we don’t need to add any more pressure.

True our NHS is struggling but this is due to underfunding by the prat that runs our country. Cameron would rather invest millions in a defunct defence system than actually saving the people he pretends to want to defend. If money was invested where it should be there wouldn’t be a struggle within the NHS.

They aren’t English so why should we help them?

This one really makes me sick, I am proud of my English heritage but we are all actually citizens of Earth.

Where you were born should never effect the value of your life.

We are all human, well someone better check all the Tories just in case.

The new one I’ve read this week is that the whole refugee crisis is a plan of ISIS to get it’s soldiers into our country.

First off maybe it is but let’s be honest it’s not a very good one. When we count the number of people who have died as they have fled the country. Secondly propaganda wise this sucks the treatment and violence that have forced this people to flee the country doesn’t make many think, oh yes those ISIS peeps have got it right and lastly how the hell can this be a undercover plan it’s not as if these people are entering our country under the radar. As for ISIS recruiting the refugees, Errmm tell me again who they are fleeing.

Seriously this has to stop, I am one of the first to say we need to start fighting for better treatment of our soldiers, for better support for our disabled, the poor, the homeless but it doesn’t have to be one or the other.

I truly don’t know the in’s and outs of this crisis nor will I probably know all the details of the next. I truly don’t know what has driven these people to risk their lives and the lives of their children.

Yet what I do know is this,

Love and compassion are necessities, not luxuries. Without them, humanity cannot survive.

Dalai Lama XIV

Would It change what I believe?

On May 19, 2015 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

As I placed my lottery this weekend I was wondering about what I would do if I won the jackpot. A dream i’m sure we all have had at one time or another. I was wondering if being a millionaire would change my political view point.

It’s easy I guess to say tax the wealthy when you are poor. Would my view be the same if I was one of the elite?

I didn’t have to think about it that long because I truly think my answer would be no.

I don’t think my viewpoint would change.

You see no amount of money can replace my compassion or my empathy.

But most of all money couldn’t replace my need to feel part of something.

You see we have all been sold the lie that being individualistic is the only way to live. To only think about oneself and our own wants and needs. But this only leads to one thing loneliness.

The consumerism lie that things can make you happy has been pushed down our throats way to long.

Yet the truth is far from it.

The newest model phone can be fun, but will it hug you close as you fall asleep?

That gorgeous designer handbag will look good on your arm but will it laugh out loud at your stupid jokes or wipe away your tears when you are sad?

Community and relationships are the greatest of things and money cannot buy them.

Having money won’t stop me loving on children who have no place to call home.

Stop me fighting for services and support for my friends who are either disabled or raising disabled children.

Having a full bank account will not stop me encouraging those who need support or guidance.

I’m not going to lie and say winning the lottery wouldn’t be amazing. My adapted home on a farm depends on it.

Yet whilst the money would make life easier it wouldn’t make me complete.

It’s my, family, friends and passions that do this.

Gift and Befriend

On December 18, 2014 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

Each Christmas we always try to take time and remind our girls about the true meaning of the season.

Behind all the excitement of presents and the enormous amounts of food.

We remember those who haven’t what we have.

The girls get one monetary gift each year which they choose to donate to a charity of their choice or to buy something for someone in need.

So this year when I heard of the charity Gift and Befriend I was excited as this was the perfect way for my daughters to really see those they are helping and also giving them freedom over what they wish purchase.

Over at Gift and Befriend you register to become a giver you then get to learn about those in need known as the receivers and what they actually need from their own Amazon wish list. You then get to choose the items you would like to purchase from their lists and they get shipped directly to them.

I think this is a fantastic idea, especially as one of the main reasons I hear about people’s reluctance to donate to charities is their concern about how much the actual person in need really gets. This site take the fear away as you purchase and ship straight to the receiver of your choice.

I sat down with my youngest daughter Brodie and looked round the site

She really enjoyed reading the profiles and learning about those she could help. It took a while mostly due to her desire to help them all but Brodie decided she wanted to help little Moses, his story just touched her heart.

I know Christmas is always a financially tight time of year for many of us but before you buy that extra stocking filler maybe consider adding a gift to one of the receivers instead. I know my girls really appreciate this and its one of their favourite parts of Christmas.

There is hope.

On October 15, 2014 By rebelwithkindnessIn Uncategorised, UncategorizedLeave a comment

What a week and its only Wednesday!

I feel as if I have been living a lifetime over these last few days.

I have witnesses some of life’s incredible beauty but also some of life’s devastating darkness.

Wearing my heart on my sleeve often leaves me vulnerable.

My openness to love at all times has also left me exposed for negativity and pain.

Still I see life as a gift, a privilege.

So its from this perspective I want to say this.

Remember that everyone of us has their own pathway to walk.

Sometimes that path will lead to cross roads,roundabouts and dead-ends.

No one will ever really understand the journey of another.

Shared experiences can and will be different.

Determined by the understanding of the personal heart and mind.

We have to embrace our differences and celebrate each other for who they are.

Live life lifting people up.

Not tearing them down.

As human’s we need to socialise, we need to bond and form relationships.

Its the essence of our humanity.

But sometimes its these very relationships that can lead to the destruction of the human psyche.

Having someone in your life is a honour.

The value of a friend is priceless.

The gift of a child.

The love of a partner.

Your heart feels alive with the joy of connection.

But honour comes with responsibility.

The commitment should always be about being the light in the life of another.

Be the best friend you can possibly be.

Strive to be the greatest of parents.

The most attentive of partners.

Yet lets take this dedication and commitment one step further.

Smile at people on your train.

Thank you barista for their service.

Hold the door for the one behind you.

Accept the point of view of another.

Forgive your enemies.

The world is simply falling apart.

The media is full of the horror that is happening in our world today.

War, terrorism, genocide,

Illness, diseases and death.

But we do have hope.

That hope is found in our essence of connection.

As I said before its not always easy wearing my heart on my sleeve.

But it gives me freedom.

Freedom to hope

Freedom to have faith.

Faith that compassion and empathy will win the battle of hearts.

That indifference and hate will lose.

Because if as human beings we honour and respect each other.

Our spirits our humanity will over come all.

We are all in this together.

On January 21, 2014 By rebelwithkindnessIn Uncategorised, Uncategorized1 Comment

Throughout our lives we find ourselves becoming parts of communities, part of set groups or to use the sociology term subcultures.

Be it a group of work colleagues , all the technicians together. Be it a parenting group, parents of two year olds please hang here. We come together through shared experiences or passions.

We are never really ever only in one group, different aspects of our lives play into different groups.

Myself I belong to many, parents of teenagers, parents of 12 year olds, foster parents and also the one group I really wish I never had to join parents who have lost a child.

All these groups I am proud to be part of but one thats on my heart right now is parents of children with special needs, especially as I like to call them my Special Kids in the UK family.

This is one amazing group, you find us in all shapes and sizes . We have varying beliefs and certainly different personalities. Our children have different conditions even with the same diagnoses or in some cases no diagnoses.

So what makes this group rather special?

We can bitch and moan as good as it gets but when one of us is hurting we stand along side them.

If you were my friend on Facebook today you would see that my news feed is full of pictures of Minnie mouse. These pictures are our way of showing one of our members that we stand beside her. Most us wish that we could literally be standing beside her tomorrow as she lays to rest her beautiful son. We wish we could swap our virtual hugs for real squeezy ones.

But we cannot,

Life, children and distance keeps us separated. Yet nothing will stop us thinking and sending our love and wishes in support, compassion and remembrance tomorrow.

This same group right now are also sending prayers and healing to children in hospital. Sending strength to parents who are utterly exhausted. Families that are at breaking point.

At times we cannot offer more than the words “I’m here” but believe me over the years those words have meant a great deal.

I am blessed to be a member of this group. For over the last 8 years they have been my strength. I have made friends whose friendship goes over and beyond the fact that we are special needs parents.

When I lost Livvy one of the crazy worries I had in my head was that I would lose these friends. How wrong was I, our children may have been what introduced us but they aren’t what bind us.

Maybe our binds are forged in exhaustion, endless battles with professionals and way to many late nights. Maybe they were joined in the many melt downs and medical jargon and repetitive forms.

Who knows, who cares, regardless of the why there is simply the just is.

I am so thankful to be part of this unique subculture to know and to share my life with these crazy people. At times I am not sure I would have coped without one or many of the group members.

Together we have faced the worst.

I am so grateful that one day many years ago I stumbled upon a small yahoo group. I have watched in grow over the last 8 years watched the number of members change from the tens into the thousands.

Being a member of this group means that although we may be facing uncertain futures with our children. We are never facing them alone.

We are all in this together.