You cannot rush grief

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.

It’s to hard

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.

Desperate

I woke last night screaming, somehow my sleep had become a time machine and I was there again in the hospital begging my child to wake. Desperate to see her chest rise again, begging the Lord to save her.

How can 12 years just disappear in a moment?

Yet I know in grief, time is only my enemy.

I miss my girlie so much, how I wish I could just hold her in my arms once more, to just breathe in the sweet smell of her hair.

Grief is a complex devil, playing games with your heart moment by moment, memory by memory.

Does it ever end?

Only with eternity I guess.

Oh I never knew the heart could survive such pain. The crushing weight becoming bearable against my wishes.

I don’t want to sleep again, I had to leave her once I’m not sure I could do it again.

Why does your memory invade your dreams?

Is there nowhere free from grief?

I couldn’t pretend for a while, I could not create the facade of being ok in those darkness hours. So I let the tears fall and as my whole soul hiccuped through my body I allowed myself to miss her.

I let the memories swarm my mind like a tapestry of bees as they create their honey, I created my moments again. I held her in my arms, I heard her sweet giggle of mischief on the symphony of the night and I breathed her in deep and I sobbed.

I still don’t understand why I had to lose her, why Rett Syndrome had to win the battle for her life. Yet I know it wasn’t for the lack of love. My Livvy, their Livvy, your Livvy was loved with the depths of so many hearts.

If love could have saved her life she would be here.

No the question still stands unanswered, our hearts still forever broken.

I couldn’t breathe anymore the tears had tore my soul and I did fall into an exhausted sleep.

I wake still desperate to hold my daughter once again.

The new day begins,

I trust, I breathe and I hope.

Until we meet again my beautiful girl, until.

Joining in again with five minute Friday, set your timer for five minutes and write.

Scotty’s Little Soldiers

After losing Livvy holidays were never the same, every experience was entwined with a little sadness.

Its hard and there is no two ways about it. It’s one of the ‘first’s’ that really hit hard.

So when I came across the charity Scotty’s Little Soldiers I so wanted to share what they did.

Scotty’s Little Soldiers is dedicated to supporting the children of men and women killed while serving in the British Armed Forces. The charity provides Christmas and birthday gifts, treats, trips and activities for the families of the fallen as well as enabling them to use the charity holiday lodges.

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 How incredible is this!

The men and woman who protect our freedom often do so by paying the ultimate price. But its not just the soldiers that pay this price the families that left behind suffer too.

The military charity for bereaved children was set up by army widow Nikki Scott after her husband Corporal Lee Scott was killed in Afghanistan in 2009 and came about as a result of Nikki seeing her children laugh for the first time following Lee’s death whilst on holiday in Turkey.

Nikki Scott, Founder of Scotty’s Little Soldiers, said:

“Whilst life following the death of a spouse or partner will always be painful, the first year and the first family holiday can be particularly difficult, especially when facing the long summer holidays as a single parent.

“That’s why we’ve released our advice to help and support parents facing this difficult time. Whilst it’s seldom spoken about, going on holiday whilst still grieving is a reality for many across the UK and so we want to offer our advice and support wherever necessary.”

Scotty’s help children to smile again after losing a mum or dad, and helps the parent left behind to cope with facing life as a single parent. 

As the charity’s children look ahead to six weeks of summer holidays this year, we wanted to share founder Nikki’s top ten tips for parents facing the school break alone.

1.     Long road journeys can be a nightmare!  I invested in some car DVD players and they worked a treat.   If we are going on a long special journey I normally surprise them with a new DVD when they get in the car.  J  I would also recommend breaking up long car journeys with roadside stops at services or cafes to give you and your kids a break.

2.     Special things from home.  At the Scotty lodges we try to provide everything families would need and fill them with toys and goodies so the families can pack as light as possible but I would also suggest taking that extra favourite toy or teddy from home.  Maybe even taking a photo of your loved one may help.  

3.     Take a family member or friend with you.  It is stressful with little ones on your own especially that first holiday.  When I went away after Lee had been killed I went with family and my mum and it was a massive help.   It just gives you some support and helps take some of the stress away, plus my little ones loved playing with their cousins.  At Scotty’s we allow the families to take other family members or close friends with them on the breaks we offer as a way of support.

4.     Be organised!  I found the airport really stressful! Going through check in especially.  Folding a buggy up whilst keeping my eye on Kai, whilst carrying bags and Brooke so they could scan the buggy etc was tough so my best tip would be to try to be as organised a possible.  

5.     Plan your activities.   Do your research before you go.  Check out what facilities there are around you so you can plan what to do and where to go. 

6.     Smile!  As painful as my first holiday was especially because you are constantly imaging “if Lee was here” and feeling guilty for having some time away, you have to remember to smile. I kept telling myself “Lee would want us to have some fun, it’s ok to have some fun.”   I soon found out if you relax the kids relax!

7.    Keep busy – I found keeping busy and just spending time playing with my little ones really helped.  If you sit by the pool to long, you start to think to much and start noticing all the families around you reminding you what you have lost.   I found it was good to keep busy and enjoy spending some quality time with the kids.

 8.   Write Lists – I am a big fan of lists!  Writing a list for packing and travelling times really helped me as when I first lost Lee my mind was all over the place and I found it hard to focus so lists defiantly helped me to feel in control.

 

9.    Check in Early – If you are off on a break aboard I’d recommend looking into checking in online to save queuing with the little ones and remember buggies can be taken all the way up to the gate where you board the plane.

 

10.  Looking into the Kids Clubs – My kids love the kids clubs on the Haven sites where our Scotty Lodges are.  It can give children the chance to mix with other children and forget about all the sadness they may have been experiencing at home for a short time.  Sometimes being away from mummy may help them to open up and relax so it may be an idea to quietly let the guys at the kids club know about your recent loss in case the little ones bring it up to someone else.

 

“I guess it’s important to remember that everyone is different and has different ways of coping but these are a few of my personal top tips on how I make the holidays for me and my kiddies that little bit easier,” said Nikki Scott.

Personally I think this charity is amazing.

When Olivia died we had to teach our girls that it was ok to be happy.

That laughing and feeling joy only honours the ones we have lost.

 Scotty’s Little Soldiers invites everyone who is passionate about their cause and wants to support their work to get in touch via their website at www.scottyslittlesoldiers.co.uk or by calling them on 01553 763 000.

 

 

 

 

 

 

Exploding

Wow I cannot tell you how angry I am feeling right now.

So frustrated by the injustice in this world.

So devastated by my grief.

I am angry that children are dying through hunger when so many have so much.

I am angry that I had I bury my daughter.

So many times I can find my inner sunshine and find peace with this world.

Not today.

Today I am so cross.

I have a rage burning up inside of me.I am so lost.

Normally the peace maker today I want to start a war.

I want to battle against poverty.

I want to fight against Rett syndrome.

I want so much for things to be different.

Today I wonder how to move forward. How to let my heart open again.

It’s hard my husband says I want to save the whole world.

Maybe I’m selfish today because right now I just wish I could have saved Livvy.

Epilepsy awareness day

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Today is Epilepsy awareness day, a day where people across the world, share,educate and inform people about this condition.

I am too aware of epilepsy as it was condition that Livvy suffered from severely. A condition that played a big part in her death.

Livvy suffered from uncontrollable seizures, one time we counted over 106 in a day. We tried many medications and fought hard not to let them to control her life.

Lets just say it was an ongoing war,one which sometimes we won the battle other times we lost.

Epilepsy can be scary for both the one having the seizure and the one watching.

Epilepsy is also surrounded by myths, not that long ago sufferers were accused of being demons. Thankfully times have changed but still the need for awareness is there.

So I ask you today to click this link and learn more about this condition.

Written in the sand.

Sometimes I find myself wondering if the world has moved too far forward.

 If Livvy is a part of the past that is being forgotten.

 

Will she become one of the distant memories that only hang on in the edge of your mind.

 

I watch my girls living life and wonder if they remember their mischevious little sister and how life was when she was with us.

 

Today was one of those moments as I sat on the beach watching the world go by, just wondering.

 

Then my daughter called me over and showed me this.

 

How foolish am I?

Livvy will never be forgotten while there is breathe left in ones that love her.

 

Time passes,

Memories fade

but love is eternal

 

Forgotten

OH my dear beautiful girl I have forgotten….

 

What you taught us on those endless hospital nights, when the wards seemed empty and all I could hear was the infernal beeping of those annoying but lifesaving machines and the gentle beating of your precious heart.

 

I’ve forgotten what I saw in those doctors eyes when the words they spoke were taking away all our tomorrows.

 

I’ve forgotten 

 

I close my eyes and try to remember, to just hear those sweet infectious giggles once again.

 

But I’ve forgotten.

 

Dad and I are tumbling head first into the world of forgetfulness, losing hold of the life that you taught us to live.

 

Forgetting to search for the gift that each day brings, the moment when that forever memory can be made.

 

I’ve forgotten 

 

We’ve forgotten 

 

Letting ourselves fall into the endless bog of circumstance and reality.

 

Forgetting to dance under the rainbows and search for leprechauns with a pots of gold.

 

Forgotten.

 

Those days of random dances in the middle of a store because the song we loved was playing over the radio.

 

To smile at people in the street as you chuckled away from your wheelchair.

 

To hug each other so tight until we cannot breathe anymore.

 

We’ve forgotten 

 

 

 

When was the last time I laid back and watched the clouds

 

When was the last time I tickled your sisters until they cried.

 

My baby, my precious baby, I’ve forgotten.

 

I’ve let the anger of loss slowly eat away at my heart.

 

Getting colder and colder until the icicles formed.

 

Ive forgotten 

 

To let the tears just fall and let the heart wrenching sobs escape my soul.

 

 

I need to breathe again

 

I need to trust again.

 

 

But I’ve forgotten 

 

We knew we didn’t have forever but we had today and that was enough, but now yesterday seems so far away and this moment isn’t enough.

 

I want to dance in the rain again

 

Catch fairies as they fly through the air

 

I want to breathe so deep and not feel the ache thats buried there 

 

I haven’t forgotten

 

 

How can things be the same?

 

How can the world keep on turning and why wont it stop and let me off?

 

The newspapers keep on printing and the radio keeps on playing.

 

 

You taught us all so much and in those nine precious years you gave a lifetime full of love.

 

Joy was a gift that was available to us, all we just had to do was unwrap this present they call life.

 

Whose knows what tomorrow may bring, I certainly don’t

 

But I can live for today.

 

I can tell everyone I meet how special they are

 

How wonderful it is that I’ve met them

 

That they are not forgotten

 

Just by being in your presence people felt love, your smile could make someone’s day.

 

I want to tell people to embrace the moment, not in a morbid you may die tomorrow way, but in a hey today is so beautiful way.

 

Our motto for you was Never say never

 

You defied the odds until our luck ran out

 

But you are the gift that keeps on giving

 

You are the heart that now beats in others.

 

Your love lives on in me, you dad, your sisters and anyone who knew and loved you.

 

 

 

 

I miss my old life so desperately 

 

But I will not forget what you taught me

 

Each day is a gift a new beginning 

 

So I’m going to start unwrapping the presents that I’ve been given

 

Stop wishing the days away

 

Stop holding on to the past

 

I’ve not forgotten 

 

 

 

How can I forget,

 

 

You are right here in my heart reminding me.

In my heart.

Explaining Me

I’ve been thinking a lot about scripture and how some verses just cling to your hearts. They pop up in your thoughts at given times.

When you are exhausted you can one think of one with strength.

God is our refuge and strength, an ever-present help in trouble.
(Psalms 46:1-1, NIV)

When you are lost, one reminds you of direction.

I will instruct you and teach you in the way you should go; I will counsel you and watch over you.
(Psalms 32:8, NIV)

When you are scared one reminds you to trust.

Trust in the LORD forever, for the LORD, the LORD, is the Rock eternal.
(Isaiah 26:4, NIV)

I have many that inspire, consume and replenish my soul.

The verse you see below was the inspiration behind naming this blog it is one I hold dear to my heart. I know my life has been blessed many times by angels.

Remember to welcome strangers because some that have done this have welcomed angels without knowing it. Hebrews, 13.1

Yet the last 6 months I’ve been searching for something that will explain me.

I get a lot of people asking me how I do what I do, how I’ve survived what I have.

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This simply explains it all. I don’t do it alone , all that I do, all that I achieve is because of and through Christ Jesus.

Anyone know the way?

It’s crazy somedays I just get so caught up in my lack of self confidence that everything seems to be so different to how it really is.

It’s like my reality can be screwed up by my emotions.

Today I’ve been feeling really down on myself, someone had said something to me that just robbed me of my self confidence in one sentence.

The crazy thing is I don’t think they meant it to sound how I heard it.

They were talking about learning more, I was hearing “you are thick and know nothing.”

How do I get to point of belief?

A point where I believe in myself.

I’m trying hard to let things wash over.

To have faith in myself.

To be true to myself and liking who I am.

It’s a journey with a lot of dead ends. I feel like I’ve taken the wrong road at times and are completely lost.

Does anyone have a map?

Anyone know the way?

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