How the tide can change,
everything suddenly feels so strange,
I’d allowed myself to feel a new kind of hope,
but as i lay here i feel unable to cope.

I felt we’d caught a new wave,
to have the normality we all crave,
dropping my sons at the school gate,
now we await to hear Charlie’s fate.

I feel the current pulling me down,
I’m terrified that I might drown,
all of my deepest fears....
once again reappear.

If only we could reach the shore,
finally free of this tumour,
please God....if you are real,
I pray we can make a deal.

For now we must ride another storm,
this has become the norm,
if anyone can make it through,
“Charlie I know it will be you”.

Nici 15/09/2020 03:00

These days I often feel numb,
I’m fairly sure it’s so my feelings don’t succumb.
I’ve always thought the mind was clever,
as though it’s protecting me from stormy weather.

Trauma can hit you like a bolt of lightening,
it leaves you stunned and is incredibly frightening.
The scars that are left behind,
forever etched on the mind.

Flashbacks leave you feeling dazed,
like a tsunami on summer days.
Like the destruction it leaves in its wake,
I can feel my heart break.

There’s a black cloud above my head,
I can feel an impending sense of dread.
Intrusive thoughts are coming faster,
and like a whirlwind can cause disaster.
A wave of guilt can drag me down,
sometimes I feel like i might drown.

Like the rain before a storm,
the tears begin to form.
As tears begin to flow,
I can see a rainbow.

Peace is my endeavour,
storms never last forever.

Nici 01:30 03/03/2020

We live ours lives day by day,
to try and keep our feelings at bay.
We don’t know what the future holds,
the flashbacks leave us feeling cold.
The day we found out what was in Charlie’s head,
left us feeling utter dread
and wishing we could take his place instead.
We would be lying,
if we said there weren’t times we couldn’t stop crying.

There are days it’s hard to lift our heads,
and all we want to do is hide in bed.
On the days when we struggle,
we may simply need a cuddle.
Other days it can help to walk,
sometimes we just need to talk.

At times we can’t help but ask why,
unfortunately there is no reply.
Each scan brings complete fear,
we continue to pray for the all clear.

It has been a slippery slope,
but we will never give up hope...
or we simply couldn’t cope.
Even though things will never be the same,
being positive is our aim.

At times decisions have been pivotal,
but Charlie continues to prove he is our little miracle.
Charlie and his brothers have been so resilient,
they are nothing short of brilliant.

Although there’s no way of knowing,
it is our boys that keep us going.
That and the love and support everyone continues showing...
is truly mind blowing.

Thank you

Nici 02:00 25/02/2020

“Brain tumour”...the words no parent wants to hear,
even just thinking about them brings a tear.
It’s so hard to explain,
an excruciating pain.
Like a deep open cut,
a sickening feeling in my gut.

My happy little two year old,
unaware of what was to unfold.
The nighttime headaches followed by sick,
he became more and more lethargic.
He had no appetite,
something just wasn’t right.

After several trips to the GP,
we eventually went to A&E.
Sent away without an answer,
never thinking it could be cancer.

If it hadn’t been for Auntie Anne Maree,
I dread to think where we would be.
I will never forget seeing him in the MRI machine,
nurses and doctors behind a screen.
When I left the room...I knew,
I felt my heart break in two.

My first thought...my baby could die,
all I could do was cry.
This is where it all begun,
for our superhero son.
We’ve prayed to the gods,
and he’s continued to defy the odds.

Unfortunately the fear never goes away,
but we try to take things day by day.
We hope that by sharing this,
possible symptoms won’t be dismissed.
If you are worried about someone you know,
please don’t leave it until tomorrow.
This message comes from the head and the heart,
please use the head smart.

www.headsmart.org.uk

As we lay side by side,
I can’t help but think of all the things we will be denied.
Time just seems to be going so fast,
I wish our cuddles and snuggles would forever last.

You are becoming more and more restless,
repeatedly being sick....i just feel so helpless.
You never complain,
even though i can see your pain.

How has it come to this,
for me there is no justice.
You are my son,
I am your mum.
Even though inside me you grew,
I still cannot save you.

My heart is heavy,
my emotions i need to bury.
I want to enjoy our time no matter how long,
for this i need to stay strong.

My chest feels tight,
I beg we have another night.

Love you, Charlie
From Mummy xxx

From the minute you were born my heart swelled with love,
you were the perfect gift sent from above.
You beautiful blue eyes and blonde hair,
your skin was always so soft and fare.

You were my little live wire....I always said,
little did i know what really lay ahead.
I’ve had many a sleepless night,
while you’ve endured this devastating fight.
I’ve always been there by your side,
whilst you have always taken it in your stride.

You never complained or showed any fear,
your inner strength and determination was always clear.
Your beloved blue bear, you’d always squeeze tight,
some how he always made things alright.

Your smile has been shared far and wide,
each time i see it, i feel such pride.
Your army of supporters which followed you,
could all see something extraordinary special too.

This isn’t the future we had planned,
God has dealt us the cruelest hand.
No matter how big or small the memories we’ve made,
they’ll be forever etched on my heart and will never fade.

You will always be a hero to me,
this is something i know that many would agree.
As your mum i feel i failed you,
there was nothing more in my power i could do.
My heart will be broken forevermore,
but i know i must go on deep down in my core.

There are days I feel locked in my head,
each new day filling me with dread.
Even when i feel at my most sad,
I hope and pray you’re with your Grandads.

Jack, Harry, Daddy and I,
know you are watching from the sky.
You will never be forgotten,
we will come, sit and watch you blossom.
Always keeping your memory alive,
until the day arrives when i will yet again be by your side.

I love you from your head to your toes,
I love you more than you could know.
I love you to the moon and back again,
again and again and again.

I once read;
“People dream of meeting their hero’s,
but I gave birth to mine”.

Day after day i ask why?
why did you have to die?
Theres a numbness that takes hold,
my heart has become cold.

Day after day I carry on,
I need to for my other two sons.
Jack and Harry bring me light,
which can help in my daily plight.

Day after day I go through the motions,
but eventually I’m consumed by emotion.
I try to take comfort from the little things,
the rainbows, the sun, the signs that you bring.

Day after day I get out of bed,
although most of it I’m inside my head.
When my heart feels most heavy,
I snuggle one of your teddies.

Day after day i walk past your room,
good and bad memories often loom.
I wish I could see, touch and hold you one more time,
but for now I continue my upward climb.

Day after day i ask why?
why did you have to die?

A friend of mine once said “do you have a special tree?”,
first thoughts were…”that’s not for me”.
However, as I’ve begun to walk frequently,
I try to process all that’s happened recently.
My thoughts and emotions entwined,
I try to open my mind.

On one of my many walks I saw a tree,
there was something about it that resembled me.
It was only just upright,
as i sit here now the sunset is casting some light…
I wonder if this is Charlie reminding me to fight.

Just like this tree,
like feet being swiped from under me.
The roots have begun to lift,
the trunk has begun to twist.
How long can it stand tall,
one more storm and it could fall.

I am drawn to this tree,
does it have a healing quality which could help me?
The leaves are orange and brown,
as i sit here autumn leaves fall to the ground.
Trees need leaves….
it enables them to breath.
Without them they will eventually suffocate,
will that be it’s fate?

Like this tree,
I feel i’ve lost part of me.
I’m aware of my inner suffering,
but strangely the silence in this moment is comforting.
Each branch helps form its story,
now laid bare in all their glory.

It’s time to hibernate for the tree,
this feels safe to me.
Trying to preserve energy,
although all I feel is lethargy.
Will it withstand a winter freeze,
as I write this I can feel a sudden breeze.
Please give this tree the strength to survive,
please help keep it alive.