The Story Of Our Little Warrior Neil Saiesh

The world tells us that life moves on. I don’t think it does.

I think we simply learn to carry what it leaves behind.

The day Neil left us is not a memory I revisit. It is a day that still revisits me.

Without warning.

Without permission.

Some days I wake up and, for a few brief moments, I am back in that hospital room. I can still hear the monitor. I can still see the doors opening and closing. I still wait, almost instinctively, for someone to walk out and tell us that it was all a mistake.

It never was.

When we carried Neil home that evening, something inside me refused to believe that this would be the last journey we would ever make together.

For eighteen months, every time we carried him, it was with hope.

Hope that this hospital visit had made him better.

Hope that this surgery had brought us one step closer.

Hope that this medicine would finally work.

Hope that tomorrow would be kinder.

But this time…

there was no tomorrow to wait for.

Only goodbye.

I don’t know if words will ever be enough to describe what those next few hours felt like.

And honestly, I pray that no parent or actually no one ever has to find those words.

No parent should ever have to buy clothes for their baby’s final journey.

No parent should ever have to choose a tiny coffin.

No parent should ever have to lift their child knowing they will never feel that little body melt into their arms again.

No parent should ever have to kiss their baby hoping, even for one impossible second, that warmth might somehow return.

And no parent should ever have to place the child who once filled every corner of their home with laughter into an ice box… and simply watch.

Neil lay there so peacefully.

He was still the most beautiful little boy I had ever seen.

I remember looking at him and wondering how someone who looked so full of life could suddenly be so still.

My hands trembled as I dressed him.

They trembled as I kissed him.

They trembled as I gently placed his favourite little toys beside him.

I don’t know why we did that.

Maybe because every parent wants to believe that even if they cannot walk with their child any further, a small piece of home still can.

Those moments have never left me.

Perhaps they never will.

They return without invitation.

Sometimes in silence.

Sometimes in dreams.

Sometimes in the middle of an ordinary day.

People often ask me why we chose to lay Neil to rest in Chennai.

The answer has always been simple.

We didn’t choose Chennai.

Neil did.

It was the city that fought for him.

The city that gave us hope when we had almost none left.

The city where doctors became family.

Where strangers became our people.

Where love quietly found us in hospital corridors.

It was only right that our little boy rested in the city that loved him so deeply.

If you are ever in Chennai and happen to visit Kotturpuram…

stop by and meet our Neil.

I have a feeling he’ll still work his little magic.

Because that was always who he was.

A little miracle wrapped inside the tiniest body.

When we returned home after saying goodbye, the silence was unbearable.

For eighteen months, every corner of our home belonged to him.

His medicines were still there.

His therapy mat.

His tiny clothes.

His feeding bottles.

His toys.

His blankets.

His smell.

His presence.

Everything was exactly where we had left it.

Except him.

The house was still full of Neil.

And yet, somehow…

it had never felt so empty.

It took me a long time to understand something.

If I allowed Neil’s story to end on the day he left us, I would be doing him the greatest injustice.

Because he was never the little boy who died.

He was the little boy who lived.

Who fought.

Who loved.

Who made strangers become family.

Who taught doctors.

Who taught us.

Who changed us forever.

So I made a promise to myself.

I would never let the day we lost him become the story people remembered.

I would spend my life making sure they remembered the way he lived.

Perhaps that is why I finally found the courage to write this book.

Not to relive the hardest days.

But to make sure the world met the extraordinary little boy who lived them.

There is, however, one conversation I have carried in my heart ever since he left.

A conversation that never found its way into words.

Maybe it was because it hurt too much.

Maybe it was because no words ever felt enough.

Or maybe I was simply waiting until I was ready.

If there is one thing I still wish I could do…

it is sit beside my little boy one more time.

Hold him.

Kiss his forehead.

And tell him everything that has remained inside my heart.

Since I cannot do that…

perhaps this letter will have to carry my words instead.

…………..

Dear Neil (My Kutty Neilaaa, My Chinna Neilaaaa),

I don’t know if letters find their way to Heaven.

But if love can travel beyond what our eyes can see, I know this one will somehow find you.

There is so much I have wanted to tell you.

So much that remained unsaid.

Not because I didn’t have the words.

But because every time I thought of speaking to you, I broke before I could begin.

You know, Neil…

People often ask me how I am.

I smile.

I tell them I am okay.

I tell them I am learning to live.

But you know the truth.

A part of me never left that hospital room with you.

A part of me is still standing outside those doors, praying that someone will walk out and tell me that everything is going to be alright.

Some days I still wake up wondering if it is time to prepare your medicines.

Sometimes I hear the sound of a monitor in a hospital or even in a movie, and my heart starts racing before my mind realises why.

Sometimes I still look at the clock and think it is time for your feeds.

You became my routine.

And when you left, the routine disappeared.

But the love never did.

Neil…

There is something I have wanted to tell you for a long time.

Thank you.

Thank you for choosing me to be your Amma.

Out of every mother in this world, you chose me.

That will forever remain the greatest privilege of my life.

Eighteen months sounds so little when people say it.

But somehow, you fit an entire lifetime into those eighteen months.

You taught me that courage has nothing to do with age.

You taught me that strength sometimes means simply waking up one more morning and choosing to fight again.

You taught me that love is never measured by time.

People spend decades together and never experience the kind of love and pride you gave us in eighteen months.

I miss the simplest things.

I miss your tiny blissful touch.

I miss carrying you.

I miss kissing your cheeks.

I miss hearing your little cries.

I even miss your medicines, your feeding schedules, your therapies and those endless hospital visits.

Because every one of those things meant one beautiful truth.

You were with us.

Also Neil…

There is one thing that has lived inside my heart ever since you left.

I’m sorry.

I’m sorry for every needle.

Every surgery.

Every dressing.

Every medicine.

Every tube.

Every line.

Every time I had to hold you while someone else hurt you, hoping they were helping you.

I know they were trying to save you.

I know your Dadda and I were trying to save you.

But I don’t know how much pain you silently endured.

I don’t know how many times you wanted all of it to stop but didn’t know how to tell us.

Sometimes I wonder whether you looked at me and thought,

“Amma… why are you letting them do this to me?”

That thought breaks me every single time.

Because all I ever wanted was to protect you.

Yet protecting you somehow meant making impossible decisions every single day.

If I caused you pain while trying to give you one more sunrise…

one more cuddle…

one more chance at life…

I hope you’ll forgive me.

Every consent I signed…

every difficult decision your Dadda and I made…

came from only one place.

Love.

Never convenience.

Never giving up.

Only love.

Because if love alone could have healed you…

you would have lived forever.

You know, Neil…

I often wonder what you would have become.

Would you have loved cricket/football like Dadda?

Would you have become a Chartered Accountant or a Company Secretary??

Or Would you have become a Doctor being inspired by Dr. Dinesh and team?

Would you have been a CSK fan or an RCB fan?

Would you have argued with me and Dadda?

Would you have become mischievous?

Would you have run around the house making all of us chase you?

Would you have still looked at Dr. Dinesh with those trusting little eyes that always seemed to say, “I’m okay.”

I will never know.

But I still imagine it.

Because in my heart, you never stopped growing.

And talking about Dr. Dinesh…

I hope you know how much he loved you.

He never saw you as just another patient.

You were his Neil.

Just as he was our Dr. Dinesh.

I still remember him telling you,

“Neil… nee va da… ivanga ellam edhachu sollitte irupaanga… prove them wrong.”

He believed in you with everything he had.

Just as we did.

I actually want to tell you about everyone.

Because I know that if you were sitting beside me right now, you wouldn’t first ask me how I was.

You would ask,

“How is everyone?”

Your Banuma…

Oh, Neil…

You know how fiercely she fought with God for you.

Every temple.

Every prayer.

Every promise.

Every tear.

She bargained with God every single day.

She only wanted one thing.

Her Neil. Her thangakili..

And after you left…

she didn’t stop talking to God.

She simply started fighting with Him.

Not because she stopped believing.

But because she could not understand why the same God she trusted so deeply chose to take away the little boy she loved beyond words.

She visits you everyday.. Feeds you with food she would have enjoyed watching you eat if you were here.. She misses you Neil..

Your Thatha has learnt something no grandfather should ever have to learn.

How to live without his grandson.

He carries you quietly.

He doesn’t always speak about you.

But I know you are with him every single day.

And your Perima…

You know how her every morning began with you.

Before work.

Before the world asked anything of her.

She would first ask about you.

She would wait for your updates.

Celebrate every tiny victory.

Pray through every setback.

After you left, something changed.

She never really spoke much about her pain.

She quietly buried it somewhere deep within herself.

She learnt to smile when everyone was around.

She learnt to carry your absence in silence.

But I know…

and I know you know too…

that there isn’t a single day when she doesn’t think about you.

Some loves are loud.

Hers never was.

She loved you quietly.

And perhaps that is why her grief became quiet too.

But make no mistake, my baby…

she misses you just as deeply.

And then there is your Yajas Anna.

Oh, Neil…

You would be so proud of him.

He still remembers you with so much love.

He still calls you Gudbeesan.

Loduckpandiayan.

Vayu.

He still remembers carrying you.

Feeding you.

Playing with you.

Praying for you.

Sometimes I think those six days you gave him were never a coincidence.

Almost as though somewhere, you knew he deserved uninterrupted time with his little brother.

Today, he still carries you.

Not in his arms.

But in his heart.

Just like all of us do.

And finally, Your Dadda…

I don’t think people understand fathers enough.

They grieve differently.

The world expects them to remain strong while everything inside them is falling apart.

Your Dadda fought every battle with you.

He learnt medicines he never imagined he would have to learn.

He learnt TPN.

He learnt line care.

He learnt to read monitors.

He learnt blood reports.

He learnt medical words that no father should ever have to know.

He carried you into hospitals with hope.

He carried you back home with hope.

Every single time.

He never once stopped believing that his little boy would come back home and stay.

And then…

the day you left…

I watched something inside your Dadda change forever.

I see your Dadda fight a battle every day that no one else can see.

Every single day.

He wakes up.

He goes to work.

He smiles when he has to.

But I know that somewhere inside him, he is still trying to understand how to live in a world where his Chakkarey is no longer waiting for him.

He carries you everywhere.

In his thoughts.

In his silence.

In the dreams he had for you.

Sometimes I catch him looking at your photographs a little longer than usual.

Sometimes I hear him talk about you as though you are still here.

And in those moments, I realise something.

A father’s love doesn’t become smaller because it is quiet.

It simply becomes heavier to carry.

I wish you knew how proud your Appa was of you.

Every tiny achievement of yours became his biggest celebration.

Every gram you gained.

Every feed you finished.

Every milestone you reached.

He celebrated them all.

Not because they were small.

But because they were yours.

Neil…

I know your Dadda doesn’t say this often.

So let Amma say it for him.

He misses you beyond words.

And I know…

if love alone could have changed destiny…

you would still be in his arms today.

And Neil, do you know what happened when we told the world that you had left us?

Hundreds of messages came.

Hundreds.

From people who had never met you.

People cried for you.

People prayed for us.

People wrote to tell us that they felt like they had lost someone from their own family.

Can you imagine that, my little boy?

In just eighteen months, you made people who had never even met you feel like they knew you.

That has always been your magic.

You connected with hearts without ever speaking a word.

Every time someone remembers you…

Every time someone takes your name…

Every time someone tells us they still think about you…

our hearts fill with pride.

Not sadness.

Pride.

Because they are remembering our Neil.

And that is all we want now.

Oh… and there is one more thing I wanted to tell you.

I kept my promise.

I wrote your story.

Every battle.

Every surgery.

Every tiny victory.

Every setback.

Every smile.

Every little miracle.

I wrote about Dr. Dinesh.

About Dr. Anil.

About Benjamin Anna. Sakthi-man..

About everyone who loved you.

I wrote about your courage.

I wrote about your magic.

I even wrote about the hardest day of my life.

Not because I wanted to relive it.

But because I never wanted the world to know only the day you left.

I wanted them to know how magnificently you lived.

Do you know what happened while I was writing?

People who had never met you began loving you.

They waited every week for the next chapter.

They celebrated every gram you gained.

They cried through every setback.

Somewhere along the way…

they stopped reading a story.

They began loving a little boy called Neil.

I hope I did justice to your story.

I hope that if you have somehow been reading along from where you are, you’ll smile and say,

“Amma… you remembered everything.”

Because I did.

I always will.

Neil…Sometimes I still ask God why you had to suffer so much.

I don’t know if I will ever receive that answer.

Maybe I never will.

But if there is one question I no longer ask…

it is why you came into our lives.

Because now I know.

You came to teach us how deeply a human heart can love.

You came to show us that eighteen months can be enough to change countless lives.

You came to make strangers become family.

You came to begin a Foundation that will carry your love to lives you will never meet.

You came to leave this world kinder than you found it.

You came here to be magic.

And you were.

You still are.

There is one promise I want to make to you.

For as long as I live, I will make sure the world remembers you.

Not as a diagnosis.

Not as a hospital file.

Not as the little boy people felt sorry for.

But as the bravest little soul I have ever known.

The boy who made doctors believe.

The boy who made strangers become family.

The boy who taught us that hope can survive even in the darkest corridors.

The boy who changed our lives forever.

And one day…

when my own journey here is complete…

I don’t know what Heaven looks like.

I don’t know who will be waiting there.

But I know exactly who I will be searching for.

I have a feeling you’ll come running towards me.

For the very first time…

I’ll get to hold you without tubes.

Without lines.

Without dressings.

Without pain.

Just you.

Just me.

Until that day…

Live in every sunrise I stop to admire.

Live in every life your Foundation helps.

Live in every word of this story.

Live in every heart that now knows your name.

And most of all…

live in mine.

Because that is where you have always belonged.

If I had to live this life all over again, knowing exactly how our story would end…

I would still choose you.

Every single time.

In every lifetime.

Because eighteen months with you was worth a lifetime without you.

You will always be my greatest privilege.

I love you, Neil.

I always will.

Until we meet again…

Love,

Mummy…