Neil had earned himself one more chance. ❤️
Post the lengthening surgery, Neil continued to stay in the hospital for a few days. The doctors wanted to make sure the surgery had actually worked. They needed proof that the bowel was functioning, that the connections inside were holding, and most importantly, that Neil could finally begin the journey we had waited thirteen months for.
As I looked at him lying in the PICU bed, my heart ached.
He still had a central line.
A surgical drain.
A G-tube.
A urine catheter.
Fresh surgical wounds.
And an abdomen carrying a scar far bigger than any child should ever have to carry.
Sometimes I would simply sit beside him and stare.
I don’t know what it felt like to be Neil.
But I knew one thing.
It wasn’t easy being Neil.
It wasn’t easy waking up every day and enduring what he endured.
And yet he did.
With a strength I will spend the rest of my life admiring.
I am proud of Neil.
Then.
Now.
And forever.
But amidst all of this pain, there was one beautiful possibility.
Neil could finally eat.
Eat.
Such a simple word.
Yet for us, it felt like a miracle.
Since his birth, Neil had never truly experienced food.
His nutrition came through TPN.
The only things he received orally were medicines and supplements.
Many times we would offer him a pacifier because instinctively he seemed hungry.
And every time, it felt heartbreaking.
Your child is hungry.
Your child wants to suck.
Your child wants comfort.
And yet you cannot feed him.
For thirteen months, this was our reality.
Now suddenly there was hope.
If he felt hungry, we could finally feed him.
The thought alone made me emotional.
Neil slowly started recovering from surgery.
His movements began returning.
Every little movement comforted us.
Every stretch of his hand.
Every turn of his head.
Every reaction.
He must have been in tremendous pain.
But my boy was a warrior.
He rarely showed it.
He simply endured.
About a week later, the doctors planned a contrast study.
A contrast study is a test where contrast material is introduced through the G-tube and tracked through the intestine to see whether it passes successfully through the digestive tract and exits through the anal opening.
The test would answer two critical questions:
Was the system working?
And how much absorption could be expected from Neil’s short bowel?
We waited anxiously.
The results came.
The contrast passed.
It took approximately four hours.
And then…
Neil pooped.
He pooped.
I know this may sound funny to anyone reading this.
But for us, it was one of the happiest moments of our lives.
Because it meant the intestine was working.
The bowel lengthening had worked.
There was finally a pathway.
The concern from the previous admission, however, remained.
The meningitis.
The seizures.
The neurological recovery.
The gut had a chance.
The brain still had a long road ahead.
And that was now the difficult part.
On 5th December 2025, Dr. Dinesh looked at us and said:
“Take him home. Now he needs to be fed.”
We went home.
This time carrying a large scar on his abdomen.
But also carrying something we hadn’t carried for a long time.
Hope.
For the first time in our lives, we started buying baby food.
Cerelac.
Baby purees.
Small feeding spoons.
Things most parents buy when their babies are six months old.
We were buying them when Neil was over thirteen months old.
And honestly?
It felt magical.
Because the best part of all of it was this:
Neil was eating.
He was enjoying food.
He was swallowing.
He was accepting feeds.
And even now, as I write this, tears fill my eyes.
Because unless you have walked this journey, it is impossible to understand why this felt like the greatest achievement in the world.
Neil had gone through meningitis.
His development had taken a step back.
His seizures continued.
But somewhere inside him, he still remembered how to swallow.
He still remembered how to eat.
And somehow, that felt like a message from God.
We started experimenting cautiously.
Very small quantities.
Very slow progression.
Because with short gut syndrome, every food becomes a science experiment.
Some foods worked.
Some didn’t.
Cerelac was one of our failures.
The lactose content was difficult for Neil to process.
Within thirty minutes, everything would come out as loose stools.
Ragi was another failed attempt.
We could literally see it passing through him without proper digestion.
And strangely enough…
we loved every bit of this process.
Because for the first time, we were discussing things normal parents discussed.
What food suits him?
What doesn’t?
What should we try next?
What should we avoid?
It felt normal.
It felt like parenting.
And after everything we had lived through, normal felt extraordinary.
My mother enjoyed this phase immensely.
For months she had watched him survive.
Now she could finally cook for him.
Prepare different foods.
Experiment with recipes.
Feed him lovingly.
For her too, this felt like a light at the end of a very long tunnel.
And seeing that happiness on her face gave me peace.
Then came another miracle.
Neil was pooping.
Not drainage.
Not output through tubes.
Actual semi-solid poop.
Something we had never seen before.
Something we weren’t sure we would ever see.
And suddenly there it was.
A simple thing.
A beautiful thing.
A miracle.
Life slowly found a rhythm again.
During the day, Neil would be disconnected from TPN.
The central line remained.
The overnight TPN continued.
But daytime belonged to Neil.
He was free to move around the house.
Free to be carried.
Free to sit with us.
Free to simply be home.
His meningitis, however, had changed him.
He wasn’t as mobile as before.
Most of the time he would simply lie there watching.
Observing.
Listening.
His focal seizures continued.
The clonic movements continued.
We still had no answers.
No timeline.
No certainty.
Only hope.
And then came Christmas.
December 2025.
We dressed Neil in the cutest Santa outfit.
But this Christmas felt different.
The previous Christmas had been filled with smiles, expressions, and endless photographs.
This Christmas…
our Santa mostly lay there quietly.
Not smiling.
Not reacting much.
Just existing.
And somehow that broke my heart.
Because I knew the Neil inside was still there.
He was just finding his way back to us.
Then came New Year.
Krishna and Akhila came from Bangalore to spend time with Neil.
We dressed him up again.
Clicked pictures.
Made memories.
But the photos had changed.
Earlier, we would struggle to make Neil stay still for a picture.
Now we dressed him, positioned him, and clicked while he quietly lay there.
Life had changed.
But we continued documenting every moment.
Because every moment mattered.
We knew therapy was now our way forward.
A therapy centre opened close to our home.
We started passive physiotherapy sessions.
When disconnected from TPN, we would take him there.
Sometimes he would react during therapy.
A small movement.
A slight discomfort.
A response.
And those tiny reactions became our motivation.
Because they told us something important.
Neil was still there.
And he was still trying.
Then came another small miracle.
His hair started growing back.
The same hair he had lost during prolonged TPN therapy.
Slowly.
Softly.
Beautifully.
And then…
two tiny teeth appeared.
His two lower teeth.
I cannot explain the joy that gave us.
We had never even imagined teething would become a milestone we would celebrate.
Yet there we were.
Staring at two tiny little teeth and feeling like we had won a lottery.
Whenever he smiled slightly and we could see them, my heart would melt.
By now, the neurologist had become a very important part of our lives.
The anti-epileptic medicines continued.
The seizures continued.
The uncertainty continued.
Would Neil have epilepsy?
Would he have cerebral palsy?
Would he recover fully?
Would he regain his milestones?
Nobody had answers.
And yet whenever I looked at him, I never saw limitations.
I saw magic.
Pure magic.
There was something about Neil.
Something that always made you believe he would defeat the odds.
Pongal 2026.
Amma wanted to perform a small ritual with him.
A simple tradition.
Showering him with fruits and flowers on Bhogi.
It sounds small.
But in our world, these things meant everything.
Every ritual.
Every celebration.
Every tradition.
We had almost lost the opportunity to experience them.
So we embraced each one with gratitude.
My Neil was magic!!! Pure magic! A cute magic!
10th January, 2026
Around 10th January 2026, another important decision had to be made.
Ever since Neil’s fungal line infection in September, we had been managing him with a central line. While it served its purpose, it was never meant to be a long-term solution. A central line required replacement every 7–10 days, which meant repeated procedures, repeated pain, repeated hospital visits, and repeated risks.
Neil was now eating, but only in very small quantities.
His weight gain remained painfully slow.
Most days he hovered around 5 kilograms.
He still needed TPN support.
He still needed hydration support.
And for that, he needed a more stable long-term access.
Dr. Dinesh therefore advised us that it was time to place a Hickman catheter again.
We were asked to get admitted on 9th January so that the procedure could be done the next day.
What we did not know when we walked into the hospital that day was that something much bigger was unfolding around us.
Dr. Nivash had suffered a massive heart attack.
He had been admitted to MGM the very same day.
The damage caused by the cardiac arrest had been severe. His brain had been deprived of oxygen for too long and the prognosis was extremely poor.
The hospital corridors felt different.
The atmosphere felt heavy.
Everyone who knew Dr. Nivash was shaken.
And so were we.
Because Dr. Nivash was not just another doctor in Neil’s story.
He had been there through so many phases of Neil’s journey.
Whenever Neil needed help, Dr. Nivash was always one of the people quietly standing in the background making things happen.
Seeing him critically ill was difficult to process.
We kept hoping for a miracle.
After all, we had spent our entire journey believing in miracles.
Surely one would happen for him too.
The next morning was Neil’s Hickman line procedure.
And what happened that day moved us deeply.
Dr. Dinesh came.
Even today, when I think about it, I struggle to understand how he found the strength.
His best friend was lying critically ill in the same hospital.
He knew the outcome was likely going to be devastating.
He had every reason in the world to hand over Neil’s procedure to another doctor.
Nobody would have questioned him.
Nobody would have expected otherwise.
But he came.
He performed Neil’s Hickman line insertion himself.
The same precision.
The same care.
The same attention he had always shown Neil.
As though nothing else in the world was weighing on him.
Only later did he tell us the reality.
Dr. Nivash was brain dead.
The family was preparing themselves for the inevitable.
He would likely pass away the next day.
I remember feeling completely shattered.
For a moment, Neil’s medical journey disappeared from my mind.
All I could think about was Dr. Nivash.
About his family.
About how unfair life could be.
And about Dr. Dinesh.
How he had somehow found the strength to fulfil his responsibility towards Neil while carrying such immense personal grief.
That day taught us something important.
Doctors are often seen through the lens of the care they provide.
But sometimes we forget that they too carry heartbreak.
They too lose people they love.
They too have families, friendships, fears and grief.
And yet, they continue to show up.
That day, Dr. Dinesh showed up for Neil.
And that gesture stayed with us forever.
We lost Dr. Nivash shortly thereafter.
And his passing felt personal.
Very personal.
Because he wasn’t just part of Neil’s medical team.
He was one of the many people who stood beside our little warrior and quietly helped him fight.
And for that, we will always remember him.
Even amidst all this, life had to move forward.
We knew therapy would be the biggest pillar of Neil’s recovery journey.
Around January 2026, our search for better therapies led us to something new.
Cuevas Medek Exercises (CME).
A specialised therapy approach for children with developmental delays and neurological challenges.
And that search brought us to Dr. Reshi.
Looking back, it almost feels like one more person God placed in Neil’s path.
When Dr. Reshi first met Neil, naturally he was taken aback by the complexity of his journey.
But after assessing him, he gave us something we desperately needed.
Hope.
Not guarantees.
Not promises.
Hope.
And sometimes, that is enough.
Our routine became intense.
Neil woke up around 6 a.m.
Feed at 6:30.
Leave for Santhome by 7 a.m.
Therapy.
Return home around 11 a.m.
Rest.
Feed.
Passive therapy again in the afternoon.
Reconnect TPN in the evening.
Sleep.
Repeat.
Every day.
Again and again.
The next chapter will cover Neil’s journey through his therapy.. What all he did, what all he enjoyed… And how well he coped up..
Because if there was even a small possibility that therapy could help him recover, we were willing to do whatever it took.
His weight gain remained painfully slow.
He hovered around 5 kilograms.
Sometimes 5.1.
Sometimes 5.5.
Then back to 5.2.
Short gut syndrome made nutrition difficult.
His intake remained limited.
His fluid intake remained poor.
Hydration was still a challenge.
Even in the middle of all this progress, we knew things weren’t entirely normal.
We knew the road ahead remained uncertain.
But for the first time in a very long time, uncertainty wasn’t the only thing we saw.
We could finally see hope too.
Looking back now, December 2025 and January 2026 were truly a season of small miracles.
Food.
Poop.
Teeth.
Hair.
Therapy.
Festivals.
Routine.
Things most parents take for granted.
Things we once thought we might never experience.
And yet here they were.
Tiny miracles.
One after another.
Giving us reasons to believe again.
As I write this, I realise we have already reached January 2026.
And I know there are not many chapters left in this story.
The next chapter belongs to someone very special.
Yajas.
His brother.
His biggest cheerleader.
And perhaps, without any of us knowing it then, someone Neil was waiting to spend a little more time with.
When Yajas announced he was coming back in February, we were simply excited.
Today, looking back, we wonder if Neil knew something we didn’t.
Maybe he was calling his brother back to him.
Maybe he wanted to make up for the time they lost when hospitals stole their previous visit.
Maybe he simply wanted one more week with someone who loved him unconditionally.
I don’t know.
But I know the next chapter after that will be the most difficult to write.
And I know I will need to gather courage before I begin.
Because some memories are beautiful.
And beautiful memories can hurt the most. ❤️
The Story Of Our Little Warrior Neil Saiesh 
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