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I remember my earliest

memory was, uh, my third birthday.

And I still remember the

dress I was wearing and the green flowers and

I was looking like chocolate cake and…

I remember being really normal.

I still watch videos today from my childhood.

-Aishu!

-Hello! -I think we're gonna miss…

-What are you doing here? -miss our train.

-No it's said just now, -I am playing

-fifteen minutes left. -with the snow. Whee!

-Whoo! -It's fun! Mum!

-Mummy, it's snowing!

I know!

Aisha just happened.

She was the desire of the universe.

Yeah, after having been through something as horrific as I went through with Tanya

we were not planning her.

We were not planning a baby.

I must have had the shortest

menstrual cycle of my life.

That's how Aisha was conceived.

Had it not been for my faith,

I think any other sensible person would have just aborted that child.

In Vellore…

Tanya had died and we had to take her to Chennai to bring her back to Delhi.

They put Tanya's body inside a plastic bag with ice cubes…

because they didn't want the body to decompose.

And I held her, uh, in my lap for those

hours that seemed like, you know, uh… eternity.

And you know, her hair was getting matted, I still remember with that

the… as the ice cubes were melting inside and…

And you have such conflicting emotions.

You feel like, "I hope she won't feel cold."

You know, just random thoughts.

"I hope she is not uncomfortable." And then you say, "No, but she is dead" and…

-it's just absolutely horrific.

For some reason because we were in missionary hospital where Tanya died,

Aditi somehow felt that Tanya has gone to Jesus.

And she wanted to therefore convert to Christianity.

And also have a burial for Tanya.

Had it not been…

for me studying the Bible, hearing, listening

uh, to Bible classes,

I just knew that God wanted me to have more children.

And it was-- Ishaan was a faith baby.

I used to be very close to my brother.

And we used to play games and

-play in the park and--

It was quite normal from what I remember. Hmm.

-Here you go!

Ishaan was born, and we were happy, and that was the end of it

because we did not want to take the chance,

did not want a repeat of what happened to Tanya.

We thought it would be very very irresponsible.

My faith, you know, really says, "Thou shalt not kill."

There is no caveat in front of it.

There was no escaping it.

I could not kill that child.

Aisha was born with a white coating.

Her tongue was totally white.

And I used to tell the doctors, "Please test it."

Because one of Tanya's first symptoms was fungus in the mouth.

It was again, she doesn't seem to recover from

colds and flus and minor illness in quite the same way that you know…

Tanya could not.

It was right after I was born,

all the problems happened.

So, we went to the UK.

And then, that's where I had the transplant and…

that's where…

everything advanced from--

We were-- We didn't even have enough money to stay on our own.

We were staying with the Kamats, who are friends from college.

And were godsent, I think.

They were the most wonderful friends we could have had.

I remember our first appointment with

Great Ormond Street was 2nd of August, 1996.

And uh… she was diagnosed, I think, by the 10th of August.

And our worst fears were confirmed that Aisha indeed has…

Severe Combined Immune Deficiency.

It's a one in a million chance

that two people will meet and

happen to carry the same recessive gene

because the truth is that all of us have

six to eight faulty genes.

We are all carrying them.

But it's only in meeting and marrying somebody with a…

common gene which happens…

The statistic is one in a million.

I knew that my daughter has a terminal illness.

I knew there was a cure.

I knew that I needed to raise 150,000 pounds…

but I didn't know what to do and where to start with it.

The doctors did say that a regular bone marrow transplant

probably the outcome would have been a very half-baked life,

you know, with a lot of medical issues.

So, they then proposed that they try the

first stem cell transplant

for Severe Combined Immune Deficiency.

I remember the doctors

saying that if we had… if they had cells from a perfect match,

they could actually uh… give that

to Aisha without chemotherapy.

They would try it.

And actually, that would even bring the cost down.

And I remember

saying to Niren that I am very happy to conceive a child

and abort that child at three months

in the hope that the cells of that child

would match Aisha's and they could use

the cells from the fetus to save Aisha.

So, the very woman, the very me

who was not willing to…

abort Aisha

was very willing to abort another child…

at three months or even two months

or do whatever it took to save Aisha's life.

On the 25th of March this year,

Aisha Chaudhary was born with Severe Combined Immune Deficiency

known as SCID.

Aisha's parents have managed

to raise 60,000 pounds from all their savings.

So, the radio appeal goes out.

-Aisha's story touches the

hearts of a nation that is, you know, not her own.

It's hoped that the cost won't be as much as that.

But the Chaudhary family desperately need our help.

Once again, please make your donation payable

-to Great Ormond Street Hospital.

I was taking a taxi and going to the Great Ormond Street.

The taxi stops.

It's a Pakistani driver, and he said to me

that there is a little girl called Aisha in this hospital who is sick.

And he gave me five pounds. He said, "Can you give this to her father

because I believe they don't have money."

And before we know it,

the cheques come flooding into the Sunrise Radio's offices.

And bringing from two pounds to you know

lots of cheques.

And then we were told on Monday that you know, it's not 150,

it's 250,000 pounds!

I think we had maybe ten days and the whole, one entire room was

filled with envelopes of donations for Aisha.

And I was just

stunned by the generosity of this… this country, you know.

The UK. You know, we were not UK citizens.

We were Indians.

We were visiting.

I just wanted to save the life of my daughter.

But how…

you know, how deep inside so many of us are basically good

you realize at moments like that.

That, you know… people have so much goodness in them.

I think Aisha's life was saved because

of what we learnt Tanya's time.

My story is different from most

because I had to undergo a bone marrow transplant

when I was just six months old.

And now, I have pulmonary fibrosis

which is a serious lung disease.

My name is Aisha Chaudhary

and I am 17 years old.

And today, I'd like to talk about

what really matters most to me in life.

Yeah, Aisha was the first child in Europe

to have a stem cell transplant

for Severe Combined Immune Deficiency.

But just to be on the safe side

because they had never done it before, they also gave her the marrow.

My bone marrow and my stem cells, they arrived

in Aisha's room and they were

hooked up and she was basically intravenously given it.

And Aditi kept you know kissing her and saying

"This is from Dad, this is from--"

"This is from Dad. Make it work, make it work."

Come on, cells! Come on, cells!

-Come on, cells!

Come on, cells! Papa's cells! Papa's cells!

This is how madly we play every night

to get the cells to work. Okay?

Okay? Come on, cells! Come on, cells!

We were joyous. We said that, you know, this is now--

We have taken care of it.

She is going to outlive us.

And we said "This was only temporary

that I look after Ishaan

and Aditi looks after Aisha in the hospital."

And soon we would be together.

Come on, do something for my son.

-Ishaan. -What? Is he in there?

What's he doing inside the video camera?

Well, hello!

Hey! We are going down to see your sister now.

-Alright. -Come on, let's go.

I remember Mum would send me these videos

like walking me through the hospital,

to explain everything and seeing some clowns.

I remember one in particular. I was staying at my grandparents'

at that time and I came home from school.

And I was really excited because there was a tape from my mom that…

definitely stuck in my memory and that was one of the

first times I realized you know like she isn't that well.

Even though I was young, I kind of knew.

Hi, Ishaan darling.

This is Mumma.

-Mumma will come back in a few days.

-God bless you.

God bless you, Aisha darling.

God bless you, sweetheart. Here, Ishaan, see.

This is Aisha darling.

Oh, no! She has taken her tube out of her nose.

-Oh, my God!

Nine months was a long time.

I was really suffering emotionally without Ishaan.

You know, and I had no support system in the UK at all.

We were alone, Aisha and me.

Hey, sweetie!

My mother came for three-four months

and that was like a huge relief but uh…

I was really feeling depressed.

I mean I think I was--

Today I can say I was probably clinically depressed at that time.

Niren realized that I could no longer handle this alone

and he would have to move to the UK

because it takes ten years for a transplanted

immune system to completely mature.

I was in isolation for the first five years of my life.

Basically, no one

my age could… I couldn't be really be around them.

So, I guess that kind of

made me a little awkward and a little shy.

So, I have always had very few friends.

I think the initial years uh… when I was working in Holland,

I was working there Monday to Friday.

And then on the weekends, I would come back home.

Aisha!

Oh!

So, that was hard.

Uh… I did three years of that.

Being there on the weekends and just uh, trying to make memories with them.

I remember Aditi was away for some work

and I took Ishaan and Aisha for a holiday.

-Oh! -Did you see that?

And we used to have a fight every night, Aisha and me.

Every night and several times during the day.

Aisha… did you have a nice time?

Hmm.

Why?

-We played with the sand. -No. Just…

not right.

-Are you missing Mummy? -Mm-hmm.

-Mm-hmm.

Aisha missed out I think those two years of

just having a normal childhood with the sense of

you know playing with the little kids and…

and she became therefore as a result

very very attached to Aditi.

So, I was an intrusion

in her life.

Here was this guy who was suddenly there in between

Aisha and Aditi.

So, there is a lady called Barb Ballard

who started this SCID mail group.

Her son Ray has SCID. They are in the US.

Almost 20 years ago when this group was started it was really

uh… not just a support for the parents.

It was also meant to uh

help doctors to make better decisions.

-Come on, Aisha! -Yay!

Aisha has won!

-Yay! Well done, Aisha! -Well done!

We put her in a playschool.

But she would never speak to any of the children.

She spoke to all the teachers, but she

ignored all the children.

She just never spoke to them.

I remember from the SCID mail group

they said that children who have bone marrow transplants

because they beat death, they defy death when they are very very little,

they start to feel uh…

very big inside them.

They feel like they are more important than the rest of the world.

Aisha felt hurt very quickly

uh, because she really craved

uh… friendships.

Peer relationships always were hard for her.

Higher! Higher!

Higher! Higher!

And she's coming back.

And I remember when Niren told us

that we will be moving to Holland, she was quite happy

because she said, "Oh, now I won't have to you know, handle them!"

-I was learning acting, -Hmm.

I went to uh, um…

I went to the LAMBDA School of…

like, the drama school.

-Yeah. -And then I used to do plays

-after school, so that was my interest…

in Holland.

The first signs of problem which I guess

I didn't realize was such a huge issue was that

her uh… height was very less for her age.

But the doctor said, "As long as

she is running parallel to the growth chart,

even though her growth is way below, it doesn't matter

because the chemo will affect her height."

As we saw her with her friends,

and you visibly start seeing the difference

and then you know that there is… it is not normal.

By the year 2005, they had discovered that even though Aisha

had normal levels of growth hormones, something had obviously gone wrong.

And uh… she was not growing in height or weight.

She had functional issues with it.

Like when she was in a group of people, she couldn't hear what people were saying.

If there was a lot of background noise or music,

she couldn't hear them because she was just

way lower than where her friends were.

And then we got her checked out in the Netherlands.

And there, they said that her body is producing the growth hormones.

But they are having no impact.

So, they started on the growth hormone only as a test case.

And actually she was the only one in our group who

had such a picture

that there was nothing wrong with her growth hormone levels.

But she was not growing.

She ended up getting bullied a lot because of that.

Kids in the bus also used to taunt her.

Make all kinds of uh…

remarks about how small she was and how

actually she is a liar because she can't be that…

that old and she is much younger.

And I remember she got off the bus one day and she just broke down

and she said, "I can't take it anymore.

I am so small…

that everyone thinks that it's okay to bully me.

And I just don't want to live anymore.

-I just wish I was dead."

-Doggy? -This is Kobe.

Say hi, Kobe! Hi!

Aisha and I decided that we really wanted a labrador.

The minute we got there, he was the first one to walk over

-and I was like, "He looks like a Kobe."

And she was like, "Yeah, he does."

This is my Kobe hug.

I find it so interesting

that even though they can't speak a word

dogs can become the closest thing to your heart.

Your very best friend and your companion.

I love to observe them

and try to figure them out.

And I can't help but get inspired.

Dogs are so similar to humans

yet they carry qualities

that we humans struggle to achieve at times.

Dogs can find happiness in the smallest of things.

Dogs are delighted with a walk,

ecstatic with a small treat,

and in heaven when you tickle their belly.

It got on you.

She was very very happy when three months later

you know there was a shift in her growth chart.

So, then they tested her to see if her ovaries were working.

-And they realized that even her ovaries

had been damaged by the chemotherapy.

So, she would not enter puberty naturally.

Uh… she had to have medical help for that.

Because Aisha said, "So, I will never be a mummy."

And I said, "It doesn't matter.

You know you can always adopt children."

-Woo-hoo!

So, the chemo had caused quite a lot of damage but

the doctors were very very clear that

without the chemo, she would not have survived.

In 2007, Niren was offered this position

to move to India with the "Yum"…

and he was so keen to take it.

I just didn't want to take the chance with Aisha's health.

So, I spent almost 20 days talking to different doctors.

We had all her tests redone at Great Ormond Street.

Doctors at Great Ormond Street had no concern.

I spoke to the doctors in India.

Most of them kind of said, "Don't come back."

A family is made up of four people.

It cannot all and only be about Aisha.

Bye, Aisha! Bye!

-Thank you! -Bye-bye.

-Hey, Aisha!

-Yeah?

Do you have anything to say?

Yeah, I'll miss everyone.

-Ow! -Hey!

-Come on!

-Give me!

Whoo!

-Aisha, say "Happy Bhaiyya Duj"--

"Happy Bhaiya."

-Whatever! -Eat it!

-Ah!

Alright!

Aw!

I remember taking her to Dr. Taneja in India

just to have her American school form filled out.

It was him who noticed

that she had a slight uh

caving on her chest on the left side.

I rushed her to the UK and that's the first time we knew that

you know she had only 40 percent lung capacity.

Doctor said, "It's okay, she won't run a marathon.

But you know it won't be the end of the world.

We will keep an eye on it.

This is a side effect from the transplant

but you know, it's not going to be life threatening."

She would often say, "Why am I so thin?"

And then I would say, "Eat! Eat some more."

She used to say, "I don't know what is wrong.

You know, I take two bites and I am really hungry.

And I order this big meal. I take two bites and I am full."

Aisha was assessed as too below weight

because she wasn't able to orally take

as many calories as she needed to put on weight.

They decided that we should now

insert a mic-key button into her stomach and she should be fed through the stomach.

I have a tube in my stomach.

So… it's a feeding tube.

To wanna have to put that in,

that was the most painful thing I've experienced.

It was a whole surgery.

-And they put a disc inside your… -Hmm.

your stomach, and then it's attached to a tube.

-So um… when I had to put that in

that was the most painful thing I have

ever experienced. Because I have never

remembered having surgery

-so that was the first, you know like -Hmm.

thing um… I remember like

screaming in pain after I woke up and staring at the wall

not knowing what had happened.

So, that was really tough.

She was put on a certain type of steroids.

Now these steroids… the side effect is that they

have an impact on your muscles.

And although they open up your lungs,

they actually waste away your muscles and you can lose mobility.

And Aisha…

suddenly from one day to the other was unable to walk.

One night I remember that

I suddenly heard Aisha screaming at night.

And I ran to the room.

She said to me that "Dad…

something's happened to Kobe."

So, I look at Kobe.

And Kobe is, you know, quite a young stud at that time.

He was maybe six to seven years old.

And he was just whimpering in a corner near her bed.

And I asked him to get up and he just couldn't get up.

He tried to get up and his legs would shake and he just fell down.

And she started crying and saying, "What has happened to Kobe?"

And she told me that you have to take him right now.

It's the middle of the night, two o'clock.

"Take him right now to a doc!

And make sure that he is okay."

And after maybe two hours of me roaming around

trying to find a doctor which I couldn't.

I just opened the boot of the car.

And this guy just bounded out as if nothing had happened

and started running like mad.

Oh, my God!

Now I had heard of this thing of you know

dogs are so faithful and so loyal

that they take away the illness of the master.

And whoever they are closest to,

they start reflecting that.

And then I think we changed her medication.

Gave her steroids that didn't have the same side effect.

And… slowly her mobility came back.

I… I am the one and only…

Bob Marley!

-Yo!

In 2009, November, Aisha collapsed on the stairs in school.

So, when we took her, that was the first time

that they noticed that there was a drop in the lung function.

-And she has something called

pulmonary fibrosis.

That's the first time I heard of pulmonary fibrosis.

He uh… drew this graph

and said, "Well, just to explain to you,

you know her lung capacity was at 40 percent.

Now it's here at 35 percent.

And uh… you know it could go all the way down to zero

uh… in time or it could…

sort of go like this and just stabilize at some point.

Ishaan started crying.

Niren had tears running down his face. I was crying.

I knew she had heard and I knew that she knew what that meant.

That basically meant that you'll--

It's the hardening of the lung.

One of the things that causes it can be chemotherapy.

It's irreversible, so, your lungs just get harder

and harder and harder that you can't breathe.

Dr. Rosenthal said "Well, you know her best chance is to have

part of your lung because she is so small.

Because you are the donor."

But he said Live Lobar Transplant in the UK is not ethical.

So, an ethics committee would have to, you know

sit and it would take a bit of time to determine that.

And Aisha suddenly piped up and said, "But it's my birthday, it's Holi.

I want to go back to India for Holi."

Now life can be tough…

when every single breath you take

is a struggle… and…

the slightest infection

causes a serious, life-threatening exacerbation.

I can either choose to be happy

and try to smile through all of my difficult times…

or I can choose to be miserable

and get overwhelmed by it all.

Now it's not that by being miserable,

I am going to get any better.

So, I may as well choose to be happy.

And if I have to have pulmonary fibrosis…

I choose to have a happy pulmonary fibrosis.

So, happiness is clearly a choice one can make.

No matter what, no matter where,

you can find it if you look for it.

After that, we actually reduced her time at school.

She was then going to school only half time post that diagnosis.

She was not able to do much physical activity after that.

She would not run.

She would walk everywhere.

She was breathing about

28 times a minute.

And the normal breathing rate

for her would be around 16 to 18 to 20.

She was, uh, prescribed

one liter of oxygen a minute

right from 2010 onwards, but she refused to use it.

We went to Rishikesh on a school trip.

-Hmm. -I just had a cold.

And so, I was coughing in the middle of the night.

My roommates, they were like

"Ugh! Why are you coughing so much like…

like, shut up, you know like--"

And-- And I was-- I didn't know what to do like

so, I ran in the middle of the night to the…

-to my um… to my nurse -Hmm.

and to her tent… and I was balled my eyes out.

I am not gonna name names, but kids could just be mean.

She always was short

and like her growth was stunted due to her illness, so

one day she came and she was really upset

because one girl who was her friend like

got on her knees and was like "Oh, what's it like from down here?"

and you know just kinda like…

like take the mic out of her.

And she hated it.

Ishaan started his university in 2010.

He went off to the US.

So, this is the room. Room F!

And you can see…

It's a luxury bed.

Kind of struggling.

We got Rolo shortly after she was um…

diagnosed with the pulmonary fibrosis.

It was a new life-- In her life, it's a lot of fun

you know when you have a new puppy and then

while she was at home and I think a little time I was away in college

and stuff, she would uh…

just kinda have them to chill with which

which, you know made her really happy.

-Not now, please.

-Out.

I feel that happiness

is also doing what you truly love

and for me, my love is for art.

Simply because it allows me to express myself

in such a beautiful and unique way.

As I dip my brush,

and the vibrant colors of paint…

I can almost feel the paint

being smeared on to the fabric of the canvas.

I tend to forget all of my worries

and the difficult situation that I am really in.

It almost becomes, a whole other world

where-where I can escape

at least for a little while.

In 2012, when we went to the US for a five-day visit

to see Ishaan in his university.

At that time I thought that she is very very interested

in this boy because he came and picked her up

and just took her to show her the university and stuff.

And I thought that's interesting.

I didn't know he was such a good friend of Ishaan's.

I had never seen Aisha be like smitten with anyone like that.

He saw how cool and fun she is, so he was chatting with her a lot.

And then, it kind of

stretched a bit further than I thought

because they stayed in touch.

GOOD MORNING, FATTY

When she fell in love, she just absolutely blossomed, you know.

She was so happy and she would just

block out… her physical condition and

not think too much ahead in the future. Not even a few months.

She was just so alive in the moment and so joyous.

Hi!

Okay, yeah! I've tried this like so many times.

Um…

yeah!

I just gonna see if it works.

And I'll post a longer one

because…

my mom's sleeping.

It's awkward.

When there used to be a planned phone call

with… with this guy, she would throw us out of the room.

And say, "Don't come and don't disturb me.

I am very busy for the next few hours."

And she would chat with this person for you know

quite a few hours and she'd be beaming from ear to ear.

Part of her lung fibrosis is

that the lung becomes very sensitive

to air and everything in the air.

So, she had to be on an anti-allergen every day.

And this anti-allergen was pretty strong and you know

it was giving her a lot of social anxiety.

Then, she was also getting very terrible nightmares.

One of the things I really wanted to explore was the lung transplant

because, for me…

that was the only way

that I would be able to extend her life

by another five years

and in those five years perhaps…

you know some other medical

advancement may have happened.

I always knew that I would not be party to it.

I would not be able to party to it

because for me, it is a huge ethical dilemma.

It can reduce Niren's life.

You know, depends. He… the…

I-I just--

For me it's very difficult to uh… to uh…

uh… condone something like this. I-I just can't.

It just seemed like way too invasive for…

for the odds and… and what it would have really given to--

It wouldn't have even given that much.

Because what… what's even living

if it's just so miserable and you can't do anything!

I felt, she should make this decision for her life

whether she wanted a lung transplant.

And I was okay with her having a lung transplant from another donor

but I had huge reservations.

It was in 2014…

that the number of breaths that she took

became 44, at rest.

If she had a coughing fit now, she would sweat profusely.

She would-- Her body would really be under a lot of stress.

Although I have this disease,

I am still grateful that I can walk around

and do what I love to do.

And I am even more determined

to make the most

of this wonderful gift of life that God has given me.

Of course, there are days when I feel extremely down.

Where I feel like simply

curling up into a ball

and just giving up!

But then the realization

that things could always

be much much worse

always pushes me to get back up on my feet

and put a smile on my face.

I accept who I am!

I accept where I am at.

And I accept the challenges

that I am battling with today.

As Anderson once said,

"Enjoy life, there is plenty of time to be dead."

Thank you.

-Thank you.

In February of 2014,

Aisha had just finished giving her happiness talk

at the shift conference and uh…

when I took her to the bathroom to brush her teeth

she collapsed and said, "I can't breathe."

And I kept-- I increased the oxygen

right to the maximum that we had

on her machine and she still couldn't breathe.

And so we had to rush her to hospital.

And they did a lot of tests, but when I sent them to the US

they didn't agree that… her heart was alright.

They felt her heart had definitely now gotten involved.

Her heart was so bad

that she could not even sit with her feet dangling on the bed.

Her feet had to be elevated.

And uh, if she sat up in bed, her heart used to flutter

so badly that she just had to lie back.

In a position like that,

you're not really going to have

any quality of life.

You're not going to be able to move, your muscles are going to go.

So, I took the mic-key button out.

And uh… guess what!

Her heart stabilized.

She was able to sit up.

She was able to dangle her legs off the bed.

She was… able to go back to swimming even.

Amazing!

And Aisha and I used to have

a lot of discussions about

sleeping with people.

And she would tell me, "How can you be that close to somebody, you know."

Don't your armpits smell?

"COME, LET US FIND HIM."

I would like to call up Aisha Chaudhary

-to receive her certificate of attendance

from the American Embassy School.

She got a certificate of attendance.

She did not get a diploma.

It looked exactly the same and they were so wonderful.

They made it, copied it exact.

He decided to surprise her

for her graduation from school.

And so since this boy came down to Delhi,

she decided to give him the card.

It was hard for me to read that.

That was the first time I directly had been

able to hear, like see her feelings you know, and it was so direct

and beautifully innocent

and she wasn't asking for anything…

at all, she was just…

wanted to say how she felt, you know.

I think once she realized that she was…

feeling so much emotion,

she wanted that to be reciprocated.

She wanted to have an honest conversation about it.

Aisha was once a part of a bridal shower

where she was picked

to be dressed as the bride in toilet paper.

And uh…

she won that afternoon.

I remember not discussing it with her.

But I remember just… her

holding me and we hugged each other for a very very long time

that evening.

Um… looking at the photographs, you know…

she knew that she may never get married.

And attending that wedding

really brought that you know… uh…

brought all that to the surface.

But we never really discussed it.

He had a wedding in his family and I remember he did not reply to her

and uh… she was so hopping mad.

For two months, she was like, "Oh, my God! Has he read it?

Has he lost it?

Does he even have the letter? Did he even read it?

Or did it get lost somewhere in the travels?

Why isn't he saying anything?"

She went on this emotional roller coaster of

the highs of being in love

and then expressing herself.

And then, somewhat feeling abandoned because

you know this kid didn't really know

how to deal with it.

But you know somewhere it is--

I feel happy that she experienced the joy of being in love.

Such a wonderful part of being alive.

And then in 2014, as her health declined more and more and more

and her coughing fits were becoming worse and worse.

She was doing less and less.

She didn't even have the energy to

hold the canvas to paint.

She could no longer paint.

Aisha would also get quite annoyed when she felt

the unsaid expectation from people around her

that you know, "How can you be

upset today or how can you be sad

with what's happened to you, I mean…

given the fact that, you know, you talk about happiness."

And she would very often

say to me, "You know these talks…

you know, they just talk about one aspect of life

which is you know just happiness and everything is good and…"

She then started to just jot down her thoughts.

And uh, when she showed it to me…

I think she had about

uh… 30… 30 quotes.

And she called them her epiphanies.

Me and her had a Google word doc…

that I would look at while I was at work.

Um and I would check out

you know what she has been writing and just would comment on them and--

It was really crazy for me to--

It was the first like deep inside I had into

how she is thinking it.

It's really hard when you are losing one thing

after another, after another, and the loses are just piling up.

You know, so from not being able to walk

she went to not being able to get out of bed

to even have a bath or have somebody bathe her.

That's how little breath she had left in her.

and he was like, "Mom is not… not doing good.

She's been acting really crazy and

she's locked herself in a room and she won't come out.

Like, can you speak to her?"

So, when I spoke to her though, she was just like…

jabbering about some stuff

and I was getting really upset 'cause I had never heard her like that.

It was really scary

to hear your mum just like comp… like off the rail.

I had to force her along with her brother…

uh, to take her to the hospital.

In the car… she started speaking in the voice of a little girl.

That really completely froke me out.

And she said that her name was Aisha.

And she said she is gonna die.

Her brother, fortunately who was there

and her sister-in-law.

So I told them, "You please look after her, I have to go back to Aisha."

And I was paranoid. I didn't want anything to happen to Aisha.

Because what if Aisha dies in the next three days?

And Aditi comes and there's no Aisha!

I mean, she will then you know permanently…

lose it.

She had this incredible sense of humor, Aisha!

So, she said to me, "What's happened to Mum?"

Has she gone cuckoo?"

She said to me.

I said, "Yeah, Aisha, she hasn't slept."

And she rolled her eyes.

"She is a drama queen!"

And even when after Aditi came back,

she was like a zombie for like two weeks.

She was so drugged out. She had no idea.

I think for another couple of days, she didn't…

talk or reach out to Aisha

which was unthinkable.

And I think that must have really…

rattled Aisha as well.

The fear was growing because now the last medication left really was morphine

because when a child has uh…

uh… has lung fibrosis

um… they can feel a lot of suffocation.

I told her about the morphine.

I told her that we are going to be starting it.

And I remember she said, "So, what does that mean?"

And I was just quiet. I said, "It will help you, Aish."

And she just said, "How?"

And then she said…

So now, the book was, the project was on

and I felt that because she had that to look forward to…

that she would not give up very quickly.

And in some ways, I didn't want it to end.

I remember when, you know, they were editing uh…

the book,

she would fight over every full stop, every comma!

She didn't want…

you know, the profanity that's mentioned in the book--

She didn't want that removed.

And she said, "And I don't want anyone to have anything to say

about how my book will be designed or how it will look.

I want to have the final word."

Aditi and I were taking turns

to sleep with her because she did not want to be alone.

So, this night I was sleeping with her

and giving Aditi a break so she could… she could uh…

be in her room.

And I think at six in the morning,

Jeet called me from the kitchen.

And he said, "Something has happened to Rolo."

So, I run out of the room and he is dead.

Rolo has just… passed out.

I-I touch him and there's no heartbeat. There's nothing.

We didn't… we were not expecting him to die. He was only three years old.

And uh…

I thought it was important for her to see him…

one last time.

And I am not sure if that was the right decision but…

she was freaking out because he had been dead since 8:30 in the morning

and uh… we broke the news to her

when she woke up at about 12:30 in the afternoon.

I can't forget the piercing scream that she let out and this is…

from Aisha who couldn't--

She was not able to breathe

and she used to say you know, "I feel so bad I can't even cry.

I don't have the lung capacity to even cry."

And she screamed

which meant, you can imagine the kind of effort that it took.

I rush into her room and she was

thrashing about and she was

so so so upset!

And she started screaming and… and…

at God and she said, "You know, what do you want from me?

You know, you have taken everything I had, now you've taken Rolo."

Niren hurriedly then took him away and uh…

to this place called, "Paws in Heaven."

And they normally burn the… burn the body

and they bury the ashes with the name.

She said… "I can't imagine that you burnt him into thin air."

That was the day I realized that we cannot cremate her.

We… we should bury her.

You know because I buried Tanya because of my faith.

But uh…

she would have preferred to be buried.

It was like a mother losing a child,

like that's how upset she was. Um…

and I think a part of it was also her grieving her own death.

She was just absolutely in pain.

It was so much emotional pain and physical pain

because her body would not allow her to cry.

And I remember…

increasing the oxygen and increasing the oxygen

and her saturation is falling.

And she was just screaming, screaming, and howling.

And she kept looking at me the whole time

and I knew what she was thinking.

I knew she was thinking that this will be you, soon.

I must confess… that

I did wonder…

if I was going to die…

and I would have sleepless nights

just thinking, tossing, and turning

with this idea that soon…

I may be gone.

And if that's going to happen…

what's the point…

of anything?

I think about this for hours

and get nowhere.

But then it suddenly struck me…

that I am not really alone in all of this.

Is it not true that not just me…

all of us sitting in this room today

will be gone?

Just at different times.

Some sooner than the others.

So then, if death is the ultimate truth…

what should really matter most in life?

Aisha… only mentioned God

towards the very end of her life

where one day she said to me, "I am so angry with him.

I think he is like this big bird who just

hovers around and shits on me every now and again.

And he has taken so much from me.

And I am really mad with him."

And she said, "I want to throw darts at him.

Just like he throws at me."

And I said, "You should!"

So, I said, "So…

whose picture do you think I should print out?"

And she said, "I want Jesus' photo there."

We had planned a book launch party for Aisha

on the 28th of January.

So, she got excited and said,

"I really want to get a dress

and I have spoken to this friend of mine

and she is coming and she is going to design a dress for me

to wear for my book launch."

-Hi!

Hi!

Hi! Chips!

Hi! Hi!

I had flown back and I had decided to extend my trip.

And Mum was taking a lead on the party.

And there was a lot of hustle-bustle with that.

But Aisha was more concerned about

this interview that was about to happen.

Um… it was that last interview that she gave.

What is the message you want to give to the world?

Everyone's just fighting their own battles together and…

we are all on a roller coaster ride.

Writing this book has really

uplifted me and so

I wanted like my readers

to find peace

on whatever roller coaster ride

they may be on, so…

I hope that's what will happen.

We were up really late till like four or something…

and I went to bed and I woke up

uh, to Aisha coughing.

Santoshi, the maid, woke me up at 11.

And something in her voice told me that

this was really bad.

I rushed into the room

and I put my hands on her

to give her some touch healing and

started looking at all the monitors and

managing the oxygen…

and uh…

her cough…

was really really really bad.

I actually rang Niren's secretary and said,

"Send him home! Send him home now!"

She was like really breathing very heavily and she was you know really…

looking very uncomfortable and thrashing about.

And that's the time when she held onto my hand and she said,

"You know, I don't want to die. You know, save me."

And I said, "No, no, nothing will happen to you."

The pulmonologist came

and she said, "It doesn't look good. You know what this means."

And she spoke to the critical care specialist.

And he said uh…

"No, we… we should not move her now

because just moving her can kill her.

So now, just leave her there."

And life had come a full circle. We had gone to the Kamats'

um… to save a life 18 years back.

And Rita heard in Aditi's voice

the previous night that she just…

felt instinctively that Aisha doesn't have long.

And she took a flight and she landed.

Rita was sitting at her feet giving her Jin Shin Jyutsu.

She didn't want to move from there.

Niren and Ishaan were on either side of her.

And I just left them to it.

And I think part of me was

so scared that I was chicken!

I could not… I could not…

be with her at that time.

I had to be there for her but not with her.

The doorbell rings, I go there, open the door.

The book is there.

I run to Aisha's uh… bedside

and the book's title is you know like braille.

It's embossed, My Little Epiphanies

and I run her fingers on the…

on the title of the book and I said, "Aisha…

your book is here."

And she nodded faintly and she smiled.

We've run out of words.

There's nothing left to say.

And we're just holding each other.

And just… waiting.

I told her like, "I love you so much and…

I may act like I am more hard and I don't…

I'm okay, but

I think about you every single day and…

like… you mean so much to me.

She got up,

she took off her oxygen, she gave me a kiss like…

I did say to Aisha in the last year of life that

"Do you think that it was easier for Tanya?

That Tanya's life was in some way easier than yours.

She was actually very upset with me

and she said, "What kind of question is that?

Why would you ask me that?"

It was very very selfish of me

because somewhere I think I wanted Aisha to absolve me.

Absolve me for having… had her

saved her life, taken her through transplant

only to give her all the pain of a fibrosis.

Because somewhere I think if I didn't believe

"Thou shalt not kill"

then none of this would have been… have happened to her.

Do you plan to write another one?

Um, I am thinking maybe…

maybe a sequel…

of My Little Epiphanies…

because like my thoughts are never-ending…

so, um…

or… I am not sure.

Maybe, I don't know.

I was once again

in the same graveyard where Tanya was buried.

And they said that now we do vertical graves,

one on top of the other

because we don't have room.

And which meant that, both my daughters will be in the same grave.

And that was just…

I mean just unbearable for me.

Some comfort that my daughters were together

but I think…

it was mostly grief.

People stood in silence

for Aisha in Jaipur at the Lit Fest

at the very same time that we were burying her in the ground

in… in Delhi.