“I pay tribute to pain, as life is born out of pain”

Says Lakshmi Kaul, who lost her only daughter, aged nine, to a freak allergic incident in 2017.

My name is Lakshmi Kaul, and I am Nainika’s mum.

In fact, a lot of you already know me as Nainika’s mum and have come to know of my late daughter through my Facebook posts, blogs, and letters to her.

And yet it took a long time for me to write this. Prerna Shah had written to me first in November 2019, a couple of years after I had lost my daughter to a freak allergy incident. In an email, she had sent me a set of questions and had quoted an excerpt from my blog as well.

Even though I have written and spoken about Nainika and my pain so openly, in a piecemeal, I struggled to put in words, my full story on Prerna’s request for the blog. I guess I was scared, not ready and unsure. I read and re-read her email many times, since she first wrote to me. Recently, in 2020, when she reached out to me again, having read them before, the words somehow came alive:

“Our idea behind this series was that everyone, at some point in life undergoes loss, and accompanying grief. And while there are no tailormade solutions or responses to how one approaches loss – be it of a friend, colleague, parent, grandparent, child, spouse, or a family member – the experiences have a commonality, an almost universal element to them. And in telling of these stories, we share with each other, a deep understanding, empathy, as well as our strengths and vulnerabilities.”

Loss and bereavement is something common to all of us, yet it surprises and consumes us.

Passively, we watch the world go by, get on with our day-to-day mundane, though seemingly perfect lives as we slip into darkness where nothing seems to make sense. We put on a brave façade, even smile but really, inside you want to scream, shut out the world and just sleep, never having to wake up, ever again. Everyone calls you ‘brave’ and ‘strong,’ yet you know you are just ‘broken’, ‘helpless’ and ‘weak.’

I suppose I could pause here and share some nuggets of positivity on survival, on life and its possibilities, memories, on life and about moving on. But instead, I will pay tribute to pain. Life is borne out of pain. A mother hurts a long time, before giving birth. The earth breaks before a seed sprouts and the skies crack for the light to pass through at dawn.

“Nainika is here!”

These were my words when I first held her in my arms. I was ecstatic as I had silent faith it was always going to be Nainika. I watched her as she navigated her way to my breasts and suckled at them; the natural, first instinct of a new-born is a joy to experience! To fix the third degree tear I had had, while delivering her, I was taken to the operation theatre and I remember blabbering all the way to the operation theatre, how happy I was today and that I was a mother to a gorgeous little baby girl called Nainika. I told them proudly, Nainika means apple of our eyes.

When the coffin arrived home before the funeral service, someone came and said to me, “Nainika is here!”

I had created space for her to sit in her favourite spot, clearing the couch but placing her coffin exactly there, where she always fought with her father to claim that particular spot to watch the telly. There was forever a competition between them on who bags the remote control to the television. She won, even today! I had bought a beautiful Indian traditional outfit for her to wear at the Kheerbhawani Puja this year, that I was holding. They opened the coffin lid and I saw her again. I put her ‘Indian dress’ on her and kissed her goodbye.

How do I describe my child?

I am often asked by strangers what she was like? The closest I come to explaining is that as a person she was a miniature version of me though with much better brains and God-like patience. She set high standards for herself and nothing ever limited her, not even her age. If she wanted to learn something, she wouldn’t wait to enrol in a class but would start teaching herself; she always knew how to. She spent a lot of time in her room, exercising, listening to music, writing, doing craft, re-arranging her room, creating research projects and books, setting up a kids’ club or even writing a blog.

Nainika Tikoo arrived a week before her due date on 18 February 2008 in the City Hospital, Nottingham. She left four days after she was medically declared dead on 22 May 2017. I had to turn off her ventilator on 26 May 2017 after having sat through the excruciating stem cell death tests to ascertain if she was alive on 22 May.

At what point does grief begin? Where does it end?

So, in sharing my journey of pain, grief, I wonder at what point did it begin? Was it on 20^th May when I received a distress call from her father, begging me to save her from this allergic reaction and to come home urgently? For the sake of simplicity, I will use this as a starting point.

I walked into a scene of shock and a row of ambulances outside our newly bought home in Harrow. She lay there on the floor of our living room, stripped naked, with just one sock on – pink and blue in her left foot (I still have this sock with me). At the point, I had no idea what had happened, and all I could guess was that it was an allergic reaction from the panic call I received earlier.

From that moment when I walked into our home, I was numb. Only responding to what was needed of me. The paramedics asked me to pack to go to the hospital and bring her stuff. I ran up, grabbed her hospital bag (we were used to going to the hospital owing to her asthma and allergies), put the car keys in my satchel lest her Dad decided to drive in that state and requested the paramedics to take him in the ambulance as he couldn’t be left alone. I would follow in a taxi I said but they insisted I travel with them instead so they could speak to me. I couldn’t have left him behind in that state with nobody to take care of him, so they agreed to take us both.

The journey to the hospital was only 15 minutes but it felt like 15 hours.

They asked me what had happened, and I couldn’t tell them. They asked me various questions about her allergies etc that I responded to. As soon as we got to the hospital, I messaged a couple of close friends to come to the hospital and take care of my husband as I was busy focussing on Nainika in the emergency ward. This was enough to summon them all to the hospital and within an hour they were all there – nine of them, most of them doctors! 

“There is irreversible damage to the brain”, the consultant said to me. They would need to shift her to the Intensive Care ward in another hospital and they said this could be anywhere in the country. I said, “Do what you must do to get her better.”

At best, paralysis for a few days and then recovery is what I thought to myself. She is a strong girl, and she will bounce back. It was already over an hour and a half since leaving home and finally she started breathing again. If you understand human physiology, you’d know that if your heart stops breathing it disconnects the oxygen supply to the brain and even moments of this is dangerous. Nainika’s brain was bereft of oxygen supply for over an hour and this meant her survival chances were next to none. The doctors were trying to tell me this all the way through, but they kept trying, hoping for a miracle.

A living nightmare.

Nainika’s father could barely get up and he clung to me, crying like a baby, apologising to me continuously. I calmed him down and said it’s not his fault. It was just an accident. I handed him to the nurse for I had to attend to Nainika and prepare for her to be moved to the paediatric intensive care ward at St Mary’s hospital in Paddington. There was hope I thought. Her heart was beating, and she was breathing. She will of course get better, just in time for her first residential camp with her new school friends. And she had a gymnastics competition too that she had been preparing for. Oh, and then her dance stagecoach performance, dance show and her first time performing with the school choir in the new school!

We got to St Mary’s hospital and though the consultant there told me, “there was irreversible damage to the brain,” I requested her to at least give Nainika 24 hours. On 22^nd May they declared her medically dead and asked us to let them know when we wanted to switch off her ventilator. The hospital staff were kind and very considerate. They let her stay till Thursday. On Wednesday, her family from India arrived to say goodbye one last time, hundreds of visitors, friends, acquaintances, strangers came to see her, pray for her and then on Thursday, I switched off her ventilator, alone. I never wanted to do it, but I had to.

The days at the hospital and afterwards felt unreal.

All those visitors – I met each one, calmed them down and told them that Nainika’s journey here was over and that she must now travel. I saw shocked faces, their eyes stealing glances at me, wondering how I could be this calm? They thought I had lost my senses and hence wasn’t crying.

The days until her funeral and beyond, we had visitors who expected us to cry as they hugged and offered condolences. But I stayed away. I was hardly home and each morning I got ready, left for work, and stayed there till late evening. At night, I would sob into my pillow silently, my eyes burning in the morning when I caught a wink of sleep.

Since Nainika died because of an allergic reaction, I ran a dedicated campaign to create awareness around allergies, and journalists, documentary film makers and a camera crew started filming and interviewing us. Nainika’s father refused to do it so this responsibility fell upon me, even without me volunteering to do it. I made this a mission in honour of her memory and a sense of urgency to do something before another child meets this tragic fate pushed me to carry on.

What is normal?

Weeks after her funeral, people began leading a somewhat normal life. For me, a part of me died. Everyone thought I was incredibly strong in how I dealt with loss but inside, I was wilting away. Often it is who we think are our own, who hurt us the most and I heard remarks such as “you were careless during your pregnancy and carried on working so Nainika was born with allergies.”

“You should have never given birth abroad and instead stayed in India – we told you to deliver the baby in India where she would be born as a normal child,” “had you been a caring mother, Nainika would never have had the accident.” The comments felt like daggers and I began avoiding dinner table altogether.

Then came the pressure to ‘have another baby’ so ‘you may bring Nainika back.’ Since they couldn’t have this conversation with me directly, they propped up her father to bring this up with me. I remember how angry I got at this proposal and snapped back: “I would choose to never have a baby if it were to replace her. Nothing, nobody would ever replace her. And I would anyways never do this to her younger sibling – for them to grow up in the shadow of her memory.” This was unacceptable a response and I was established as a heartless, uncaring woman who didn’t like children.

In December 2017, I walked out of our home and marriage, never to return.

The divorce was filed by her father and the marriage was dissolved in 2019 a few days after her birthday. A few months later, I realised that a part of her ashes had remained at the crematorium, forgotten by her father and without my knowledge. I brought her home in that box. Put her in her favourite T-shirt and hugged her all night, as I would when she was alive. Every day, for three months I slept with her ashes and for days I had no energy to get out of bed. There were clear signs of depression and people at work noticed though according to myself, I was putting up a brave face, working harder than before.

In November 2017, I started a new job as the Head of Confederation of Indian Industry in UK; a completely different role from my previous political positions. It wasn’t just a new job but a different life as well, and this was soon after Nainika’s passing away. It was almost a reset of my life itself and I couldn’t make sense of it. I accepted it all as fait accompli and carried on.

Today as I write this down, the memory is already patchy of the years gone by.

There is hesitation as to how much I open up – what wounds do I share with you? These aren’t just scars from her passing, but from before too. When my husband left me and his daughter as he got distracted for a few years, then returned to be a good father but forgot he was also a husband. Perhaps my own shortcomings as a wife too in response? A couple of years later, the fateful day that a loving breakfast father and daughter cooked together, ended up taking her life! As soon as she left, I realised how lonely I was all these years and the only companion I had was my child. A few months later, I was all alone, scared and broken, but nobody saw my tears or wiped them. Each night I died, and then gathered myself up to face the world, making an impression in my new role at work.

Then I read about Kaya, a little girl looking for stem cell donors as she battled a life-threatening condition. I signed up and tested to see if I could be a match alongside thousands of potential donors. The resilience of that child and her family encouraged me.

Someone wise said once, that if you think you are suffering, all you need to do is look around you and see others in more pain and misery than yourself. Kaya did that to me and I sent Nainika’s remaining ashes off whilst on a quiet visit to Kashmir, her motherland that she always longed to visit. I felt peace.

These months since her departure, I struggled to sleep alone or eat alone.

I always had Nainika to cuddle up to and to say “Mummy I love you” over and over again, even in her sleep. She would kiss me and hug me real tight. I missed this and a lot of other things. I missed arguing with her. I missed a lot of things and felt extremely uncomfortable eating alone. Slowly, I made peace with it all and learnt to enjoy my own company. A dear friend often reminds me, “those who can’t enjoy their own company, imagine how boring a company they might be for others?” It’s not always that you need to do something to keep busy. The day we learn to also do nothing and just relax in that sweet nothingness, we have learnt to truly be content. Happiness is really within us and it comes from very simple, little things in our daily life. 

You never get closure really and sometimes these things don’t even make sense, ever.

Life and its end is a continuous process. What is born will die. I do often wonder what she would look like as a teenager, and later as a university student and an adult? I sought comfort in watching her friends growing up healthy, doing extremely well in school and enjoying their progress. In these children I see a glimpse of my own Nainika, and feeling proud, I send them my silent blessings. There are friends and family who feel I must find a life partner, a companion and move on, settle down. Her father did that and has a loving life partner now. Each of our journeys are different and we eventually find our respective paths. The operative word being, ‘journey’.

About the author: Lakshmi Kaul is an Indian British resident of London. She is the Head & Representative of Confederation of Indian Industry (CII) UK. Kaul is also a columnist with iGlobal News of the India Inc group and often writes on international policy, India UK relations, human rights, diversity & inclusion in The Daily Guardian, Sunday Guardian, Kreately, Asian Voice, New World Order and a number of others. Lakshmi continues to campaign on allergy safety since the passing of her late daughter, Nainika and writes an occasional blog #ForeverNainika on social media.

Lakshmi Kaul’s account is a part of our series on ‘Stories of Loss and Healing’, read Mumbai-based sports journalist Nitin Naik’s story here. Naik lost his wife to cancer in 2015.

(Disclaimer: The views, thoughts, and opinions expressed in the account above belong solely to the author, in this case it being Lakshmi Kaul, and not that of The Good Story Project or its co-founders.)