“Mom, I want to participate in the marathon,” announced my eight year old daughter before heading for her afternoon siesta.
Now, that would ordinarily make mothers happy, but the mother in me was miserable. I was no ordinary mother, she was no ordinary child and the task by itself was extra ordinary.
I looked at the now soporose kid and closed my eyes thinking of those golden days!
“She is so pretty! She is so lucky for us. Her dad got promoted out of turn!”said her grandfather.
“Not only that, I also got a huge increment and I have bought the 3BHK which was earlier out of our budget. My princess is surely lucky for me,” her dad announced.
We named her Naivedya, her grandfather chose to call her Thanga Kili (Golden Parrot). Obviously she liked it more, because the first two golden words she said was “Tha” pointing to herself and “Da” pointing to her dad. I was never “Amma” for her, always “Mom”, maybe because I binged on English movies in my third trimester.
As she grew up neighbours, friends or teachers, all of them had only good things to say about her.
“She started talking? That’s quite early. Is she even one yet?”
“She is speaking fluently. That’s remarkable for a one and half year old.”
“She seems to be fond of dancing. She picks up steps so quickly. She is so adorable when she dances.”
“She is the best kid I ever had in my play group. I have been running this centre for 20 years and this is the first kid who came here on day one with a smile and left with a smile.”
“She not only consoles other LKG students who are crying, but also helps me in the class by handing over and collecting books from other children. She has learnt the National Anthem. She will sing it on the sports day.”
“Have you been teaching her tables? Today she recited the table of 4 without a single mistake.
That’s remarkable for a four year old. She is brilliant, she has a golden future.”
Her antics filled our lives with laughter. “Drama Queen!” my husband fondly called her.
She surprised us with her intelligence.
“Dad! Who were you with? I found this bindi on the rear seat of the car. It is big. It doesn’t belong to mom! Come on, tell me..,” she asked one day, with her hands on her hips and eyes rolled up.
“This is my official car and my colleagues travel with me,” said my husband.
“See… I found out…You were with another woman. I am just like Inspector Pradyuman in CID,” she said triumphantly.
My husband and I rolled in laughter.
I found myself smiling thinking of that day.
“Mom,” I heard her frail voice and opened my eyes, shaken out of the reverie.
“Mom, I want to participate in the marathon,” she repeated, now wide awake.
“Tomorrow is the last day to submit the form and that you have to sign here,” she said pointing to the exact place where she wanted my signature.
“I want to add one more medal to the soft board,” she said with determination.
The marathon referred to was the running race to be held on sports day, in school. Signing the consent form would be a no brainer for any other mom, but I had a thousand reasons to refuse.
“Here,” she said handing me a pen.
I gave her a wry smile, hid the turmoil in my head and signed the consent form with a heavy heart. How could I refuse? How could I even show an iota of doubt in her ability?
She carefully put the form in her bag before she went to play.
I was disturbed all afternoon. How could I share my insecurities with her? I didn’t want to say or do anything which could shatter her confidence.
“It is alright,” said my husband when I asked him to speak to her out of this, “We have to learn to let go.”
Later at night, I lay on the bed without a wink of sleep. Usually I would be stoned once I hit the bed. My brain was on an overdrive. It was past 1.00 am, sleep was still elusive, so I picked up my favourite photo album and found the picture I was looking for – Naivedya holding a trophy with three gold medals on her.
The first prize in running race goes to Naivedya Iyer.
The first prize in handwriting competition goes to Naivedya Iyer.
The first prize in dance competition goes to Naivedya Iyer.
“Mom!! Look at these medals. They are shining. These are MY gold medals! I am going to put them on the soft board. I want to have many, many of them,” she said all excited.
Those three gold medals are still displayed on her soft board.
Gold, the colour fascinated her even when she was a toddler. I could hand over a few of my imitation jewellery sets and she would get busy for one good hour, dressing up her dolls with them. As she grew up, she made her own choices – tawny hair bands, gilded clips and glittering bangles. Birthday gifts and return gifts for her friends would not only be chosen by her but also wrapped in gaudy aureate wrappers of her choice. She loved clothes which had some hint of gold in them.
The last picture in the album had her dressed in a blue gown with golden motifs for a birthday party. She was her prettiest and that was one of her best photographs ever.
That was our last happy memory before that dreadful day which changed our lives forever.
Doctor! Her fever has touched 104 degrees. I have already given her Combiflam. It’s not even four hours and there is another spike. I am sponging her but….
Doctor!! She is refusing to eat…. fever hasn’t subsided yet.
Doctor!!!! Something is wrong…. Her fever is under control but she is sleeping since afternoon… It is almost 9 pm now.
Doctor!!!!!!! She has thrown up and is going around the house in circles. She doesn’t seem to comprehend whatever I am saying. She seems unresponsive…
Doctor!? What?? Ok!! I am getting her admitted immediately.
Doctor, what is the matter?? I hope she will be fine! She was crying all the way to the hospital. Yes, she spoke to me. She said she was scared. Yes ….it was all relevant. She answered all my questions.
What? Why do we need a neurologist to see her? Is it bad? Why is she getting admitted in ICU? Oh! God! What’s happening to her? Why are her eyes going to one side? Why is she stiffening?
Doctor, please tell me … I am scared. What do you mean by we will have to wait and watch???
What?? What is an electroencephalogram (EEG)??? Why do we need to check the electrical activity of her brain???Can someone tell me in simple words what the hell is going on here????
Convulsion??? What the hell is that???
Move her to a pediatric hospital immediately? Why?? Is it that bad?? Oh God! Will I get my child back?? Hope it is not too late. …
Oh God!!! Please, please, please save my darling. ..my lifeline…my Naivedya….my Thanga Kili.
Even today, after years, I can hear my heart beats thump in my head when I think of those days.
Probably Auto Immune Encephalitis, the doctors said after the CT scan showed a mild swelling in her brain. In simple words, her body had triggered some bizarre response to the high fever which manifested a couple of days after the fever subsided.
The convulsions were frequent, recurring in cycles and the doctors were unable to control them even after loading her with seven anti epileptics. All the known methods of treatment were given to no avail. Finally after two weeks the doctors said they were going to try the last possible method to control the seizures.
Even now the doctor’s words ring in my ears,
“Your daughter is in a very critical condition. She is in status epilepticus! We are unable to control her seizures. We will have to administer Sodium Thiopental.
“Let me explain in simple words. When a PC hangs what do we do? We force a shutdown. This is similar. We will induce a coma and when we wake her up later, we hope that her brain will forget to convulse.”
Those days in the ICU passed like eons and I was like a robot, mechanical. Every morning my husband and I were allowed to spend a few minutes with her before the doctor came on rounds.
My heart would break into a zillion pieces every time I saw her, a tiny bundle, covered with all possible kinds of medical apparatuses. Only her eyes were visible and they were firmly shut.
I would speak to her hiding my emotions….
“Naivedya… I am here with you, right outside this room. I am not allowed to be here all the time. I keep visiting as and when the doctors permit me. Thanga Kili, you are a fighter…. fight my brave girl, fight…. fight for your life…..This is your race and you have no choice but to get the gold!”
Her grandfather, a pious man, couldn’t fathom why Tirupati Balaji chose to inflict pain on his Thanga Kili. Naivedya was after all an offering to the almighty.
“Oh! Balaji, saviour of the universe, please save my Thanga Kili and I will get a flute made of gold for you,” he prayed.
My husband and I would visit the temple in the hospital every day and pray for her recovery.
My brave girl fought relentlessly for thirty days and finally her convulsions came under control. Her EEG showed a normal reading and she was shifted to the ward.
She opened her eyes for the first time after thirty two days. Her eyes looked out for her dad, after all she was his princess. There was a faint smile on her tired lips, she recognized us. The nagging fear that the coma would take away her memories was finally put to rest.
She wanted to say something, but when she opened her mouth to speak, she felt gagged. A tracheostomy was done to keep her on a ventilator and that was hindering her speech. We tried to explain her condition to her, but she couldn’t understand. She feared she lost her voice in the hospital. She would get aggressive, almost pulling the tube away. The hospital took our consent to tie her hands to the bed to prevent accidents. After a week when no convulsions were noticed and a repeat EEG was normal, the tube was removed. Her struggle to speak continued for a week, the sore wounds in her throat needed to heal before we could hear her hoarse voice. I was overjoyed when I heard her call me “Mom” again.
The doctors decided that she was fit to go home and after forty five days in the hospital my family headed home, she on nasal feed, I burnt out with all the stress and my husband in emotional disarray.
We felt victorious and celebrated, but it was a celebration done too soon. This was just the beginning of all the challenges that would test us, put us in fire, just like gold is tested in fire.
The process of rehabilitation started. Thankfully she started walking within a week of discharge, but she was still on nasal feed. She would get irritated by the tube and yank it off every now and then. So we decided to introduce soft foods. The next month was good, she was slowly but steadily recovering. The home atmosphere aided in healing.
The first blow landed exactly after two months. She had a seizure. Things were never same after that. The diagnosis was now under question.
“Epileptic syndrome,” her doctor said,” but nothing to worry. Her EEG is normal.”
The next two months saw her getting allergic to one medicine, getting into a long cluster of seizures both of which required hospitalization, albeit for a short period. Our tryst with the hospital had begun, it had never ended actually.
“Get her back to school, seizures will come and go, anything less than three minutes is ok. Use this spray if it exceeds three minutes. She needs to get a life. How long can she be kept at home? She definitely needs to go out,” the doctor said.
She attended school after six months but things were not the same anymore.
The child who once loved school was now reluctant. Things which were once effortless, were now herculean. Attention was a problem, so was memory, the quick witted girl was now fumbling. The teacher’s pet now sat alone in the last row, away from the others. She was pulling along and so were we.
Grade one was a challenge in itself. We chose to admit her in one of the best schools following the Cambridge curriculum (CIE). The children in the school were ruthless, they ignored her, sometimes ran away. She knew that she was being ridiculed, but for what she never knew.
A meeting with the school counselor gave us a big blow.
“God chooses special parents for special children,” she said.
We couldn’t accept what we were being told. Of course my Thanga Kili was special, she fought a war and won over death, but she was not special in the way they meant it. In fact we denied it.
“She is on seven medicines. They are suppressants, meaning…. they suppress the functioning of the brain. Can you imagine yourself in a class when you are intoxicated? Will you be able to pay attention?
“She grasps whatever she wants to, she even tells me whatever happens in class,” I said in her defense. I added, “Children in this class run away from her,” taking the opportunity to address the biggest problem concerning us.
“Your daughter is unable to manage her emotions. She gets aggressive. We have many complaints from parents of other children.
“Get a shadow teacher. She will give personal attention and also ensure that your daughter doesn’t get distracted. She will ensure social assimilation, other children will stop running away,” the counselor said.
We consented, hoping it will benefit her, even though it drilled a hole in our pockets.
Her report card showed that she was average. We attributed the slowing down to her medicines.
Her seizures continued, but we had learnt to live with them.
Grade Two gave us a fright. She was unable to complete her books or write long answers by herself. An IQ test revealed that she had average IQ, but she struggled to read and write. She could attempt multiple choice questions but all her long answers were left blank. She scraped through grade two but her confidence was silently taking a beating.
The biggest blow came when the frequency of her seizures increased and she turned allergic to one more medicine. This not only required frequent hospitalization but also caused temporary regression.
Her EEG was now abnormal.
“She has refractory epilepsy with generalized seizures. That means that her brain sends multiple instructions at the same time and since the body doesn’t know which instruction to follow, it temporarily shuts down and she loses consciousness. It is like a short circuit in her brain. Normally we would suggest a surgery, however in her case there is no single focal point. She is therefore not a candidate for surgery.
“Surprisingly her MRI doesn’t show any damage to her brain, however the functionality is definitely affected. Continue rehabilitation… OT and Remedial are now mandatory for her,” her doctor said.
We turned to “Dr Google” looking for some miracle cure, hoping something, which her Neurologist didn’t already know, comes up.
Well wishers prayed to all the gods they knew and believed in.
“Bhabhi, either she is possessed or someone has done black magic on her. Remember our baby was so brilliant and now she is reduced to this. Take her to a “Tantrik”, they will not only find out but also get rid of the problem in no time,” said my maid of many years.
The dejected mother in me was willing to believe that also.
“May be we should take her to a tantrik,” I told my husband.
“Are you out of your senses? Get realistic. This is a medical problem. In all these years, despite multiple tests, we haven’t been able to find out what caused this reaction in her or what triggers her seizures. Unfortunately we are at the receiving end of something complex, which medical science is still clueless about, a tantrik is no solution,” he explained.
I visualized her seated in front of a tantrik on a moonless night, her face glowing aureate and her hair turning blonde by the fire blazing high, the contours of her face changing due to the torture she was being subject to and she beseeching help. That was enough to stop me from discussing this further.
Academically she was declining, we had to keep repeating whatever was taught earlier. She was getting frustrated and started hating school. Her seizures were sudden, unpredictable and could occur at any time whatsoever. A couple of episodes in school scared the authorities and the children in class. She was now ostracized.
I had become a complete wreck. Years of primary care giving with things getting worse day by day was taking a toll on my health. I had gained twenty kilos – cortisol, stress, comfort-eating during stress, whatever it may be attributed to. My social interactions had dwindled. There was no time for friends or for myself. I was running from school to rehabilitation centre to the house and helping her in her studies in whatever way I could. Everything was very frustrating.
It was in these circumstances that she had decided to run the race, the marathon, as she called it.
“Mom, all the kids in my class get certificates, except for me. I know how to correct this. I am going to participate in the marathon and I am going to get the gold!” she said with exuberance.
My mind was filled with negative thoughts.
What if she had a seizure on that day, on the sports ground?
What if she fell during the race?
And the most dreaded…..What if she lost? It would shatter her completely.
However, looking at her, I knew that I had to give her that chance.
We had reached a point where we had started to accept that she had a disability, she couldn’t read or write. On the positive side she could comprehend, she understood everything. We knew she needed a set up which would accept her the way she was and allow her to learn at her own pace without any external pressures.
We also knew that this was her last year in a regular school, in a competitive environment and so technically this was her last chance to compete amongst the so called “gold winners” and prove herself.
So I let go…….
One month later on sports day….
We waited with bated breath as the names of the competitors for the running race were announced. Naivedya took her allotted place in the vast sports ground, her eyes seeking us.
The race began.
On the whistle, she ran with all the strength she had. Half way down the race she slipped and fell. I could see her losing hope even though she was much ahead of the others. We rushed out of the stands, closer to the tracks and started cheering for her. She saw us, got up and ran like she was running an Olympic race. She touched the finish line and ran all the way into our outstretched arms. She had not only completed the race but also won it.
She was standing tall, beaming with pride when the principal decorated her with a gold medal. That one win boosted her confidence and that medal will be forever cherished.
Me? I started writing to de-stress myself. This proved cathartic. I realized that though the disease has taken away a lot from her, there were hidden talents which I had to identify and hone. I found purpose in my life. I will continue to help her to look for the gold in every challenge thrown at her.
Our quest for gold continues.
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