Living The Journey - Everyday Heroes Tell Their Story
Author: Bridget McKern

Chapter 6
The Power of Love

PARAMA’S STORY

 

 

The Power of Love

 

 

 

We cannot all do great things, but we can do small things with great love.

- Mother Theresa of Calcutta

 

 

Profile

I first met Krishna Gupta in 1985 when I was asked to visit her home as the local palliative care nurse.   Her oldest daughter Parama, ten years old, was in the last stages of a rare and dreadful neurological disease (Metachromatic leucodystrophy – MLD) which had been robbing her of all her normal muscular functions gradually over five years.  She had been a normal happy, lively little girl until about the age of five, when the dreaded disease that had already killed her older brother at six, began to show in her also.

            She was a beautiful young girl, who was smiling in the face of the inevitable deterioration of her life.  When I first met her she was unable to speak but she had an angelic smile which she gave generously to all who called in to help her mother. 

            There were many practical problems with mobility and day to day care that had to be faced.  Kris’s mother from India was there – a silent grandmother in a sari who slept beside Parama and held her hand night and day.  Always gracious and dignified, she didn’t speak English, but acted as the humble servant of all, bringing cups of tea and biscuits to visitors.

            Kris had two other dear, dark-eyed little girls.  Reshma, the older one at six, and Ratula who was four.  Of course we had to think of ways to help them too, as they were upset at the secondary attention that they could get from their parents and visitors as everyone naturally focussed on their sick sister who was dying.

            Kris was the most gracious mother in her Indian sari and loving gentle ways.  She was completely open-hearted about receiving strangers who had come to help, into her home and inner sanctum.  She would always make sure that we, her visitors, were well watered and had something to eat or drink.  Parama was taking most of her time and energy as she was so helpless and couldn’t even talk by this stage.  How on earth Kris found the time to do the cooking and shopping was beyond my understanding. 

            I was privileged to be at Parama’s bedside in the local hospital on the day she died.  Those of us who could, kept vigil with Kris and her father, or looked after the home and children in their absence. 

            Parama looked like an old, old woman as she lay dying.  It seemed to me that we were witnessing the extraordinary life span of this young girl condensed into a few hours.  When she finally took her last breath, we witnessed the most amazing transformation.  She went from being so old into a most beautiful young bride awaiting her wedding day.  It was truly miraculous and moved all those who stood nearby.

 

*          *          *         

 

Twenty or so years later, this story is told here by Kris in spoken word with sections taken from her own journal.   It is a poignant story, all the more so in that Kris and Syd had lost their first born baby, and only son, Mom, of the same disease in India when he was only six years old. 

            To lose one child is hard enough, but to have to live through the same thing happening to their second child, Parama, must have been truly excruciating.  Kris bears witness to the amazing spiritual strength of Divine Grace that she says, carried her, throughout this tragic ten years.  She is convinced that this Divine Power, not of her own making, will always be there to help her no matter what.  She is a living hero and a true prophet of the power of Love to overcome even death.

 

Can you tell me the background of your early life in India with the birth and early death of your first child, your son Mom

Mom was the first born.  I always had the fear of losing him too, because when he was  fifteen days old, I was with my mum. (that is the culture in India  –  when you have a new baby you stay with your mother for the first few months to be nurtured.)  One day my son was a little bit sick with a high temperature and I was beside myself.  I saw death.  I had always that feeling of fear with him …  and I had the same fear with Parama later.

            Mom grew up as a normal child until he was five.  In his heart he was a poet.  He loved the moon.  He would always look for the moon and was touched by it.  Before he got sick he would come running to me and say, “Ma, chad utheche!” (in Bengali this is, “Mum, Mum! the moon is up!”) 

*          *          *

 

Mom and Parama, my daughter, were only fourteen months apart but they looked like twins.  I think they had a strong spiritual connection.

            I remember when we moved to Bombay, Parama was not well, and one day I was lying down in bed next to her and suddenly she asked me, “Mum? Will I die?”  That startled me.  Maybe because I was so worried I said, “No. Why would you die?” 

            She said, “Why did my brother die?”                                                                

            Maybe she was feeling unwell, and just as I had noticed everything on this journey of death with my son, she too, had been an observer and was feeling within her, the seeds of that death … a fear of catastrophe, like a premonition, haunted us both.

*          *          *

 

It was different when I was in the hospital having Reshma, my third child.  I told the lady doctor that I was going to have a boy and that my son had died and he is coming back.  Anyway when the child was born, I could hear the baby cry and I said to the doctor, “Marie, what is it?” 

            “Ah, Krishna,” she said. “It’s a beautiful girl.”

            Early next morning Dr Marie came in with my tea and she said, “I have to tell you something.  I am the only girl in my family.  I have seven brothers and I am the closest to my mum. This child will be for you what a boy and a girl would be together.”   Then she repeated, “This child will do for you what a boy and a girl would do together.” 

            Amazing!  What a prophetic statement!   Now twenty-six years later this has been fulfilled.  Reshma is like the man of the house, but she really misses her older sister who would have been thirty years old by now.

*          *          *

 

From Kris’s Journal:            

My son Mom, was born six weeks prematurely in Calcutta in 1972.  It was the first day of monsoon in the Bengali Calendar.  His name, Mom, means a ‘candle’ – a little light.  He had big brown eyes, a head full of hair, and he had the angelic look.  His heart was beautiful, and it was full of love.  Looking at his face, you can tell, he is not fit for this world. 

            Mom was always very thin.  I tried so hard to fatten him up, but my angel would not put on much weight.  He was beautiful, very fresh looking and in his little years he showed great brilliance.  And he loved me … he loved me very much.  He always wanted to hang on to me. 

            He will sit outside the shower door and cry if I took too long a time in the shower.  I used to be concerned why he doesn’t play with cars or balls.  Instead he would pretend to be a cook, playing with the pressure cooker.   He had a good imagination.   He was a very mild-natured boy.

            Mom had another love in his life, my mum.  He was my mother’s first grandchild.  I used to visit my parents home quite often.  It was Mom’s dream when my mum was around.  He needed no one or nothing more.  My mum would cook in the kitchen and Mom played with an empty pressure cooker and a spoon for hours he would be happy.  In this day when children have TV, videos, video games, DVD, sports, music etc, he was only happy playing with an empty pressure cooker!

                        I remember when he was very sick and losing the control to hold his head up I used to support his chin with my hand.  One evening I was standing with him on the balcony looking forward and did not notice the moon was up.  I suddenly noticed his head was up straight.  He was holding his head up perfectly!   I looked in his eyes and followed his gaze up to the sky and saw the big white moon.  Tears started to run down my face.  My son had also lost his speech at that time so he could not say, “Ma the moon is up!”  My heart was broken.  God has taken that voice also, I thought.  So I wiped my tears and told him, “Mom, the moon is up!”  I knew he will love to hear it being said.  Mom gave me a million dollar smile.

*          *          *

 

He is gone now, twenty-three years.  Still the moon makes me sad.  When we are in the car going somewhere and if I see the moon following me, I feel quietly disgusted with it.  How shameless of the moon that she still smiles when it brings tears to my eyes!

            I am trying to change this attitude of mine.  I am slowly training myself to see Mom’s love through the gleaming moon.  Through the moonlight that shines on the world he is saying, “Hello Mum.  I am still around you and I love you.”

 

The journey with Mom was very happy to start with, but  filled with excruciating pain in the second half of his life.  It was a lot of pain where your heart melts in agony, you are helpless, your whole soul and spirit screaming within you, your hands are tied, your tears run out of your control, you are depressed.  It is a roller-coaster ride of hope and frustration when in your heart you know your final destination. 

 

It was a very stormy six years, but now, when it is passed, I look at it and strangely, I thank God for giving me Mom.  I was the blessed mum to have him when he only came to this world for a very short time.  He made me laugh, and cry.  He made me strong, and weak.  He made me see things differently.  Mom only came to live in this world for six years.  He did everything he had to do in six years.  I was just his companion in this journey of life.  He changed me.  If I had a choice of having him or not, I would still have him, because the joy is far greater than the pain.  The enrichment was far greater than the hard work.

 

*          *          *

 

Today is 28th November, my Parama’s birthday.  She was called Parama because that means ‘The Most Beautiful One’.  Parama was eleven years old when she passed away.  She was my first daughter who, if alive, would now be thirty years old.  Sometimes I wonder, why do I have to face these things?  Why my story is so sad?

 

I remember one story about her when she was four-and-a-half  years old.  My son Mom, was very sick and I was staying at my brother-in-law’s house.  I felt absolutely unwanted by my  hostess and I did not want to stay there.  There was a huge pressure from my mother-in-law.  I had to stay there for a few days. 

            Anyway, one day my brother-in-law took his family for a day trip in their car, and Parama was invited to accompany them.  She looked happy to go out in the car and she had a good day out.  They came back around 10 pm.  On the way back home my brother-in-law bought everyone an ice cream.  Parama did not eat hers but saved it for me to share with her and when she reached home she had one sticky hand holding the empty paddle pop stick!  The ice cream had melted away!

            Am I not very blessed to have had  her?  I am so lucky that Parama called me ‘Mum’.  It hurts.  I want to cry, but I would rather have the pain than not to have had her. 

 

            Parama, I love you so very much.  I am lonely without you and your brother.  The             day I die, you two will come to take me home and introduce me to my Jesus.’

 

They are precious, these things.  I don’t want to forget.  I treasure these memories.

 

*          *          *

 

So when did you realise that your little son, Mom, was not normal – not thriving?

Maybe when he was say just under three. He found it was difficult to get up from bed.  I noticed he was not able to get up without turning on his side and resting on his elbow. 

And then, slowly, I noticed that he stopped running and he sometimes unmindfully walked backwards, and then the whole motor activity thing started to give out – and slowly it just went into nothing.  But it took almost a year and a half – or maybe two years for that. 

            We used to take him everywhere looking for answers – to all the doctors and specialists.  In India they don’t have the facilities and all the tests and everything.  So they tested one lumbar puncture four times and I don’t know how many scans they did just to know more.  Even if they didn’t have the knowledge, they always gave me hope that he would be alright. 

            In India they never wanted to give you the bad news.  I think that is a cultural thing. Because the doctors usually do not talk about the medical condition to the patient openly, thinking it is not necessary for them to know anything of the diagnosis in case the patient is discouraged from getting better.

            And so my son was taken to the Children’s Hospital.  They thought everything was in his mind.  Psychological.  That was the worst thing that happened to him.  For week after week he stayed at that hospital.  They thought that he was threatened by Parama – like sibling rivalry …  Maybe everybody is doing too much dancing around Parama and he is not getting the attention anymore.  So he stayed in the hospital for over a month.

            It used to depress me greatly as I didn’t really believe what the doctors thought about him but I had no choice.  I would go and see him with my heart breaking but I was always hoping.  Looking back now, I can see how that hope was unreal, but in my ignorance it was really important at that stage because it helped me to keep going. 

*          *          *

 

It was different in Australia with Parama.  The doctors didn’t have to do too many tests before they knew what it was, and they were not so unwilling to tell us what was wrong.  They said that she wouldn’t live.  That knowledge was devastating to me.  Before with Mom, not knowing the diagnosis and outcome, somehow my ignorance could keep me going …  but being told the worst with Parama in Australia …  that’s it.  The stark realism of being told the truth like that is sometimes a destructive thing to the hope that could be in your heart, and for a mother, that is a big deal.                                          

            Also in India, I had the strength of my parents and my brothers who were just nurturing me … in their heart they would just do anything they could to shelter me from this thing.  I still remember when my son was in the hospital, my younger brother would come with me all the time.  He would go ahead of me and go into the room first in case anything was worse …  to protect me from the shock.  This was priceless.  He is beautiful, and even today I am very close to him.

            I used to be a mad Hindu worshipper.  I used to run from temple to temple and go and worship at the snake god and the monkey god and every god.  If you worshipped the snake god then you wouldn’t be bitten ... if you worshipped the god of fire, your house would not be burned down …  and I would run for it.  We moved every rock, tried everything.  You know, all that came from fear. 

            We took Mom to Velore in South India for medical treatment.  We went to the spiritual healer, Sai Baba.  We went to Bangalore Neurological Centre.  We went into every mosque and temple for healing.  We went everywhere thinking maybe this or that will work.  But nothing did. 

            My son Mom died in India aged just six years old.  Parama, his sister, was four-and-a-half years old and she was a little girl running around quite normally at that time.  Just eighteen months between them. 

            And then my husband was transferred with a good position to Bombay.  It was good for us to have a new beginning, I thought …  and then I discovered, maybe within a month, that the same thing was happening to Parama.  She was finding it difficult to get up in bed …  just like Mom.

That must have been excruciating …  like the worst of all possible nightmares …  the next child showing the same symptoms as the one who had just died?

Yes. I was beside myself.  I can’t tell you my worry.  You would know as a mother … 

            We went to another child specialist and I said “Look my son just died  …”  (I did not know the name of the disease, Metachromatic Leucodystrophy, until later when we came to Australia.)  I said to him, “Now the same thing is happening to my daughter …  she is having difficulty getting up in bed, just like he did …”  At that time, to look at her, my daughter didn’t appear to have anything wrong.

            The doctor said, “Look.  It’s you.  You are driving this child mad.  There’s nothing wrong with your daughter.” 

            I thought, Thank God!  That is what I wanted to hear.  The music of ignorance once again comforted me.  Sometimes knowledge gives you fear and ignorance gives you peace.

            He said, “You will have to have treatment.  Your husband is very busy.  You have just had a trauma and you are sitting at home and dreaming – imagining the worst.  And if you don’t have treatment you will be driving her mad.”

            So he gave me a referral to a Psychiatric place.  So for a few months every day after breakfast, I would take a Valium tablet.  And then I would take a taxi to the next suburb called Khar to the psychiatric clinic and would wait my turn with all the other people there. 

            You know, all my life I was so scared of mad people.  If there were two cages, one with a lion and one with a mad person, I would rather choose the lion! 

            I would sit and wait there in this clinic for the sleep therapy.  When it was my turn, I would go in and hop on this metal bed and then this big metal thing would come down over my head and make noises in different pitches, between very high and very low, and then I would sleep.  Then I would wake up and take a taxi home and feel happy. 

            Parama was at school then.  This went on for a long time.  And then we got the opportunity to come to Australia for my husband’s work. 

Just before we left India, Parama was in a very bad state.  She was urinating sometimes …  a few accidents had started to happen.  After we got to Australia, it just escalated rapidly down hill.  I just could not believe then, that it was happening all over again. 

            Finally, we were seen in the Prince of Wales Children’s Hospital at Randwick, where they did a lot of testing.  Dr Wise was the doctor.  He was beautiful.  Like a huge bear …  full of love.  But in the beginning I misunderstood him.  I couldn’t believe him.

            Reshma, my third baby, was only little – fourteen months old.  I stayed in the hospital with Parama and they let me keep Reshma with me too …  that was so good.  I wrote them a letter to thank them afterwards.  That was really very kind. 

            The doctors would come round to each and every bed but they wouldn’t come to our bed.  They would stand a little way off and I knew they were talking about us and didn’t want us to hear what they were saying.  Maybe it was just a case that students have to learn about.  But at that time my heart was broken and I misunderstood them.  I used to think that Dr Wise was not treating us because we are black.  I had to find a reason.  It was so silly but that was all I could think of. 

            One morning Dr Wise came to me because he wanted to break the news to me himself.  Then he said, “People are going to the moon, it is true, but there is nothing we can do for Parama.  Her condition will slowly become worse and she will die.  When you can’t look after her any more, I’ll help you.”  What he meant to say was: The time is limited.  This is coming in front of you.  This was going to happen and he would be there for me and after it’s over, it’s over.

            I told him, “I don’t need any help.”  I said, “Just do me one favour.  Please don’t tell my husband.  I’ll tell him myself.”  I thought I could do it myself.  It was stupid you know but I was not really all there.

            But Dr Wise said, “No. I will tell your husband for you because he needs to know too.”  He was very kind.  “You are sinking,” he said,  “You have to find the sand under your feet.  When you find the sand then you can stand up …  so I need to tell you now what is going to happen.  If you don’t know now, you will never know how to stand …”   When he said, “You are drowning” I thought he was mean and a racist because I am black, and all the time he was saying what needed to be said …  and so kindly. 

            He said to me, he thought that to tell my husband was yet another burden for me to deal with and he would deal with it for me.  I needed to have the peace over all.  I did not want the turmoil at home in front of Parama.  I thought that Syd wouldn’t cope … that he would not have the life skills to deal with it.  So I was protecting Parama from all that.  I was trying to manage the whole thing by myself, but Dr Wise would not hear of it.  What a good man he was! 

            So he did tell my husband.  Syd never talked about it.  That is in our culture too ... that there are so many things we think are better left unspoken.  And Syd was … he is him ... like sometimes I think that we can also panic so much in different ways …  he had escaped into work … that’s how he coped.

            I did not like Dr Wise that day.  But then, later on, every six months or so, we used to go and see Dr Wise and he was so sweet, so beautiful with Parama.  He would put her on his big lap.  He had a rolling chair and glasses that came half way down his nose.   His big eyes would be looking at me and he would take her on his lap and then push the chair back and forward with her on his lap while he talked.  A beautiful man!

            After Parama died I wrote him a letter thanking him for everything he had done and he wrote me a letter back … it was so beautiful.  He said, “I am so sorry for you … but I am so happy for Parama.”    

            When I came back from the hospital on that day that I had been told that nothing would work for Parama, I was deeply distressed.  I was sitting at home in the flat in Bankstown in such pain … not weeping, not sobbing, because I couldn’t in case Parama would ask me why.  It was just a turmoil within.  I felt as if I couldn’t breathe.  I knew nobody but I knew I needed help, so I went to my next door neighbours’ flat … they were Spanish people… and I knocked on their door … and they said, “Come in.” 

            I told them what happened and that I was so lonely.  They didn’t speak much English but they said they would ask a friend of theirs to visit us, and that evening someone from their church came to visit us.  And he said, that if nobody can help you,  He can … meaning Jesus.  I thought that would be wonderful.  That is good.  All alone there, I wanted that help.  I wanted that Jesus. 

            Then in my heart for a long, long time I thought that Jesus is very good.  When all the doors are closed and only one is open, you go in with all your heart.  But if there are choices you wonder which one, and hesitate.

            But in spite of my pain and suffering for all those weeks and months and years … one fine morning … I noticed that, like water from the duck’s back, everything had just gone.

            At that moment I knew God is alive and I was just face to face with Jesus who is the Healer of all and I knew then He will see me through … that maybe through physical healing, maybe not … but He will always be there and no other gods existed and I am just there right in front of him.  It was such a wonderful thing to happen. 

            I used to think in the church, these people are very good, but they are very narrow-minded because they think that Jesus is the only one.  They don’t know about the other gods in India and other countries.  But nobody Bible-bashed me.  That was the best thing that can happen.  Perhaps because they saw my pain, they were gentle with me.  And whatever I did or believed, my family still embraced me with open arms.  They gave me unconditional love.

            Later one day when Parama was dying in Sydney, my Mum asked me, “How come you say, ‘Thank you, Jesus.  Thankyou, God’?  How come you can say this?”   I said to my Mum, “If I don’t … who will?” 

            But when my Parama was sick, I used to wonder how will death come?  (I never said this out loud to anybody.)  I said to myself,  She’s alright now … but it will come.  What will I do?  Where will I be?  How far will I be able to walk with her?  When will the time come to let go of her hand?  And will it be a rainy day?  Will it be sunny?  Will I be alone?  Will it happen in night time?  Will I have a lot of people around?  Will I have the money?  How will I tell to my family?  All these worries and questions. 

            Parama was getting sicker and sicker and people used to come and visit us.  Sometimes I had bad days.  I remember you said to me once, “On a day like this when you feel really sad, you just need to cry.  Tears are healing.  Just cry and then count all your blessings.”   I didn’t think very much … I couldn’t … but that was a comfort.

            God was so good.  He sent me so many friends, so many people.  A friend of mine from Reshma’s school said, “Aren’t you sick of all these people coming to your place?”  

            I said,  “No. I want to see them because they all help me one step on my journey.” 

I still keep in touch with the Bankstown health clinic sister.  I see her once a year.  We go out together.  Without them all I couldn’t  have done it.  I think, with them I got an extra share of love whenever they came to visit.  

*          *          *

In Bombay, there was a girl in the playground called Anna who had braces on her teeth.  Parama loved those braces!  She asked me, “Mum, when we go to Australia can I have ‘black’ teeth?  Anna looks so good!”  

            Anna had a baby doll called “Kelly” who had a dummy, and when you took it out she cried, and when you put it back in, she shut up!  Parama said to me, “When we go to Australia I would love to have a doll like Kelly.”  OK. I didn’t think of it very much but I knew I would have to find that doll one day.

            We had a Home Help lady in Bankstown called Penny – (I remember I used to do the housework and clean up before she came!)  Anyway I told Penny about this Kelly Doll with a dummy who had a battery in her tummy that made her laugh and cry.  So Penny said, “I will look for it”  and she looked really hard. 

One day she rang me up and she said, “Kris, I found Kelly Doll in Target.  I bought it and I’ll bring it when I come next time.”  So Parama was very happy that she had her Kelly Doll and she would put the dummy in and the dummy out and all these things.   

            And then slowly, over the years, Kelly Doll stopped crying almost at the same time that Parama was stopping talking.  And I thought, “Shall I take Kelly Doll to the Doll’s Hospital in Melbourne where they can fix dolls?”  And then I thought, NO.  She’s not talking either.  She was slowing down.  Kelly Doll did not cry or laugh any more but just stayed still – like a symbol of what was happening to Parama.

There must have been a deep knowing in Parama beyond her years.

Yes.  Otherwise how could she have been so sweet and smiling and loving?

I think the whole thing was a story of Love in sometimes unexpected ways.  I think Parama drew that out of people too.  She had some aura about her, as I remember …  an immediate thing in her presence that you just felt loving …  whether you were feeling you were having a bad day or not.  It was like she could draw the love out of us …  and her smile is what I remember.  She used that smile everywhere.   It was the sweetest thing.

It has been a long journey.  And after passing through that journey with Parama and also the journey of my son, right now, where I am, most of the time I feel I don’t have to worry.  With what I have gone through …  I don’t know how everything came together …  I don’t see any contribution on my part, personally, to make the closure, the way it was closed.  I did not have any contribution to complete the circle when his death came …  but it was a Divine thing.

            Do you know what?  I always had that peace in me.  In fact, all our lives, at any given time, I feel we are only hanging by a thread in God’s hand  ...  like a delicate string …  but He has the control and He holds us. 

            Even now, even though I don’t have a dying child, life in general is like lots of little fine threads.  My life is my job, Syd’s job, my wellbeing, his wellbeing, Ratula finishing university, other troubles …  If one thread breaks, it disengages everything.  But we don’t see that.  We accept every day that everything will be alright.  But life is really only this one little tiny thread in His hand which could break at any time. 

            Moving to Australia has been good for us because I  haven’t enclosed myself only in the Indian community.  Culture plays so much in our minds.  Because I have embraced life outside my  own cultural boundaries, what a wonderful enrichment that has been and how much of a freedom it is from the harsh way Indian people can judge me!  Now I am free from their perspective.  At least I can laugh about it now.

            I think my job working with handicapped children in a Government school is very special for me because it keeps my feet on the ground.  It keeps me connected to my past and helps me to go forward …  with all my memories.  Because of my own experience, I understand where the parents are coming from.

            The children are 4 – 8 years old.  Some don’t talk, some are autistic.  They love to give, they come to you.  After a while you don’t see the wheel chairs or their disabilities any more.  With all their different personalities, they have their little strengths and they have their little weaknesses – some are naughty and some are indifferent. 

            You know the handicaps are there but that is not a big issue – that is a little issue but they stand out as people.  As for my role …  the teacher calls me ‘The Comforter’.  I am there to wipe noses, and wipe tears and pick them up and put them on my lap.

            What will happen in life?  It is not always happy endings.  But I don’t have to worry because I know the Divine Power that watches over us all, knows it all, and has done everything without needing my knowledge.  The only thing I have to do is trust Him totally, blindly.  Trust Him, because my knowledge will not throw much light …  but when I look at Him, trust and pray, that is the Light that will show me the way.

 

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