Why am I here? : I did not think i would become a "blogger" under these circumstances..but i guess sometimes adversity and life makes one write! I think in some way I was also hoping for some kind of solace! I know most of you may not have the patience or time to read what I have written but heck I am being a little selfish! I am writing for myself more than anything. I am writing because I am hoping it will make me feel better and also hoping that I can share my story with people who read this.
Mum : As I write, next to me is the most brave,wonderful,spiritual and dignified person anyone could have met..My mum. She is the center of our lives. She is the epitome of beauty,elegance,dignity and strength. She is really the reason for who I am.We are an extremely close knit family and life has always been about living for each other and through one another.Mum and me are like friends.We are very close and share a bond that is unique and beautiful.My sister and me have been more than fortunate to have had the most gracious and wonderful parents. Both mum and dad have been very active people socially and have always been the couple who comes to everyone’s rescue in many ways. Mum has the most amazing sense of humor and has always lived life to the fullest. Her happiness always comes from seeing others happy. Philanthrophy was a way of life for her. She believed in charity and always helping people in need. She always taught us to give back to people in need. Whether it was the Bomb blasts in Mumbai, the floods in July, she always gathered her resources in time and set out to help in her own way.
Sometimes people would say she has it all..the good looks, a Phd in English Literature, a great cook, a fabulous homemaker, a devoted wife and mother..and I would think we actually have it all because we have her! We have a large extended family and mum being the eldest has always been the center of everyone’s lives. No marriage,no family function is complete without her because she takes control and has a solution for everything. She makes everyone laugh and regales people with her fabulous stories.She is always looking out for others. She is everyone’s strength.
Providence : 10 years ago my aunt (Mum’s youngest sister) was diagnosed with leukaemia and miraculously mum was a 99% match as a donor. Without a blink of an eyelid ,she flew down to the US and gave her life..Mums stem cell was grafted into my aunt who today happily says, “your mum gave me 2 of the greatest things ..No hair on my body and allergy to chocolate so I can never put on weight!!! Ten years later destiny turned its tables.
2004 : What a year of paradoxes that was! In keeping with family tradition, Dad became Chief Secretary of Maharashtra , a very prestigous and well deserved accolade for him. His father was the longest reigning Chief Secretary of the Madras Presidency and a man of great vision and charisma. . But that year the good news was immediately shrouded by the unthinkable. What started off as a small ulcer in Mum's mouth turned out to be a nightmare. From biopsies and scans and endless tests, Mum ..a person who did not have single bad habit, had now unbelievably a malignant tumor..
The C word : The C word as we used to call it then had struck our family!! Us !! How could it be???? ..Not us!!! Not her!!! It was a shock and very hard to deal with. Suddenly one day (9th of October,2004) my sister and me were in the ICU looking at our beautiful mother after a 7-hour surgery with tubes everywhere and all I did was to look into her eyes. They smiled at me and I couldn’t help but run out and breakdown. A portion of her tongue had been operated upon and some nodes were removed. It had been a major surgery. Nothing..I mean nothing..quite prepares you for what you see. We were assured that the tumor had been done away with. The Doctors said she may have to stay in the hospital for 20 days and so each day we prayed with her, and on our own. And mum in all her dignity showed us all that she was a fighter and left the hospital to go home in just 8 days. Will power surpassed Doctors predictions and she was home.
Then came the radiation and with it came all its nasty side effect. The thickening of the saliva, the rawness of skin in the neck, the headaches, the shortness of breath..15 years of her yoga and hours of prayer and pranayam taught her resilience and tolerance for all of that. I never saw her complain or rue her fate. Not once.
2004 fast became 2007. Everyday we cherised the time we spent with her. She was our hero.Her diet had changed considerably to mashed food and she had lost weight but Mum looked as pretty as ever and her sense of humor was so very intact…Our monthly routine checks had stopped to now once in 6 months and the Doctors said she was officially clear. We were grateful each day for all the little and big things that came our way.And we thought the worst was over..
September 2007…One day Mum called me after her yoga class and said she felt a node in her neck that didn’t seem normal. The doctors had done a check a week ago and had said everything was clear so there was no need to panic.A routine check to the hospital and the nightmare was back. More biopsies, countless tests,scans, opinions, decisions,consultations..and then you just do what the best Doctor in the country tells you to do.. Another surgery..this time much more drastic than the first.
October 2007 : A nightmare that just won't go away.....I found myself in the ICU again looking at her..Only this time I did not run , I did nor cry. I just stood there and stared at her..because I thought to myself ..this is not my mother, it just cannot be! How can life be so cruel and so unkind? A person who had rarely ever had a saridon or a crocin.Led the most healthy life, had only helped others, had a clean and pure heart ..why her? Today I realize that there is no logic to any of this. The why her ..why me syndrome does no good to the situation..only makes it worse.Her tongue had been cut further, her jaw bone removed and replaced with a forearm flap.Her face, her hand , her leg were all in a cast..there were tubes all over, there was a tube in her throat and the visual was horrific. 11 hours of surgery and all I could think of is how she waved at us before going in and said..“don’t worry ..go eat your lunch ..i will be fine”. And in her true comical spirited style she shunned the ward boy who came in with a stretcher to take her into the OT and exclaimed , “I have two legs ..I can walk!”And confidently she walked into the operation theatre with a smile to face her fate with the grace we have known her for. My sister and me wished that Dad didn’t have to see her in the ICU after the surgery. But we had no choice .I will never forget how his face turned white when he saw her and in seconds before we knew it he had collapsed in front of her. That night our parents who had only showered us with love and adoration were both in the ICU. That night still wont go away and keeps haunting me from time to time.
Dad ..a man always in control..always the provider..someone who wakes up at 5am for his tennis and swim..A Ranji player, top of his class in Cambridge and University and the Indian Administrative Services, the greatest orator and writer I have known, at the helm of things in his work….here he was ..rendered helpless and weak before the doctors, before fate, before his wife. And all he did was hold my sisters and my hand and say, “Girls .I am supposed to take care of both of you and here you are taking care of me but dont worry the worst is over!” And I thought to myself..it has to be..what can be worse!! I was so wrong! The worst was yet to come..
Post surgery..mum and her will power defied all the Doctors ..she soon became a favourite on the floor with all the nurses and Doctors. Everytime we asked her if she was in pain she would say no. The tracheostomy which was done during the surgery was the hardest thing to see and come to terms with but soon we realized we had to come to terms with a lot more.
Keeping the faith :Everyday we would wait for Mum to write her little anecdotes to us and soon we all developed a kind of sign language between ourselves. She was determined to recover and be back on her feet.Her sense of humor and her spirit got her through and she was out in a record two weeks. It was hard to accept that a person who was inherently so beautiful from within and so gorgeous to look at , loved food, loved to tell tales and entertain people ..could no longer eat ,could no longer talk, and in a strange way was no longer the same to look at ..but her eyes were full of life and she was home and we were so grateful. We stopped asking why and just accepted the situation. Everyday we told her how much we loved and admired her.Everyday the family was beside her. Her brother , her sisters , her mother and us. Calls and countless messages for her. Prayers and good wishes from friends and well wishers.
The Doctors suggested she must have a round of radiation in December of 2007 as it would be the safest thing to do. The tumor was completely removed in this so called commando style surgery. We were told that an intensive surgery had taken care of it. Opinions went back and forth and finally 33 sittings of radiation later, she was able to eat better and talk better.
2007..When will it become 2008? : A new year brings hope and happiness but honestly I cant wait for this year to end!! January came and she was looking forward to her sisters sons wedding in Chennai. She loves Chennai because she grew up there, her mother lives there, Dads family lives there and off course that is also where she met Dad.
January 2008 : Life tests you : In the beginning of January the dreaded shooting pain in the ear was back and she couldn’t eat a thing.Even her mashed food that we would so carefully make everyday she could not swallow. It was so hard to see because she was hungry.The pain started to get unbearable and we could not see her suffer. The Doctors said she would be fine and that it had nothing to do with the tumor since recurrence was impossible so soon after surgery and radiation. It hadn’t even been a week since radiation. So we were asked to go to a pain-relieving clinic, which only made her pain worse!! He said it was nothing to worry about and asked us to do an MRI just to be sure.That MRI was torture for mum. She was in there for 2 hours ..her saliva kept choking her as it was thick with the radiation.Dad and me kept praying. We told her she did not need to go through with it but she insisted she could do it.
The only two times I have seen my dads face turn white once in the Icu and the second time was when the surgeon looked at the MRI report and said the tumor is not all gone. He sank to his chair and said she does not have much time. He asked us to take her to the wedding and let her be a part of things.It was one of the many nights I wont forget. What would we tell mum?So we decided we wont say anything..she had been through enough.We flew to Chennai(an unbearable journey for mum with the air pressure and pain) She attended the wedding and performed all the rituals as the eldest in the family. It was like she was determined to be there. Everytime I looked at Dad looking at her in the wedding, there was a lump in my throat , a feeling in my stomach that just would not go away. I could only think of the Doctors words.."She does not have much time"..
I wanted to believe in Angels : We were helpless and did not know what to do. When things reach a dead end suddenly a road appears from nowhere ,I started believing in angels or at least i wanted to. There were so many angels...family,friends,relatives..all these people who constantly visited mum and kept her spirits up were my angels and i am so grateful for their presence..Another angel came in the form of a Doctor at the Apollo hospital in Chennai. A family friend asked us to take her there for an opinion since she wanted to spend more time in Chennai and not go back to Mumbai.
Dr. T.Raja is one of the most humane Doctors that I have come across. He knows his stuff, he becomes the patients friend first, he is a busy man no doubt but he takes time to tell you the pros and cons and what to expect and what not to. That is what we appreciated in him. I believe Doctors are admirable especially Doctors dealing with terminally ill patients and children..To me it is the most difficult job to do day in and out.Off course we did come across some Doctors who sometimes tend to be a little insensitive to the patients and their loved ones and play God. They are no one to put time frames and give doomsday prophecies. We all have our destiny and it shall play out in whatever way it is written for us.
February 2008 :To hope or not to hope? We suddenly saw hope. Hope is an amazing emotion..it makes all the problems disappear in an instant.
Monoclonal antibodies..cetuzimab,erbutrix..chemotherapy..these were hopeful words that we were going to deal with in the next 3 months. These were wonder drugs that would give mum hope..She was to be given these intravenously over 6 weeks. One cycle a week. If she responded well then she would get 12.Did mum want to do this? Did she give her consent? When someone tells you this is the only option that can perhaps save her life("perhaps") ..what do you do? You look at your family who lives each day for you and you just say yes. That is what mum did.She just said yes.Her treatment was to start on a Friday in February and she was very thin with the lack of eating.It was such a struggle. Even the food which was in puree form would not go down. She was Down to 44 kgs. It was to be a 24 hour procedure every week. She would be admitted for 2 days.
A shocking setback :
Hope ..the word that we were clinging onto suddenly came crashing..On Wednesday, I ran into the bathroom on hearing mum screaming for me . She was covered in a pool of blood..chunks of blood were coming out of her mouth.They would not stop. Dad and my grandma were in a daze as I asked Dad to call for an ambulance. Mum was a sea of calm.She started packing a bag for the hospital and even started cleaning the bathroom telling me that Dad would need to use it when he came back from the hospital. Trust Mum to do this at a moment of crisis! Very calmly she walked to the ambulance, with the bleeding on non stop.When you see an ambulance on a road you never imagine yourself to be in one. And there we were..that shrill sound and that ominous feeling. Dad was not even looking at Mum. My grandma ..the strongest and most dignified lady could not bear to see her daughter in that condition. And the blood would not stop. We rushed her to the ER and for 9 whole days mum was in the critical care unit.They did a procedure called Embolisation that stopped the bleeding. Because of radiation, a blood vessel, which had become very thin had ruptured. Her treatment which was to have started received a setback and once again we were helpless!
Little did I know then that I would spend 110 days in a hospital room with my mum. But I could not imagine being anywhere else.The ryles tube for the nasal feeding was the most difficult thing for her to accept but as weeks went by she got used to it.My sister came and went every other week from the US. Thank god for her perks on Delta airlines! Dad adjusted his work schedule and would fly back n forth from Mumbai to Chennai so he could be there from Thursday to Sunday..We convinced him to get away and distract himself since I was there. My grandma was there like a rock. She would sit for hours on end holding mum’s hand.As usual mum became the favourite patient on the 4th floor at Apollo. Even in the critical care she would write things and make the nurses laugh. They adored her and came down to meet her ever so often. She was so concerned about them.What they ate, where they lived. She was always concerned about us and that amazed me about her. She always thought about others. She wanted to know what everyone was eating , if everyone was comfortable..The first 2 cycles went off well. Mum was in good hands..she was responding well.The 6 weeks went by with a lot of ups and downs...but we were by her side.The medicines caused excessive shivers, stomach issues, tiredness, constipation , sometimes diarohhea. But she was cheerful and fought hard.
Positivity filled that room..never did she give up or shed a tear. She would listen to her devotional songs every morning , say her prayers, ask me to read to her. My cousin Shruti came and read all her favourite poets from Keats and Yates to Byron and Tennessee and awakened her love for English literature. My uncle came week after week just to make her smile. They share a connection which only they know! Its wonderful to see.We talked about everything except the C word.She insisted on taking a bath on her own everyday, walking down the corridor everyday.Dr.Raja said she could handle 6 more cycles and soon 10 weeks went by and there were 2 more cycles to go. Just as we were coming to the end of it she developed a major skin allergy and her “ivory skin” as we would all call it was totally covered in rash. She developed edema(swelling) and her hands and feet started swelling up. It was tough to see her like that. Somehow the last 2 weeks slowly inched on. It was a very trying time but she finished all the 12. An MRI was needed to assess the condition of the tumor but Mum could not go through with it.She really tried but the saliva kept coming out and she could not lie flat because of the stiffness caused from radiation. She is never one to give up..but that day she really tried and it did not happen. So an alternative method called the 64 slice scan was done because this was quicker and it was possible to take a suction machine into the room to suction out the saliva for a clear image.The results showed that the tumor was not visible. Obviously the wonder drug had worked..that’s all we knew. Dr. Raja was very happy with her progress and in 2 weeks we were ready to go home. The ryles tube was removed because she said she would try eating orally. And she did. That day all of us had tears of joy! To see her drink that soup was like a rebirth of sorts. And slowly she started to talk. We had not heard her voice in 5 months. It was music to all our ears.Leaving the hospital was strange..The hospital had become a kind of home in an odd sort of way but off course there is no place like home. And mums smile as she walked inand saw her mother standing at the door of our home in Chennai said it all.
May 2008 : The homecoming -The homecoming was wonderful and Mum was relieved. Hope was a word again in the dictionary of our lives..She started eating all the things she had craved for. Everything was in puree form.She put on some weight and was 46 kilos when she got discharged.The year had begun on a terrible note but suddenly things were looking better.We were relieved to see her at home trying to talk, trying to eat, plucking flowers from the garden. After almost 5 months in hospital I knew I had to get back to my life. My work, my marriage, my commitments.I had put everything on hold because I did not want be anywhere else.I finally got the courage to leave and go to Bombay when I saw her pottering about in the kitchen like the old days making idlis for me one morning. I knew she was back and it made me so happy. It was difficult for me to accept that mum would never be the same. I went through phases of denial.. Dreaming of a time ,convincing myself that mum would be back to her life in Bombay soon. I dreamt of her wearing her beautiful sarees again, running her Balwadi, doing her yoga, and effortlessly being the center of attention like she always is. One day my sister sat me down and beat the words into me.. “Mum will never be what we want her to be.. she wont look the same and be the same in many ways. She has changed physically and we must accept that, but in spirit she is the same..Look at her eyes,look at her smile..she is still our mum" . I cried forever that night .Maybe it was all those pent up tears from the days in the hospital when I was trying to be stoic..but those tears that day made me accept some harsh realities.With my grandma and Dad there I had the confidence to leave. 2 weeks went by.She spoke to me every single day on the phone. We chatted about everything like we used to.
What is worse ? Mum is never one to complain. So when she started complaining a week after I was in Bombay about not being able to eat I immediately flew back. Dad seemed really disappointed and I knew something was not right.Her eyes were not the same and that frightened me.And something was surely not right. Mum was down to 35 kilos. When I saw her I felt that awful feeling in my stomach all over again. She looked frail,tired and for the first time she looked at me and said she was in pain. Again the conversation started revolving around blood tests, doctors and scans. She just could not eat. The saliva was so thick it was choking her.The food was not going in nor was it coming out. There were moments when she would suffocate. It was the hardest thing to see her struggle. She kept losing weight .She was beyond tired but miraculously always had the strength to have her bath and sit for 15 minutes and do her morning and evening Puja(prayer). What is worse ? Seeing your loved one starve and not eat or take a decision to put the ryles tube back in so that she gains some strength, knowing that it may perhaps cause her more discomfort. Mum was plain fed up ..she had a mental block to the tube as it is. But what do you do? How can she wither away. There was no option. Every minute was a struggle.Buckets of tears, discussions, sleepless nights and finally we took her to the Ent surgeon who did the god awful endoscopy and told us that he could not see signs of the tumor but Edema had set in and there was a swelling in the throat.
July 2008 :One day goes into the next.. : Hope..crashed yet again!Dad looked more helpless than ever before. He was restless and looking for answers. But we just had to accept things and move one day into the next. As I sit here next to my mum..The tube is back inside her.She is back on the Diabetic resource feed that was being given at the hospital. I was at one of my low moments feeling helpless because I just could not see mum suffer. Her breathing was heavy and through the mouth. For 3 nights she was struggling immensely.Gloom was in the air and I just did not like it. Everyone was tired. Mental exhaustion can be the most tiring thing.I decided to log on and google this :“How do you take out thick saliva that obstructs breathing when the ryles tube is in?”And in my search I landed up on the site i posted above and started reading all the amazing stories. What Ananth said in his story about not letting the disease overcome you and fighting it is what I see mum do everyday. I read out bits of Ananth’s story to Mum and Dad and told her to keep the faith and fight. I honestly don’t know what will happen next and what we should do as a family next..All I want is for her to be comfortable and sans pain.Hope is a word I wont let go off. Prayer is my anchor. My family and friends are my support. I want to share my story with others to highlight the importance of family support and a positive attitude in fighting this disease. Mum has come this far with immense dignity. She is an exception i believe and so do the Doctors. She has never shed a tear nor has she complained. Ask her if she in pain and she will promptly say "No". I know she is strong for us. If we see fear in her eyes , she knows we will break. That is Mum..always looking out for us, always fighting.
For people looking after someone who is ill all i can say is that the person who is the main care giver needs to be extremely patient, calm, and listen to what the your loved one says.
They know their body best. Sometimes one needs to listen more to them than the Doctors.
Saints :Yesterday a close friend of mine who is very fond of Mum called me and told me that Ramkrishna Paramhans the great saint fought throat cancer for years. He endured great suffering with utmost dignity.She said your mum is truly like a saint or she is one with some power beyond us ..she has fought this dreadful disease with the greatest dignity.I believe that .Sometimes I look at her and it almost seems like she is silently having a conversation with her Gods! I believe truly that all those people who are fighting cancer or any other illness with dignity and a positive attitude are Saints in their own way. Through them we learn lessons of a lifetime, they take on suffering of the world to teach us how to value life and respect it. I wish that in the years to come I develop even 10% of the grace and strength that my mother has. In the meantime …I hold her hand ..I pray and I keep the faith…
July 9th 2008:
Its ironical! I started writing this upto exactly the last sentence above. I couldn’t finish it because Mum was admitted today at 6 pm. Her breathing was not improving and once again we had no choice. Dr.Raja said we have an impending crisis on hand and we need to be prepared. Dad and me were dazed. Hasn’t she suffered enough he asked the Doctor. He had no answer. I had only one question going through my mind..How ..just how do you prepare for something like this?? I am always on tenterhooks when I see her gasp or gesture to me. So here I am in Room 4405 of the Apollo hospital in Chennai completing what I started to write. Its 9.20 pm and I know the days ahead are going to be rough..What happens next..Only God knows!!
July 27th 2008 :
Mum underwent an emergency tracheostomy two weeks ago! Again we were left with no option..we did not want to put her through another procedure because she was so frail but there was no choice.. If we did not do it in time , she could choke or suffocate. I think the only time i saw a tear in her eye was when she was being wheeled into the Ot to get it done..what was she thinking?? it was a sinking feeling in my stomach that i cannot forget. To see her go in there alone..why wasnt I a Doctor for that minute so that I could be in there with her??!! But she came out looking calm and relieved. The Doctors had said that the tracheostomy was merely a life saving procedure so that she would not suffocate. The bad news..the tumor was back and spreading and she has a few days! Words that pierced through our hearts worse than the sharpest knife could..How ..just how do you make sense of all of this!! And how did it come to this??!! What happened? Were those 12 weeks in vain? Why didnt the new drug take effect? Emotions went from anger to confusion to acceptance..But we did what we had to at the time given the information and prognosis and looking back and asking why is not worth it..
I have no answers and i am exhausted to even ask..what do i ask and why?? So i become numb and i devote myself to loving her and being there for her.
I am lucky in many ways..In some ways i feel blessed that i was chosen to take care of her and be with her day and night..I am lucky that i am not pinned down by my job and have a wonderful support system at work, i am lucky that i have a husband (Ajay) who let me leave everything in Bombay to just be with her for the last 11 months and run house and take on my role while i am away... I am lucky i have a wonderful father who loves us and has left no stone unturned as far as mums comfort and treatment is concerned..I am lucky i have a wonderful sister (Smita)who is my reality check and strength ..I am lucky I have inlaws who are so caring ..I am lucky i have friends and family,my aunts,my uncles,my grandma,my cousins, who pray for Mum and give me strength , friends I can talk to and just release my stress,friends who love mum..And most of all i am lucky i am with Mum day and night!
Mum, God and the C word!
Life has taught me..lessons that will hold good for years to come. Moments and incidents that i will never forget. Sitting here in the hospital ..who knows what tomorrow will bring?? We are all taking each day as it comes because there is quite honestly no other option! Mum is off most medication..She is extremely alert but very tired and sleeps most of the time..She communicates by writing everyday, She is fighting,Praying..Its now Her spirit , God and her fight against the Cancer! There i finally said it..Cancer..Its no longer the C word..We will fight..We will keep the faith!
I end for today with a poem sent in by one of Mum's friends from London..
Thank you Nilu aunty ..
The little cares that fretted me,I lost them yesterday
Among the fields above the sea,
Among the winds at play;
Among the lowing of the herds,
The rustling of the trees,
Among the singing of the birds,
The humming of the bees.
The foolish fears of what may happen--
I cast them all away
Among the clover-scented grass,
Among the new-mown hay;
Among the husking of the corn
Where drowsy poppies nod,
Where ill thoughts die and good are born, Out in the fields with God.
By : Elizabeth Barret Browning.
Miracles ..To believe or Not to Believe:
Today is the 6th of August. I have been wanting to write especially to thank everyone who has taken the time to read my blog. Your kind words, your love for mum and prayers have all permeated through this hospital and touched her.That I know for sure. The reason I say this is because of what transpired on the 2nd of August...A day that should go down in the books of medicine !
I will not go into the details of what happened but needless to say it was horrific. Life always throws harsh surprises when you least expect it. I was reading something out to Mum on the morning of the 2nd and almost suddenly I looked up and Mum started spurting out blood from her mouth and nose in the room and within minutes, she was rushed to the CCU. I collapsed to the ground and for ten minutes did not have even an iota of strength in me to move! Until i saw Mum..as they were wheeling her down she had the same look of calm on her face as if to reassure me! Through all that blood i could only see her beautiful reassuring eyes..I thought to myself .."where is she getting her strength from????"
Dad was on a flight from Bombay and he would not be in the hospital for at least 2 hours. I knew i had to handle this on my own until he arrived.
The sight was unbelievable..there was blood everywhere and mum had absolutely no fear in her eyes. The Doctor asked her to relax and she gestured indicating that she was not in any pain at all!! It is then that I concluded that either she has some kind of divinity within her or some divine power is protecting her. As she continued to bleed , the Doctors faces said it all..She would not make it..I heard one Doctor from behind the curtain say.."Try and sustain her till the husband arrives"! I could not weep, I could not talk..I just waited for Dad.
Dad and me were in a daze..Mum continued to bleed for 5 hours. The only thing I remember vividly is when Dad asked the Doctor in the CCU , "will she make it through the night" and he looked at Dad and me and said " No, I am really Sorry , she will not make it through tonight".
8th August 2008 : Mum made it through 5 nights!!! 4th of August was her Birthday. Wishes from all over poured in and she smiled as we conveyed each one to her. We were thankful and beyond grateful that she was with us on the day that she came into this world.
Last evening the Doctor came to Dad and apologised and ended by saying "Medically she should not be here with us today but she is.. I guess miracles do happen!
Miracles !!! Is this really a miracle?? To see mum like this makes my heart ache beyond words can describe. She is in the CCU battling,fighting every minute.I long to just hold her, sleep on that bed with her, never leave her side..
She is totally and completely alert, her vitals are all ok but she is on the ventilator. She writes clearly on my arm and still has endless questions. ..
"Will i be well, What are my vitals, When can we go to the room,Have you all eaten, Are you taking care of yourself" ??
It is amazing! It is baffling. It is mind boggling. This will.This strength. How does she do it?? What is this? I know I should not question but I cannot help it. After being through so much suffering and beyond, how ..just how is it possible to be so positive and so strong yet???!!!
I whispered into her ear to leave it to God and to not fight anymore, to not ask questions , to just be peaceful and relax and she smiled her broad smile! Then gently on my arm she wrote :
Do not worry..I will be fine...
What does that mean? What did she mean?I do not know what will happen and what God's ways are ..but i do know that the 2nd of August showed us a miracle and i believe Mum truly made us believe in a miracle that day!!
Mum has been off all medication and pain killers for almost a month now. She is not even on a drip because her veins are thrombosed and she clearly did not want to be poked or medicated anymore. But she is alert and with us. Its 10 am and i must go down now to hold her hand and be with this brave and most amazing Mother of mine who battles each day showing us just how powerless and small we are in front of that Supreme Power!
Eventually ..HE will decide our fate and We Must Surrender!
Such is life!
Whispering Hope :
11th August, 2008 :
10 days of sheer trauma watching mum in the CCU and finally she is in the room. No medication,No painkillers, No sedatives and she made it! I know how much she wanted to get out of there. She is off the ventilator and therefore no longer critical.The weaning off process was successful. She is now on a bit of oxygen that is being given through the tracheostomy site. She was all smiles as they were wheeling her out of the critical care and into the room. So here I am ..back to the old room..4407.After spending 110 days in this room with Mum in February, did I think I would be back here with her..Never! But we have learnt to expect the unexpected. And with my dearest Mum , we have learnt to "Never say die"!!:) We have learnt now to never give up ,to never analyse and think why and how..instead..just accept.
That day on the 2nd of August , everyone had given up...Medicine,the Doctors, and us..The only person who did not give up was Mum!! It is a lesson for all of us to learn.
I was able to keep calm and be strong the last week because of the support I got from my aunts(Mums sister Sucharu and Mums sister in law Preeti).They held my hand, held fort at home,made me smile and made life so much easier for the last ten days.
I am ever so grateful to my aunt Sucharu for leaving everything ever so often and coming here to be there for all of us.She has been my anchor through this time and I will not forget what she has done for me.
The Doctors see no hope..Yet when mum smiles and writes on my arm still..
Thank you Preeti Mai and Mojha Mausi for reminding me of Whispering Hope and singing it with me...
Soft as the voice of an Angel
Breathing a lesson unheard
Hope with a gentle persuasion
Whispers a comforting word
Wait, till the darkness is over
Wait, till the tempest is done
Hope for the sunshine tomorrow
After the shower is gone
Whispering hope.. Oh, how welcome thy voice
Making my heart
In its sorrow rejoice
If in the dusk of the twilight
Dim be the region afar
Will not the deepening darkness
Brighten the glimmering star
Then, when the night is upon us
Why should the heart sink away
When the dark midnight is over
Watch for the breaking of day...
Dying to Live:
I know many well-wishers have been reading this blog for an update on Mummy. Honestly, I just did not know what to write. The last month has been an absolute BLANK..A blank in my mind and in the way things are.The Doctors have drawn a blank, we are blank..And Mummy's eyes are sometimes blank …There has been no improvement whatsoever in her condition.
Each day brings on new problems but the worst was when we realized that she has lost hearing in her left ear. I don’t know which was worse..seeing her helplessness at not being able to listen to our voices or us not having heard her voice for months and now knowing she cannot hear ours! She is frail beyond belief and the blood transfusion has not seemed to work.
No more interventions, no more medication,No more blood tests .It has gone beyond that stage because there is no point. I do not even know why we wait so eagerly from 11.30 to 12 noon for the Doctor to come on his rounds..we know that day after day the good Doctor will say the same thing.. “She is critical, we just have to wait and watch. Anything can happen anytime.”
So we do just that..day in and out..Wait endlessly and watch patiently..We are faced with a situation that is emotionally traumatic and very difficult practically .We cannot even think of taking her home in this condition. The sword of Damocles hangs over our head every minute …And I realise ironically...
Mum is Dying to Live…
She is totally bed ridden.A condition that a woman with her dignity would have dreaded. Blood continues to be suctioned out of her trachea and mouth.Her saturation levels keeps fluctuating so oxygen has to be given through the tracheo site time and again. Her face is swollen and her body so frail I don’t recognize it anymore.
I often wonder what kind of test we are all being put through … endless,exhausting and so painful. I hold her hand every night often wondering if she even knows I am there. She has a glazed look in her eyes when they open as if to indicate that she is in another time and space. But then suddenly that glazed look will turn into a smile and just when you wonder if she knows what day and month it is, she asks for my hand and writes ..tomorrow is Ganesh Chaturthi..Please pray…
Tomorrow is Ganesh Chaturthi..a festival Mummy looks forward to every year as she brings her Ganesha home with so much love and adoration. For years we have seen her perform the Puja with Dad so intensely and correctly with utmost devotion asking this benevolent God to remove all obstacles and protect her family.
Tomorrow Dad ,my grandma and me will go down to the Ganesha temple in the hospital and pray that he protects her and removes all obstacles to keep her peaceful without any more suffering.
MUMMY I MISS YOU TERRIBLY..BUT I KNOW YOU WILL ALWAYS BE AROUND... September 29th, 2008 : Atlanta
Not even a month ago, I could hold my mothers hand,see her, be near her, smell her, look into her eyes.Today... its only a few weeks later and suddenly I cannot see her,touch her or be with her... I can cry , I can pray , I can beg the powers that be to bring her back to me…but such is the finality of death! She is no more than a presence , a memory …that is the reality I must face. 7th September..The one Sunday in 12 months that I went home earlier than usual for an hour because Mummy had started to bleed from the mouth. I was worried so I told Dad I would be back soon.The Doctor had come and said she was stable. Daddy was to leave for Bombay for a week the next day and the Doctor said since she was doing alright he could leave. She had been very distressed the day before because she had lost her ability to hear. We asked the Doctors to give her a hearing aid because our voices was all she had to cling on to. The moment the hearing aid came on and she heard our voices she smiled her broad smile and seemed so relieved. I talked to her all night and each time I stopped she would gesture to me to go on talking because she wanted to hear my voice. So that night I spoke to her until 3 am..held her hand tight. At around 3.30 am she suddenly woke up and asked me to open the hospital room door. I told her to sleep but she would not listen and so I opened it. Then she asked me to get her sari and her jewels and give her a bath. I told her to sleep and that she was in hospital but she kept asking me to open the door and said she had to go. Finally she went to sleep at 5 am. I did not want to accept then that she was already making arrangements to go on her divine journey. The next morning around 7 am , I held her hand , kissed her forehead and told her to be peaceful and rest..She nodded sweetly and gently , her eyes closed..I did not ever think that would be the last time I would say anything to her. Even now as I write I do not believe she has gone.
My aunt had always told me that if Mummy had to go she would never go when I was around because she was too attached to me. I could not imagine that because I was with her almost all the time.But that day, she decided to take her last breath when I was not by her side. It was a repeat of what happened on the 2nd of August..it happened at the same time 12.45 pm! Suddenly she started bleeding. Dad called me and told me to rush to the hospital.I could hear the rapid beeping of the saturation machine and my heart sank as Dad said, "Come soon she is going". I ran out of the house with my Grandma and rushed to the hospital. But it was too late. She had gone before I came in and I was in shock.The sight of her laying like that not responding to me will haunt me for sometime to come.She was just a body and death was staring me in the face. My darling mother was no more. Dad was by her side in her last moments and Dad's older brother and his wife had come to visit her. She looked at them and smiled and suddenly like as if a dam had burst, the blood came out with a force that no one could control. She did not panic, she did not struggle..she simply held Daddy’s hand , joined both her hands in prayer and looked at him as if to say she is going to God and pointed at the heavens and closed her eyes peacefully. They say if you think of God in your last moments then you go straight to heaven and attain salvation and I am sure that is where Mummy is..With all the celestial beings, charting out our lives,peaceful and happy . She cannot be anywhere else but in exalted and divine company. After this much suffering she remained peaceful till the very end.
There are so many uncanny incidents that have happened since she has gone that I truly feel there is a world beyond ours and she knew her end was near but never let us know it. She planned things in her own way so that we do not get inconvinienced. She did not leave us on the 2nd of August even though there was every indication then that it was her end. She gave us one extra month with her so we could prepare ourselves better, so that she could let us serve her better.Almost like a dress rehearsal because her end finally came exactly like it did on the 2nd. She planned it all.She worked her magical ways even until the end. She looked radiant in a pink and gold saree. Like a bride.Her ashes flow in the holy rivers but her spirit is omnipresent.
Mummy was truly a divine person. She is an example in strength, courage, suffering with dignity and her purpose in life was to teach us all these lessons. I feel her in me. I hear her voice telling me to do the right things. I do not know if time will ever heal this loss, this void I feel but I am sure she will guide me and be there for me and help me live my life to the fullest. Today we are here in Atlanta for a months break. Living with her memories. Dad, Smita and me have decided to make the most of our time together and be there for one another and live with the happy memories. We will spend our time with family here and hope that in time we will make her proud of us. We miss her ..we miss her comments, her advice, her presence, her laugh ...we miss her terribly..but she will never leave us..she cannot..Mummy is like that...she was and always will be there..For us...
I had secretly hoped i would never have to end this part of my blog because as long i was writing , Mummy was alive..But i have to end here and start a new chapter ..A chapter of life without her physical presence..A life that I must live to make her proud.Smita and me are planning to do many things in her name and the next part of my blog will now be to update everyone about all that we are doing in Mummy's name..We hope that we can make her proud..
Mummy I love you... I will always be your little goody girl and small fairy:)
October 7th 2008 :
Baltimore , USA :
One month exactly ..one month how fast it went by at times and how slowly time dragged when I thought of Mummy. I close my eyes everyday to say my prayers and I see her face in front of me. I know that is what will help me go through the day and the rest of my life...
Family is truly fortune ...And how fortunate I am to be blessed with this family.
We are here with Mummy's sister Pushpa and I don't feel so lost anymore..i don't feel alone..I feel close to Mummy. Mummy flew here to give her stem cell to my aunt 10 years ago but thats not the only reason I feel close to my aunt .. I know that Mummy brought us all here ..to be with family , to realise how important family is and that is something I will always cherish , treasure and value. Thank you Mummy.
23rd November 2009
Time is a healer they say..I wonder if this is true..How can I ever heal after what Mummy went through. I can move on and live life to the best of my ability to honour her..But sometimes time is also cruel. Time stood still when Mummy passed away and now time moves on. Not a day goes by when I don’t think of her..see her pictures, see her smile, long to hear her voice, just talk to her.. Has she really just gone.??.i do not believe it …I don’t want to believe it.. I cry endlessly at night..during the day whenever I am alone..But will it bring her back ..never..so I must kick myself and just get up and go..do whatever it is I am supposed to do…and in time she will just be a memory to some..to me she is always in my heart ..People say you will feel her in you , she is there..But she is not! She has gone..God knows where..Where is she I wonder..in this unfathomable space..what is she doing..does she really watch over me or is she just a star in the sky.. is she with God?..what is it like?..where do we all go??..will I ever be with her again?Must I do something to ensure that I can surely be with her because our connection was so strong?But what if this is it ? Will I see her ever again and even if I do will she recognise me ..will I know who she is..? How do I go on until then?