Imperfect lives.

On March 7th 1964, Dr Henry delivers his twins, and while his wife is under sedation, decides to give away the ‘imperfect‘ twin, born with Down’s Syndrome.

Phoebe, the twin with Down’s Syndrome is sent to an institution. Here’s what the institution was like.

Dr Henry tells his wife they had a still born daughter and a healthy son. She wanted to hold the baby once, visit the grave and hold a Memorial Service…  She was advised to ‘move on’, and to focus on the child she had.

‘The Memory Keeper’s Daughter’ by  Kim Edwards touched a chord. 

Most of us have clear guidelines laid out for exactly what can make us happy. Who we marry, who we divorce, who we raise, who we abandon, what careers we choose, who we respect and whose opinions, feelings or wishes we can’t be expected to take seriously (like a child with Down’s syndrome)…

I liked this scene.

We expect happiness to come from success in career, being married at the right time, to a conventionally suitable partner and raising perfectly formed, class toppers and merit listed kids. Anything less could only mean disappointments and frustration?

Watch the trailer. (I hope the movie is as good as the book). Read the book. And think again.


The book is about women, men, children and families who fit, and those who don’t fit, into the ‘fit-to-be-happy‘ mold.

The book is also about some of us controlling the lives of some others amongst us. Phoebe’s mother longs for another baby but once again has no say in the matter. All with best of intentions to protect her from any further unhappiness (i.e. another imperfect child). For her own good. Her sister’s life shows how life is still a choice each one of us makes.

The book is also about women’s changing lives as they learn to break the norms and take control of their own lives.

And about how little (or how much) our happiness depends on how conventionally perfect our lives are.

 

Movies I think I should watch.

Here are two movies my son thinks we should watch.

1. Welcome to the Rileys

James Gandolfini and Melissa Leo have spent years mourning the tragic loss of their 15-year old daughter. They cope in their own ways. He sleeps with a waitress, and she never leaves the house under any circumstance. But when Doug (Gandolfini) travels to New Orleans for a trade show and lands himself in the life of a very young, runaway girl named Mallory (Kristen Stewart) who spends time stripping and turning tricks to maintain her meager, dirty existence.

Doug takes Mallory under his wing. He helps her clean up her house, attempts to give her a direction in life, all while telling his wife that he just can’t come home. This prompts his wife to leave the house and come to New Orleans, where she and Doug spend time weaving themselves into Mallory’s life, finding only more trouble as they get more and more involved.” [Link]

2. Charlie St Cloud

‘Charlie St. Cloud (Zac Efron) is a young man overcome by grief at the death of his younger brother, who takes a job as caretaker of the cemetery in which his brother Sam is buried. Charlie has a special bond with Sam, he meets him every night to play catch and to talk. Then, a girl comes into Charlie’s life and he must choose between keeping a promise he made to Sam, or going after the girl he loves.’ [Link]


And Shy recommended this one.

3. Rabit Hole

“After the sudden death of their beloved child Becca (Nicole Kidman) and her husband Howie (Aaron Eckhart) are neither dead, as they might sometimes wish to be, nor alive, at least as they once were. Eight months after 4-year-old Danny ran into the street and was killed by a teenage driver, they dwell in a limbo… To move on is a betrayal of Danny’s memory; to remain paralyzed by sadness is to count not one but three fatal victims to the tragedy…  it is an evocation of coping that is deeply, complexly, heartbreakingly human. —M.C.[Link]

From: http://www.time.com/time/arts/article/0,8599,2020173,00.html#ixzz12aswTDEs

Edited to add:

Thank You Chinkurli,

4. The Son’s Room


(This one recommended by Sangitha.)

5. The Ordinary People

Robert Redford made his Oscar-winning directorial debut (based on the novel by Judith Guest). Mary Tyler Moore and Donald Sutherland lose the older of their two sons to a boating accident; the surviving teenage son blames himself for his brother’s death and has attempted suicide to end his pain. They live in a meticulously kept home in an affluent Chicago suburb, never allowing themselves to speak openly of the grief that threatens to tear them apart. The movie examines the complexity of repressed emotions that have festered under the pretense of coping…–Jeff Shannon [Link]


Watching movies about child loss and how the families cope is helpful, not depressing. It’s the same as reading books like ‘The Knitting Circle’ and ‘The Year of Magical Thinking’.

I watched Saaransh.

Although some readers felt this movie was depressing – and it was, but this movie also dealt with a what we are going through. Reading books & blogs and watching movies related to child loss help in understanding our grief, and in realising that it is normal to feel the way we do, and somehow that is comforting. The couple in this movie lost their son, five months ago in a mugging incident in New York.

At first I didn’t want to watch this movie.

The dry leaves blowing in the wind, the dimly lit rooms, the way the parents (Anupam Kher and Rohini Hattangady) wake up each morning,  the way they move, the emptiness of their lives all was very frightening.

The scene where the mother asks the father to buy a 60 watt bulb because the bulb in their bathroom had blown disturbed me. Why? Maybe because they had to worry about blown bulbs when they had lost their child?… maybe because that was all they seem to have left in life?

But I am glad I did watch ‘Saaransh‘.

The couple takes Sujata (Soni Razdan) as a paying guest in their son’s room. Sujata was seeing the son of a local politician and gets pregnant. The boy friend intends to marry her but is terrified of his father. With elections round the corner, the politician father wants the baby aborted. Rohini Hattangadi believes this baby is their son being reborn.

Most people describe the scene where the father battles with the Custom Officers for his son’s ashes as the best, but what I found most moving was when Anupam Kher unexpectedly finds something to live for. How he walked taller, straighter and faster after that.

And then the flowers that bloomed in the park.

If you haven’t yet seen this movie released in 1984, watch it now. Here’s sharing a scene I liked…

I also liked Anupam Kher realizing that his wife could be his partner. Was his partner.

It’s Real not Virtual : Love from Crafty Shines…


Crafty Shines couriered me a packet… she refused to tell me what it contained.

 

Turquoise Heart Key Chain… Crafty Shines do you know this was Tejaswee’s favorite colour?

Three books marks and a ‘Cake in a Cup’ key chain… (Dizzy Dee’s Cake in a Cup!)

Calvin and Hobbes… to learn a little more about these two ‘literary characters’

And Calvin… : D isn’t there a bit of him in everyone?’

Don’t miss Hobbes’ reaction to the sight of a book mark with his face (below)

Crafty Shines shared these lines,

“…But the threads of memories

Are woven with enduring specks.

I will pick these particles,

Weave the threads,

And I will meet you

Yet again…”

(From Amrita Preetam’s ‘Mein Tainu Pher Milangi’)

I found the lines here,

Mein tainu pher milan gi (I will meet you yet again)

I will meet you yet again
How and where? I know not.
Perhaps I will become a
figment of your imagination
and maybe, spreading myself
in a mysterious line
on your canvas,
I will keep gazing at you.

Perhaps I will become a ray
of sunshine, to be
embraced by your colours.
I will paint myself on your canvas
I know not how and where –
but I will meet you for sure.

Maybe I will turn into a spring,
and rub the foaming
drops of water on your body,
and rest my coolness on
your burning chest.
I know nothing else
but that this life
will walk along with me.

When the body perishes,
all perishes;
but the threads of memory
are woven with enduring specks.
I will pick these particles,
weave the threads,
and I will meet you yet again.

-Amrita Pritam.

The picture can be seen bigger here.

Main tainu pher milangi

 

Note: I was undecided about what to call this post – ‘Virtuality Shines For Real’ or ‘A Courier from Crafty Shines’ or something else. I asked Phoenixritu on G mail Chat and the post title is her idea. Thank You Phoenixritu.

Books I am reading.

Here are some books I found helpful.

1. The Year of Magical Thinking – Joan Didion ***

It’s about how life can change so suddenly. I could totally relate to the author feeling this was happening to someone else and she was just watching it happen. Also her unwillingness to change anything – because the finality takes a long time to sink in. Moving from our GK house troubled me, because I felt (knowing that was not true) that Tejaswee won’t be able to find us if we moved. Also a feeling that we could have saved her if  we had worn white T shirts while waiting outside the ICU, or put pictures in an empty frame or said ‘touchwood‘ whenever we said the same thing together. The book made me see I wasn’t the only one to feel this way.

2. Forever Ours – Dr. Janis Amatuzio *****

This book is about hope, and for me, also about some comforting ‘make believe’. It is very difficult to believe that someone who is such a part of your life (and will be forever) is now ‘not there’. The book seems to say, “We don’t know, we have reason to believe they are gone forever, but we also have reason to believe they are still there somewhere and they are happy.” The book is about what people see and feel when they have near death experiences.

3. The Knitting Circle – Ann Hood *****

The author lost her 5 year daughter to Meningitis and I could relate to what she felt and how she tried to cope. The book is about how she moved through her grief and how for a long, long time, nothing else mattered. I realise, I enjoyed being a part of what was happening in the world around me but have almost no interest in it now…On some days I cannot think, watch, read, talk about anything beyond my grief. Thankfully there is enough to read about what I can read.

But, this book is also about knitting. This book made me smile, hope and made me want to learn to knit. I think that is a miracle in itself… I have crocheted as a teenager, and gifted crocheted stuffed toys to friends. The last time I tried knitting was when Tejaswee was born, my mom finished it for me. Now I would like to try it again.

I can’t thank Sangeeta enough for recommending this book.

4. Five people you meet in heaven.***

This book is for fathers of sons. Mothers too. I strongly recommend anybody who has a son to read this book. It’s entertaining but I did not find it comforting for me in anyway. This book made me wonder who my daughter would have met if she was in this book. My dad. My husband’s parents. A dear friend I lost in 1994. But once you start reading you realise the author doesn’t think you meet only your family. Read to find out who he thinks one could meet.

5. Shantaram – I was reading it on my daughter’s recommendation (read insistence) but maybe I will have to try finishing it a little later.

Here are some other books I have ordered, will blog about them once I have read them.

The Memory Keeper ‘s Daughter – Kim Edwards

A Summer To Die – Lois Lowry, Jenni Oliver

Man’s Search For Meaning – Viktor E. Frankl

A Summer To Die – Lois Lowry, Jenni Oliver

Beyond Tears: Living After Losing A Child by Ellen Mitchell (and nine others)

The Road Less Traveled – M. Scott Peck

Tejaswee Rao Scholarship and Blogging Awards.

We visited Tejaswee’s college and discussed and decided upon various ways in which we could start a Scholarship in her name. The option I like requires depositing a lump sum amount (Capital) and the interest from that amount provides Scholarships, and if we choose,  Hostel fees, PG expenses, Books, Field Trips etc to one or more students.  Also, we can continue to add to this amount if we wish to (like on her birthdays). This makes me wonder if we should continue with the registering of the Trust I have mentioned earlier. A Trust requires some legal knowledge, annual auditing etc, though it also enables other people to contribute. We need to think about this now.

Her favorite teacher said the selection of the recipients for the scholarship, “should not be based purely on academic performance… Tejaswee was brilliant and  creative, she really cared, she was compassionate, confident and she was involved, aware and opinionated, she was so full of life… ” She couldn’t go on. I understand now what they mean when they say ‘tears are a tribute we pay to the memory of those we love‘ …Every time I meet someone Tejaswee looked up to or cared for, I can’t help but notice how well she chose who she liked…

They helped us identify one student, a class mate, who will receive Tejaswee Rao Scholarship this year. I remember Tejaswee speaking fondly  of her. The college suggested we meet the child and I think we would love that. This is a positive beginning.

Her college also held this contest.

I have decided to do something similar on this blog. I had planned to use the Blogscars 2010 as a means to create a collection of links to posts related to the issues this blog deals with (Girl Child, gender bias, intolerance etc) and to recognize those which really can make a difference… I will be announcing the Blogscars soon. I would like to dedicate the Blogscars to my daughter Tejaswee with Cash Prizes and Certificates to be won…  Your suggestions are welcome.

I have created a blog – a Support Group for Coping with Grief and Loss, it can be found here.

When they cry.

Sat, 2nd Oct 2010

A friend called last evening. She was sobbing. She asked how I was. She said she read Tejaswee’s ‘A letter to the future‘ for the first time today… She excused herself to blow her nose and then again asked how I was. I remembered, when she had called the first time, she had said she had been scared of calling me and how much better she felt after speaking to me and then she had broken down herself. (I blogged about her once long ago.)

She said Tejaswee was just like me. I told her the likeness had bothered me sometimes, specially because recently we often said the same things together, like, “Isn’t it too hot for this time of the year…” or, “I think we should change these curtains…” and then she used to laugh and accuse me of ‘stealing/reading her thoughts‘. It was almost too much and it troubled me – maybe it made me superstitious in some way. It wasn’t just an odd time – but many times during a day. It had become very  frequent lately…

Oct 3, 5 12 am

Last evening we walked  down to a neighbourhood mall to buy a hard drive and to have dinner. Son, who finds evenings the most difficult time of the day, started asking his angry, tearful  questions.

“What would have happened if I had not seen her in the ICU that day…?

Why did someone like her have to die …?

“I don’t think it is good enough that I had 18 great years with her… why are people even born if they have to die so young…?

Having no other answers, my sister in law and I told him the story of Ganga drowning her seven children (from Mahabharata).  We also told him stories from ‘Forever Ours: Real Stories of Immortality and Living from a Forensic Pathologist – Janis Amatuzio. I found this book very comforting – thanks for recommending it Shree. I had read, long ago about similar experiences in Reader’s Digest… wonder how many of us – if any, have had such experiences.

At home Gabbar Singh (Proton) senses immediately if I cry, he pushes himself close to me – and he too cries (softly moans)… How much does he understand?

We had these games, where I ask him to “Find Tejaswee! Where’s Tejaswee gone?“, where she hid behind a door or in another part of the house and he used to sniff the floor and the air, to excitedly look for her and locate her. There was much excitement and celebration, wagging and rolling on his back to celebrate the moment of ‘finding‘ her.

The dogs also rushed to the balcony every morning to enthusiastically ‘Say bye-bye to Tejaswee‘ when she left for college.

Here she was playing peek a boo with him this winter…

What is the best way to preserve digital images? I am thinking of storing all her pictures and videos in a single, new hard drive, I have heard that digital images are damaged with time, and CDs and DVDs are a better way to store them. Is that true?

Oct 4, Mon. 6: 05 am

Life now seems to be divided between easy and difficult days. On easy days I can hope, read, eat, think, sleep, talk and maybe even smile politely.

On difficult days everything seems meaningless. Now I look for ways to avoid triggers that cause difficult days… any changes are difficult. Being alone is very difficult. Coming unexpectedly across a scrap of paper with something written in a familiar handwriting in intensely painful on difficult days. Some parts of my brain seem to forget that no such new scraps will ever be created or else why does it hurt so much to find them? The brain might require to find countless such moments and memories to register this…

The thought that the kind of day I am going to have is not really in my control was frightening. I sensed this morning was going to be difficult – and decided to focus on making it easy. So I plan to write emails and posts and read up some more about how to stay positive. Recommendations for books and movies are also welcome. One of the recommendations is Saransh – I hope to watch it soon.

Preserved tid bits of life as it was…

Yesterday I read ‘The year of magical thinking’ by Joan Didion (Recommended by Apu and Himani).

Life changes fast

Life changes in an instant

You sit down to dinner and life as you know it ends.

*

Since I was adamant that she was going to be walking out of the ICU, I never said good bye to her. Since she was not fully conscious there was no time to know what she was thinking or feeling. I was trying to remember when I last said a happy ‘I love you’ to her. There are photographs we took on 15 July in front of a mirror – where we are laughing and I have hugged her and she is making faces. I hugged her all the time. I did that in the hospital too – but it wasn’t the same thing. When did we have a last happy conversation? The days went by in such a daze I can’t remember… she was irritable in the hospital and also just before that…  the fever made her irritable. When we were still in the room she once woke up, got the nurse to detach the  IV (drip) sometime late at night and sat on the sofa where I was asleep. She wanted to talk and I was extremely tired and sleepy, so I half listened, half dozed off. She wanted to create limericks and was annoyed when she saw me trying to record them on my phone. (I am able to hear nothing when I tried to replay them… ). Little things annoyed her by then. She was talking non stop (she usually did that) and I wanted to join her and talk to her but I was also afraid that I would be too tired/sleepy in the morning. We had been warned Dengue was going to make her more uncomfortable and she got me to  raise or lower the bed and then wanted it raised again but nothing made her comfortable… My sister in law and brother in law had had dengue fever two years ago and she had described how it felt. We had explained to her also about how it runs it’s course and then the recovery is complete. She had later started sounding breathless because of the fluid around her lungs, and talking became almost impossible. The doctor described breathing then as trying to blow a balloon in a bucket of water. I had thought nothing worst could happen.

She always followed me around the kitchen and the house describing what happened in college/school – almost in a hurry, as if she worried she might forget something. Sometimes she just said ‘Hi’ or ‘Muah’ on Gmail chat… from her school/college . I   did not delete any messages from her and sometimes we read them out and laughed at them, and some of the links were worth going through again.

She and some friends had talked about shaving their heads and I was strongly against it. I didn’t ask her not to, I said maybe I would join her. My sister in law conveyed (subtly) that perhaps it was a good idea, because with no guys looking at them – they would be able to focus on their studies better… So when she mentioned blue extensions I was very relieved. These blue extensions stayed with her.

The conversation below was at home – we were sitting in her room, on her bed (I think).

The blue extensions…

*

http://www.blogcatalog.com/blog/blue-hair-dye/f7d04844563d2211eb58c90fb46f8c93

July 15 2010 (in front of a mirror)

And I must have been asleep during this one, she was in Delhi, we were in Pune.

Gmail…

She loved Calvin and Hobbes. She shared many which reminded her of herself or of her brother… a whole lot of them came with messages like, “Calvin is me. :D” or “I am definitely Calvin!

The right way to grieve.

Some days have been so bad that it was impossible to do or feel anything but pain. Nothing mattered. A friend said maybe I was in shock earlier and she suggested I don’t avoid this pain. This is what I don’t understand – am I avoiding  the pain? How does one avoid the pain? I don’t think I have any control over this. I don’t cry much but the possibility of any more pain is  very  frightening. I have read that ‘there is no normal way to grieve‘, but still it worries me to read, (in ‘SOME THINGS YOU NEED TO KNOW WHEN YOUR CHILD HAS DIED‘)

•    Grief Waits. If you put it away and try to ignore it, it will simply wait until you have no choice but to experience it.

•    We grieve as intensely as we love.

•   You will never be the same person you were before your loss.

I can agree with this… but it will be a while before the changing will stop. Till then there is some confusion, we have kept some decisions on hold for six months to a year, because I am not sure how I feel.

One of the friends who visited me said I was handling it much better than another mother she knew. This mutual acquaintance had lost her only son in an air crash, he was training to be a pilot. I had met them years ago when we used to take our kids to the same park every evening and I remember a good looking, smart and sensitive 8 year old.  I remember the proud mother, even then she was very close to  the son. The friend said she had seen how ‘badly’ the mother “handled it from day one“. Friends advised her to ‘get over it’ and to ‘move on‘ … Now I wish I could meet this mother (and I will, she lives in the NCR).

I wish we had more awareness about Grief Counseling and we understood the difference between Grief, Complicated Grief and Depression and how to help with each. Here’s something I agree with,

Avoid Judgment. “You should …….”, “You shouldn’t ……” are not appropriate or helpful.

Everyone grieves differently and therefore the grief process should not be rushed.

Some parents will be “fine” and then experience deep grief a year or two later; others grieve immediately.

There are no standard timetables for recovery.

Encourage bereaved families to be patient with themselves.

“Get on with your life.” “Aren’t you over it yet?” “It’s time to put it behind you and move on.” Those demands are unfair and unrealistic.

I wish more of us understood that :-

•    There is no “normal” in grieving.

•    There are no set-in-concrete stages or timelines in grief.

•    It is typical to feel almost numb for the first few months. When that “fog” lifts, it can be very frightening.  Think of it as a wave and ride it out.

I have read (and experienced) that the grief of child loss feels like drowning – you go down and you come up gasping for air and then you sink again, but slowly you can hope to have longer moments to breath.

•   Talking to and being with other bereaved parents is extremely helpful.

•    Other people will not understand your grief unless you share it.

•    It is okay to talk about your child as long as you want.

But it is difficult to find someone who would listen, so sharing with The Compassionate Friends helps. Here when we share our story, we feel better and we let another parent know thatThe grief journey is long, but they need not walk alone.

Abhilasha sent me this,

“Read about grief and shock. Learning about the symptoms that others have experienced helps you know you are normal and not going crazy when your grief is so deep and your pain so intense that you can hardly see two feet in front of you because of the fog of agony that surrounds you.

A friend said Buddhism believes that Death should be talked about as a fact of life – because this is the only thing in this world that is certain. It helps if we accept the ‘Eternal Law’ that everybody who is born is going to die.  I wanted to hear more about this and she requested Anand (from SGI, Soka Gokkai International) to meet us.  Anand visited us and discussed how each one of us has  a reservoir of strength within us – how each one of us is capable of finding  this strength and wisdom within us. About how it is not possible to control what life gives us – but we can control how we react to it. We do have the choice to be elevated and strengthened, or to be broken by our biggest loss.

And yet there are days when I don’t care if I am broken and life seems meaningless. Nothing matters. After reading  experiences of others who have been through the same pain on The Compassionate Friends – I realised it’s normal to feel this way. In fact Darcie D. Sims said ‘Grief is the price we pay for love.’

Even during the worst moments browsing through links (Thanks for  sending those…) that support parents who are grieving helps immensely.  One reads about other parents who feel the pain one is feeling. Nobody else can understand the pain and nothing else helps as much.

A 19 year old girl Jyoti died of Dengue on 11th Sept, in Artemis, Gurgaon. (Hindustan Times, Gurgaon edition, page 4). No other details were provided and calling the hospital didn’t help. I wanted to meet the parents.

We have initiated the registering of a ‘Tejaswee Rao Memorial Trust’. Will keep you updated.

I have ordered ‘The year of magical thinking‘ through Flipcart.

KEY POINTS ABOUT GRIEF


•    Grief is a universal response to significant loss.

•    Grief is extremely powerful.

Understanding the process and knowing what to expect can help you cope.

•    The worst kind of grief is the grief you’re experiencing now.

•    Grief work is very hard and takes enormous energy.

•    How grief is expressed varies among individuals.

•    Certain manifestations of grief are common and normal.

•    Grief is a lifelong process.

•    Grief changes through the years.

•    Death may have ended your loved one’s life, but it did not end your relationship.

•    Time does not heal grief; it’s what we do with the time that matters.

•    Effective grieving is not done alone.


– Marty Tousley CNS-BC, FT, in Finding Your Way through Grief: A Guide for the First Year

On writing about Hope.

What made me write those posts while sitting outside the ICU? Most of the days I wrote but didn’t publish, and some of the writing was like speaking to oneself. One desperately needed hope and strength.  Apu mentioned ‘The year of Magical Thinking’ and I wish to read it…
All this time I had been thinking that the days outside the ICU went in a daze and I can’t remember what happened when, and I don’t want to remember, but still went through the emails in the ‘Sent’ box, yesterday, emails sent to friends – from virtual and real world, using an I Phone, from outside the ICU. Instead I should have gone through the links, emails, recommended books and the photocopied book Sulo couriered.
Abhilasha sent this link, which clearly explains why this blog had been such a source of strength and solace.

Magical Journaling

Grief journaling and all forms of writing have long been recognized as an important and helpful tool for healing. In his book Waking the Tiger Peter Levine says that “[traumatic symptoms] stem from the frozen residue of energy that has not been resolved and discharged; this residue remains trapped in the nervous system and can wreak havoc on our bodies.”

I have found that I read and reread comments, emails, posts and links and stories. Sometimes I write replies that are not sent or posts that I won’t publish… but writing is like sharing and communicating, even if it is not really shared, just writing it down helps. What I cannot bring myself to do is write letters to my daughter… but I hope to do that someday soon.