Seven Years Together at Shishur Sevay

A few nights ago I dreamed I was trying to put our records together and that required that I establish records on the moon first, which I did, and then replicated here at Shishur Sevay. I kept asking, “How can I explain to people that I had to get this done on the moon first?” I’m working on a blog post about the past seven years here. Maybe that’s the answer as to why the dream.  I’m feeling a lot of pressure, trying to write about what it’s been like, and probably holding back a lot on what it’s really been like. I’ve been to the moon and back…. that’s what was required.  It was cold and lonely and void of vegetation.

Shishur Sevay today is thriving.  It’s glowing.  It’s what I’d dreamed it would be. So here is the blog I was working on before I went to sleep, before I understood I’d been to the moon and back.  The process of building Shishur Sevay has been brutal, but the product is beautiful.

Seven Years Together

A picture of all the girls of Shishur Sevay and Dr. Harrison on her birthday

My Girls of Shishur Sevay and Me

The first twelve girls came to Shishur Sevay in February 2007, so for me this time of year is always one of reflection.  They came with an array of abilities, disabilities, and medical conditions.  All came with scars, emotional and physical.   They all were socially and educationally deprived, and had led lives filled with violence and deprivation.  Then at some point, each had lost everyone and everything: parents, siblings, extended family, and community, and eventually were placed in a government institution.  These are the children I’d sought, the ones considered not adoptable in India or abroad. They had been rejected by adoption representatives before they were sent to me for “rehabilitation” by Order of the Child Welfare Committee.   With adolescence, three of the girls became too unmanageable, with behaviors that put us all at risk. My decision to return them to government care was very difficult, and taken after many attempts over the years at various treatments and therapies, but necessary if Shishur Sevay was to be the safe place it is.  I had not expected ever to have to do that.

This year we started an inclusive school, Ichche Dana Learning Center because educating the girls in outside schools “did not work.”  The girls are beginning to put their efforts back into learning.  There were several factors interfering.  One was their early deprivation that left them far behind their classmates, while they were also older than their classmates.   Science is now giving us information on the effects of this early deprivation.

http://ecceportal.in/index.php/news2/136-more-talking-longer-sentences-help-babies-brains

At school the girls were seen as “different” because of their origins, and they felt different. Teachers lowered expectations; some gave them false high grades because they “felt sorry” for them.  Others ignored them, or queried them about their origins and caste. The Indian system of rote memory left them too frightened to learn anything but the paragraphs they had to memorize and give back, an impossible task when you don’t have the foundations of language, any language.   Ideas of self-discipline, hard mental work, and delayed gratification were as foreign to them as I was..  If work was hard it scared them.   They lived in fear.  It was time to bring them back and start anew, which is what we are doing and so far it is working very well.

Girls taking notes at the botanical gardens.

Taking notes at the Botanical Gardens

doing a presentation of trees of botanical gardens

Presentation about the trees of Botanical Gardens

The girls did a presentation of their work to volunteers from Equal Health,a team of Australian educators who were with us  in January.

Ganga Presenting

Ganga Presenting

Ganga and Bornali both presented by use of the iPad and the recorded script.

This is inclusion.  Everyone is able to learn something and to contribute.  Some of the coursework has to separated by level of understanding and skills in reading and comprehension, but the ideas and subjects and methods of presentation can be done by all.  And our children with the most severe disabilities, even if they can’t join in, they still make wonderful and appreciative listeners.  Everyone has a role.

Our eventual plan is for the girls who are able, to enroll in the National Institute of  Open Schooling which will allow them to sit for Class 10 and 12 examinations. We will send to college those who are able.  We will look at job training for others.  Some of our older girls may need to stay with us.  I’ve promised marriage to those who want.  We talk about dowry because it’s integral to the world they live in.

This year though, I find myself thinking a lot about our girls with the most profound disabilities and looking at the therapies and methods that have and have not “worked.”  The children thrive on attention, especially one on one!  If I were in the US, I’d be thinking about finding teenagers to just play with them, floor play, songs, things I’m familiar with.  I haven’t found that here.  My experience (and I add the caveat that I can only speak for my involvement with families since 2000) is that teenagers do not “babysit” or work outside their families.   Play happens sometimes as “therapy” by professional therapists, but that means it’s a very limited and expensive resource. As for cognitive tasks, my little ones would rather be dancing.

She'd Rather be Dancing

She’d Rather be Dancing

One day I will tell the story of what it took to get here, but Shishur Sevay is a wonderful place now and that’s how the journey must be seen.

The Anguish of Seeing into the Future

Torment has taken up residence in a part of my soul.  Most of me is OK.  Life does go on.  The people around me would probably describe me as a bit sad, distracted, able to come out of it, and then returning, in quiet to this terrible place of loss, and also of confusion…. the work of “framing” the experience of Tuni’s brief life and her death.  And then, central to my anguish, is The Dream.

The canal

The Canal

This is the canal I saw in my dream the night of 10 August 2013.  The photograph is taken from the window of the Operating Theatre during her surgery on 13 August 2013.

I dreamed there was a canal in front of me.  It was night.  On the other side, dead babies were being put into this canal one after another, floating downstream in the murky water.  I was standing on this side, holding Tuni in my arms. Seema was with me and   I was screaming and screaming, “No, not my baby.  She is different!  She is different!”  My baby would not be put into that canal! I can still feel and hear myself screaming.  I’ve not stopped screaming from the center of my being.  I can’t.

Monday 12th August we admitted Tuni and took her to her room.  I looked out the window, and there was a canal, but not exactly like the dream…. Still, I was upset.  Yes, I thought of taking her out…. I spent the afternoon with her.  I’d hoped for some “quality time” with her but she slept most of the day.  I guess it’s what she needed. I lay next to her and took pictures of us with my phone.  It was a time of just being in the present, and the peace of being with a sleeping child.

Tuni sleeping the day before surgery

Tuni sleeping the day before surgery

She woke in time for me to feed her.

Feeding Tuni

Feeding Tuni

In the evening the massis she most enjoys came to replace me.   They played most of the night and in the early morning Tuni fell asleep.  She was still asleep when I met up with her in the pre-op room.

I had asked the surgeon if I could watch the surgery and he kindly agreed.  In the morning he met me in the pre-op room and then took me around, showed me the cardiac icu (It has a different name there) and introduced me to doctors in the lounge.  I changed out of my sari and into scrubs… hair covering, and mask.  I felt right at home.

Back in "scrubs" after many years

Back in “scrubs” after many years

Surgery went well for the first hour.  The shunt was in place and they were starting to close.   I was about to sms downstairs to Seema and the rest of Shishur Sevay  that I’d be down soon, when suddenly her oxygen concentration fell….. I sensed everyone in the room was shocked to see the numbers on the screen fall. I felt like the hand of fate had just gripped the surgeon, frozen us in the space and time of the dream,  It seemed like the moment one problem seemed resolved, there was another.  The shunt developed a kink, a blood clot was found, even though the heparin had been given.  Her heart stopped and they got it going again.   Over the next five hours they put her on heart lung machine, pacemakers….. I’m not sure what else.  It was quiet and the doctors talked in Bengali,  I was just grateful to be there, but also frozen in re-living the dream.

I was spending most of my time at her head, looking over the drapes, and just resting my hand on her forehead.  There were staff there who wanted me out and tried some ploys I resisted…. but then finally another surgeon insisted I break for lunch, as they had brought lunch to the floor for me.   I dutifully sat in the Doctor’s Lounge and ate the sandwich and pretended I was in a normal situation in a normal life. Once back in the OT  I put my hand on her forehead.  It felt pasty; she was alive but her spirit was no longer there.  I stood there silently screaming to the universe in protest.

I went to the window of the OT and saw the canal, the one I’d seen in my dream.  I took pictures of the canal, and the reflections of my bangles.  I took pictures  and silently went on screaming.   In the dream I’d screamed that my baby was different, so that was enough to me to believe that maybe she was close to death but hadn’t really died.  And that is how it played out over the next 16 hours.

Tuni went to the cardiac unit and we came home around six pm.  About two hours later the anesthesia dept called and said Tuni had arrested, and they were working on her.  Seema and I, and her son rushed off back to the hospital, about 45 minutes away.  In the taxi we talked about the possibility of her death.  In the Hindu tradition, children up to five are buried, not cremated.  We arrived to find that she was now doing better, her heart going on its own.   We came home, and the next call was at 7 am the next morning.  They were working on her again but didn’t think they would be successful.  They said to come in.  Tuni lay there with an ever so slight smile on her face.  I just held her and cried and cried, as I have so often since she died, as I cry now as I write about this.

Holding Tuni after she died

Holding Tuni after she died

The conflict in the dream about where she would be buried played out in reality.  The hospital and everyone else told Seema that the place to go was the burial ground in Topsia.  I can’t explain why, but my baby was NOT going to be buried in Topsia.  I don’t like the area.  I think Seema thought me quite mad, as I kept insisting I’d heard about a Hindu burial ground on the road the girls take to school each day. I was sitting in the car, Tuni’s body in my arms, determined that she was not going to Topsia.  However it was Jojo, Seema’s son who found the Hindu burial ground near us.  I’ve written about it in an earlier post.  The next day, when Shanti Devi came in the morning she talked about the Topsia burial ground, and the wild animals who inhabit and desecrate it.  I just knew….. sometimes I just know.

I miss Tuni terribly.  In the Hindu tradition I’m supposed to let her go, so she can travel unhindered by ties pulling her back.  I’m not doing very well at that.  I pray for her safe journey while I also call for her to be back in my arms.  I tell myself I did everything I could, but I still feel inside I let her down, as I’m sure every parent feels when a child dies.  I had a bit of “reality check” as I was looking through pictures to use for this post.  This one is from the OT.

Tuni in the Operating Theater,

Tuni in the Operating Theatre.

I think I’ve resolved that I did all that I could.  It’s hard to look at that picture and not feel I did what I could, and so did everyone else who tried.

I decided to post my favorite picture of Tuni.

Tuni with her sisters, right at home at Shishur Sevay.

Tuni with her sisters, right at home at Shishur Sevay.

I think about her a lot.  I ponder all the obvious questions about destiny and fate.  She was an incredible light that filled us, all of us who knew her, all of us who got to know about her.  Suravi  Changlani, who interned at Shishur Sevay wrote a beautiful tribute to Tuni.

Suravi's Trubute to Tuni

Suravi’s Trubute to Tuni

Dreams such as this one are not new to me.  When I was delivering babies I would sometimes have dreams about the baby’s condition.   I published an article about my dreams in Mothering Magazine, sometime around 1980.    I once dreamed that I went to the home of a patient of mine in labor and there were three chickens wandering around in the kitchen.  I’d never been in her home.  When I went there later in the day because she had gone into labor, there were three wishbones on the kitchen window sill.  But I’ve also had times of just knowing about things that would happen.

Looking at the pictures for this post, and thinking about the last few days of her life, I think now that the dream came from her.  She needed to tell me.  She needed to let me know, for her sake, for her not to feel so alone as she faced death.  She needed me to be her mother.  She always knew her life would be short.   I’m someone that babies can talk to when I’m asleep and I hear what they are saying and I remember.  She needed a mommy to tell.  Tuni needed me to bury her in a safe place.  Somehow that must have mattered to her.  She let me know.  I listened and did as I was asked.

I’ll close this post with a quote from my report to the Child Welfare Committee,

“Tuni would not have survived without surgery, so she had a chance at life here. We take comfort that this child once tossed away in the bushes found love and family at Shishur Sevay.  While her medical chart in Asansol read “Baby Unknown” her chart at Medica Superspecialty Hospital read “Tuni Harrison.”  She died with a name, with a mother, sisters, aunts, uncles, and with dignity.  May all this help her on her journey back to the Gods.”

Sometimes I just can’t stop crying.  I miss her so much.

Chapa Plant for Our Tuni – The Work of Moving On

Flowering Chapa Planted for Tuni

Flowering Chapa Planted for Tuni

It’s been a week since I bathed in the Ganges.  I’ve been living in two places at once.  I am enclosed in some misty and mystical place with Tuni and memories.  I also attend to our life at Shishur Sevay, with our 14 other children.  It’s a cliche, but Tuni’s death has brought us closer, and if ever the girls and staff doubted my sincerity, I think they understand.

Sunday: I organized pictures of Tuni by date because I want to write the story, or maybe I just needed to organize the pictures.  I wrote a report for the government with pictures and with text… I made copies of her medical papers and the death certificate.   I played with Archi in a tub of water.  I cut the hair of two of the girls.

Monday;  Purba and I took the report to the CWC (Child Welfare Committee).  We then stopped by the home of our  President, Judge S.S. Ganguly (retd.) to bring him up to date on Tuni’s death.  Then we went to the Directorate of Social Welfare to leave a report there, and to hand in our papers for license renewal.

Tuesday:  It rained all night Monday and the roads were flooded by morning.  It was like snow days in the US.  Some staff could make it through, others not.  There is a special cozy feeling to such days.  I cleaned my office.  I really did.  The girls cleaned the metal grilles… grounding work for all of us, and time to be together.

Wednesday:  More rain… school closed until Monday.  I slept a lot.  Things fine here…. we are all recovering.  We talk about Tuni.   In our evening prayers we pray for her safe journey

Thursday:  Met with some people who want to help us raise the funds for an elevator.  Estimates had come in by email that morning. This is exciting

Friday:  I remembered in the night that the men at the burial ground had told us we could bring a plant.  I wasn’t sure exactly where it would go or what it was for, but it was unfinished business.   They wanted a Chapa Plant with fragrant white flowers.  We had planted a small Chapa in 2006 and now it towers over the house.  Bijoy and I went out and bought two plants, about 4 ft high, and a neem tree sapling for our house. Then we drove out to the burial ground where we were warmly received.  We planted the trees in the rain.  It was good.  I’ll write more about this at another time.

Planting a tree is not part of any specific tradition, but I needed to do it.  It was a marker…. a third marker.  The first was her death; the second was that I bathed in the Ganges; the third was that I planted a tree.

Back at home, life was continuing as usual.  I took this picture of Barnani reading to Kalpana and Ganga.

Barnani reading to Kalpana and Ganga from her frvorite story book.

Barnani reading to Kalpana and Ganga from her frvorite story book.

Another haiku from years ago

Practicing winter

Does not blunt the icy shards,

Mother’s heart is pierced.

.

Good night from Shishur Sevay in Panchabatitala, where New Alipore meets Behala in Kolkata, West Bengal, India, South Asia, Planet Earth, The Milky Way Galaxy, in the Universe.

Michelle

A Beautiful Visit From The CWC

A comment posted to my last post, https://shishursevay.com/2013/07/14/cwc-child-welfare-committee-finally-coming-for-inspection/, wrote:

I am a little confused. One minute the CWC folks are confrontational; they want to take you to task for some kind of an infraction, teach you a lesson. The next minute, they want you to help them do their work for which they are paid by the tax-payers. I’ll eagerly wait for the next segment of the story, as will others, I’m sure.

Yes, that’s right.  No, it makes no sense.  That’s just how it is.

From the beginning, I have wanted to work with the government, particularly regarding the institutionalized children. I don’t know why the CWC’s attitude changed.  I do know that currently they are desperate and overwhelmed, and they have always been angry that I wouldn’t take more.

The visit was beautiful.  We did the formal things that are expected.  The girls presented flowers to each guest.  Each did Pranam, the touching of an elder’s feet.   One of the girls presented her embroidery work, framed, and another presented her artwork, also framed and inscribed to the CWC.

Our girl presents her artwork to the Chairwoman

They toured the house and I insisted they see inside of the bathroom.

Bathroom on the Tour

They noticed the fire extinguishers and said they’d not seen them before in a home.  Seema Gupta took them upstairs while the Chairwoman stayed down in my office to talk.  I had put my three published books out on the table and showed them to her.  I told her that clearly I had a lot of help here, but that I carried the full burden, that I have to think about what I can manage.

They had come with an agenda. The Chairwoman said they can offer all sorts of assistance to expand the building, or to build a new home.  But they also have an immediate problem, namely four very young children with disabilities who are in various hospitals in one of the districts that has no functioning  CWC.   The others came downstairs to rejoin us and talked more about the problems they are facing.   They talked of their pain in visiting the children in the institution.  There is a paralysis here… something I noticed years ago.  Some people really do care, but they don’t know what to do.

Table and Talking in the CWC meeting.

Tabla  and Talking in the CWC meeting.  One of the members plays and was thrilled that our girls are learning tabla.

I said I would help.  I said I would take the four children, but that I also then wanted two more without known disabilities.  We have to stay inclusive.  As we were talking, the girls on their own started to dance, and we went to watch them.

The girls on their own started to dance and so we all went to watch.

The Girls Decided to Dance

The CWC hoped Seema and I would come back to the office with them, and review the information on the four children.  I found that two of them are too sick to be cared for in a non-medical facility.  We agreed to take the other two, one an infant with Downs, and another with CP, about 2-3 years old.  Then I reminded them that we will take two little girls with no known disabilities, that we had to remain inclusive.  Right now there are many children in the institution.  Their care is horrible.  I can’t do as much as I want but it was just too painful to say no.  And I do believe we will be expanding.  We have to.

Sometime within the next week, the children will be brought to CWC for us to pick up.

Well, everyone here is excited.  We have many blessings.

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