They Never Stop Waiting

They never stop waiting for their mothers to come back.  They cannot be with us because they are always 3 or 7 or 10 years old, sitting on a railway bench, or standing on a street corner.  “My mother told me to wait here until she comes back.”  And so they wait, or they go looking but they will not find her, yet they never stop looking.

Two nights ago, one of our girls left in the evening, in the pouring monsoon rain, thunder and lightning, barefooted, to find her mother.  She climbed a ladder and spread the rusted barbed wire, and was gone.  By midnight Seema Gupta and I were trudging through 2 ft. of water to get to the road, and then to the local police station. We had pulled together her files, written a formal letter for the police, and printed out recent pictures of her.  By 2 am we were back home.  The other girls were devastated and frightened for her.  We didn’t know why she had gone.  We worried especially because she is particularly vulnerable.  We each scanned the day for a hint, for what we might have said that set her off…. I think we each took her leaving personally.

The Officer came to Shishur Sevay at 9 am to search the premises and see how she got out.  He told us we need more cameras outside and a higher boundary wall.  He was worried about someone coming in as much as one of the girls leaving.  He interviewed us all. And he took it all seriously.  Being in our home, he was even more puzzled that she had left.  Few people really understand the children who wait forever.  Ten minutes after he left we got a call from another police station about a girl they had picked up in the night, asking whether she was ours.  She was.  She was safe.  She had given a false name.  She was now housed at the government home, and would be produced the following day at the Child Welfare Committee and we were to appear with all her papers and a copy of the police filing.  Dispositions would be made.  I wasn’t even sure what I wanted.

We all met in the Committee room.  She stood stoically near me and then began to silently cry.  I  asked her why she had run.  She said, “My mother,” and I understood.  For ten years she has drawn the same family picture, and told the same story about being left…. She doesn’t want to leave Shishur Sevay.  She just wants to see her mother, see if she is OK, tell her she is OK.  The children whose mothers have died are freer to move on, and they are not haunted by abandonment, or, “why was I left?”.  Today in the CWC room we also saw an adorable three or four year old who had been found sitting in the train station.  She was waiting.  Her mother told her to wait there and left with a man.  Her mother didn’t come back.  If a woman remarries the new husband usually does not want her children.  It is an ugly custom, and ugly how it happens because the children never stop looking.

A couple of years ago we talked with all the girls about searching, and put bindis on railway stops they remembered. But then they became unsure of what they wanted. They were also afraid of not having the security they have here.  So we put the map away and tomorrow I will take it out again.

Today we went back to the local police station to give them the reports, to withdraw the request, and for them to meet our girl.  She was frightened, but was so warmly received she relaxed.  And then the same Officer got on the phone and made calls to people in the town she remembers.  He will also help us with other searches.   She was also clear with CWC, and today, “My mother is Dr. Michelle Harrison, but I have another mother and I want to find her.  I just want to see her.”

We will try.  Maybe we will find a familiar place.  Maybe starting at the bus station she will recognize a road…. we will walk around.  The police will help us.  We have the support of the CWC now.  I used to tell the girls that one day we will hire a big bus and travel to all the places they remember.

What are my hopes?

  1. To find a place and people who are familiar or known to them or related to them, a place they can find again.
  2.  To know they have our full support in helping them connect with their past.
  3.  To help them sort out what they want and to see it as a long term process in which they may have differing feelings at different times.
  4.  To help them move back and forth in these worlds and to honour their decisions but provide safety and protection at the same time.
  5.  To help them find some peace of mind in weaving together past and present so they can move into the future.

This is the little girl I saw waiting on a corner in 2001.  I’ve never stopped wondering.  I hope she stopped looking.  She is a part of the history of Shishur Sevay.

lost girl 2001

 

I’m Torn Up

I’m torn up. What happens to girls here tears me up and I can’t put it away. I founded this home because I know what it is like, but sometimes it hits me in the face and I’m just torn up.  Over the years we have had two girls who re-connected with their families.  In each case the family found a way to basically sell the girls.  In one case the girl had been sold as a child already.  Getting her back meant they could sell her again.

Yesterday we had a visit from another of the girls who had pushed every possible limit and who we finally simply could not safely manage.  That was four years ago.  For privacy I won’t say much but she is trapped now.  The concept of the “arranged marriage” often involves an unwritten contract between the families, and usually money is part of the arrangement.  Usually it is dowry and the girl’s family pays.  In this case the family could make a case for an educated girl who speaks English and the groom’s family had to pay.  The life she has now is everything she was running away from…. It’s complicated, so complicated.  She hugged us and cried and told her sisters here never to make the same mistake she did.  When she left today I tucked my business card in her blouse, as I have done each time she left as we tried to find solutions for her behavior.

The promise I made to the girls when they came is that they would forever be a part of this family, even if I could not manage them here.  Shishur Sevay is the “mother house,” the place you return to when things are bad.  She came home to her mother house.  She knows she can stay but she had to leave.  The biggest part of the battle is within her.  None of this is about danger.  It’s about who she wants to be, what she wants for her future, and whether she has the strength and courage to wage what would be a family and social upheaval.  Or does she say, “This is my lot,” and give up on her dreams.  That’s the norm……

There really isn’t an in-between.

When we first started Shishur Sevay, and for a long time afterwards, there was huge local resistance to our home.  Many in the community believed I’d come here to make money, that I was raising and educating these girls to be sold for a high price abroad. But now I understand better why they might think that.

Written well past midnight, I’m torn up.

mh

 

 

 

 

 

Raising Ganga – A Middle Chapter

“Raising Ganga” should be a book one day.  This is just a middle chapter.

Today we were driving to Apollo Hospital for Ganga’s check-up, I kept thinking of the harrowing and frightening drive there just eight days earlier, late in the night, as Ganga had thrashed, cried, kicked, yelled, and could not be soothed.  Whatever lingering doubts I still had about having wanted her in the hospital have now disappeared.  Ganga was clearly back with us, with her naughtiness intact.  We had some answers, but even more important, she was better.

I’d intended to post a blog when we brought her home.  I wanted to thank all the people who had written and messaged us on FB, and who sent their wishes, prayers, and told us of crossed fingers and toes.  Ganga loved hearing about their messages.  And I was immensely strengthened by the support.  Well, WordPress disappeared the post after I’d worked on it for seven hours. It’s taken me this long to put it together and add what we have learned.

CPSS-1542_WAs background, Ganga originally came to Shishur Sevay by the West Bengal Child Welfare Committee on 22 February, 2007 along with six other of the girls.  She was said to be 3-4 years old and weighed 7 kg.  She was floppy, unable to use her limbs or lift her head.  We received no medical information or history, other than the name of the hospital she had been prior to the government institution. Posts about her are listed in the Category “Ganga”

Last Wednesday Ganga became incredibly agitated and could not get through any of her classes.  She would be kicking, calling out, thrashing, laughing, crying…. and she was like this more of the day.  She didn’t want to use her eye tracker.  She was just miserable.  A few months ago we had started treatment for absence seizures.    Three years ago the neurologist disagreed even though the EEG showed changes indicative of epilepsy.  It took trips to three hospitals before anyone could sedate her enough for an EEG. Then a few months ago we started with new doctors, and initially she had major reactions to two of the medications, and was not any better.  So a month ago we took her off all meds, slowly, and she was relatively good for three weeks.  She again became miserable and irritable.  Then last Wednesday night we were totally unable to calm her down.  She had been unable to sit through classes, even Bengali class which she loves.   I felt helpless and afraid, knowing it wasn’t so simple to get medical care in the night. I didn’t want to be carrying this alone, and I was afraid I was missing something.

Ganga’s neurologist was out of town, but we were able to arrange for an admission, (we thought) which would mean we could have an EEG the next day.  We have no insurance, and the hospitals are eager to fill beds.  Once there we discovered that the ER team had to do their own evaluation.  After exam and routine blood tests they told us to take her home, that she was just irritable, and come back to OPD the next day.  I argued for her admission, and they said they could keep her for 24 hours but it would be in a general ward and no one could be with her and since she was thrashing about they would have to put her in restraints.   That refrain still haunts me, that they would put her alone, with no one she knew, and no one who could communicate.  So we got ready to leave for home.

Ganga and her Didi in the Emergency Room. Ganga was alternatively angry, frightened, and thrashing about.

Ganga and her Didi in the Emergency Room. Ganga was alternatively angry, frightened, and thrashing about.

Then the ER docs reached the doctor who was supposed to be the admitting doctor.  He told them that she had to be admitted to the PICU for 48 hours and in restraints.  No one could be with her.  No, we couldn’t have a private room.  Again, I said we were leaving.  The doc said, “We can’t let you take her.”  In the US this could be literally translated, so I asked whether he would call the police if I tried to take her out. “No, we won’t but you will have to sign that you are taking her against our advice.”

“I’m signing nothing.  I’m paying my bill and leaving with her.  An hour ago you told me she didn’t belong in the hospital, and now you say the PICU for 48 hours and NOTHING has changed except who you spoke with?”  I asked for the ER bill and then amazingly, they said she could be admitted to a private room and one person could stay with her.  I  lifted her off the bed just to demonstrate my ability.   In the end though, Purnima Massi and I both stayed.  The admitting officer gave us two passes, and we ended up on the Platinum Wing.  I was really worried about the cost, but I put the deposit on my American Express Card, and we were in.

Ganga thrashed in the night. They started an IV and said someone would have to hold her hand all night to make sure she didn’t take it out, AND, to make sure it didn’t bleed on the linens.  By 3 am they started a new anti-epileptic drug IV.  She just kept thrashing and moaning.  I would hold her hand and doze off through the night.  Sometimes she thrashed and called out.  I was grateful we were there.Holding her in the night, making sure she didn't rip out the IV.  There was a couch in the room, and Purnima slept there. By about 5 am we were sleeping and no one really bothered us for a few hours.

Morning rounds had a surprise for us.  The pediatric cardiologist who had evaluated her some years ago at Medica, and who had taken care of Tuni came with the other doctors.  He had been in the labs in the morning and heard someone talking about a patient named Ganga, and he thought it had to be our Ganga.  I was really thrilled to see him and his knowing us changed the atmosphere.  Now they understood about Shishur Sevay and about me.  The doctors all laughed now as i told my stories of how I had challenged the ER docs.  They apologised, and the head doc said, “I’m just sorry it happened to you.”  I said, “Don’t worry. It’s OK.  It’s my karma.”

I think the medication was helpful and Ganga was calmer when she woke in the morning.  Later on Thursday she had the MRI.  I was allowed to go in, and then invited to sit with the docs and watch through the glass and see the images.  Out in the hall they had said I couldn’t and Ganga looked at me fiercely.  I whispered to her, “Don’t worry.  If they insist on no, I’ll squeeze under the door or up over the ceiling and I’ll be there, even if you can’t see me.”  She grinned.  She understoodOn the stretcher about to go into the ambulance between MRI and EEG..   And what I said to the doc was, “I’m really asking you please to let me go in. I’m 72 years old and I’ve decided that having some peace of mind is really important.  I know she will be fine, but I will be at peace if I’m there and I won’t be if I’m sitting in the hall worrying.”

Friday morning she got her “naughty” back.  The nurse came in while I had her up sitting on the bed.  The nurse put the thermometer under Ganga’s arm, and turned away.  Ganga immediately raised her hand, watched the thermometer fall, and grinned. She had her naughty self back.

By now we felt there was nothing acute going on and it was time to try and talk with her by Tobii (her eye tracker device).  Purba came early with Ganga’s Didi, and they set up the Tobii.  Ganga usually prefers I not be involved.  She wants to talk to others.  So first on Tobii she chose all the people she wanted to come and visit.  She did NOT want to go home but definitely wanted everyone to visit her in the hospital.  The message bar at the top of the screen shows thumbnails of all the people she had chosen to come and visit.

2015-06-12 10.21.00_W

2015-06-12 10.30.58_W

And then the doctors came on rounds while she was on Tobii, and so she spoke with them.  She asked, “Where do you live?”

2015-06-12 10.41.15_W     2015-06-12 10.41.37_W

She next asked, “What do you do? “The doctor explained his work taking care of children.  It took him a while to understand she wanted to give him her hand, but he finally got it.  She is a patient teacher.

2015-06-12 10.43.18_W   2015-06-12 10.43.20_W

When she then said, “Come again,” he laughed and said he thought it was time for him to leave.  What he said about her was that it wasn’t that Ganga wasn’t ready for the world, but that WE are not ready for Ganga.  He said she would have to teach us and I said, “that’s why she is here.”  He seemed startled and I just said, “Yup.”

We used Tobii much of the day, simply used the time  as a teaching opportunity.

2015-06-12 13.51.54_W  2015-06-12 13.52.09_W

Most of the time Ganga seemed fine, but sometimes she was just miserable.  I have some thoughts about it all.

The MRI was essentially unchanged from three years ago.  For the EEG we only have a preliminary report that there were no spikes, unlike the one three years ago.  That’s good, if true, but even more important it means there is nothing neurologically major going on right now, and that is a huge relief.

They would have preferred we stay til Saturday morning, but I really wanted to get back to Shishur Sevay.  She had started the oral medication and was doing fine with it.   I wanted us home, in bed, waking up for Saturday morning Dance & Movement. We reached home by midnight.

A week later I’m even more certain about my thoughts.

1.  Since starting the medication she has had no staring spells or fearful looking at the distance.   So I think she was having absence seizures and this is the right medicine for her.

2. I’m certain she has Pseudobulbar Affect:  PBA is a neurologic condition characterized by uncontrollable, disruptive laughing and/or crying outbursts that are often contrary or exaggerated to the patient’s inner mood state.   Ganga still has bouts of uncontrollable laughing or crying, or a mixture.  Rani bit her hand and she started laughing and then crying and laughing, and couldn’t stop.   This has gotten worse over the past two years, but I’ve not been able to get the attention of the doctors on this.  Now I have their attention.  There is a relatively new medication, Neudexta, cleared by the FDA, and available in India.   PBA was part of what was going on last Wednesday.  We will begin treatment for this.

3. Ganga has often spoken up when girls have talked about finding their families.  She has insisted on joining the conversation, and what we can understand, she does remember her time before Shishur Sevay and she does want some sort of contact.   When she came, she would become really animated at the sight of any old people in white, reach out to talk to them, and puzzled when they didn’t seem to know her.  Records show she was in a hospital in Digha before transfer to the Government institution, and then to us.  When we were on vacation at Mondarmani Beach, we also went to Digha for a few hours.  She didn’t want to go, cried, pitched her body backwards.  We just thought she didn’t want to leave the beach.  When we finally left Digha, we realized we had been sitting along the water in front of the hospital where she had been that we put it all together.  Some records should be here in Kolkata but we have not yet been able to get them.  It will be a long process of trying to get the government to release the records, but we have to do that.  Searching for Ganga’s roots will certainly be another Chapter of “Raising Ganga.”

This has been a time of a lot of adoption talk, with Judi Kloper here, and then Reshma McClintock, an Indian adoptee with her film crew as she returned to Kolkata as an adult.  We don’t know what Ganga heard, or what she heard other people saying about them, or about adoption.  Both these issues, her past, and a lot of adoption/birth family talk may be why she is suddenly far more clinging and dependent on me.  We need to set up some Tobii pages for this.  This week all the girls talked about the areas they were found, and one remembered the village she was from.  It’s only taken eight years.  We will be putting up a map of West Bengal with markers from where each has come.  Ganga’s will be Digha.

5. Ganga is not at all at peace with her limitations.  She wants to talk and she wants to walk.  She is angry.  Last week she insisted on walking out the gate (she yelled at the guard to open the gate) and went in the lane and “chatted” with some of the local women.  I have video of it all.  All it needs is editing (and time).  Maybe we can skype with kids who have CP.  She wants a social life.  When she wanted to go to South City Mall, and we took her, she spent the time talking to sales people.  She looked at clothes but didn’t want to buy anything.  She misses school.  I can’t get her into any school here, but we have to find a way to create a better life for her here.  I hope one day to be able to create opportunities for her in the US, or Australia, or Germany, or elsewhere accessible, and more welcoming of people with disabilities.  I say this with sadness, including for the Indians who are equally upset with what goes on here.  Ganga is moving into the preteen years so we are dealing with hormonal changes.   When she was in school she always had a group of girls and boys who looked for her, talked with her, missed her when she wasn’t there.  Ganga wants to get married one day.  She wants a life like others.  In a staff meeting this week we talked about trying to pull together some kids just to take them to the mall once a week.

6. Ganga is a tense and stressed person.  She worries about tests, performance of any sort, and we need to find ways of her relaxing.  Her first real episodes of the PBA and absence seizures were when she was in school and had exams.  She needs to chill, but as we all know, that’s not so easy to do.  We have people coming to volunteer who do yoga and storytelling and I hope that will help her.

Looking back, I was afraid I was missing something medically.  I was just plain afraid.  As I write this, I realize how much I needed respite from sole responsibility for what was going on with her.  I needed to feel that help was a call button away.  And I needed to be able to focus on Ganga completely.    So I guess Ganga and I are both better.  We have some answers, and plans on how we approach her needs, and I have gotten some relief.

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Ganga is here to teach us……

 

 

A Tsunami of Loss

“You are so lucky!!!!”

A Tsunami of Loss
A Tsunami of Loss

It’s a refrain heard almost universally by children who have been adopted, and also by my orphan children here at Shishur Sevay.  “You are so lucky.  You have such a good life!”  In truth the girls would easily give it all up to have their families back.

At some point in the lives of each of these children, every person they knew, every thing they knew, and every place they knew were all gone.  Strangers replaced relatives; institutions replaced homes or tents in the fields, or a corner of the rail station where they had lived.  I’ve watched them grieve. I’ve watched them not wanting to eat because they didn’t know if their siblings were hungry. Sometimes they were more like mothers who had lost their children than children who had lost their mothers.

At Shishur Sevay they soothe each other and thus also themselves.  The bonding and love between them is powerful. I’d had a dream one night during the time we were waiting for our license.

I was sitting near a pond.  It was a quiet place and I was feeling at peace.  Then the words came to me, “It’s a place where a girl can bring her little sister too.”  

One of the girls desperately missed her little sister and brother.  I promised her that if we ever found them, they could join us.  We can’t take boys, by law, but I said we would find a place for him right nearby and he would come and spend his days with us.  When we eventually found her family, we learned that the little boy had disappeared 2 years before.  Her sister was not there either, though the relatives tried to convince her that another child was her sister.   They kept plying her with answers to questions and our girl kept insisting this was not her sister.  These are not lucky children.

Yes, I understand what some people mean that they were lucky to find me, as I was lucky to find them, but it has an entirely different meaning to the orphan child, to the adoptee.  It is not a lucky thing to be born with this destiny ahead of you.  It’s not something we would wish on any of our children.  It’s a loss that they carry forever,  a hole in their pasts filled with questions that cannot be answered and longing that cannot be fulfilled.

It was and is a tsunami of loss.

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