HEARTS

Tuni will need to have her heart repaired.  She has a congenital heart condition, a variation of a Tetrology of Fallot.  Every medical student learns about it, almost like a rite of passage.  In those days there was only palliative care, surgical procedures to extend life.  Now there is surgery to FIX it!  In time Tuni will have this surgery.  The doctors here prefer to wait until the children are a year old when the survival rate is higher.  If she develops symptoms, like cyanosis, or her development doesn’t progress, then we will have to do it sooner.  For now we just feed her up, keep her happy, and watch.

We have been scouring the few papers that came with her.  I was trying to find out why she was originally admitted to the hospital last April.  I would like to know her weight at the time, and what symptoms presented.  But in looking into the papers, the story we had been told didn’t seem to make sense.  If she was brought in by her family then why was she “unknown baby” from the beginning?  She would have been admitted under a name.  Then we found in the police papers that THEY had been the ones to try to contact the family, including by email.  Or, maybe those are just the standard words used for a baby found somewhere.  I saw this in adoption papers all the time, words about an unmarried young woman abandoning her child… The words were exactly the same in each file.  But for the adoptee the words were specific and personal. Those words became part of their narratives.

If you read my last post, and comments on fb, we tend to create narratives, weaving together a few facts with many speculations.  Was the family poor?  Did they know she had Down’s?  Were they all agreed or was the mother mourning? In fact, we have no idea whatsoever. Maybe we will find out one day.

Earlier this evening I was talking to Tuni, tickling her, making funny faces… She is so responsive, so happy for smiles.  Anyway, I told her I thought she must have a really interesting book to write — about her life… about being here and there, about hospitals, and police, and she just giggled and giggled as if she understood every word.

My heart runneth over.

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Tuni, Archi, and Me

One Baby’s Heart and So Many Questions!

Talking it over with Seema Aunty

Talking it over with Seema Aunty

Tuni is her name, but I added “Harrison” as I do for the kids with disabilities who have no surnames.  Having a chart read, “Baby Tuni” is not as good as “Tuni Harrison.”

Tuni is about seven months and has Down Syndrome.  At about three months of age she was hospitalized in a government hospital about four hours from Kolkata.  I don’t have records of why she was hospitalized, but we were told her family never came back for her and never responded to calls from the hospital.  That district has no facilities for children with disabilities, and was one of the children the Child Welfare Committee pleaded with me to take.  We picked her up last week, on Friday, the 19th of July.  I knew in taking a child with Down there was a possibility she would have other medical problems including heart disease.

Today I took her to Medica Superspecialty Center to see the pediatrician for a check-up and to start whatever investigations were in order.  Tuni was a charmer.  Yes, she has heart disease.  She was seen by the pediatric cardiologist, the same one who saw Ganga in the past.  He did a brief echocardiogram, enough to see that she has a “complicated heart situation.”  Tomorrow I take Tuni back for  a more thorough testing under sedation.  And then we will talk… as the doctor put it.

So much goes through my mind. Is it fixable?  What will it cost?  How will we manage it all?   I dare to even think, should we do it?  And then I get mad at myself for even asking.  I think about her family.  Maybe this is why they abandoned her.  Maybe they couldn’t afford treatment.  Maybe a mother is mourning. Or, maybe it was just the Down Syndrome… but they did put her in the hospital.  I hold no judgments any more.  This is a harsh place with harsh realities.  You don’t take a child to a government hospital unless you have no other alternatives.

This work has changed me too.  I now more easily see the person separate from the illness.  When I hold her and talk to her, I ask her, “What happened to you, Little One?”

Looking worried... with reason.

Looking worried… with reason.

Good night from Kolkata at 12:50 am.  I need to get some sleep before the day begins.  Lots on my mind….

A Vulnerable Boy

Earlier this month I ended up hospitalizing one of the older boys at Aunty’s.  He was  already in a government hospital, refusing to eat, and no one seemed to know what was wrong.  Aunty took him out of that hospital and brought him for me to see, and I sent him to a nursing home where Shanti Devi used to work.  The doctor there is not only respectful of me, but seeks my advice.  I’ve used that home as respite care for girls who have become out of control — a stop short of mental hospitalization, which I’ve also done.   This boy was on anti-psychotics which had been discontinued several months ago. Then there had been staff problems and we presume he was beaten.  It’s what he kept gesturing to us.  When I saw him he was terrified and shaking.

We got him back on his medications, and other than the first night when he screamed all night, he did fine.  But then the question, what to do with him?  Over and over people would say to me, “But he will be beaten if you send him back there,” as if I had any other solutions.

The bill ran up, $12 a day for the bed and $6.00 for the 24 hour aides.  I had a CT scan done to be sure he didn’t have any acute head injury.  It showed only mild abnormalities associated with Schizophrenia.  I’ve been in crisis mode for multiple reasons, including money woes, school enrollments, grants, website development, doctor visits, and all the regular things that go on in a home with 14 children.   But basically I didn’t know what to do.  Then a sore on his foot became infected and swollen so we started him on antibiotics but also did some blood work checking liver and kidney function.  That added a few more days.

We have had occasional times of girls hitting or pinching others, and I deal with it harshly.  Last night after evening prayers we had a meeting and I talked about violence, torture, pinching…. I told them that this is a sad thing that happens in almost most homes.  I talked about the boy in the hospital, whom they have all met, and the problem of what to do with him.   And we talked about how even little things get out of hand.  I think our home is one of the safest places there is for children.    I have friends who beat their children, friends who pinch their children, friends who look away when one sibling hurts another.

I was the Director of a Tufts Day Hospital for mentally ill in Boston and our patients were sometimes beaten up on the street coming to the Center and going home.  We tried to get transportation but the politicians didn’t want to acknowledge the danger so the patients walked the gauntlet to come for care.  You see, Boston, New York, Kolkata, all on the same spectrum of human behavior particularly with respect to cruelty.

I lived part of my childhood on a farm.  My parents were city-dwellers who decided to be farmers.  We were poor; our crops didn’t do well; droughts came and then floods, but I loved that life.  I drove a tractor when I was 12.  I could manage a plow at 14.   I had a horse I rode in competitions of barrel racing and pole bending.  I also tamed horses for other people sometimes.  I kept a blanket roll under my bed so I could jump on my horse and run away from home in the night.  However I was sensible enough to know that a young girl wasn’t going to get very far on horseback in New Jersey.  It was a wonderful fantasy life I had.  One day when I was about thirteen, I was looking out the window to the field where Stormy (the colt) and Twinkle Toes (his mother) were grazing.  Suddenly Stormy playfully came up behind his mother and bit her hard on the rump.  She kicked out at him with both hooves.  Pow! He backed off!  I don’t think he ever bit her again.

Well, it was an epiphany for me, having been raised on Spock, and reason, and guilt, and suddenly I thought, “Wow, her job is to socialize him, and she just did it!  No scolding, no explanation of goodness, no guilt trip, no judgement that he was a bad colt who didn’t appreciate his mother…. No, just a good kick and he learned his lesson.  I believe there are times when this is appropriate.  But here in India, as a white woman raising Indian children, I can’t do it.

Today’s newspaper talked about torture in the schools.  Keeping children from going to the bathroom is replacing caning as corporal punishment is made illegal.  We had that, one of our girls who needed to go to the bathroom and was refused permission and soiled herself — that was in the school that had NO water in the bathrooms, and further humiliated her by telling her in front of others to ask her mother for Rs. 10 for the clean-up.  No mercy in the schools.

Well, back to today and bringing this boy out of the hospital.  To all the people who reminded me he may be beaten, I just asked if they would take him.  You see, I don’t know anyplace I could guarantee his safety.  He is vulnerable and has impairments and whether in a government institution, or NGO home or even in a family, he may not fare well.  The Child Welfare Committee was of no help.  The politicians walked away.   I can’t keep him in a nursing home forever, and nor can I bring him here.

Safe places…. the heart of the matter, so hard to find, to build, to maintain.  So this is part of what has been on my mind a lot.

Kolkata: A Wall of Resistance

To make something happen in Kolkata, you have to look for cracks in the wall, work quickly, and get out before the crack closes.  I’m not talking about the usual corruption, bribes, money under the table.  Those are paths, not cracks, and each has its price and conditions.  The cracks are more about what is not expected, feats of perceived impossibility.  It’s how we got the kids.  We found a crack, and got them before this route was closed again.  But most of the time we are hitting the wall.  When I took eight children by ambulance to the Child Welfare Committee and said they needed care, we were told there are no facilities available, take them back.  We found places for three that day; the others went back.  It was a wall, with no shame.  Walls have no shame.

The following are pictures taken over the past ten years here in Kolkata, where time stands still and the walls get thicker.

Infected scabies infestation of child in a licensed home 2004

Infected scabies of the hand of a different child in a different licensed home 2012

Time stands still.  Conditions at the first home above were reported to the Department of Social Welfare, Department of Education, and the Human Rights Commission as girls there were being severely abused, and were not attending school.  Everything was documented.

In the case of the first picture, I was sponsoring this child at the “orphanage” as it was called.  I was asked to sponsor her as her mother was severely mentally ill and in and out of the hospital.  The grandmother had been taking care of her but found it hard.  What a delightful little girl she was.  I paid Rs. 1200 a month, roughly $25.  When I saw her hand I INSISTED a doctor be called.  The doctor came.  The little girl called him Uncle.  I learned she was actually the child of his servant and he wanted the child out-of-the-way.  The doctor owns a nursing home, a private school, and is a known expert in his field.  I said to him, “So you are a wealthy doctor and I, the foreign lady is supporting the child of your servant?”  He grinned and said yes.  No shame, that’s what I find over and over, no shame.

2006 I visited an adoption orphanage run by people who knew people I knew, and we “stopped by.”  I had already been told that the children were kept tied to their cribs, so I was curious as to whether we would be invited in.  We were invited in, and asked to sit for a while.  I figured they had gone to untie the kids.  But no…

Baby tied to crib, straining to look too.  Sometimes she rocked so hard I worried the crib would go over.

Three point restraint, plus around her waist. Her crib is too small for her to stretch out which I learned when I tried to examine her liver. She was Hepatitis B+ and considered non-adoptable.

And when these children are adopted, and they act strange, no one will know what they have been through, how they have lived, what they have missed.

This home’s license had expired and had not been renewed.  I showed these pictures and others to several government officials.  The home received its license and was scolded for letting me take pictures.  There is no shame.

I tried to buy these children, and I think came close to success.  We were negotiating…. For a long time I kept their pictures with me, kept two spaces for them.  I heard several different stories about their fate, so all I can tell is that I was not being told the truth, because not all the different stories could have been true.

Our children arrived at Shishur Sevay in February 2007 from a government home, with infected scabies, malaria, and bleeding gums.   There were no records of immunizations and none were given during their time in government care.  We immunized them at Shishur Sevay.  I had trouble getting them immunized for polio because most of the girls were over five years.  The doctor said, “Over five even if they get polio it will be mild.”  The government scheme only goes to five years.  I had it done privately.

It’s easy to be a critic, harder to find solutions.  When we started Shishur Sevay we needed a way to contain and protect our little ones — and so I had two “play pens” built.  That’s really the best way to describe them.  And I thought, “This is easy.  Why didn’t they do that instead of tying the children?”  It’s a mindset.  The children were inventory.  It didn’t matter if they were tied up.  In fact, several officials were impressed with the weight of the children.  “Necessary but not sufficient”

Why do I write this when “everyone knows?”  I write because I have hope; I always have hope.  And I write because I cannot be silent about what I see.  I also write to show my credentials for what I am doing here, not the past achievements of my life before India, but the sweat equity I have put into looking for solutions for the unwanted children.  I’ve been at this since 2000.  I’ve been up against that wall over and over, and sometimes I’ve found cracks, more often I’ve not, but each attempt has been a lesson.  I’ve learned to lose battles and come back a different way, a different strategy.  I like to think of myself as a good loser.

I started Shishur Sevay with a fantasy of showing what could be done and then shaming the government into doing something.  But I think the government is more like that wealthy doctor whose servant’s child I supported.  There is no shame.

I know there are others also trying so I write to reach out to them, to find them.  Maybe they will have ideas, and maybe they will be able to do things to make it better for the children. Maybe we will just all weep together at Kolkata’s wall of resistance, or better yet we will all go hunting for the cracks, and putting in wedges to keep them open, and celebrating each time we are successful.

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