The Sign: LOST AND UNCLAIMED BAGGAGE

I stepped out of the old Kolkata airport into the strong musty smell that told me I was home.  Walking to the carpark, I noticed a low bluish building with a huge sign: LOST AND UNCLAIMED BAGGAGE.  I tried to imagine the goods there, luggage forgotten, tags lost; clothes and cheap jewellery left on the plane; contraband goods being smuggled but suddenly not worth being caught — the lost and unclaimed — inventory on the shelves of the blue building across the parking lot at Kolkata’s airport.  What they all had in common was the absence of traceable tags… identification — no origins, no destinations.

There is a taller building about half way between the airport and the city — a government institution that houses children, orphan children.  Many lack tags or identification.  They arrive — some via police, via Childline, via kind people who realized they were lost.  In Kolkata it is the lucky ones who end up in this building because sometimes children are “found” and then sold.

The children of Shishur Sevay came from this government building. Their lack of any known connections resulted in their being excluded from most “orphanages” since there would be no family or community to take them when they reached 18.  Additionally they had each been reviewed and rejected for adoption.  How had they gotten there?  Each had her story.  One had been found lying sick under a train seat.  She was hospitalised with pneumonia, sepsis, meningitis, and suffered a stroke.  Others have stories of being left at a train station or on a corner, but no one ever coming back for them.  They have stories of violence and escapes.

This morning I happened to be looking at an organization which is a federation of groups of parents of children/family members with disabilities.  It’s a national advocacy group. But who are the advocates for the orphans no one will take, especially if they have disabilities?   Early in the history of Shishur Sevay we had a terrible battle with the government. They had made a decision, without notifying us, that they would send five girls who were not orphans.  A major donor had just pulled out of an NGO run home, and one unit had to be closed.  A woman showed up at our gate, unannounced, and said she was here to put her child at Shishur Sevay.  I told her there was a mistake and I went to meet with the government officials.  There I found yet another mother who had been told to bring her daughter to us, and I refused.  The government official asked me what was the difference between our girls and this woman’s daughter.  I turned to the mother and said, “You may not know it but your daughter has a wonderful mother who will fight for her.”   The same government official who four months before had sat at Shishur Sevay rocking one of my brown dolls, and telling me we would get the children, now threatened to bring charges against me for discrimination against children with mothers.  She threatened to close Shishur Sevay and take the children.  I stayed polite and composed and told them they would have to kill me first. It was about a year of tension until we were able to get a renewal and I lived in terror that they would actually try to close us.

Why did I refuse?  Our motherless girls would have immediately become second class citizens to these educated girls with mothers who would advocate for them.  In India, to be an orphan is to carry shame.  “So your family threw you out?”  Orphans come with more shame, histories of unimaginable abuse, and a profound sense of grief and loss. Some live with suicidal fantasies seemingly their only relief from the pain of loss.  They lack trust.  After all if you can’t trust your own family to keep you, why should you ever trust anyone else?

Most orphans are not able to be effective advocates for orphan children.  Few are really educated so their stories are not articulated in ways that are heard.  And they live in shame.  Yes, I have a hope that our girls, if they choose, will be able to speak about the care that is needed.  They are being educated to have the skills to be effective on behalf of themselves and others.  But they are also free to walk away if they choose.  It cannot be another burden for them to bear.

One of a Hundred Stories

Dr. Harrison in 2006

Dr. Harrison in 2006

I have a hundred stories for a hundred lives lived just within this lifetime.  In this story I am the Founder of Childlife Preserve Shishur Sevay, a model of inclusive non-institutional care for orphan girls previously housed in a government institution, having already been rejected for adoption.  Some have severe disabilities.  All carried wounds, some visible, some buried deep within their memories.

This story began when I was 17 years old. I’d written an essay for school about “The Meaning of Life” in which I saw myself acquiring the education and skills to one day care for orphans in need.  I had just seen some pictures of Korean orphans when a friend returned from the war.  Something clicked; something that has lasted a lifetime.

I adopted my Indian daughter from Kolkata in 1984 and raised her in the US. That is my connection to Kolkata, a very personal one.  Kolkata is family. I also have an older daughter to whom I gave birth.  I raised both them as a single parent.  All my stories have twists and turns to them, all 100 of them.

In 2000 I decided we should visit Kolkata.  I had just been through breast cancer and didn’t know how long I would live.  I had also wondered what happens to the children not adopted.  I knew India needed to provide for its orphan children and not just ship them abroad.  When we visited, and in subsequent visits I made, it was clear that mostly these children languished.  I also realized that there was little hope or expectation that anything really could be done for them.  The phrase I kept hearing was, ‘Nothing Can Be Done.”

I sold my house in 2006.  My younger daughter graduated from Barnard College and the older one from New York Law School and I left for India to start Childlife Preserve Shishur Sevay.  The Society received its registration in June 2006.  We received our License in January 2007 and 12 girls were sent to us by Order of the WB Child Welfare Committee for care rehabilitation, four of them with profound disabilities.  I realized quickly that what the children needed most was a “mother” at home checking their homework at night.  I also learned how much they needed each other.  Bonds of genuine love grew between the abled and the children with severe disabilities.  I am mother to them but their strength and security is also in their connections to each other.

Shishur Sevay is not well-known.  I used to refer to us as a stealth orphanage.  Some of that was because I couldn’t stretch myself or our resources any farther, and also because it was hard for me to keep hearing people say it couldn’t be done.  In my relationship with the government I was simply a nice lady from America who liked children.  I shed the titles, roles, privileges of my earlier life.  I also endured death threats and all the other obstacles to creating something good in the face of a culture of mistrust and cynicism.  I needed time to learn about these children.  I understand why people felt nothing could be done, because some of these children are the first to tell you not to bother, that nothing can be done for them. I needed time, time to think, to learn, to try approaches that worked or sometimes didn’t work.  The children needed time, a lot of time, a lot of safety and protection, and a lot of support as they began to risk “trying.”

Ten years later Shishur Sevay is a shining example of what CAN be done.  The girls are thriving.  Two are studying for Class X Boards.  Shishur Sevay is a leader in inclusive living and inclusive education.  We have caught the attention of researchers at Vanderbilt University and have been studied as a unique case of inclusion of abled and differently abled.  We created our own school Ichche Dana Inclusive School, as after six years we gave up on outside schooling for our children.

We are leaders in advanced communication technology.  We were among the first in India to use the Tobii Eye Tracker for our girls with severe cerebral palsy.  They are able now to communicate with us using their eyes to control the computer.   For them and for us this is a profound life changing experience. Our girls are showing what can be done.  We are doing it IN India so that the girls have opportunity without the loss of their homeland, language, culture, heritage and religion.  In the first week I showed them the map of India and began to teach them that they are Indian, that this is their country, and that they belong.  Although I am American and a catalyst, we are strong because of our Indian staff of teachers, caretakers, accountants, administrators, and Board.  Each year we have passed our inspections and the government has thanked us for our efforts.  India gave me the gift of my daughter, who lives happily in the US.  But I am like so many fortunate Indians who want to give back for the gift I have received.

Our infrastructure is strong.  We have received the GuideStar Gold Seal 2017 for transparency of our records, a goal from the beginning.  Our records and processes are open.  We want people to understand what we do and how we do it.

What must be the next part of this story?

  1. Establish lifetime care, inclusive and inter-generational for those who cannot live independently
  2. Establish Shishur Sevay as a model of inclusive care in the spectrum of alternatives to institutionalisation
  3. Conduct training in inclusive living and education in the community and within the professional community
  4. Assist in the creation of other homes based on the model of Shishur Sevay but adapted to the character and needs of the community
  5. Inspire hope and dreams by evoking positive inclusive experiences with the differently abled
  6. Contribute to the building of an Inclusive India

For this, we are no longer stealth, and I am no longer quiet. I am here to tell you what I have learned in raising these abandoned and rejected children.  I will share what they have taught me, what I have learned.  And I will share my adventure of constant growth and emergence.  I’m back.

We are here. We are building an inclusive India

2017: We Are Here. We Are Building An Inclusive India

 

 

 

Fumbling Through Raising Funds

I’m stumbling.  I know what I have to do and I’m not doing very well at it.  So I write, with two purposes in mind: 1. It may help me find my way out of the web I feel around me, and 2. I don’t think that fundamentally I am very different from others, and so when I have trouble solving a problem, I imagine there are others out there struggling with the same things.  I just do it more openly sometimes.  The third of my two reasons is that someone else might have some words to help me though this.

My goal for 2015 was to begin serious fund raising, building the future for Shishur Sevay because my personal funds are being depleted and I have to secure the future of the girls.  I’m guessing that none of you reading this are aware of my serious intentions because I think I’ve basically kept it a secret.

“It makes me feel like a beggar, too much like the lady on the street, body bent slightly forward, with her hand outstretched and cupped, saying, ‘Please, for my children, please.'”

To be honest, this is not all fantasy.  Asking for money leaves me open to a lot of painful comments and opinions, and when that happens it feels terrible and words invade my mind and dig and dig and I struggle for the words to pull me back up. Sometimes I go and sit with the kids, especially the little ones, just enjoying their presence, reminding me why I struggle so hard.  The big girls know something is wrong, but I don’t talk about it.  They have no idea that money is a struggle because I never wanted them to. Shishur Sevay is the only stable place they have lived and I don’t want them worrying, and we are in no way desperate, but it’s the long term that has to be secured. I’d like to build an endowment.  I get a small pension and social security.  When I die, those go.  And people think I don’t worry?  I started Shishur Sevay with a plan to raise about 8 girls to independence and I had the personal funds to do it.  All that changed when I saw the four children with disabilities, in the government institution, that no one would take, Rani, Bornali, Ganga, and Sonali.  I looked at them and said yes. That’s what disability does.  It upends plans.  It hijacks the future, but these children are the heart of Shishur Sevay, the heart of who we are, and they will need care for the rest of their lives, and the cost of the care that keeps them alive and full of joy is enormous, even in India.

The big girls do worry about my age and health. Reassuringly they once told me not to worry, that Andrei Dada (my son-in-law) would take care of them.  Yes, Andrei knows their expectations.  He is on the Board of Shishur Sevay, and he and Heather started Friends of Shishur Sevay a 501 (c)(3) in the US.  Cici’s wife Erica created  the website here and Goutami (Shishur Sevay’s first intern) completes that group of incredibly busy people who do it for the children, and also for me. I know that and I am grateful. Andrei is going to run the NYC Marathon this year and raise money for Shishur Sevay.  The secret is OUT!

It hadn’t all started out that way.  I came here on my own and though my children were proud of what I was doing, they would rather I’d stayed closer to home.  But then they came to visit and fell in love with the children and wanted to take them home with them…. And then Heather and Andrei had kids and now my grandchildren skype with my kids here and Heather tries to explain to her daughter how grandma is mother of all these kids, and mother to her mother…… well, these extended families!

I LOVED giving out money when I was at Johnson & Johnson.  Being a donor was an incredible high.  Fortunately I never took it personally as I was thanked, honored, etc.  Later on when I first came to India, I loved being able to give money and time.  Yes, it’s a high.  So it’s also hard for me to be at that other end.  You see when I was at J&J, everyone took my calls!  But now, raising money?  I get left wondering whether I should call again, or let it go, not wanting to bother people, not wanting to be perceived as a beggar….wondering whether I said something wrong, voice too loud, high, strong, deferential?  I wonder if I treated people that way?  I really don’t think so, but I don’t know how it felt to them.  Oddly, even people I helped often weren’t very nice to me, but that wasn’t what I was there for.  If I improved someone’s life, that was enough.

Two nights ago I was talking with one of the girls about how it felt years ago when we had some terrible battles going on here, with some staff successfully creating barriers between the girls and me.  I said it felt terrible, but I never thought to leave because in a way I won anyway.  I got to feed them, educate them, give them a safe place, and I sure wished it had been different, but they had hopes now, and a future….. and that is true.  I did it and do it because it makes me feel good. As for what happens when I’m gone, I think I put it best in a previous blog from 2011 here

I’m the captain.  The ship has to be seaworthy.  The crew has to be able to take over at any moment.  The Board has to be prepared to give direction to the crew.  All this needs to be in place.  It came to me pretty simply this morning.  I have to leave a seaworthy ship with a seaworthy crew, docked in a safe harbor.  I could not “rest in peace” otherwise.

But back to fund raising and the future.  I’m beginning to feel I have to figure out how to protect myself in all this.  Even as I write I cringe at things that have been said to me.  It’s been personal….  Maybe I need to become “A Beggar in Armour!” When I was with Johnson & Johnson I used to get dressed in the morning in my dark corporate suit, choose a blouse from a variety of whites and off-whites, pick out a suitable Hermes scarf, step into my Ferragamo shoes, put on my expensive make-up so I would look natural, face the mirror and say, ‘They think this is me!”  But that was the time I was in my final skill-building for what I have done since, and now, more than any other time in my life, I’m more me than ever, very strong and very vulnerable and I have to manage those contradictions to secure the future of my children.

I haven’t found an answer but I’ve laid out the landscape of the problem…. or rather the seascape.  Like everyone else, I’m a work in progress.

Michelle at the Helm of the Aquarius

Michelle at the Helm of the Aquarius, circa 1970

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.

OLYMPUS DIGITAL CAMERA

Ganga is here to teach us……

 

 

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