Since the below post was written, I’m still waiting for the experience of the transition to Mumbai from Bangalore to be wrapped up for me with a sweet bow in the orange, white and green of the Indian flag. But it’s still a moving thing, sometimes light and bright, other times slimy and gray. When I think I have it pinned down, it slinks away from definition and is both this and that all at the same time. Lovely and horrid. To Dan’s chagrin I often refer to my new city as the ‘7th circle of Hell,’ but a bit lovingly since it’s also a place of morning yoga surrounded by hidden pockets of nature and some kind new friends. It’s as undefinable as the rest of my time in India has been. 

While the first blog post is one peek into a newbie’s first weeks here and is on the darker side, the pictures show a happy and whirlwind first 6 months. 

In the midst of the chaos of just living these past few months, writing about the transition fell by the wayside (Wayside? Is it just me or am I embracing more of the Queen’s English?). Although we left Bangalore over a month ago, we have only been in this city about two weeks thus far, having gone to the US for Christmas. It seems like I have been preparing emotionally and physically for the move since June. The sorting and the planning and the goodbyes. And the promises to visit, but knowing that may never happen. And now we start over.

In Mumbai.

The kids are doing okay. Today as I write this we have 3 children over for playdates. Each of my kids has a playmate. The house is actually quiet since each child is engaged. Masan greeted her friend by saying to a girl she just met, “I can’t play with you right now. I have work to do. I’m so stressed out,” and crying hysterically. I am basically forcing her to come play with this kid, and to “not be that weird kid that cries on playdates.” Yikes, I may have actually said that. Fortunately, the dad who dropped 2 of his kids off has 3 children and understood the drama, saying they have a first born too. We designated one bedroom as the playroom and last weekend moved our bedroom to the other side of the house away from the kitchen and the kids’ rooms to get a bit of peace from the kids and the chatty live-in helper who loves to pop into our room to ask a ‘quick question’ or muse on something about one of the kids at least 15 times an hour.

Dan is doing alright.

I am….well…managing. I like change, I do. It encourages trying to get comfortable with the in-between; the not knowing yet; the still being new. Manifested as the awkward conversations with strangers who will maybe one day be friends, the not knowing what people are talking about when they mention a part of town or restaurant, the “oh shit” moments when you’ve forgotten about after school activity sign up because you are overwhelmed and adjusting and now soccer is full and the kids will end up having to take basket weaving or whatever is left.

I think I am becoming a bit paranoid. There seems to be some underlying Margaret Atwood-esque dystopian expat plot going on. A bit Stepford-wifey. This was extremely apparent in my first pilates class held yesterday morning after the kids and husband were kissed and packed off to school and work respectively. A room full of ‘trailing spouses’ (such an unfortunate term used for those of us willing to drop everything for the good of the family) with manis to match their pedis, tightening, lifting and grunting like me, desperately fighting the normal course of gravity and nature diligently. With legs toned and abdomens just a bit too puffy. This was probably happening in little pockets all over Mumbai. The trailing spouses building endorphins before their salad and alcohol infused lunches downtown with friends. Were we doing all this sweating and firming in the name of keeping us happy and healthy, but consciously unbeknownst to us, really in the service of our spouses? So that they can do the ‘important work’ they need to do? Keep the trailing spouses happy and the worker bees will produce. They don’t say happy wife, happy life for nothing.

Sitting in the car today, I had one of those “oh shit” moments, and it occurred to me like a slap in the face that I may be over my head this time. Most of the time I have some kind of handle on we are doing in Munnekollal (migrant blue tent community), or if not some kind of handle, at least some level of certainty that what we are doing won’t be harmful to anyone, including ourselves.

But today was different. It started off being a quick trip to Munnekollal to pick up 5 sick children and their mothers along with 3 pregnant women for a visit to Apollo Clinic. But this work being what it is, you never know what is awaiting you once you step into the waste management site AKA migrant community. What was a crisis yesterday does not seem like that big of a deal once you see today’s heartbreak, pain, and trauma.

Wednesday we met Kajal, age 17, who has an 11 month old baby girl (she thinks that’s how old she is) and a 2 year old boy, who is pregnant with her third child. She doesn’t know how she got pregnant. She sorts trash for a living, and the babies’ playground is the trash mom sorts through to earn a few rupees to keep the family fed. According to the elderly neighbor who looks out for Kajal, her husband is mentally unstable, burned himself, and is MIA. She is on her own. As far as we can tell, Kajal has never been to the doctor for herself or her children. But once we met Maina today, Kajal’s life seemed fairly stable.

While getting 5 children, their mothers and 3 pregnant ladies in the cars to take to the hospital, Raj, my driver who has become on of our most helpful and consistent volunteers, was approached by Maina’s mother. Maina, a woman probably around 20 years old was in severe pain. Her leg was swollen to three times it’s normal size, she was moaning, and her cries sounded a lot like the desperation of an animal with its paw caugh

t in one of those metal traps. We didn’t know what was going on, but it was clear that this woman needed immediate medical attention. But how to get her from her home to the car when she couldn’t walk? Fortunately, her father had a bicycle and a cart. Maina slowly, and in great pain, loaded herself into the cart, and we pushed it over mountains of another person’s treasures to the waiting Innova.

Unfortunately, Apollo Clinic wouldn’t be able to treat Maina. They don’t handle severe emergencies. The best option seemed to be the ER at VIMS, a private hospital on the way to Apollo. As we headed there with Maina, Kajal, her two children, and a car full of the other kids and mothers following behind, I asked Urvi to ask Maina’s mom in Hindi about her medical issues. Her mom handed me a bunch of medical documents, including x-rays of her lungs. She said that Maina’s TB was so bad that it attacked her body, and she had to have implants put in from her knee to her hip two years ago. Apparently for the past few days her leg had been infected. At this point I wasn’t able to fully focus on what I was hearing since a woman with potentially active TB was in the back of our car with a pregnant woman and her 2 babies, who were definitely not vaccinated, breathing the same air!!!! We found a mask in the car and asked her to put it on, I rolled down the windows, prayed we’d all be okay, and let the panic settle in. When I woke up this morning, it never would have occurred to me that I could put myself and others in such a potentially dangerous situation. What we are good at is responding immediately to crises in the community, but this can also be potentially dangerous, like today, when we don’t have all of the information that we need. Fortunately, most of the time, the cases aren’t this severe or at least aren’t potentially dangerous to us.

To continue Maina’s story, at VIMS we pulled up to the ER, and two men with a dirty stretcher with no guard rails let her load herself onto it, and slowly wheeled her up the ramp to the tiny ER. The doctors there said they would examine her and get in touch with us to let us know what she needed. We had to continue on with the other 8 individuals to their Apollo appointments, and would circle back once we were finished. While in traffic on our way to Apollo, the VIMS doctor called to tell us about Maina’s condition. He said that she would probably die. She needed the implants removed surgically as they were severely infected, would need 4 weeks of antibiotics and surgery again to have new implants put back in, or, if the infection had spread too much, would need an amputation of both of her legs. The doctor said that the infection may have spread to her bloodstream, and that if that was the case, she would have multiple organ failure, and die. The cost to treat her at VIMS would be about $10,000. As much as we would have liked to have her treated at a private hospital, that price tag was so far out of our budget, not even a campaign on Ketto could save us. VIMS agreed to get an ambulance to take her to a much more affordable government hospital, which is located in downtown Bangalore, about 2.5 hours away. On Friday night with 3 kids home and rush hour traffic it’s just too far for me to go tonight. But without us there to support the family, the doctors will not give a poor, dying woman from the slum the attention she needs. The best I can do at this point is promise Maina’s mom that I will talk with the doctors, once she is actually examined by one, to be an advocate. But it’s not enough, I know.

A Bangalore friend recently asked me if my blog is up to date. I told her it wasn’t and have been feeling very guilty about that fact since. I used to be so good about writing about every little thing that happened in my not-so-new city of Bangalore. I loved writing to both process thoughts and feelings about what this experience is like, and to also have a record of this insane adventure.

I do have a good excuse for not writing as diligently as previously. Trying to start an NGO or Trust or whatever it is that we are trying to start is time consuming. And it’s not even the trying to turn it into something official that devours my time because that’s last on our to-do list, but it’s the relentlessness of the needs we are trying to address. Our focus is just on 2 issues—health and nutrition of migrant kids 0-6. That’s it. And yet, every minute of every day finds us busy connecting with NGO’s, running families to the hospital, updating our work on very active Facebook page, creating fundraising campaigns for surgeries or blanket collections, etc. Everything we do is listed at www.facebook.com/linksformigrantchildren, and of course you can tell I’m the one who writes the posts since they are anything but short and sweet, and I won’t repeat them all here.

In thinking back to the dual purposes of my blog, I realized that a record of my experience in Bangalore would be significantly incomplete without spending at least a bit more time writing about the work we have been trying to do for the past 2 years, as part of Links for Education in the past and presently through Links for Migrant Children. And rather than write about all the roadblocks and all the times we have heard “no” (but in a round-about way because in India no one comes right out and says no; they just never call you back) and all the initiatives that have failed, and the relationships that have broken down, and when people have failed to do what they committed to do, and the government has asked us for money or kicked us out of their offices, I want to focus on 2 really great things that have happened recently. Because things don’t always go according to plan. Because things NEVER really go anywhere close to plan. And because God has heard the kiddos in these poorest communities.

The Toilet:

As I wrote about in a previous blog post, during monsoon season last year because of the heavy rains and rerouted water exit routes, many of the homes in Ambedkar Nagar, the community Urvi and I were working in were destroyed. We fundraised, and many of my friends and family back home (Nicole, Lara, Mom and Dad) generously donated money for rebuilding. Unfortunately, rebuilding never happened for a variety of reasons, but mainly because we know nothing about building, we didn’t raise enough money to completely rebuild the 14 homes that were damaged or destroyed, no NGO or governental agency would touch this project with a 10 foot pole, the land was disputed to either be defense land or private land, and the community was fighting with each other over how much help each of them should receive from us, many of whom hadn’t lost infrastructure in the flood but wanted to get in on some free shit. After lots of deliberation, we decided the best route would be to give the community anganwadi/preschool a toilet, like we had been trying to persuade the local government to do before the flood happened and they refused to take our phone calls. With a toilet inside of the school the children wouldn’t have to use the flooded, trash filled field across the dirt road from the school. They would no longer be potential targets of child abuse or leering from the men in the community.

After lots of internet searching and talking to everyone we know, we connected with Sochara, an NGO who builds toilets. Perfect! Now all we had to do was figure out the logistics. Sochara does not do the building themselves, nor do they pay for the toilet. We had to hire a mason and use the money donated earlier for flood rebuilding to pay for the toilet. What Sochara does do is educate communities on how to build low-cost toilets, and help oversee the project. So we asked the Ambedkar Nagar community who would be interested in learning how to build a toilet, and their response floored me, although by now I should be very familiar with how India works. They said that Modi, yes, him, the Prime Minister, announced that the government would be building a toilet in every home in India, so they were going to wait until he did that. Yup.

So we decided to start the building project inside the school while the rest of the neighborhood waited for Modi to show up. The thing about the poorest in India is that they have blind faith in a government who could not care less about them. My guess at why is that if they started to question the government there would have to be blood in the streets for all that it’s taken from its people. Anyway, back to the toilet, the mason we hired from the community bought the supplies because if I did, the price would end up being double. Being white can be a help or a hinderance in this kind of work, and when trying to get a good deal it’s always a hinderance. Because of the recent rain, the sand, bricks, and cement were left on the porch of the anganwadi under a blue tarp, which could be seen from the busy road which passes by the slum. The local government must have seen the building materials and approached Baghya, the teacher, telling her that there was no need for us to build the toilet because they would come back tomorrow to build it themselves outside of the school for everyone to use (it is some kind of law that toilets must be built in government schools, which the anganwadi is, but when we met with BBMP over and over again to ask them to do so, they brushed us off). The following day Baghya waited until midnight for the local government to show up, but they never did. The next day work on the toilet was started. And a week later it was finished. There were a few hiccups along the way, like the fact that the person from Sochara went on vacation during the building portion of the project and we had to project manage it ourselves, and the fact that we asked for a Western toilet because that’s what Baghya wanted the kids to get used to using, and Sanjeev, the mason installed an Indian one. And the fact that Sanjeev was supposed to dig 2 large pits for waste, and only dug one, refusing to do the other one because he was out of room, and the fact that for 3 days there was a large hole in the ground filling up with rain water next to where kids play that any of them at any time could have fallen into and drown. I had to bribe him with extra cash to finish and cover the pit before a child died. Oh, and the fact that his masonry labor charges were almost equivalent to the building materials for the toilet. We were definitely ripped off, but the project was done! And done fairly well!

The heart

Mariyam is a 2 toddler from Munnekollal migrant community with Tetralogy of Fallot. Her parents were very proactive about her care and asked us for help. They had been to Sai Baba, a free hospital that does free heart surgeries, but they told her to come back in 2 years for reassessment. For parents of a child whose lips are blue and can’t run, play or breathe, that wasn’t good enough. They asked us to intervene, and we took the family to Jaydeva Hospital, which is the same place we took Nane, for a second opinion. Their doctors said that Mariyam needed the surgery and the date was set for mid-June. We set up a Ketto fundraiser since we don’t have our FCRA license to collect foreign funds ourselves. Through everyone’s generosity we raised over 1 lakh (about $1500) for Mariyam, her surgery, and after surgery care. Not only did the money come in, but Mariyam had the surgery and it was successful! 3 days after the surgery, she was up and about, and actually running around like any other toddler. Her parents couldn’t believe it. It was almost seamless! Except for the fact that her parents didn’t want to stay in the hostel we found for them to recover in and brought her back to Munnekollal, the waste management site they live in, before she was completely healed and the top of her incision opened up, and they wouldn’t take her to the hospital because of Eid, the Muslim festival at the end of Ramadan. But she is alive and well!

When things don’t go as planned in this type of international development work, and again, they rarely do, it’s so important to think about Mariyam and the toilet. Good things can happen. The work can pay off. It may take 2 years to get a toilet built, and you may get ripped off in the process, but it’s built. And the stitches may come a bit undone, but the child can breathe and run!

Below is a link to FB for the latest happenings in Bangalore, India. Thanks for being interested! http://www.facebook.com/linksformigrantchildren.

Also working on a website for Links for Migrant Children which is almost finished.

XO

This article is a bit old, but I wanted to share. It was published in the March 2018 OWC Rangoli magazine, but mistakenly by the new editor, under a friend’s byline instead of mine. My first article published and under someone else’s name. Hilarious, and typical.

Probably like most families with young children who celebrate Christmas, ours was VERY excited about it this year. We were busy gearing up for the holiday season months and months before December 25th. Our 3 girls spent hours on Amazon excitedly choosing gifts that they wanted Santa or grandparents back home in the US to bring them. The 8-year old chose a Lego treehouse set, the 6-year old wanted the Lego Elves dragon building set, and the 3-year old asked for make-up, “real make up, Mommy!” My husband retrieved the 6-foot tall Christmas tree from storage, and set it up the day after Thanksgiving, which in the US is the absolute earliest one can set up the Christmas tree (the unwritten Christmas tree rule). At church the 8-year old played Mary and the 6-year old played a shepherd in the church’s Christmas performance. And for several months prior to Christmas, I was busy collecting beautiful Indian handmade treats to take to friends and family back home since this was our first trip back to the US in over a year and a half: Block printed and silk-screened scarves, anuLIFE mobile phone pouches and reusable grocery bags, Christmas tree ornaments from Jaipur, auto rickshaw ornaments from Pondicherry, bangles made by our nanny, and kids’ silk kurtas and elaborately embroidered lehengas from Fabindia.

In the midst of all this decking the halls and joyful frenzied holiday preparation the OWC’s annual Holiday Gift Drive took place. This annual drive provided the opportunity for OWC members and friends to spread holiday cheer in the form of a small gift to the charities we support. Although not all of our charities celebrate Christmas, all appreciate the thought and generosity of a holiday present. Of course, we would love to be able to provide a gift for each person in each and every one of our 20 OWC supposed charities, however, it’s just not possible, and so each year the OWC Charities Committee chooses 2 or 3 charities to purchase gifts for. In years past the gifts have ranged from sweaters and pencil cases to sports equipment chocolates, and the charities which receive gifts are chosen based on a rotation. This year’s chosen charities were SKID and Helpline, both of which do amazingly important and selfless work for Bangalore’s neediest children, and who loves a holiday gift more than a child? SKID runs a school for 150 children with hearing impairments, and Helpline is a group home for children who are orphaned, abandoned or abused.

The charities were asked what their children would like as gifts this year because we know from experience with our own kids that what we think they want isn’t always what they actually want. SKID requested 150 books with 5000 English words with pictures, and the kids at Helpline chose watches, books about Bruce Lee, Jacky Chan, and other heroes, coloring books, and puzzles. To purchase 200 gifts plus chocolate bars and wrapping materials, we needed to collect about 80,000 rupees, which was a seemingly daunting task. However, the OWC members and friends truly came through to share the holiday spirit and the generosity of the season with the children. Money was collected in several different ways: at Coffee Mornings by OWC Charities Members diligently and persistently ‘shaking their tins,’ through an on-line store, at the OWC’s annual Christmas Bazaar, during OWC road trips, and from neighbors during Halloween trick or treating. We even put flyers in 400 neighbors’ mailboxes throughout Adarsh Palm Retreat. The 6-week long drive finished 2 weeks early because we reached our goal through the generosity of the membership.

The next step was to purchase all of these presents, and wrap them up. Since Amazon.in limits the number of products one can purchase, we contacted the publisher directly who was able to give us a 20% discount on the 150 books for SKID. For the children of Helpline, it was a bit trickier as each child requested a different item. Fortunately, through the efforts of our very detail-oriented Charities Committee members we were able to get the gifts bought. Chocolate bars for the top of each gift were donated by an OWC member, so we were able to utilize as much as we could of the donated funds on the actual gifts themselves.

And then came the wrapping party, which was held at Adarsh Palm Retreat, Villa 12. About 10 OWC members stopped by to lend their wrapping talents to this great cause. Each present was lovingly wrapped in shimmery paper, topped with a festive bow, a chocolate bar, and a gift tag while we sipped mimosas. The 200 presents were wrapped in under 3 hours thanks to everyone’s help. With holiday music playing in the background, gifts and shimmery wrapping materials strewn all over the house, and the Christmas tree in the corner blinking its colored lights, it truly felt like Christmas, even though it was 27 degrees outside with no chance of snow.

With the presents wrapped, the OWC Charities Committee liaisons for SKID and Helpline—Susan, Sumi and I—delivered them to the charities. Helpline wanted to hand out the gifts around Christmas day, which unfortunately meant that we were not able to give them out ourselves since we will be back in our home countries. However, SKID allowed Susan, Sumi and Susan’s cute son to play Santa’s helpers and hand out the gifts. The letter we received from Ms. Jessy Samuel, Principal of SKID summed up much better than I can what this year’s Holiday Gift Drive meant to the children of SKID:

“Thank you very much for arranging the Christmas gifts for all our students through OWC charities. It was so touching to see your BIG LITTLE HELPER Evren carrying the heavy books in his little strong arms, giving them away to the children and helping you and Ms. Sumi to give away the books. Our students were so happy and excited to receive this book and we are sure that this book will help them to increase their vocabulary and language. Our sincere thanks to OWC for this gift-drive and thanks to Ms. Sumi too.”

A huge thank you to all of the fabulous OWC members and friends for making this holiday season a very special one for 2 of our charities. Because of you, the spirit of the holiday season was felt by some very deserving kids in Bangalore. Want to volunteer with one of our charities or for the OWC Charities Committee? Email charities@owcbangalore.com.

I’ll save you the suspense and say up front that no, it’s not. Supposedly we have an emergency number, but no one really knows what it is. Sometimes it’s listed as 108, other times 102. And what does calling it really do anyway? From what I can tell, there really aren’t any emergency protocols or procedures here in Bangalore. At all. Whatsoever. Some of you may recall the 2 electrical fires at Villa 12 back at the beginning of our Bangalore tour. I had no idea what to do. I didn’t know the emergency number to call for the fire department or even if there was a fire department. My elementary school fire training taught me to get all the kids out of the house, but in terms of getting help, I didn’t have a clue. And over 1.5 years later, when Evie had a bloody pool accident last week I had the same helpless feeling.

What happened was this: Last week when the gals were with their sitter at the clubhouse I was reveling in the alone time afforded by my weekly massage, as you do when they cost $15 US. Just when the relaxation was settling in I received 3 calls from my neighbor, Urvi and 2 from my sitter. Because I don’t get reception in my bedroom I wasn’t able to hear what they were saying, and being that I was in deep in a massage coma, I didn’t get up to go to the hallway where I do get reception until through WhatsApp Urvi conveyed that there was an emergency and Evie was hurt at the pool. I leaped up and threw on clothing. The clubhouse is 10 minutes away by foot, we no longer have a driver or car, and I don’t have a bike, so Suma, the masseuse sped me there on her 2-wheeler AKA moped, ignoring all security whistle warnings to adhere to the speed limit. I ran into the pool area where there were no less than 20 people standing around Evie whose chin was bleeding. She had some orange medicine on the wound, which I am assuming was some kind of iodine, so I guess there actually was a first aid kit available. Instead of holding pressure on the gaping wound, Thamil, who is actually a trained nurse but makes more money working for us (we are working on finding her a proper nursing job) was trying to explain to me what happened. I kept asking her to put pressure on the wound and she kept talking. So I grabbed the cotton swap and held pressure on the wound myself, helping Evie to her feet and making our way through the gathered crowd. Meanwhile, Urvi was busy asking the clubhouse managers to call a car to take us to the hospital, but apparently, the 2 cars which they have at the clubhouse leave for the day at 6pm, when all the kids’ classes start. At that point Urvi, who had called a neighbor to ask if we could borrow her car said that there was so much rush hour traffic on the office park road leading to the main road that it would take us over 45 minutes to go the 2 km to get to Columbia Asia Hospital, and that she herself was stuck in traffic. At that point Dan showed up at the clubhouse, and Urvi convinced a woman in her workout gear heading to the gym to loan us her driver and car to take us to the small clinic at EcoWorld, Dan’s office park.

We arrived at the clinic, and were immediately taken back to see the one doctor on duty. My New Yorker self asked if there was a plastic surgeon on duty since this is not my first kid face wound, and we don’t want to mess with Evie’s money maker. Of course there wasn’t one. The doctor told us that he could give Evie a tetanus shot, but that if we wanted stitches we needed to take her to anther hospital. (Not sure why she needed tetanus when she injured herself on the side of the pool and she is up to date with her shots, but I’m trying to not question every little thing). Realizing that we didn’t have a car to take us to another hospital, and the rush hour traffic was ridiculous my brilliant husband remembered that he had seen an ambulance in the clinic garage, and for 3,000 rupees (about $50), it could be ours complete with siren and EMT. Dan sat in the front seat with a seatbelt and Evie and I sat on the small seat in the very back without them, and I held onto her for dear life while we flew up in the air with every bump and pothole on the road, and I could see clearly out the back at all of the near misses with auto rickshaws, mopeds and cars. In case you haven’t been in an ambulance in India before, it looks like this—a van with a cot, blanket and pillow, and no medial equipment or medicine in site. When I asked the EMT where the emergency response stuff was he pointed under the cot. I can’t imagine how much time it would take to get it all out and set up in the case of a real emergency, but he may have had a plan.

Once we arrived at Columbia Asia we were seen by the ER doctor. I again asked for a plastic surgeon, and they actually had one! He was called at home to come in. Okay, good start. The ER doctor told us that the plastic surgeon would want to put Evie to sleep with general anesthesia to do the stitches because she is six and might wiggle during the procedure. I questioned this, but Dan piped in to say, “Whatever you think is fine, Doctor.” So we were going to go forward with the overkill of general anesthesia for stitches, until we spoke with the anesthesiologist and were told that we could begin the procedure at 11pm that night since Evie had a small snack before swimming, would have to spend the night, and would be discharged in the morning, the same day as the ‘bandh’ AKA strike in Bangalore over water where no vehicles are permitted to be on the road for fear of getting set on fire or having tires slashed. So that wasn’t going to work. We quickly changed plans, and convinced Evie that if she didn’t want to get a painful IV in her hand, and wanted to get out of the hospital and eat Krsipy Kreme donuts that night, she needed to stay very, very still during the procedure. That proved to be no problem for my amazing girl, except for the first part when the numbing medicine was injected directly into the most vulnerable part of the wound, and Evie screamed like there was a zombie eating her face. I was rubbing her head and Dan was rubbing her feet and legs, but at one point, the doctor showed us how deep Evie’s wound was by revealing the bone, and I went to sit down in the hallway to avoid passing out. But otherwise, all went well, and Evie was so incredibly brave, and earned an entire box of donuts.

What this incident taught us is that we need to create our own emergency protocol as a family. My current plan is to get a Vespa so that I can get all 3 kids to the hospital myself if I need to.

Being stuck in bed for the second time in a month with gastroenteritis (who knew that packaged almonds could wreck such havoc?), and all 3 kids at school, it’s the perfect time to finally write the story of Nane. There is huge reluctance to write this story because writing requires thought, and to think about the plight of this child is overwhelming and makes my heart physically hurt. But his story has to be told so that no matter what happens, someone knows he was here and how important he is.

The first time we (every time I write ‘we’ I mean Links for Education, AKA Urvi and I) met Nane was a month and a half ago in Ambedkar Nagar, on a day we went to the anganwadi (government preschool) with volunteers to teach yoga and read books to the preschool kids. Although he is 5, he looked like a toddler with a large head, blue-tinged lips, and stick skinny arms and legs. He was carried in by his mother, Jyoti because he cannot walk. He also cannot speak more than a couple of words in Kannada. It was immediately clear, even before we knew what he suffered from, that he was very, very sick. When I held Nane while Jyoti attended to her 2 year old and 5 month old daughters, his heart pounded in his narrow ribcage, and his breaths were shallow and hard to come by. I was afraid of holding him too tight. His dark blue mouth was open as he gulped for air, and as he tilted his head up and searched my face, his round, dark brown eyes locked on mine. In that moment it was impossible not to feel the pain this child was in. His mom asked us to help him, so the tears had to be held in and the wave of uncertainty and fear had to be pushed down as we tried to figure out how to help. A plan. We needed a plan.

This story is so convoluted, complicated and filled with so many lies and numerous people’s perspectives that it is daunting, and more than a little depressing to write. And I don’t promise that it’s the truth, the whole truth and nothing but the truth. It’s told from my perspective with all the background, culture, race, privilege, baggage, etc. that I bring to it. It’s the truth from my point-of-view, but may not match every other character’s in this story.

Like all the projects I have gotten involved in in Bangalore, this one is so much more complex than what it looks like on the surface. Trying to do good work of any kind here is so beyond difficult. An example, we collected that money from our yard sale fundraiser and generous friends and family back home to rebuild 14 houses (which I wrote about in a previous post), which fell down in a recent flood. It’s been over 2 months and we still have not given away this money. Because we have limited money, we will buy the materials which the homeowners can then use to rebuild their homes themselves. Apparently, most people in this community know how to do this. But even if only one wall fell down, they want enough materials to build an entirely new house. And everyone is fighting over who will get the materials first, and who will get more than others. And there’s the issue of this possibly being defense land so are we really even allowed to build on it? Even though Baghya says she has paperwork saying the land was given to the community, who knows? Currently, we are in the process of trying to find a contractor who will honestly tell us how many cement bricks and sand each home will need to rebuild it. Oh, and one who will consult for free. I get it, I do. People have been ignored and kicked down for so long by those that are supposed to help them, that they want to get what they can get at the expense of everyone else. It’s just how it is. And even if you manage to do what you set out to do, it’s only a drop in the bucket of what needs to be done. It’s enough to make me want to crawl back under my covers.

Back to Nane. He had been recently diagnosed with tetralogy of Fallot. Babies born with tetralogy of Fallot are called ‘blue babies’ because their lips and skin are tinged blue due to low oxygenation of blood. Bear with this medical stuff because I think it’s important in understanding Nane’s condition and his family’s response to it, and I will use the most user-friendly medical source of information around, Wikipedia to try to explain:

“Untreated, tetralogy of Fallot rapidly results in progressive right ventricular hypertrophy due to the increased resistance caused by narrowing of the pulmonary trunk. This progresses to heart failure which begins in the right ventricle and often leads to left heart failure and dilated cardiomyopathy. Mortality rate depends on the severity of the tetralogy of Fallot. If left untreated, TOF carries a 35% mortality rate in the first year of life, and a 50% mortality rate in the first three years of life. Untreated TOF also causes delayed growth and development, including delayed puberty.

“Patients who have undergone total surgical repair of tetralogy of Fallot have improved hemodynamics and often have good to excellent cardiac function after the operation with some to no exercise intolerance (New York Heart Association Class I-II). Surgical success and long-term outcome greatly depend on the particular anatomy of the patient and the surgeon’s skill and experience with this type of repair.”

Bottom line if you skipped all that medical stuff, in the US and much of the world, babies with this congenital heart condition would be operated on as infants, and the surgery has a very good success and recovery rate. Nane was 5 when his condition was first addressed by his parents. He’s already 2 years older than when half of babies with this condition die.

Nane had been diagnosed at a local hospital a few days before we met him. He was admitted to the ICU, and the doctors at that hospital had immediately referred him to a well-respected heart hospital for immediate heart surgery. However, the family didn’t go. His mother told us that they did not have enough money to pay for the surgery. We told her we would help, although we had no idea how much a heart surgery would cost in India. I asked Jyoti how much money she had towards the procedure, and she said zero. After a quick chat, Urvi and I decided we were prepared to spend the money we had raised for flood relief on Nane’s surgery instead. At that point, Baghya, the anganwadi teacher extraordinaire, jumped in to say that Nane’s parents had been given 15,000 INR from a neighbor for the surgery. When questioned about that, Jyoti said that she had spent most of that money already, and only had 8000 INR left. Baghya didn’t believe her. Baghya also told us that because of a government scheme, the family has been given a BPL card, which would allow the surgery itself to be free, although there would be costs associated with miscellaneous medical tests, blood work, and possibly bribes so that their son would be looked after well. We were confused as to why Nane hadn’t had the surgery at this point already if it was mostly free, but maybe we were missing something in translation. It turns out there there was, as there always is, more to the story than what was visible on the surface.

Although I wanted to drive immediately to the hospital right there and then, Jyoti said that she would check with her husband who is only home on Sundays, and let us know if it was okay to take Nane for surgery. Her husband could not be reached on the phone, so she asked her sister instead. She agreed, and on September 11th we picked up Jyoti, Nane and his cousin Manny and drove them to Sri Jayadeva Institute of Cardiology. This was the most crowded hospital I have ever seen ever. I was definitely the only non-Indian, and it looked more like a concert or an organized riot than a hospital. It is considered one of the better hospitals probably because it is partially privately funded, and it’s open to everyone, of any faith. Although it was crowded and looked chaotic to me, the staff and doctors seemed competent and experienced.

Jyoti was told in no uncertain terms by the admitting doctor that with the surgery there was a 5% chance that he wouldn’t make it through, but without the surgery he was sure to die. She agreed to admit him, and with the help of Vasanthi, my nanny extraordinaire who speaks the local language, the admittance process was handled. Nane was the 25th child in line for emergency heart surgery, and was kept in the ICU on an IV and given oxygen at regular intervals. Jyoti was concerned about her children at home, and so Baghya arranged for a friend of the family to watch Nane’s 2 sisters. Urvi and I agreed to pay for childcare, even though Baghya and Vastanthi were up in arms about Jyoti’s family not helping her for free when they are comparatively well-off (all have jobs and homes with floors and roofs). A few days later, Jyoti’s husband arrived at the hospital and the family discharged themselves. When we called to check on the family who we thought were in the hospital, Jyoti told us that the doctor said that Nane will never be better, and so they choose to take him home. She said that she has 2 other children at home to look after, and if Nane dies it is God’s will. Urvi and I called the doctor to verify this information, and she said that this is not what she told the family. In contrast, she said there was a very good chance that Nane would be healthy after the surgery and with the right amount of physical therapy, which we were willing to help arrange, he would be able to develop normally.

We have come to find out that Jyoti is not an honest woman. Although I have only met her husband once, I am guessing he isn’t either. Most days it seems that every single thing she says is a lie. Throughout the month and a half we have known her, she has probably lied to us more than she hasn’t. The lies she has told us as well as ProVision Asia, the NGO we called in to help are the following:

-The doctors said Nane will die if he has the surgery.

-I will have the surgery after I get 1 lak (100,000 rupees).

-My husband caused a traffic accident and needs 1 lak to pay the other driver.

-My husband was in an accident and injured his head and leg and needs money.

-I need money for the surgery (which was free).

-We spent all the money the neighbors gave us for the surgery.

-My husband beats me and the kids.

-If you pay for childcare for my other kids, I will get the surgery.

-I will call you when my husband comes back home so you can talk to him about the surgery.

-I will get the surgery done.

Anyone who has helped us interact with this family has told us not to trust Jyoti—Thamil and Vastanthi, my house helpers and translators, and Baghya. Although we, time after time, gave Jyoti, an overwhelmed mom with 3 children 5 and under, 2 of which have developmental delays and serious medical conditions, whose husband is an alcoholic and works in another city and is only home on Sundays, the benefit of the doubt. However, it became clear that she is using her son’s illness to try to collect money. Even with this knowledge, it’s not my place to judge her or her family. I can only imagine that being poor in a culture that perpetuates poverty and lack of educational opportunities, whose government is beyond corrupt and gets rich on the backs of those who need help the most, she feels she’s doing the best for her family. But all that said, she really pisses me off.

Links for Education visiting Nane at his home.

Nane with his new toy to help with fine motor skills.

Counting in the sun with garlic.

We visit Nane at least once a week, and although we don’t know it’s not enough, we bring him and his sisters toys and treats. He loves books, especially ones with animal sounds. We take him outside on walks. The neighbors think we are doctors, and seem confused as to why we are interested in helping Nane. I ask his mom about the surgery only once in awhile, but try not to harass her about it. I don’t want to make things harder. After one such visit, Jyoti started crying and said that she would have the surgery. When I called the next day to ask when we should pick them up to take them to the hospital, she had changed her mind again. Typically, when we leave our visits, I put Nane down on the couch, he holds out his arms to me, and I pick him up again. I don’t want to leave him. Every time we visit we have to ask Jyoti to bring down the toys from the top of the shelf that we have brought on previous visits. They are never on the floor where he can reach them. On two visits she has asked me to take Nane, do the surgery, and bring him back. She has also asked me to take him to my house. I repeatedly told her that she is Nane’s mom and he needs her. I have been advised by Baghya that if anything goes wrong with the surgery, I will be blamed. And Dan will not allow me to take Nane home. I don’t even know if what she’s asking is legal.

So what’s the plan? What do we do now? As a privileged American who is used a culture in which everyone gets on board to help each other, especially when kids are involved (I am not including Trump and his deportation plans for dreamers in this) I don’t want to give up. I need to make this okay. But it’s not in my hands, and I need to let go. I am leaving things in the hands of the experts—God and ProVision Asia. I am stuck and don’t know what else can be done. I have asked ProVision to figure out if there is an organization who can take legal custody if the parents want to give it and do the surgery, and then we can figure out an adoption plan, if that’s what the parents want. The good news is that last week ProVision said that Nane’s mom agreed to have the surgery in November. So for today, we are hopeful, but who knows what she will say tomorrow. Please pray for my friend.

Loaves and Fishes, A White Lie, and A Yard Sale.

This story started two weeks ago, before Hurricane Harvey and the disaster that it brought to the state of Texas. As I read the paper and watch the news, I am floored by the devastation, of course, but more so by the hundreds of people who came to help. Who just showed up willing to do something. The man who didn’t know how he would be able to help and wasn’t with any relief organization, but who rushed to Texas with his boat, and ended up rescuing something like 81 people and a cat. Besides individuals, there were non-profits as well as government agencies helping.

In contrast, what happens on the other side of the world when the government is too busy to help or even caused the flooding in the first place?

What happens when the flooding happens in a slum in Bangalore instead of a state in one of the richest nations in the world?

How ridiculous is it that the only people who came to help are my neighbors and I? Untrained, unfunded, and unqualified to help, but the only ones to show up. It’s true that God can seriously use anyone.

Another house in Ambedkar Nagar will most likely fall tonight. Sitting in my dry home listening to the rain pound relentlessly on the roof, it’s hard not to feel guilty having a clean, comfortable, and warm space to live. The community where one of the anganwadis we have been working with is located, has had a home collapse almost every night it’s rained this hard. So far 14 houses have collapsed. The first 2 days the local government BBMP official visited, took pictures and handed out food. The next 3 days, which also happened to be Friday and the weekend, they said they were too busy to come by. With mud and flood water and filth and flies and snakes and trash and tears and despair all around. According to one local, this neighborhood hasn’t experienced this type of flooding in the 30 years he has lived there. According to him and other long-time residents, this monsoon season was so harmful because a BBMP construction project in the area diverted the rain water from its normal course, creating a backup and flood waters with dire consequences for 14 families.

Two days after the first of the torrential rains and floodwaters destroyed homes in Ambedkar Nagar, we found out about it from Bagya, the anganwadi teacher, unofficial mayor of the slum, and all around good person when we called her to find out why she hadn’t shown up for our meeting at BBMP about potties we are trying to get built for the preschool. When asked how we could help, she suggested that we bring some snacks, medicine and drinking water. We bought 100 bananas, huge water bottles, and Parle G biscuits at Grand City, a shop located right outside of our gated neighborhood, which has successfully cornered the market on any food or household items the residents of Adarsh Palm Retreat and surrounding neighborhoods could ever want or need, and whose owners are notorious for their lack of generosity. Through an outright threat of boycott by myself and a proposed posting to the neighborhood listserv of their unwillingness to help out flood victims, and Urvi’s sweet request (essentially my bad cop to Urvi’s good cop) one manager finally ponied up 800 rupees to pay for the bananas from his own pocket. In addition to these snacks, we also planned to bring vegetable puffs, which can be obtained for a few rupees from local bakeries, but none of the shops had anywhere close to 100, so we went to 4 different shops and still only came up with about 50. Next stop was the pharmacy. Bagya had asked for cough, fever, blood pressure and “sugar medicine,” which I can only assume has something to do with diabetes. The gentleman at the pharmacy would not sell us bp or “sugar medicine” since we didn’t have dosage information, which seemed like a good call since the wrong dosage would definitely be a problem. On a different note, the pharmacist did however, agree to deliver Xanax to my home later that evening without a prescription.

When we arrived at the neighborhood it was clear right away that things were not good. Everything was covered in mud, belongings were hung to dry or broken, waterlogged and strewn all over the community. And people were crying, coughing with fevers, and really hungry. We handed out food and medicine in the anganwadi as fast as we could. We had a ‘loaves and fishes’ moment when we realized we were probably going to run out of veggie puffs, and started breaking them in half, which allowed just enough to serve each person once (and a few people who snuck back in line, twice).

A widow with 5 small children was staying in the anganwadi shelter since her home was uninhabitable, and was wailing about the devastation. We sat with her, held her hands, and told her that she was not alone. We fed her and her kids, and visited her home to see how we could help. None of her neighbors were helping her, and we asked several for assistance for her and her kids, and to share their homes with her if needed. It was at that moment that I felt most inadequate. With no knowledge of construction and no support from NGOs (although we did reach out to our contact at United Way of Bangalore several times, but she never got back to us) or the government, and no real resources, there wasn’t much we could do to help. My first instinct was to offer her and her kids a place to stay at my home. To give them warm showers and a place to sleep. But thinking about my kids at home and the many diseases that living in a slum brings, I was scared and didn’t open my mouth to offer. I keep thinking of how other, stronger helpers would have responded.

The assistant teacher at the school, Sheila, who lives alone refused to stay with neighbors for fear of getting head lice. Instead she preferred to stay in her water-logged home which smelled of mold and rotting food. She could barely walk because of an infection on her thighs from dirty water getting into a cut. She needed immediate medical attention.

Five different people who had not been able to travel to pick up their medicines because of the flooding for at least three days asked for help in getting their bp and “sugar medicine.” I called the doctor and nurse whose clinic serves this neighborhood, but they were “too busy” to bring medicine. The doctor even hung up the phone. Not wanting residents to have to wait additional days for potentially life saving medicine, we went to the clinic to pick up the necessary medicine, and brought Sheila along for treatment. The doctor tried to explain to us how to give people the appropriate bp and sugar medicine, but since Urvi and I are completely untrained in anything remotely medical, and Thamil, my helper who came along and IS actually a certified nurse and completely overqualified to work for me, but who hasn’t done any actual nursing in years, we asked the trained nurses to please come to the neighborhood. The doctor refused to allow them to go, saying that they had too much work to do at the empty clinic. We tried to appeal to the doctor’s humanity saying that people would die without their medicine for this amount of time – no luck. We tried to appeal to her sense of duty saying that she serves this population – she said she isn’t a mobile clinic. We tried to bribe her – but she wouldn’t bite. At that point I started snapping photos of the clinic, the doctor, and her staff, and I may have indicated that I was a journalist. (Blogging is practically journalism, right?). At that point the doctor quickly agreed to send both of her nurses to the slum with us for two hours, and in that two hours they were able to see about 500 people. We paid them for their trouble. The doctor even went the next day to follow up with the patients, and she is probably waiting for her pay-out and for an article to come out in the local paper about her heroics.

BBMP promised that they would deliver food that Friday evening, but by 6 pm it was clear that wasn’t happening. Urvi and I visited a local shop and bought rice, lentils, sugar, oil, and some other necessities to get them through. And a friend was able to quickly mobilize to get a cooked rice and dahl delivery for 200 people by 11:30 pm, but the rice was undercooked, apparently, and everyone was unhappy. Fortunately, over the next two days we were able to provide lunch and dinner that everyone approved of from a local ‘hotel’ AKA roadside food stall. We were able to raise funds to pay for the food from the bake sale/yard sale fundraiser we held in our neighborhood that weekend. This was the first yard sale many expats and Indians had ever gone to, and most were surprised by how many useful and like-new items they could get for next to nothing. The drivers and helpers in the neighborhood were able to purchase items for half-price the following day, and were happy both that they were able to support people who lost their homes as well as buy things they wouldn’t normally be able to afford. One of our helpers was able to find a rug, a table and chairs, and a full set of dishes. And we were able to raise over 50,000 rupees (around $750 US) for the people who lost their homes.

This week we went to Ambedkar Nagar to do a needs assessment and figure out how to best utilize the money we raised. Bagya suggested cement and blocks for rebuilding, which, I assume, for 14 homes will be way over our budget. We are hoping that BBMP, having caused all this flooding in the first place, will take the lead in paying for the bulk of the rebuilding and trash/debris pick up, but having had several disappointing meetings with the BBMP office about potties, I’m assuming we are going to have to do the work ourselves. So again, we will show up, and see what happens.