Monday, December 27, 2010
Wednesday, December 22, 2010
Blood Counts
The latest blood results are in. All of Peter's counts remain abnormally low and are not expected to recover.
White count: Has continued to decline slowly since baseline on October 22.
Red count: Had been steady but is now up a bit driven by Hemoglobin
Hemoglobin: Had been steady but is now up a fair amount.
Platelets: Have fluctuated, but latest count is lowest ever.
I'm told that when the counts get really low, they can fluctuate somewhat randomly from test to test. The tests are only accurate to within a certain range. Peter's platelets are already so low that 23 may or may not be significantly lower than 30. But in the bone marrow examined on 11/3, there were almost no platelet precursors.
Supposedly, spontaneous bleeding doesn't become a big risk until platelets are below 15. At that level, there is usually bruising and little red dots where capillaries have broken under the skin. Bleeding of gums and nose is common. Bleeding behind the eye can threaten sight. The most serious bleeds are in the head or gastrointestinal tract. It's common for them to be fatal.
Peter's white count shows that he is at increased risk for infections but not yet highly susceptible. He caught a cold in Kolkata which lingered a while but was never severe. In the blood examined on 11/3, most of the white cells were mature, and there were very few white cell precursors in the bone marrow. Since white cells have about a 30 day lifespan, I'm not surprised that the white count is down again 6 weeks later. But among the various types of white cells, Peter's lymphocytes are doing best. These are important infection-fighters so it's good to see them holding on.
The increase in Peter's Hemoglobin seems too big to be random. Although the sample of his bone marrow that was biopsied showed less than 5% cellularity (<5% of expected stem cells were present), there was an abnormally high number of red cell precursors there. So ... more precursors then, more Hemoglobin now? Red cells live for 3-4 months. So ... higher Hemoglobin (still abnormally low, but higher than earlier tests) for at least that long?
The doctors tell me that bone marrow failure often goes in fits and starts. Counts can drop quickly and then plateau for a long time. One count can improve while another declines. If we could see into the bone marrow as often as we do blood tests, we could have a better sense of what is coming down the pike. All we know about Peter's marrow is that in very early November, it had a lot of red cell precursors. We aren't planning to do another biopsy.
My research suggests that elevated red cell precursors may be a consequences of abnormal destruction of red blood cells (hemolysis) either in the bloodstream (auto-immune) or, more typically, in the spleen. I know another Indian child who has had very low red cells and platelets but normal white counts. It was determined that her spleen was destroying red cells and platelets, and she just had it removed last week. Her parents are hopeful that this will rectify her blood problems, although living without a spleen means that it'll be harder for her body to fight infections.
I've never really understood what the spleen does. I know that people can live without one, so why do we even have them? It turns out that the spleen does 3 important things:
- Filters out and destroys old and damaged blood cells
- Plays a key role in preventing infection by producing white blood cells called lymphocytes and acting as a first line of defense against invading pathogens
- Stores red blood cells and platelets
Peter's hematologist palpated his abdomen to see if his spleen was enlarged. An enlarged spleen is seen in a number of different blood disorders. When the spleen gets too large, it begins to filter normal red blood cells as well as abnormal ones, reducing the number of healthy red cells in the body. It also traps too many platelets. Eventually, excess red blood cells and platelets can clog the spleen, interfering with its normal functioning.
Unfortunately, Peter's obesity made it impossible for the doctor to feel his spleen. Apparently enlarged spleens are often associated with enlarged livers. The doctor talked about doing an ultrasound of Peter's abdomen to look at both of these organs. I'm not sure if any of this really matters in a person suffering from a genetic bone marrow failure syndrome. Were we to observe an enlarged spleen, is there anything we can do about it? I suppose that surgery could still be done with Peter's current platelet level. But removing the spleen weakens the body's immune system, and with his white count going down, he's already immuno-compromised.
As I was looking over all of the test results, I noticed that Peter's Hemoglobin A1 (adult type) is low and that his Hemoglobin F (fetal) is high. The hematologist told me that elevated Hemoglobin F is seen in a number of blood and marrow failure disorders. Two of the most common genetic disorders are Thalassemia (seen most often in the Middle East, Asia and some parts of Africa) and Sickle Cell Anemia (seen most often in Africa). Elevated HgB F is also seen in Fanconi's Anemia, which Peter does not have.
I found an interesting piece of research online (from the journal "Pediatrics") relating to diagnosis of specific bone marrow failure disorders. Fanconi's Anemia is the most common, albeit so rare that it is called an "orphan" disease. There are only a couple of other disorders that have been clearly identified. Beyond that, complete molecular testing can reveal where the DNA abnormality is located, but that isn't very helpful. "New" (previously unidentified) abnormalities are found all the time, and there are many others that have been found in one or two or a handful of people -- too few to characterize any kind of "syndrome".
It's hard for parents not to know exactly why their child's bone marrow is failing. It's especially hard when the parents are considering having more children. How can you screen for something that doesn't have a name or a practical genetic test? Complete DNA analysis at the molecular level isn't something that can be done on a whole bunch of embryos to determine which of them are normal. It's a long process, and it's very expensive.
Children with unclassified syndromes often go through test after test to try to get to a specific diagnosis. In the meantime, their blood counts continue to drop. The only "cure" for bone marrow failure is a bone marrow transplant, typically from a well-matched healthy sibling. Transplants using marrow from an unrelated donor have a much lower success rate and a much higher incidence of long-term side effects that can undermine quality of life. But how can a family know whether a sibling is healthy when they don't know exactly what is wrong with the affected child's DNA?
But we are not biological parents, and we are not pursuing a bone marrow transplant. So it really doesn't make sense to push for extensive genetic testing in Peter's case. And that leads me back to the question about an enlarged spleen. Do we care? Will knowing that it is or isn't enlarged make any difference to Peter's long-term outcome? This is a good question for the hematologist. I'm guessing that the answer is no.
And then there's the short-term outcome to consider. We need to find out whether there are any tests whose results could give us the opportunity to give Peter more "good time". I define "good time" as time when Peter can live relatively normally, do pretty much what he wants to do, hang onto psychiatric stability, NOT spend time in hospitals, NOT have frequent blood draws or other tests, NOT think of himself as a sick person. Perhaps I am being overly restrictive here. I can't ask Peter what "good time" means to him. All I know is that whenever he has to see a doctor (for anything) or get a test, it's NOT a good time.
I asked the hematologist if he could hook me up with a counselor or therapist or social worker with experience in making end-of-life decisions for children. He and his staff couldn't come up with anyone. I suppose I should call Children's Hospital to see if they have any resources we can tap. Things are especially complicated with Peter because of his bipolar disorder. He is so easily destabilized, and when that happens, there are NO good times. I wonder if there is anyone on earth who has experience in end-of-life decisions for mentally retarded, mentally ill children with genetic blood disorders? Well ... fast forward a little and there will be me.
I was also struck by comments in the "Pediatrics" study about the overlapping clinical features of many genetic marrow failure syndromes. Peter has quite a few physical anomalies, but in reading about the 3 most common syndromes, I discovered that many of his anomalies are common to all three -- common in the sense that some percentage of people with those syndromes have those anomalies. None of the syndromes comes with a "must have" list for anomalies, just a list of anomalies that are sometimes seen.
This overlap makes even more sense to me after seeing the young man in India who looked like Peter's twin. They have so many characteristics in common, yet it's clear they suffer from different syndromes based on some important things they don't share in common. It would be so interesting to know exactly where the other boy's DNA defect is as compared with Peter's. Entirely academic, but still interesting.
All this researching and reading and analyzing and thinking must sound pretty compulsive. Heck, yeah. I have no illusions that it will change anything, but I feel stronger knowing more. It will help me continue making good decisions as time goes by. As far as tracking the blood counts is concerned, that too is a largely academic exercise. The doctors say that there is no specific schedule for testing Peter's blood. I imagine we'll want to get new numbers every couple of months so that we can prepare ourselves for some of the things that might happen when the counts get very low.
With today's results in hand, I expect that all three of the Futia children will be in Johnstown, PA this June for our beloved SPICE Indian Heritage Camp. This will be Peter's 17th consecutive year in attendance. We all need Peter to have one more SPICE.
Monday, December 20, 2010
School's Out!
It was time to re-test Peter's blood (very anxious to see how fast counts are dropping). Instead of fighting traffic after school on Friday, I waited until this morning and offered Peter a choice of restaurants for a mom-and-son lunch afterwards.
Peter actually does really well with blood tests, but he resists and groans before hand anyway. So we have a tradition of a special treat afterwards. Peter chose Wendy's today. Last time it was a Thai restaurant where he ordered his #1 favorite, Shrimp Pad Thai.
I'm a lucky mommy to have a son who will always hold my big paw in his little paw as we go here and there. Even though he's 16, he can get away with it because he will never experience puberty. I did mention to him today -- casually -- that there is some medicine we can give him to help him grow up into a man. He shook his head vigorously and said, "No! I don't want to grow up!" I pressed him for a reason, and he said, "I want to be a kid so I can always live with you and Daddy". I understand where this is coming from -- we talk occasionally about the group home he'll one day live in, where he can have a job and friends and a life of his own. He hasn't seemed the slightest bit interested, but he still can't live with us FOREVER.
Except ... he can, of course.
It is so sweet having lunch with your child. Why did I have to wait for blood tests to start this tradition? Can I persuade you not to wait? School's out, and memories are there for the taking.
Saturday, December 11, 2010
Delhi Driver -- Delayed Post from 12/2
This update just bounced back to me and I don't want you to miss it.
From 12/2:
We have been so busy that it has become a battle between blogging and sleep ... with the obvious outcome.
We arrived in Delhi on Wednesday the 1st after our midday flight from Bangalore. The new airport there hasn't been open long, and it is the usual blend of incongruities: spacious car park but woefully inadequate access roads; the latest in toilet fixtures but the same old stink; attractive landscaping marred by piles of rubbish (mostly plastic bags) thrown out of car windows.
The drivers I've hired in India have always been exceptional, but this one missed his calling as a Keystone Kop. My travel agent sends the local car-hire agency a detailed itinerary for his arriving passengers. This driver did not or could not read his. He waited for us at the INTERNATIONAL terminal. When we finally got him to come to where we were waiting ("Please come to the Domestic terminal!" ... "Yes madam, International terminal, I waiting") he led us to our rented SUV and began loading our baggage.
He was a very slight man, so he had to use all of his strength to fold up the seats in the far back and hoist our bags into the newly-created space. The only problem was that only 3 seats remained in the vehicle for the 5 of us. It took us quite a while to communicate this to him. While loading, he apparently had no energy left for listening. Finally I counted loudly for him in Hindi:
"Driver Sahib!! See ... 5 people, only 3 seats!"
"Ohhhh ... 5 people???"
"Yes, Sahib, 1, 2, 3, 4, 5".
"Aachchaa? OK, OK, no problem".
He took out all the bags, flipped one far back seat down, and attempted to reload all 5 in space enough for 2 1/2.
Whoa! "Driver Sahib! Stop! 5 people!"
"Ohhhh ... 5 people???"
"YES, SAHIB! 5 PEOPLE!!! Bags go up!"
He stared at our bags with great disappointment. This was something he had clearly not anticipated. With help from traveling companion Erling, who did most of the heavy lifting, he eventually found a configuration that allowed our bags to fit on the roof rack.
He seemed very relieved when this was all done, and allowed himself a nervous smile while motioning us to get in the car.
"Wait, Driver Sahib! You tie with rope!"
He stared at us with total incomprehension. We pantomimed the act of securing our bags to the roof rack (this is standard in India) and eventually got through to him. He went rummaging through the back compartment and proudly produced a length of rope.
"See, Madam? No problem!"
Immediately after leaving the airport we entered a hideous traffic jam that limited us to 1km in 30 minutes. Apparently we got there at a good time of day.
Our itinerary requested that we drive down Rajpath and stop at a place where we could photograph the iconic India Gate. Before reaching that part of the city, the driver really hit his stride. He began pausing to point out every 5-star hotel we passed. Never mind when I pointed to an interesting building or compound and asked (in Hindi) what it was. He was already preparing for the next 5-star hotel.
As for India Gate, when we reached its general vicinity, he waved vaguely in its direction and said "India Gate, Madam. Now hotel?"
We tried to ask him to stop and circle around for a better look at Delhi's most famous monument, but he had clearly had an aural seizure leading to temporary deafness.
Typically, drivers determine from the client's itinerary what locations must be found, and prepare ahead of time to avoid getting lost. This fellow must have been a recent migrant from a distant planet. Our hotel sat in a neighborhood filled with dozens of similar lodgings almost entirely inhabited by foreign travelers. In other words, this was tourist hotel central, and almost adjacent to the New Delhi Train Station.
Our driver had to ask for directions 4 times. When he eventually found the right street, we had to find the hotel. By that time he had given up any semblance of trying to guide us himself.
The next time we saw him was two mornings later when he glumly loaded our baggage atop the car while we settled our bills. Mind you, he came 15 minutes late and took almost 30 to secure the bags. Our next stop was the nearby Rail Reservation Center, where we were to meet our guide for an interesting walking tour. We were already late, but I had a detailed map to show him, and since the RRC was NEXT TO the train station, it was reasonable to expect our driver to find it without delay.
Wrong-o.
Later we headed for the airport for our flight to Kolkata. As we approached the terminals, I said loudly:
"Jet Airways, Driver Sahib".
He nodded. A few moments later, at a critical junction, he turned to me and asked:
"International Terminal?"
"NO! Domestic flight! To Kolkata!"
"Ahhh ... Kolkata. International Terminal?"
"NO!!! DOMESTIC FLIGHT! JET AIRWAYS!"
He veered in the right direction at the last moment. Then came an immediate junction with a big sign saying JET AIRWAYS.
"DRIVER!!! Jet!!! Jet!!! THERE!"
He crossed 3 lanes of traffic at top speed to make the required turn. We were all pale and sweaty at the thought of going around the airport again in the horrible traffic. But the driver was positively chirpy. He smiled broadly, waggled his head from side to side, and said,
"See, Madam? No problem!"
From 12/2:
We have been so busy that it has become a battle between blogging and sleep ... with the obvious outcome.
We arrived in Delhi on Wednesday the 1st after our midday flight from Bangalore. The new airport there hasn't been open long, and it is the usual blend of incongruities: spacious car park but woefully inadequate access roads; the latest in toilet fixtures but the same old stink; attractive landscaping marred by piles of rubbish (mostly plastic bags) thrown out of car windows.
The drivers I've hired in India have always been exceptional, but this one missed his calling as a Keystone Kop. My travel agent sends the local car-hire agency a detailed itinerary for his arriving passengers. This driver did not or could not read his. He waited for us at the INTERNATIONAL terminal. When we finally got him to come to where we were waiting ("Please come to the Domestic terminal!" ... "Yes madam, International terminal, I waiting") he led us to our rented SUV and began loading our baggage.
He was a very slight man, so he had to use all of his strength to fold up the seats in the far back and hoist our bags into the newly-created space. The only problem was that only 3 seats remained in the vehicle for the 5 of us. It took us quite a while to communicate this to him. While loading, he apparently had no energy left for listening. Finally I counted loudly for him in Hindi:
"Driver Sahib!! See ... 5 people, only 3 seats!"
"Ohhhh ... 5 people???"
"Yes, Sahib, 1, 2, 3, 4, 5".
"Aachchaa? OK, OK, no problem".
He took out all the bags, flipped one far back seat down, and attempted to reload all 5 in space enough for 2 1/2.
Whoa! "Driver Sahib! Stop! 5 people!"
"Ohhhh ... 5 people???"
"YES, SAHIB! 5 PEOPLE!!! Bags go up!"
He stared at our bags with great disappointment. This was something he had clearly not anticipated. With help from traveling companion Erling, who did most of the heavy lifting, he eventually found a configuration that allowed our bags to fit on the roof rack.
He seemed very relieved when this was all done, and allowed himself a nervous smile while motioning us to get in the car.
"Wait, Driver Sahib! You tie with rope!"
He stared at us with total incomprehension. We pantomimed the act of securing our bags to the roof rack (this is standard in India) and eventually got through to him. He went rummaging through the back compartment and proudly produced a length of rope.
"See, Madam? No problem!"
Immediately after leaving the airport we entered a hideous traffic jam that limited us to 1km in 30 minutes. Apparently we got there at a good time of day.
Our itinerary requested that we drive down Rajpath and stop at a place where we could photograph the iconic India Gate. Before reaching that part of the city, the driver really hit his stride. He began pausing to point out every 5-star hotel we passed. Never mind when I pointed to an interesting building or compound and asked (in Hindi) what it was. He was already preparing for the next 5-star hotel.
As for India Gate, when we reached its general vicinity, he waved vaguely in its direction and said "India Gate, Madam. Now hotel?"
We tried to ask him to stop and circle around for a better look at Delhi's most famous monument, but he had clearly had an aural seizure leading to temporary deafness.
Typically, drivers determine from the client's itinerary what locations must be found, and prepare ahead of time to avoid getting lost. This fellow must have been a recent migrant from a distant planet. Our hotel sat in a neighborhood filled with dozens of similar lodgings almost entirely inhabited by foreign travelers. In other words, this was tourist hotel central, and almost adjacent to the New Delhi Train Station.
Our driver had to ask for directions 4 times. When he eventually found the right street, we had to find the hotel. By that time he had given up any semblance of trying to guide us himself.
The next time we saw him was two mornings later when he glumly loaded our baggage atop the car while we settled our bills. Mind you, he came 15 minutes late and took almost 30 to secure the bags. Our next stop was the nearby Rail Reservation Center, where we were to meet our guide for an interesting walking tour. We were already late, but I had a detailed map to show him, and since the RRC was NEXT TO the train station, it was reasonable to expect our driver to find it without delay.
Wrong-o.
Later we headed for the airport for our flight to Kolkata. As we approached the terminals, I said loudly:
"Jet Airways, Driver Sahib".
He nodded. A few moments later, at a critical junction, he turned to me and asked:
"International Terminal?"
"NO! Domestic flight! To Kolkata!"
"Ahhh ... Kolkata. International Terminal?"
"NO!!! DOMESTIC FLIGHT! JET AIRWAYS!"
He veered in the right direction at the last moment. Then came an immediate junction with a big sign saying JET AIRWAYS.
"DRIVER!!! Jet!!! Jet!!! THERE!"
He crossed 3 lanes of traffic at top speed to make the required turn. We were all pale and sweaty at the thought of going around the airport again in the horrible traffic. But the driver was positively chirpy. He smiled broadly, waggled his head from side to side, and said,
"See, Madam? No problem!"
Friday, December 10, 2010
We're home
We arrived home in Chicago yesterday evening around 7, several hours later than planned. Our British Airways flight from Mumbai to London was delayed 4 hours, and that meant a new connection from London to Chicago. We had to sleep most of the night at Mumbai airport, which stops looking so "new" when you spend more than a short time there. I managed to charge my Blackberry while Peter slept on a chaise lounge.
The trip home was uneventful. On both flights, we had an empty seat next to us and this greatly reduced Peter's anxiety since he did not feel so claustrophobic. During our stop in London, we had a really nice meal. As we walked into the restaurant, Peter asked me, "Mommy, do they have MEAT?" I had a delicious salad (a big crave after 17 days of no uncooked vegetables) and Peter had a big burger. We both had hot fudge brownie sundaes. That's the end for me -- I'm 7 pounds overweight and will NOT let myself continue going in this direction. I have enough on my plate without hating what I see in the mirror.
Our trip together was beyond all expectation. Peter's bipolar disorder largely took a back seat, allowing the "real boy" to come forward. I love all of Peter's boys, but the one not dogged by bipolar disorder is especially sweet. I could never have imagined a trip with so much joy in it and so little anxiety and agitation. I actually forgot to give him his extra tranquilizer most days in Kolkata. This is unbelievable!
Dealing with pushy hawkers and beggars was the most difficult thing for Peter during our trip. He felt very oppressed by people demanding things from him, following him, getting in his face, even touching him. It was hard for him not to make eye contact and simply ignore them.
As expected, Peter wet the bed most nights and intermittently had poop in his pants. I had prepared for those eventualities by purchasing 3 dozen pairs of cheap underpants at Wal*Mart. When necessary, we just left underpants behind. Peter always had a spare pair of underpants and a pack of wipes in his backpack. When he needed to, he went in a bathroom to clean himself up. He took the responsibility for staying clean and odor-free. My objective was to help him maintain his dignity despite these problems, and he did.
At the end of our trip, Peter told me with full gravitas, "Mommy, I think I've had enough adventures for now. I want to go home".
He took 9 flights. He slept in 5 entirely different places. He ate well. He did not attach himself to me like Velcro but felt safe enough to be very independent. He was happy. He made others happy. He did it!
While saying goodbye to Michelle and Gibi and her family, they told him that they wanted him to come back and see them soon. He replied, "Maybe I'll come back ... when I'm not so tired."
When she heard him say that, Gibi pulled me aside to say, "Chris, I think he knows". I'd been thinking the same thing, although "knows" is a hard-to-define word in this context.
On the flight home, he turned to me at one point and asked if he was going to have any more blood tests. I said, "I think so".
"Because my blood is sick?"
"Yes".
"But I don't like blood tests".
"I know, but you're handling them pretty well now."
Nod. End of conversation.
The trip home was uneventful. On both flights, we had an empty seat next to us and this greatly reduced Peter's anxiety since he did not feel so claustrophobic. During our stop in London, we had a really nice meal. As we walked into the restaurant, Peter asked me, "Mommy, do they have MEAT?" I had a delicious salad (a big crave after 17 days of no uncooked vegetables) and Peter had a big burger. We both had hot fudge brownie sundaes. That's the end for me -- I'm 7 pounds overweight and will NOT let myself continue going in this direction. I have enough on my plate without hating what I see in the mirror.
Our trip together was beyond all expectation. Peter's bipolar disorder largely took a back seat, allowing the "real boy" to come forward. I love all of Peter's boys, but the one not dogged by bipolar disorder is especially sweet. I could never have imagined a trip with so much joy in it and so little anxiety and agitation. I actually forgot to give him his extra tranquilizer most days in Kolkata. This is unbelievable!
Dealing with pushy hawkers and beggars was the most difficult thing for Peter during our trip. He felt very oppressed by people demanding things from him, following him, getting in his face, even touching him. It was hard for him not to make eye contact and simply ignore them.
As expected, Peter wet the bed most nights and intermittently had poop in his pants. I had prepared for those eventualities by purchasing 3 dozen pairs of cheap underpants at Wal*Mart. When necessary, we just left underpants behind. Peter always had a spare pair of underpants and a pack of wipes in his backpack. When he needed to, he went in a bathroom to clean himself up. He took the responsibility for staying clean and odor-free. My objective was to help him maintain his dignity despite these problems, and he did.
At the end of our trip, Peter told me with full gravitas, "Mommy, I think I've had enough adventures for now. I want to go home".
He took 9 flights. He slept in 5 entirely different places. He ate well. He did not attach himself to me like Velcro but felt safe enough to be very independent. He was happy. He made others happy. He did it!
While saying goodbye to Michelle and Gibi and her family, they told him that they wanted him to come back and see them soon. He replied, "Maybe I'll come back ... when I'm not so tired."
When she heard him say that, Gibi pulled me aside to say, "Chris, I think he knows". I'd been thinking the same thing, although "knows" is a hard-to-define word in this context.
On the flight home, he turned to me at one point and asked if he was going to have any more blood tests. I said, "I think so".
"Because my blood is sick?"
"Yes".
"But I don't like blood tests".
"I know, but you're handling them pretty well now."
Nod. End of conversation.
Thursday, December 9, 2010
Peter's global family grows
I started sponsoring Maria Kanji when she was 4n while we were in the process of adopting Leo. She is now 30 with daughters aged 14 and 10. Maria exemplifies the adage that "when you educate a girl, you educate a family". Maria's #1 focus is her daughters' education. She and husband Paban were able to step out of grinding poverty in the inner-city bustee where they grew up. Their daughters will no doubt live with greater opportunity and security once they are grown.
We took Maria and family to breakfast at the legendary Flury's on Park St. in Kolkata. After a delicious English-style breakfast, we enjoyed yummy pastries before going our separate ways. Who knew you could get a decent chocolate croissant in Kolkata?
Peter really enjoyed getting to know "big sister" Maria, who had already met Leo and Annie, and playing Dada to Sweety and Riya.
We met my newest sponsored child, 5-year-old Moutushi, at Children International's Kolkata office. She and her mother had come in to the city for the first time from their remote hamlet south of Kolkata.
Moutushi's father is a day-laborer, doing physically punishing road work when he can get it. He is blind in one eye and terrified that the road crew bosses will find out and declare him unfit for work. Moutushi's mother Poornima stays home to care for her and her baby sister.
Before seeing Moutushi, we had tea and extended conversation with the director of the Kolkata program, who turned out to be an adoptive parent! Peter was exhausted and slept soundly for a long time.
When Moutushi and her mother entered, they bowed low to touch our feet as a sign of respect. Moutushi's family belongs to the Santhal tribe, the same as our daughter Annie. I chose Moutushi because she reminded me of Annie ... and in person, the resemblance in appearance and personality was simply astonishing.
I couldn't wait to give Moutushi her gifts. She loved her brown Barbie doll, her kaleidoscope, her Dora the Explorer doll, her Dora underpants, and her Dora coloring book. But what made her jump up and down and giggle was her pink Dora backpack. She put it on immediately and wouldn't take it off even when she went to the bathroom.
After we enjoyed Moutushi's antics for a while, the staff ushered in my former sponsored child Partho. I wasn't sure they'd be able to find him, so when I caught sight of his face I was absolutely blown away. At 25, his liquid brown eyes and sweet smile were exactly as I remembered.
I last saw Partho in 1998 when he was 11. On that visit, I went to his tiny rural village and met his family. Walking along a "berm" between paddy fields, I slipped slightly. Partho grabbed my elbow exclaiming "Aunty, Aunty!". For the rest of the visit he never let go of my arm.
I continued sponsoring Partho until he finished high school and -- amazingly -- entered university. I helped to buy his books and the other things he needed for college. At that point, I lost track of him.
I've always had a special place in my heart for Partho. His semi-annual letters were full of questions and wishes for his brothers Leo and Peter, and his sister Annie. He always ended with "I love you, Aunty".
As soon as we saw each other, Partho and I crushed each other in a big hug.
"Ohhh! Partho! My college graduate!"
"Aunty, oh, Aunty ... no graduate. My father, he died in first term and so I go home to take care of family".
Partho's eyes filled with tears as he told me this. I held him close and whispered "Oh, Partha, I'm so sorry, so sorry ... but I"m so proud of you".
It turned out that Partho's father had been electrocuted in front of his eyes in a freak accident while he was on a brief visit home. Partho tried to revive him, but there was no hope.
Partho took over his father's role as a subsistence farmer to support his family. He said his dream was to complete his degree one day, or start a business of his own, but for now he had taken a part time job selling life insurance on a commission-only basis. Had he received his degree, he would have been eligible for a salaried position.
Partho pulled out a small bunch of pink roses for me, plucked from his own garden. He had also made beautiful cards for Leo, Annie and Peter. I tucked $100 in rupees into his shirt pocket. He kept a tight hold on my hand while I pulled out my Blackberry and showed him photos of himself as a child and teen. He remembered every detail of every letter I'd ever written him, and asked lots of questions to catch up on the latest family news. It was an extraordinary connection. I felt as if the 12 years since our last visit were only seconds.
During all of this, a reporter and photographer captured everything that was going on. I am being featured in the spring issue of Children International's subscriber magazine. Maria and Partho were both interviewed for the article, and I wrote thousands of words to answer a long list of questions before I left for India. It's an honor to help Children International in any way I can.
We all piled into cars and went to a Pizza Hut near Park Street for a celebratory lunch. I ordered pitchers of Pepsi and 7-Up, several plates of garlic bread, and 4 large pizzas. Moutushi wasn't thrilled with her first taste of soda. The bubbles made her tongue sting! Moutushi's lovely young mother had tasted soda once before, and she enjoyed her glass.
Most everyone enjoyed the garlic bread. The vegetarian pizzas without Indian spices weren't a big hit, and Moutushi's poor mom obviously felt embarassed to not finish what was on her plate. When the chicken tikka masala pizzas came out, I whisked away her plate and put a slice of the spicier pizza on her new one. She seemed relieved when she recognized a familiar flavor.
After the pizza, I ordered ice cream all around. Moutushi and her mother ate theirs cautiously at first but then with great enjoyment. I sat next to Partho and enjoyed urging him to eat more just the way an Indian mother would. At one point, I teasingly fed him a piece of chicken from my plate. Later, he got my attention and fed me a bite of ice cream from his bowl. These little gestures are iconic of the intimacy between mother and child in India.
Partho and I reminisced together, sang Bollywood songs, and talked about the past and future. He noticed the tattoo on my wrist and showed me his on the opposite wrist, whispering that it was the name of his high school girlfriend. But alas -- she was Christian, and a marriage was unacceptable to both families. He said he wanted a girl with a sentimental heart like his. He likes the Bollywood actress Preity Zinta, who has a cute "girl next door" persona.
Then it was time for us to go, literally. Our flight to Mumbai was in a few hours. Partho put his arm around me.
"Aunty, you come my house next time".
"Yes, Partho, I promise. Stay well, beta."
"Stay well, Aunty. And Aunty? I love you".
I kissed his forehead and put a hand on his head to bless him. We won't lose touch again; I now have his email address.
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Victoria Ride
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More Kolkata
Oh my we were busy!
After SICW, we had a tour of some of Kolkata's most famous markets. It rained lightly most of the day. The massive wholesale flower market (biggest in Asia) was a tangle of muddy paths with countless flower vendors along each side. This market sits on the banks of the river Hooghly (Kolkata's name for the Ganges) in the shadow of the famous Howrah Bridge.
Despite the overcast and smog, the colors were brilliant. The smell of the flowers, mixed with incense, cheap cigarettes, cooking fires and diesel fumes, formed a blanket around us. I just couldn't take enough photos.
And then I got lost. It was my own fault. I hung back to snap a few more images and was separated from the others. They left the flower market in one direction, I in another. I was pretty sure I could get back to the place where the car was parked, but as usual I failed miserably.
I soon found myself standing in the rain without an umbrella at a rail crossing seemingly in the middle of nowhere. I had no cell phone service. I was surrounded by coolies who were naked to the waist, with short lungis hanging to their knees and small towels around their necks.
I did not feel afraid. People in India are overwhelmingly good and kind. If one man among the dozens had treated me inappropriately, others would have stopped him. I was angry at myself for my series of bad decisions, and very, very worried for Peter. He has a strong fear of abandonment. If I start the car in the garage before he gets in, he panics.
It would be dark in less than an hour. I went up to a tiny tobacco and snack shack and eventually found someone willing to lend me his mobile. But he had no service either.
Then I pantomimed to the crowd to convey the location I wanted to find. Some of the coolies seemed to understand me, but no one agreed to take me there until I offered Rs. 100 (about $2.25). Then a man of about 25 beckoned to me to follow him. We started a long walk down the train tracks, stepping from one wooden tie to another. I wasn't confident that we were going in the right direction, but what choice did I have?
A couple of times, I heard a train coming. I jumped off the tracks and flattened myself as far away as possible. The wind whipped my hair as the train passed.
Indeed, the coolies had guessed a different location than the one I had tried to convey in sign language. We were on the way to faraway Babu Ghat.
Then my phone rang. Our guide had finally gotten through to me. She asked me where I was, and I put the coolie on to explain. Then he handed the phone back to me.
"Chris!" She shouted. "Do NOT go with that man! I repeat: DO NOT go with that man! He is taking you to Babu Ghat. Come to the Howrah bridge! Come to the bridge!"
I was confused. I put the coolie back on. This is how their conversation went.
"Please bring Memsahib to the bridge immediately!"
"But Memsahib wants to go to Babu Ghat! I'm taking her there!"
"No, bhai! Take her to the bridge!"
"But Memsahib wants to go to Babu Ghat! Shaking his head, he hung up on her.
Now I stopped walking. I gestured in the direction from which we had come. The guide called again and talked to both of us. Eventually we began to retrace our steps. 30 minutes later, I met up with the rest of the group, paid my coolie, and got into the car to dry off. Peter turned to me and said, "I was scared, Mommy!". I expected him to perseverate on this for a long time, but he didn't react the way he would at home. In "his India", he seemed less afraid that someone might harm me.
Later, we took a chartered water taxi 90-minute ride under and beyond the Howrah bridge. It was dark and rainy, but we were all in great spirits.
During the rest of our time in Kolkata we shopped for books and handicrafts, sampled Tibetan food (Peter LOVES momos!), strolled around the Victoria Memorial, and had a fun ride in a gaudily-decoraated horse-drawn carriage called (logically) a Victoria.
The smog in Kolkata was absolutely appalling. I have never experienced such poor air quality. All of us -- except Peter -- came down with a raging head cold with stinging eyes, streaming nose and raw throat. (Peter did come down with it, mildly, at the very end of the trip). The locals suggested that it might be smog-induced. It was a misery, but our time in India was swiftly drawing to a close.
All three of our traveling companions had some tummy trouble during the trip. Neither Peter nor I had so much as a rumble. Life is good.
Sent from my Verizon Wireless BlackBerry
After SICW, we had a tour of some of Kolkata's most famous markets. It rained lightly most of the day. The massive wholesale flower market (biggest in Asia) was a tangle of muddy paths with countless flower vendors along each side. This market sits on the banks of the river Hooghly (Kolkata's name for the Ganges) in the shadow of the famous Howrah Bridge.
Despite the overcast and smog, the colors were brilliant. The smell of the flowers, mixed with incense, cheap cigarettes, cooking fires and diesel fumes, formed a blanket around us. I just couldn't take enough photos.
And then I got lost. It was my own fault. I hung back to snap a few more images and was separated from the others. They left the flower market in one direction, I in another. I was pretty sure I could get back to the place where the car was parked, but as usual I failed miserably.
I soon found myself standing in the rain without an umbrella at a rail crossing seemingly in the middle of nowhere. I had no cell phone service. I was surrounded by coolies who were naked to the waist, with short lungis hanging to their knees and small towels around their necks.
I did not feel afraid. People in India are overwhelmingly good and kind. If one man among the dozens had treated me inappropriately, others would have stopped him. I was angry at myself for my series of bad decisions, and very, very worried for Peter. He has a strong fear of abandonment. If I start the car in the garage before he gets in, he panics.
It would be dark in less than an hour. I went up to a tiny tobacco and snack shack and eventually found someone willing to lend me his mobile. But he had no service either.
Then I pantomimed to the crowd to convey the location I wanted to find. Some of the coolies seemed to understand me, but no one agreed to take me there until I offered Rs. 100 (about $2.25). Then a man of about 25 beckoned to me to follow him. We started a long walk down the train tracks, stepping from one wooden tie to another. I wasn't confident that we were going in the right direction, but what choice did I have?
A couple of times, I heard a train coming. I jumped off the tracks and flattened myself as far away as possible. The wind whipped my hair as the train passed.
Indeed, the coolies had guessed a different location than the one I had tried to convey in sign language. We were on the way to faraway Babu Ghat.
Then my phone rang. Our guide had finally gotten through to me. She asked me where I was, and I put the coolie on to explain. Then he handed the phone back to me.
"Chris!" She shouted. "Do NOT go with that man! I repeat: DO NOT go with that man! He is taking you to Babu Ghat. Come to the Howrah bridge! Come to the bridge!"
I was confused. I put the coolie back on. This is how their conversation went.
"Please bring Memsahib to the bridge immediately!"
"But Memsahib wants to go to Babu Ghat! I'm taking her there!"
"No, bhai! Take her to the bridge!"
"But Memsahib wants to go to Babu Ghat! Shaking his head, he hung up on her.
Now I stopped walking. I gestured in the direction from which we had come. The guide called again and talked to both of us. Eventually we began to retrace our steps. 30 minutes later, I met up with the rest of the group, paid my coolie, and got into the car to dry off. Peter turned to me and said, "I was scared, Mommy!". I expected him to perseverate on this for a long time, but he didn't react the way he would at home. In "his India", he seemed less afraid that someone might harm me.
Later, we took a chartered water taxi 90-minute ride under and beyond the Howrah bridge. It was dark and rainy, but we were all in great spirits.
During the rest of our time in Kolkata we shopped for books and handicrafts, sampled Tibetan food (Peter LOVES momos!), strolled around the Victoria Memorial, and had a fun ride in a gaudily-decoraated horse-drawn carriage called (logically) a Victoria.
The smog in Kolkata was absolutely appalling. I have never experienced such poor air quality. All of us -- except Peter -- came down with a raging head cold with stinging eyes, streaming nose and raw throat. (Peter did come down with it, mildly, at the very end of the trip). The locals suggested that it might be smog-induced. It was a misery, but our time in India was swiftly drawing to a close.
All three of our traveling companions had some tummy trouble during the trip. Neither Peter nor I had so much as a rumble. Life is good.
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Home to SiCW
Bath mornings were difficult at Gibi's because Peter hated bucket baths (something I love myself). He didn't believe that he could wash himself that way, but he hated it when I did it. He has always had sensory issues and does not like to be touched. Well ... clarification: he loves to be touched but only when he initiates it and only in a firm way (e.g. hugs).
Though he was very proud of how he looked in his Indian outfit, at SICW he initially refused to let anyone take his picture. (This is typical behavior at home). When we went to see the rooms where he lived as a baby and play with the babies currently in the nursery, he was very reserved. He loved meeting all of the massis ("I am Rohit and I come from America") but didn't want to hold any babies because "I might drop them".
After an hour of baby-cuddling we went back to the SICW offices for a special "welcome home". In front of the entire staff, he was garlanded with a cool, fragrant mala of lilies and roses. He didn't like the feel of it and immediately took it off. It took a lot of begging to get him to put it back on for photos, but Sheela Adiga, assistant director of SICW eventually persuaded him. Then we were served delicious Bengali sweets and cold Coke. Peter didn't talk much and responded to questions monosyllabically. It was especially hard for him being the center of attention.
Finally, Peter's records were produced. While we all watched, he paged through all of the updates we'd sent over the years and pored over the photos of him as a baby and younger child. Then came all of his official Indian documents. I read bits to him and explained the rest. He got a little upset when he saw himself referred to as "abandoned" in his guardianship documents. He knew he wasn't abandoned, and clearly this bothered him.
Finally he reached the last page in his file, the surrender document signed by his birthmother. He learned her name and age. He found out that he was born at 10 a.m. He heard the reason why she had to relinquish him. And then ... there was her thumbprint. At first he touched it gingerly with a quizzical look. Then he rested his thumb there, turned to me and said, "Mom. It fits".
Most of the adults in the room were choking back tears. He sat silently for a long while, reading the surrender to himself again and again. Periodically he ran his hand across his eyes in a gesture that can only be described as anguish. He put a finger and thumb up to the inside corners of his eyes to block any tears.
I practiced silent weeping with great external calm. We talked about how this document proved that he really was relinquished, not abandoned. He nodded and was glad.
Peter has always been a crier. The smallest thing can set off an attack of wailing. Most of the time he doesn't shed tears. He seems to have no control over these spells. But this time I saw him doing everything he could to maintain his composure. I told him it was OK to cry, but he said, "I"m not crying, Mom, really.".
"Then why are you wiping your eyes?"
A moment of eye contact and a nod. He knew I knew, but he wanted to keep it private. My public wailer didn't want anyone to see that he was crying.
At that point I went over to Sheela, who has been a wonderful friend all these years, and we both flung our arms around each other and sobbed. She whispered, "It's not fair". I said, "I know, I know". But then we had to pull ourselves together, for Peter's sake. And then it was time to go.
Sheela had been reading this blog and knew that Peter had given Jaya-aunty his treasure box back in Bangalore. She told him that she'd heard he needed a new treasure box and gave him a lovely wooden box with stone inlay on the top, along with a small painting on silk to hang in his room. Peter spontaneously hugged each staff member saying "Thank you, I love you!". He and Sheela embraced for a long time. She kissed the top of his head. "I love you, Peter".
"I love you too, Sheela-aunty. I'll miss you a lot".
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Peter is a Bengali
Gibi is one of the founders of Shishur Sevay, a permanent home for 12 orphan girls led by my peripatetic friend Michelle Harrison, a.k.a. "Mummy". I stayed with Gibi and helped Mummy at Shishur Sevay last year. Since Gibi is known as "Choto Ma" (little Mummy) I was teasingly known as "Lambu Ma" (tall Mummy). But the girls know me best as Chris-Aunty. We were so happy to see each other! I couldn't hug them enough.
We spent our first day in Kolkata mostly hanging out at Shishur Sevay, which meant finding spaces for ourselves in a real-life old woman's shoe. 8 older girls ages 11-14. 4 severely handicapped younger girls. 4 massis (ayas) to care for the youner girls, who need help with every aspect of their lives. Therapists (physical, occupational, speech) to work with the younger girls. A roster of teachers and special educators. A cook and driver. A "housemother". A guard just inside the gates. A loveable watchdog and two rabbits. Did I forget anyone? Oh -- Mummy herself!
Before settling in at Shishur Sevay for the rest of the day, we piled into cycle rikshaws to do some "errands". Kamini's measurements were taken by a nearby tailor for a custom-made sari blouse to match her peacock-colored Mysore silk sari. At Behalla's traditional covered market (a rabbit warren of small shops specializing in different kinds of merchandise) we bought Kamini a cotton petticoat for under her sari. We found coordinating fabric to keep on hand for a second sari blouse in case Kamini grows out of the first one.
Karen and I bought long brightly-colored cotton nighties of a kind not available in the U.S. Gibi bought a new pair of everyday sandals. Peter bought soda and candy, which he shared with everyone. (The joy of buying and sharing helped to distract Peter from his monstrous sensory overload and claustrophobia. All and all he handled it well. The tranquilizer I've been giving him twice a day has really kept him from "freakinf out" in a country with too many people, too little space, too much movement and color and noise for a boy whose emotional stability is tenuous.
Later thaty day, the Shishur Sevay girls asked Mummy if they could get out their collection of pretty saris and dress up -- a favorite activity. Peter immediately sent me to Gibi's for the Indian outfit he brought along -- a gold silk kurta and cream pyjama. The girls decided to keep their saris on for their dance practice. It was great to see the pride in their eyes as they performed their best for us.
Sunday morning, we got up early and came to St. James Church on Park Street for morning service. St. James was the Anglican mother church for all of the Indian subcontinent and Burma until the 1970's. It's a lovely old edifice. I was a practicing Anglican myself for many years, so the order of worship was very familiar. Peter listened to his iPod quietly (I must interject that he has NEVER been able to tolerate this kind of thing at home) and followed me to the alter to take communion. (Yes, friends, I am an atheist, but the pull of familiar ritual was just too great).
Peter kneeled with me at the alter and followed my example in that grave little way he has when he's feeling proud of myself and knows I am too. The priest paused briefly when he came to Peter and laid a hand on his head for a blessing. My eyes misted. Later, they misted again as I listened to the birds chirping a message of hope and peace. India is so full of birdsongs.
After church, we went back to Behalla to spend the rest of the day at Shishur Sevay. Initially we had planned to take the girls on an outing, but Michelle had to drive an hour south to visit one of her girls, who had recently been hospitalized after a violent episode. Michelle's girls have been through so much in their lives, more than they can articulate. Some of their many scars are visible on their bodies, but the worst are invisible.
We had brought quite a few books for the girls from our kids' collections and donated by friends. I read to them and they read to me for a couple of hours. They were avid to continue, but I needed a break so we watched Bend it Like Beckham together. Then we blew up 3 sizes of beach balls and had a rousing game of "keep the balls moving while trying to whack each other on the head". Peter was right in there!
Dinner that night was at the home of another Shishur Sevay board member, Seema. The kids had a particularly riotous time being utterly silly with Seema's two young adult children. Peter and Kamini, both vegetable haters and not fond of spicy food, did incredibly well throughout the trip in finding something to eat and not whining when only Indian food was available.
Peter loved stepping into a readymade extended family in Kolkata. He was a Dada (elder brother) to some and had other Dadas to look up to. Every adult was an Aunty or Uncle except Mummy, who was, of course, Mummy. To the adults, he was Beta (son). This is the Bengali way. More than any other people in India, they relate to each other -- even when barely acquainted -- as family members. Peter has always attached to people quickly and is rapturous when they return his affection. In Kolkata, he found his emotional home. Peter is a Bengali through and through.
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Wednesday, December 8, 2010
Peter in Delhi
I rode with Peter and Kamini and Kamini's parents rode together. This was a first time experience for Peter and the others, and I couldn't wait to see them hanging on for dear life as we zipped in and out of traffic. With all the gleeful whooping, our drivers decided to enhance our exhilaration by playing tag with each other. I don't think I've ever heard Peter laugh so hard.
Peter was surprisingly attentive during the dance performance so I decided to treat him to the dessert we hadn't had time for earlier. Up on the rooftop, he enjoyed two orders of his favorite gulab jamuns in warm syrup while I had a lovely dish of kheer. When we ordered, Peter shared with the waiter and just about everyone in a 50-foot radius that gulab jamuns were his favorite sweet and Mom had said that. He could have "seconds" if he wanted. As always, every face turned in our direction with a friendly smile. My boy is just so darned cute!
Peter adored the breakfast buffet on the morning after our late arrival from Delhi. He made sure to tell each and every waiter that more boiled eggs were required immediately. He put two pieces of bread through the toast machine an extra time to make them nice and dark, then presented them to me in very good voice:
"Here, Mommy, two pieces of toast just the way you like them. Aren't I a good son?"
"Yes, Peter, and modest, too!"
"Thank you, Mommy. I love being modest!"
In addition to the lovely toast and amused glances from fellow diners, I enjoyed 3 big bowls of tapioca "breakfast pudding" and the most amazing banana fritters I have ever tasted.
Just check out the happiness in Peter's eyes as he finishes his 2nd boiled egg. He made sure to tell each of the waiters how perfect they were.
Our walking tour of local streets and alleys near the train station was led by a representative of the Salaam Balaak Trust set up by filmmaker Mira Nair after the making of "Salaam Bombay". SBT's mission is to intercept lost, stolen, sold, runaway or abandoned children at the station and bring them to a safe shelter where they can be evaluated and, whenever possible, re-united with their families. They have achieved re-unification for about 25 percent of the children in their care.
This statistic belies the common claim of many orphanages that there is no way a family could ever be found based on the limited information a lost child might provide. Of course, orphanages get a big bag of loot for every such child placed for adoption. Adoptive parents of children who were "lost in a crowd" (not at all uncommon) realize that there may be birthfamilies in India who might have been reached if only a little effort had been made.
Of course, not all children at SBT want to rejoin their families. Moreover, some "station kids" strongly resist any kind of supervision over their freewheeling lives, which often revolve around drug addiction. In addition to their shelters, SBT also operates several "contact points" where kids can come for medical care, baths, food, clothing and weekly movies.
We visited one such contact point right next to the station, and found several dirty, hardened-looking boys waiting for that week's movie to begin. These were the ones we'd learned to steer clear of for fear of losing our wallets. But Peter didn't see it that way. These boys (who looked much less fierce on second glance) were potential friends to him. He immediately set about giving each one a high-five ("hey, man, cool shirt, how'ya doing?") and handing out all of the candy he had with him.
There's a big difference between giving someone candy because you feel sorry for them and giving it because you want to make friends. These boys knew the difference. They asked Peter's name and told him theirs. When we left the site, they chorused, "Bye, Peter!"
The guides for the SBT tours are young men who were once "station kids" themselves. Our guide was given to a tea-stall owner at the age of 6 so that he could help to support his family. When he was paid with beatings, he ran away, jumped on a train and ended up at Delhi Station. SBT estimates that about 30 unaccompanied children enter the station every week.
Listening to this young man, learning of his hard-won accomplishments, and hearing about his dreams was a very great pleasure. He positively sparkled with joie de vivre. But as we walked with great interest through small lanes, past tumbledown old houses and helter-skelter assortments of streetside merchants, Kamini and Peter became bored and tired.
There were two other young men from SBT with our group, and one of them overheard Peter telling me that his legs were tired and sore. He and his counterpart each took one of Peter's hands and walked beside him, chatting with him like big brothers. When we got to SBT's main office, they whisked Peter away to a back room and called some of their comrades to come and join them. When I went to look for him, he was at the center of a smiling crowd of admirers, yakking away.
"Don't worry, ma'am ... Peter is safe here with us".
"Yeah, Mom, go away. I want to be with my friends."
(The photo shows Peter with the guide for our walk ... who by the way was re-united with his family at the age of 16 and now, at 20, supports a sister who lives with him.)
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Sunday, December 5, 2010
Magical Agra
A home for mentally handicapped people, elderly destitutes and orphans run by the Missionaries of Charity ...
Delicious buffet lunch and "battery rechargingat a 5-star hotel near the Taj ...
Two magical hours at the Taj ...
Several 5x7 photos of us taken by a licensed photographer at the Taj, only $2.20 each and worth much more to us ...
A visit to a government-run workshop for artists creating works of art using the same marble inlay techniques employed by their ancestors when creating the Taj ...
A frenetic but productive half hour in a shop filled of affordable handicrafts, including Peter's long-awaited marble Taj Mahal replica ...
A brief but eye-opening wait on a platform at the Agra train station where dozens of street children harassed us for food and money. We were waiting with a representative of the company that supplied our car and guide. He told us that most of the children were addicted to drugs, especially inhalants. We found this hard to believe. They were so young!
Then, right in front of us walking a pretty little girl of 8 or 9 in dirty clothes, with tangled hair, and covered in grime from top to bottom. She had a ragged dupatta (scarf) around her neck and was holding one end of it to her nose. I thought she was wiping her nose or using the cloth to block out the nasty smells that pervade many train stations. Then the representative pointed out the dried Wite-Out all over the girl's hands. Apparently this is the cheapest and most accessible inhalant. It was heartbreaking.
India. The Taj, ever luminous and breath-catching. A little girl far from home begging for food and huffing Wite-Out. And in between? A whole universe of humanity, beside us and around us and within us.
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Another Peter
Oh my, I am so far behind! I still have to share photos and anecdotes from Agra, Delhi and the beginning of our time in Kolkata.
I am currently at Shishur Sevay, Michelle Harrison's home for girls in south Kolkata. Peter and I are staying with the family of one of Shishur Sevay's board members, and the Jorgensens are staying with another. Both homes are just a few steps from Shishur Sevay itself.
Yesterday I met a new teacher at Shishur Sevay who has a son and a daughter much like Peter -- born with genetic mutations leading to a variety of developmental and health issues. On the way to visit a tailor to have Kamini's sari blouse stitched, the teacher pointed out her son and daughter waving from the balcony of their apartment. When I looked up and saw her son, I was absolutely floored. He is the spitting image of Peter.
Both boys were very small for gestational age. Both have had severe breathing and gastrointestinal issues. Both have microscopic genitals and shriveled testicles that do not work. Her son is 20 and like Peter, he has never had any signs of puberty. Both boys are mentally retarded (though Peter is substantially more functional). Most interesting of all, both boys suffer from severe blood disorders.
The teacher's son has chronic idiopathic thrombocytopenic purpura (ITP) which means that his body does not produce enough platelets. He has had many severe bleeding episodes. There is no treatment for this condition. The teacher was told two years ago that he would not survive another year, but she sought help from outside traditional medicine -- both ayurvedic and homeopathic. The homeopathy seems to be working, although the course of ITP is totally variable and he could be in a period of naturally higher platelet production.
Many of the people here at Shishur Sevay have met the teacher's son and when they met Peter they were amazed at the resemblance. Peter's blood disorder is much more serious, though. He has failure of all 3 blood lines: white cells, red cells AND platelets. We found out last week that his test for Fanconi's Anemia surprisingly came back NEGATIVE. This is a bit surprising with all of his manifestations that match Fanconi's, but not totally unexpected. He DOES have some sort of genetic syndrome, but only two or three of them (like Fanconi's) actually have names. We could do a chromosome study and identify exactly where the abnormalities are in his genome, but that would tell us nothing about his actual condition or prognosis. The teacher's children have also been diagnosed with unnamed genetic syndromes. Fanconi's is the most common, and even it is an extremely rare "orphan disease".
From what everyone is telling me, these types of disorders (known as autosomal recessive, meaning that both parents carry but do not suffer from the disorder) are more common in India than many other places. This is due to a higher level of consanguinity between husbands and wives. The caste system (which includes 4 major castes and thousands of subcastes) has led to a high degree of "inbreeding" across decades and centuries. When a random mutation occurs, some of the "founder's" progeny will carry it. As the generations accumulate, the mutation will spread within the community and eventually two people with the mutation will marry. Then there is a one in four chance that each of their children will suffer from the full-blown genetic syndrome.
The role of consanguity in genetic syndromes is also exemplified by the Amish in America, Ashkenazi Jews the world over, and Afrikaaners in South Africa. All of these groups have a much higher incidence of named and unnamed genetic disorders in their populations.
None of this really affects Peter's outlook. His bone marrow has failed, only 5% of his marrow cells are still present, and he will not likely survive too long. Right now he is still entirely asymptomatic, quite amazingly so. I had expected to see more tiredness due to his severe anemia, but his stamina seems to be the same as it's always been. We just have to go from day to day and make the most of every moment we have.
Peter continues to touch everyone's hearts here. When he reaches out to others, they immediately reach back to him with a warm smile and kind words. He is so proud that he is back here with "his people". My traveling companions and I frequently stop and look at each other in amazement as he makes friends with yet another stranger. I have so many tales to tell!
Tomorrow we will go to Peter's orphanage (Society for Indian Child Welfare) where everyone is waiting joyfully to welcome him home. He can't wait to slip into his favorite golden kurta-pyjama and present himself at their door.
More soon -- photos, anecdotes and ruminations. This trip has gone so fast!
I am currently at Shishur Sevay, Michelle Harrison's home for girls in south Kolkata. Peter and I are staying with the family of one of Shishur Sevay's board members, and the Jorgensens are staying with another. Both homes are just a few steps from Shishur Sevay itself.
Yesterday I met a new teacher at Shishur Sevay who has a son and a daughter much like Peter -- born with genetic mutations leading to a variety of developmental and health issues. On the way to visit a tailor to have Kamini's sari blouse stitched, the teacher pointed out her son and daughter waving from the balcony of their apartment. When I looked up and saw her son, I was absolutely floored. He is the spitting image of Peter.
Both boys were very small for gestational age. Both have had severe breathing and gastrointestinal issues. Both have microscopic genitals and shriveled testicles that do not work. Her son is 20 and like Peter, he has never had any signs of puberty. Both boys are mentally retarded (though Peter is substantially more functional). Most interesting of all, both boys suffer from severe blood disorders.
The teacher's son has chronic idiopathic thrombocytopenic purpura (ITP) which means that his body does not produce enough platelets. He has had many severe bleeding episodes. There is no treatment for this condition. The teacher was told two years ago that he would not survive another year, but she sought help from outside traditional medicine -- both ayurvedic and homeopathic. The homeopathy seems to be working, although the course of ITP is totally variable and he could be in a period of naturally higher platelet production.
Many of the people here at Shishur Sevay have met the teacher's son and when they met Peter they were amazed at the resemblance. Peter's blood disorder is much more serious, though. He has failure of all 3 blood lines: white cells, red cells AND platelets. We found out last week that his test for Fanconi's Anemia surprisingly came back NEGATIVE. This is a bit surprising with all of his manifestations that match Fanconi's, but not totally unexpected. He DOES have some sort of genetic syndrome, but only two or three of them (like Fanconi's) actually have names. We could do a chromosome study and identify exactly where the abnormalities are in his genome, but that would tell us nothing about his actual condition or prognosis. The teacher's children have also been diagnosed with unnamed genetic syndromes. Fanconi's is the most common, and even it is an extremely rare "orphan disease".
From what everyone is telling me, these types of disorders (known as autosomal recessive, meaning that both parents carry but do not suffer from the disorder) are more common in India than many other places. This is due to a higher level of consanguinity between husbands and wives. The caste system (which includes 4 major castes and thousands of subcastes) has led to a high degree of "inbreeding" across decades and centuries. When a random mutation occurs, some of the "founder's" progeny will carry it. As the generations accumulate, the mutation will spread within the community and eventually two people with the mutation will marry. Then there is a one in four chance that each of their children will suffer from the full-blown genetic syndrome.
The role of consanguity in genetic syndromes is also exemplified by the Amish in America, Ashkenazi Jews the world over, and Afrikaaners in South Africa. All of these groups have a much higher incidence of named and unnamed genetic disorders in their populations.
None of this really affects Peter's outlook. His bone marrow has failed, only 5% of his marrow cells are still present, and he will not likely survive too long. Right now he is still entirely asymptomatic, quite amazingly so. I had expected to see more tiredness due to his severe anemia, but his stamina seems to be the same as it's always been. We just have to go from day to day and make the most of every moment we have.
Peter continues to touch everyone's hearts here. When he reaches out to others, they immediately reach back to him with a warm smile and kind words. He is so proud that he is back here with "his people". My traveling companions and I frequently stop and look at each other in amazement as he makes friends with yet another stranger. I have so many tales to tell!
Tomorrow we will go to Peter's orphanage (Society for Indian Child Welfare) where everyone is waiting joyfully to welcome him home. He can't wait to slip into his favorite golden kurta-pyjama and present himself at their door.
More soon -- photos, anecdotes and ruminations. This trip has gone so fast!
Thursday, December 2, 2010
Crabby
He has now perseverated endlessly over:
The vegetables in the omelet he couldn't eat because it had vegetables
The smell of the toilets at Agra Station
Any fly anywhere, anytime
Hawkers and children who have the nerve to "bother him"
Being touched by anyone, anywhere, anytime
Stones in the shade that make his feet feel cold
Stones in the sun that make his feet feel hot
Not wanting anyone to take his picture, anywhere, anytime
If you don't know what perseverate means, look it up on Dictionary.com. You might not know what it means but you can look it up. You should look up "perseverate" to see what it means. I told you that Peter perseverates so you may have to look in the dictionary for a definition.
I managed to snap this shot of Peter with Kamini at Fatehpur Sikri. It's sunny, breezy and cool today -- a perfect day to see the Taj, which we'll do after lunch.
Peter tends to perseverate. Do you know what that means? Maybe you should look it up.
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Wednesday, December 1, 2010
OMG how fun is this??!!
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On the rooftop
Small open-air rooftop restaurant, blue "fairy lights" all around, cacophony of street vendors, car horns and children's laughter below.
Quick dinner before going to a "Dances of India" performance at a nearby hall ... by autorikshaw! More on that to come!
MOM! STOP TAKING MY PICTURE!!!
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Tuesday, November 30, 2010
Life Saver
Of course, most of what I bought yesterday were clothes for me, from a Westside store on Commercial Street. Westside is a chain with quality and pricing much like JCPenney at home. I got a gorgeous Christmas outfit, black and red with beading and tiny mirrors. The thin churidar pants that bunch at the ankle are currently the in thing, and I love them. They now sell Lycra ones that have plenty of length even for someone who's almost six feet tall. I got a pair of black ones and two cute knee-length kurtis to go with then, in the latest style. And I couldn't resist two simpler kurtis in great colors to wear with jeans. I always kick myself for not buying enough when I'm here. There should be less kicking after thid trip. All told, I paid about 90 dollars for one fancy 3 piece outfit, one pair of knit churidars, two medium-fancy kurtas, two simpler kurtas, and a black chiffon dupatta with some sparkle. The outfit would have been about 75 dollars on Devon Avenue in Chicago ... but I digress.
In the shop pictured, Peter bought a sparkly little treasure box for himself. He initially fixed his mind on an overpriced chess set (as if!) Carved from marble, then had one of his "it's not FAIR, it's MY MONEY" meltdowns when I interceded. I could see the wheels turning in the shopkeeper's mind after that, and he expertly guided Peter to a display of small, inexpensive eye-appealing items, then gave Peter his treasure box for half price. People do seem to "get it" once they interact with him.
Peter had a memorable encounter on Commercial Street that will be forever memorialized as "the Lifesaver incident". We were waiting to cross the street when a young leper came rolling toward us on his little wheeled court. He was very clean and neatly dressed but his legs ended in stumps above the ankles, and he had essentially no fingers. He didn't beg loudly, just sat next to us and made eye contact.
Peter couldn't help looking at him and I knew that we had to give him something. The kids could never just walk away from someone in such clear need. I said to Peter, "quick, get into your backpack and give him a Lifesaver". (We have a bunch of the large individually wrapped ones in tropical flavors). Peter took out three and put them in the young man's cup.
The young men looked at the Lifesavers and tried to pick up one of them to unwrap and eat, but his hands couldn't manage it. Peter looked down and said, "Mom, he needs me to open it, is it OK if I open it for him?
"Of COURSE it's OK!"
To the leper: "What flavor would you like? Oh, OK, I think you'd like ... Pineapple".
He carefully unwrapped the Lifesaver and put it between the young man's palms. Pop - it went into his mouth and he smiled broadly when he tasted it.
"He needed help, mom. I helped him.". To the leper: "do you like it? I gave you my favorite flavor and there's only two left but I wanted you to have one."
To me: "see, mom? He likes it!"
Just a tiny encounter, nothing stupendous, but where other childred I've traveled here with would have recoiled, Peter seemed oblivious to the young man's deformity. After we crossed the street, he asked me why the young man had no feet or fingers, and I explained leprosy in simple terms.
"He won't get better, Mommy?"
" No, he won't get those parts of his body back again"
In the evening we went to visit my Indian brother and sister-in-law at their flat. Big surprise! Their two daughters, my two nieces who I've known all their lives, were here for a visit! (Both live in California). Niece 1 had her husband and new baby along ... another beautiful baby cousin for Peter to love. He had attended my older niece's wedding in CA a few years ago and even sat next to the mandap so he could hand things to the pandit (priest) as needed. The priest seemed to immediately recognize that Peter had special needs, and treated Peter with the same affection that was lavished on him by my Indian family.
I lived with my Indian family for a year in '73-'74 as teenage exchange student. They lived in a small town in south India then. It was a tough year in many ways because of culture shock and recurring homesickness, but 37 years later we remain very close. Through me, my Indian family have claimed my children as family members, providing them with the Indian "kin" so many adoptees yearn for,
Niece #2 is a bio-engineer in San Diego. She's here for her wedding, only 3 weeks hence. It is a semi-arranged marriage. The families conferred, the young people talked on the phone, the horoscopes matched, so they were engaged. Then they were able to date for several months before the wedding. Based on the pictures I saw, the romance is in full bloom and both partners are more than ready to make things legal. My younger niece just glows!
Peter decided before we went to my brother's house that he wanted to give Jaya-Aunty his new treasure box.
"But Peter -- you just bought that for yourself. Jaya-Aunty doesn't really need it. She has so many pretty things at home".
"No, mom, I want to give it to Jaya-Aunty. I love Jaya Aunty, and it's MY BOX!"
How could any parent argue with that?
The day was made perfect for Peter with takeout pizza from PIzza Hut (exactly the same as in the US), a chance to light butter lamps in the family's "God niche", and a gift of rupees from Jaya-Aunty".
When it was time to leave, Peter went around the room to each relative, giving them a hug, a kiss and an "I love you". Many tears were suppressed. Jaya whispered to me, "he's so healthy -- are you absolutely sure ... ?"
And in the car on the way home:
"So can we go back to the toy store and buy the Nintendo DS game I wanted?"
"Peter, you know what we talked about. You're not buying anything here you can get at home".
"Please? Please, Mom? PLEASE!!!"
"You know what I said".
"IT'S NOT FAIR!!!! It's MY MONEY! You never let me have ANYTHING!"
Etc.
Etc.
Etc.
All in a normal day.
Today we're flying to Delhi so we can go to Agra to see the Taj and visit Fatehpur Sikri tomorrow. It's going to be a killer day with a 6:15 am train, returning to Delhi at or after 11 pm. But oh, the pictures and memories we'll bring home.
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IMG00031-20101130-1355.jpg
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Monday, November 29, 2010
Today in Mysore
Before entering the city, we drove up Chamundi Hill to the famous temple there -- an important Hindu pilgrimage site. Peter got his first lesson in what happens when you show interest in the postcards and tacky gewgaws that are thrust in your face when you arrive at a tourist site. Consequence 1: your mother drags you away with perhaps a touch too much force in her loving grasp. Consequence 2: the vendors follow just inches behind you and refuse to take no for answer until your mother is forced to ask them what part of no they don't understand. Consequence 3: your mother firmly tells you to keep your eyes on your shoes the next time, making you very upset because you didn't do ANYthing and she is yelling at you for NO REASON and you didn't want to come to nasty old India anyway.
The kids were very psyched to shop today so we went to a government handicrafts emporium to pick out a few special things for ourselves and others. Peter chose a nice wallet that won't fit American money but shut up mom it'll fit and why won't you leave me alone and get out of my business for once?
Peter has always had a soft spot for Lord Krishna, so he happily posed for a photo next to the first statue of Krishna he laid eyes on. It was much too large to go home with us even if we carried it in our own backpack, and PLEASE mom, I promise I'll carry it all by myself because it's really not that heavy and see, I can lift it myself, OK, OK, don't yell at me, I'm putting it down but it's not fair, you never let me do ANYthing and all you ever do is YELL AT ME!
Then we had lunch at a cute little Austrian cafe that was much harder to find than expected. Grilled cheese sandwiches (with basil and tomato for grownups) really hit the spot, especially with chocolate milkshakes to wash them down.
Peter was awestruck at the palace. Sometimes when I expect him to be quickly bored and fidgety he surprises me with his appetite for seeing everything there is to say.
We're on our way back to Bangalore now. Yet another unforgettable day.
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Sunday, November 28, 2010
Lunch with Namboodiri Uncle
Another wonderful day with a boy who seizes every new experience and turns it into a person-to-person adventure.
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Friday, November 26, 2010
Sonic the Hedgehog Does the Kerala Backwaters
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On the way to Alleppey
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From rural Kerala
This is a magical place where crows and roosters wake us with their raucous version of the Halleluia Chorus, accompanied by an orchestra of crickets.
I wish I could describe what it's been like watching Peter connect with every person he meets ... From the bored cops at the airport to a group of fishermen pulling their boat above the tide line. Peter saw the fishermen straining against the weight of the heavy wooden boat. One of them noticed him, smiled, and made a joking gesture to come and help.
Peter was immediately at his side. Without skipping a beat, the fisherman showed Peter how and where to grab the boat and made room for him to pull with them. Peter got that little solemn look of his that says, "They needed me". My fellow travelers and I keep misting over because these incidents happen many times a day.
Peter needs India and India needs Peter. Peter loves "his people" and they unreservedly love him back.
Here's a shot of Peter enjoying a cup of tea after lunch yesterday. He savors everything!
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Monday, November 22, 2010
The Reluctant Tree Planter
Peter was quintessentially himself at his tree planting this morning. When the time came to go, I noticed that he was wearing a favorite shirt that was a size too small and had a stain on the front. I should never have said anything, but I lost my self-control and told him he should put on another shirt. Oops! He protested very shriekily for a few minutes but then emerged from his room wearing the "Jai Ho" shirt he won down on Devon Avenue when they were promoting A.R. Rahman's tour. (For those of you who don't know, "Jai Ho" is the final song in "Slumdog Millionaire", and A.R. Rahman composed the music for the movie).As Carl and Peter and I got into the van, I could hear tell that Peter's anxiety was rising. Sure enough, when we got to the park, he refused to get out of the car. This time it was Carl who said, "Peter, you HAVE to get out of the car!" despite a possible backlash. Peter did, but when the little ceremony began, he buried his head in his dad's side. And then along came big brother Leo to save the day. Peter immediately perked up, interrupted the head of the Park District in mid-sentence, and said, "Hey, this is my big brother Leo!" A few seconds later, there was a quiet "I love you, Leo" ... "I love you too, Peter".
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November 22, 2010
The Skokie Park District is proud to honor Peter with this tree planted in his name int he Lorel Park outfield. At a later date, a leaf plaque will also be placed on the tree wall inside the Weber Leisure Center next to the front desk.
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| Leo helps Peter shovel mulch |
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| Peter remembers his thank-yous |
Then the mayor said a few words, and some pictures were taken (with increasing difficulty, as Peter got into one of his "No! Don't take any pictures of me! " moods). But despite the usual Peter histrionics, Peter was very proud to be honored. For the past few days, he's been telling everyone he met about the tree, and when we've mentioned it, he's gotten that quiet pursed-lip proud look he gets when he feels good about himself but also self-conscious. He was thrilled that his friend Toby Welch (Skokie adoptive mom and organizer of the event) was there, as well as neighbors Jan and Keith Liscio, who along with their children have made him a part of their family. I am sure he will be telling people in India all about it, especially with the photos I'm bringing along on my Blackberry.
For me there were two truly amazing moments during this brief event. One was the sudden appearance of Leo, who was late to work but came anyway to be there for his brother. Peter's face lit up like the 4th of July the moment his brother arrived. The other was a warm hug from the publicity manager from the Park District, who whispered in my ear, "We all want you to know that you are doing an amazing thing for your son ... the right thing. Don't ever let anyone tell you different."
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| Peter with friends Toby, Keith and Jan |
Peter continued in his normal mode as I thanked the people who had organized the event and told them how much we'd enjoy visiting the new tree in the spring. Peter interjected, "But Mom, I don't really go to the park anymore." (That's my boy!) And then he went over to Jan to tell her to watch the tree so that a neighborhood boy he dislikes won't uproot it and throw it away. What a kid. He riffed on that all the way home, too.
The weather today was warm and damp, almost like a spring day in look and feel. This whole autumn has been glorious -- incredibly mild, incredibly sunny compared with the norm. The skies have been brilliantly blue, the sunsets have been spectacular, and even when it's rained it's been warm. I know I'll always remember this as "Peter's autumn".
Over the weekend, Peter got into one of his "my life is miserable" modes and said, "... and I can't even ride my BIKE because my BLOOD is SICK!" Carl and I exchanged a quick glance and then I said, "Oh, it's OK now, Peter. You can ride your bike if you want." "But -- you said --" "It's OK, you can ride it now." One more tiny decision that wasn't premeditated, just the right thing to do.
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| In the middle: Carl (dad), Peter in his "Jai Ho" shirt, brother Leo dressed for work, and the Mayor of Skokie |
THANK YOU, TENDER-HEARTED TOBY!
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