Life Saver

Here's a photo of Peter and traveling companion Kamini at a shop on Commercial Street in Bangalore. The kids just love to spend their rupees on little treasures for themselves and their friends. in this shop, they selected and paid for their own items on their own while I selected and haggled over a wall hanging and several pillow covers. I'm trying to do all my Christmas shopping here.

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.
Sent from my Verizon Wireless BlackBerry

IMG00031-20101130-1355.jpg

Peter LOVES Indian ice cream (and there's a brownie in a bag in his lap!)
Sent from my Verizon Wireless BlackBerry

Today in Mysore

We had an early breakfast at our guesthouse in Bangalore and left at 7 a.m. For the 3.5 hour drive to Mysore. Mysore was formerly the capital of a princely state and it boasts an opulent palace built in the very early 20th century after the original palace burned during a royal wedding.

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.
Sent from my Verizon Wireless BlackBerry

Lunch with Namboodiri Uncle

Peter charms our host after lunch at a Namboodiri brahmin heritage home near an elephant preserve in the hills of western Kerala.

Another wonderful day with a boy who seizes every new experience and turns it into a person-to-person adventure.
Sent from my Verizon Wireless BlackBerry

Sonic the Hedgehog Does the Kerala Backwaters

This is the best place on earth to while away the hours with your Nintendo DS. Travel is SO broadening!
Sent from my Verizon Wireless BlackBerry

On the way to Alleppey

When we're going from place to place, Peter likes sitting in front with our drivers. Here we're on our way from Cochin to Alleppey for our half-day houseboat ride through the Kerala backwaters. He's psyched for another day of seafood!
Sent from my Verizon Wireless BlackBerry

From rural Kerala

Yesterday's detailed update seems to have vanished into thin air, and there's no time to reconstruct it before we set out on our backwaters houseboat cruise in a little while.

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!

Sent from my Verizon Wireless BlackBerry

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". 

Peter was given a gift bag with a card signed by friends, a Park District jacket which he refused to put on, a baseball and $20 to spend in India ... EAGERLY accepted!  There was also a copy of the little speech that was given at the start:

--------------------

November 22, 2010

We are here today to recognize Peter Futia for his dedication and contribution to the Skokie Park District and Skokie Youth Baseball.  Peter's enthusiasm has inspired many baseball players to play their best at Laurel Park.

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.
--------------------

Leo helps Peter shovel mulch

Then it was time for Peter to shovel some mulch over the tree, a healthy-looking buckthorn that will flower and produce berries next year.  It's well-prepared for winter and I have no doubt that it will be gorgeous in the spring.  Well, no surprise, Peter didn't want to do any shoveling.  I said, "Leo!  Help him!" and Leo put his hands on the shovel next to Peter's and sure enough, Peter happily shoveled ... lots and lots.

 

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.



Peter with friends Toby, Keith and Jan

 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."



 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.



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!

Just another day

Peter picked out his clothes for school today before he went to bed last night.  He chose his nicest outfit because his special ed group had their self-cooked Thanksgiving luncheon today.  Apparently the tables they set looked as good as the food.  It's funny -- Peter usually pitches a fit when we ask him to wear his dress pants and a polo shirt.  But when he does it himself, it is with great dignity.

I zipped over the 7-Eleven just now with Peter in tow to buy some envelopes.  Peter bought himself a Slurpee bigger than several New England states, then went out to the car while I paid for my envelopes.  The (Indian) people who run our 7-Eleven, just five blocks from home, have known Peter since he was 6.  They are the ones who gently taught him about sales tax after we stopped them from covering the sales tax without telling him.  Natural and logical consequences, right?

So suddenly the clerk leans across the counter and grasps my hand.  "We know", he says.  "We know".

I raised my eyebrows in surprise.  "You know Cameron?  He's the one who told us".  (Cameron is another high school student in our neighborhood.  How he came to know is a mystery, but it does seem that news like this travels ... which is not a bad thing.)

I was so surprised -- and touched -- by the kindness of the clerk's gesture.  Tears started welling up in my eyes.  "We love him so very much".

Still holding my hand ... "We do too.  He's our buddy!"  Squeezing my hand, tears in eyes ... "We are so sorry."

We both see Peter get out of the car, and he drops my hand.  "Say, will he be here before you leave for India?"

"Oh, I'm sure he will.  You know how money burns a hole in his pocket".

"Good.  We have some rupees we want to give him."

Peter, from the door:  "Mom!  Hurry up!  What's taking you so long?  God!"

The saying "from the sublime to the ridiculous" comes to mind here, but I can't decide which part is sublime and which part is ridiculous.  I do have a funny mind-picture for you, though. I had asked the hematologist what to do if Peter had a nosebleed, say, on the plane.  He told me that the packing material used by hospitals isn't available in drugstores, but that many people use junior size tampons.

Guess what's now in my travel bag?  Guess what I had to stuff up my nose to make sure it would fit?  Guess what hung down from my nose after I put it in?  I don't think Peter would know a tampon if he were hit over the head with it, so I'll just tell him the string is for pulling it out.  Which it is. 

A tree for Peter

Today I got a call from a local friend and fellow adoptive parent, Toby Welch.  Toby and her husband have 2 kids adopted from India, and the whole family traveled with me on my last adoptee heritage tour to India.

We've socialized with Toby and her family from time to time over the years, and she's also gotten to know Peter during baseball practices at our local park.  Peter has never been interested in playing a sport, but during baseball season he loves riding his bike to Laurel Park and helping the coaches in whatever way he can.  Peter loves to be of service, and he's endeared himself to many people this way.

Toby decided that she'd like to honor Peter for all his help at the park, so she called up the Skokie Park District and enquired about the possibility of planting a tree in his name.  She wanted to do it now, while Peter could enjoy being honored, rather than later.  The Park District said that it's not too late to plant a tree, so as a result, the tree planting is on for this Monday at 11:00 a.m.!

The tree will be planted before Monday, but they'll save some shovelfulls of dirt for him to add at the end.  A couple of people from the Park District will make little speeches.  Later, when the tree leafs out, a few new leaves will be taken and bronzed, then hung on the wall at the Park District's Weber Center along with a plaque dedicated to Peter.

I can't think of a good way to express how much this means to us.  Local friends, if you can join us, Laurel Park is off Oakton a few blocks to the northeast of Niles West High School. 

Watch this space for photos

The Joy of Today

I woke up with a little tickle in my throat today, so I cancelled my dinner plans to allow for more rest.  After school, Peter had a big bipolar meltdown when I refused to give him (again) the allowance he got on Sunday.  Then it was time for a haircut, not Peter's favorite activity at the best of times.  And so the meltdown continued. 

"My hair is FINE!  It's FINE!  I HATE haircuts!  I don't CARE if my hair is messy for India!  I HATE India!  I'm not going! Why can you just leave me ALONE?"

(lather, rinse, repeat about 100 times)

Eventually it segued into its final act: "Everybody HATES me!  Why do I have to have bipolar?  It's not FAIR!  I HATE bipolar!  Nobody loves me in this family!  Why do I always have to be in special ed?  Nobody ELSE is in Special Ed!"

And then the finale:

"Moooommmmmyyyyyy ....." (finally coming to me for consolation)

Mind you, he loves special ed, and he certainly wants to come on the trip to India.  He just didn't get something he wanted, and then he had to get a haircut.  Welcome to my life.  (Fellow parents of bipolar kids, I know it's your life too).

In the car on the way to the salon I mentioned that I would be home for dinner.  Would he like me to make him grilled cheese?  Eggs?

No, neither of those.  He wanted homemade pancakes.  On the BIG griddle (groan, more cleanup).  Yes, he'd cook the sausages while I did the pancakes.  OK, he'd bring up the griddle for me.

There is a Petco next to the hair salon, and the moment he saw it he asked if we could go inside after his haircut to see the animals.  By the time we got there he was his rapturous self again.  He walked over to every small kid in the store, crouched down, took their hands, and said, "Hi, I'm Peter!  What's your name?"  (Little kids follow him like the Pied Piper.  I can't wait until we make our orphanage visits in India).

And then there were cats.  A fat 9-year-old male whose owner had recently died.  Oh, so much conversation around that!  Two orange and white youngsters who were dying to be played with.  And best of all -- one of the employees had brought her young cat to work with her, and he was walking around after her on a LEASH!  This cat definitely thought he was a dog, except when he scampered up on a high-rise kitty palace and refused to come down.  Peter couldn't get enough of him.

It's so easy to make him happy.

Since Peter gets a dollar for sitting through a haircut without complaining (which he did, with the help of a cold bottle of water from the salon), he had to stop at 7-Eleven on the way home so he could spend it.  He also had his dollar for getting himself up and out in the morning without help.  Before browsing, he had to give the two Indian guys behind the counter high-fives.  They see him almost every day.  Then I saw him wandering all over the store deciding what to buy.  I never know how many circuits he's going to do before he hops back in the car with a mile-wide grin on his face.  This time he was quick, and his grin was for a big bag of the latest variety of Cheetos.

I love it when he's happy.

At home I threw together a warm caramel apple pancake topping and whipped up a batch of my "extra love" dinner pancakes.  Peter cooked the turkey breakfast sausages to perfection. It was all delicious. 

While I was making the topping, Peter did his usual browsing on eBay and Amazon for used computer games, DVDs, and video games.  He's finally learned that the final price always includes postage.  That took a while.  Now he keeps an eye out for items with free postage.  Today he found a 4-DVD set of one of his favorite cartoons for only $10 -- "and free postage, too, Mommy!"  I said, "Wow!  That's great!  As soon as you save up $10, you let me know and we'll order it right away!"

If this exchange had happened earlier, he would have perseverated on "I never get ANYTHING!  Everybody is so MEAN to me!  You HATE me!  How come LEO gets everything he wants?"

Mind you, Leo never got everything he wanted, not by a long shot, and now he works 50 hours a week so he can spend his money as he likes. 

But you never, never, ever argue with a bipolar person when they're having a meltdown.  Silence is the ONLY option.  Earlier I had gone into silent mode while he was ranting about the haircut.  Eventually he yelled from his bedroom, "You don't even LISTEN to me!"  I counted to 5 and replied, "I'm listening ... I'm just not answering".   And now a quiz: was this a good thing to do?  NO, it was NOT a good thing to do.  When will I learn?

But that is all past us now.  It is a happy evening.  The dishes are done.  We leave for India in 6 days.  I just picked up a prescription for a mild sedative that he'll take throughout the trip.  No, not related to his bone marrow failure, but something I had planned for all along.  His psychiatrist "gets it".  We don't want him to be woozy, just a teensy bit loose.  Then both of us will have a good time.

It will definitely be better if he doesn't scream "Leave me alone!  I hate you!  Don't touch me!" in the street while we're in India.  They're really sensitive right now about foreign adoption, with the tendency to see us as kidnappers with big wallets.  Yeah, I'll be carrying his adoption papers.  He's too precious to lose.

Caramel Apple Pancake Topping

Peel, core and slice 1-2 apples per person

Toss apples with:

• Enough flour to lightly coat them
• Apple pie seasoning to taste
• A few dashes of salt
• As much brown sugar as you want (we like Splenda Brown Sugar Blend for Baking instead)

Melt a tablespoon or two of butter in a deep skillet with a lid (we like lowfat buttery spread instead).  Throw apples into the skillet.  Add a squirt or two of lemon juice to accentuate the apple flavor.  Stir and fry over medium-high heat until the sugar has melted and the apple slices are evenly coated with the flour/sugar/spice mixture.  Cover tightly and reduce the heat to low.  Continue braising for another 20 minutes, until the apple pieces are just tender and the sauce is thick.  Stir and serve hot with pancakes, waffles or french toast.


Mom's "Extra Love" Dinner Pancakes

Measure out enough "Buttermilk Complete" pancake mix to make 4 pancakes per person.

Beat as many eggs as there are people in a small bowl until well-blended.  (Yes, I know it's supposed to be COMPLETE.  But this is the "extra love" part!)

Pour the eggs into a 2-cup measure.  Add enough milk (we like 1%) to yield the amount of liquid suggested for the number of pancakes you are making.  (Yes, I know the box calls for water.  See above!)

Add the liquid ingredients to the dry mix and whisk until most of the lumps are out.

I don't need to tell you how to cook pancakes.  Do them the way you like them.  We like to use a 1/3 cup measure to make big ones, about 3 per person.  With the extra eggs and milk they rise up nice and tall.  You may want to turn the temperature down just a bit to make sure that the center is cooked before the outside gets too brown.

These pancakes don't leave you feeling hungry an hour after dinner.

Photos for our trip to India

I just went digging through old photo albums looking for photos of my first sponsored child, Maria Pinky Tesra Kanji.  When we're in Kolkata in a few weeks, we'll be taking Maria and her family out to breakfast at the world-famous Flury's cafe and pastry shop.  The people at Children International (the sponsorship program I've been working with since 1986) are doing a feature article on my sponsorship journey in their spring 2011 newsletter.  Maria was 4 years old when I began sponsoring her in 1986.  Now I will meet little Moutushi, who just turned 6.  I began sponsoring her just a few months ago.  In between I've had four other sponsored kids, and I've managed to meet all of them at least once (often more than once).

The folks who work with Children International in Kolkata have just contacted Maria to interview her about our decades-old relationship, and the impact that being sponsored had on her life.  My summary of that impact is that the common saying is true: if you educate a boy, you educate a man, but if you educate a girl, you educate a family.  Maria is so proud of her girls, and her #1 priority at all times is their education.  The social service agency in Kolkata will also be filming my meeting with Moutushi, who will be brought into the city from her remote village for the occasion.  Usually I like to meet my kids where they live, but there just isn't time on this trip.  Since Peter will be with me, I didn't want to miss this chance for him to meet Moutushi too.

I'm bringing photos to India on my Blackberry this time instead of carrying a little album.  I thought it would be nice to scan in all the photos I have of Maria so that she and her husband and daughters can enjoy them during our breakfast.  This required going through dozens of photo albums page by page, pulling out photos that I'd carefully saved in chronological order.  Unfortunately, I've lost the very earliest ones, but I do have at least 8 or 9 still in my possession.

But oh oh oh ... the hundreds of photos of my sweet Peter as an infant, toddler and little boy.  Yes, I knew I had them, but who can remember all those times and places, events and people?  He was a beautiful, perfect, amazing little boy with a laughing face and glowing eyes.  I took so many photos of him until he was about 8.  Then the flow decreased because he was overcome with his bipolar disorder and refused to let me photograph him.  During the transitional years from 6-8, he looks so sad in all his photographs.  His eyes are shadowed.  His mental illness has stolen so much from him.  Seeing him so happy and stable now gives me so much joy.  I want to hold onto him forever, just the way he is.

I had to put the albums away.  Turning from one page to the next in a random album, sobs of terrible loss rose in my throat.  Bipolar disorder robbed my boy of happiness for so long.  Now time is stealing his days. 

Peter's pediatrician called today, our first conversation since the surprise phone call only two weeks ago.  He's been keeping up-to-date through his nurse and conversations with the hematologists.  He wanted to know if I had any questions (not really) and said that he'd be working closely with the hematologists to keep Peter comfortable and maximize his quality lifespan.  He also said that for a number of reasons, he feels strongly that our decision in favor of supportive care is absolutely the right thing to do.  It's nice to hear that from yet another medical professional.

Peter's home today for Veteran's Day.  He's all excited about tomorrow evening.  Leo has planned a pizza and movie night at home with his friends which will include Peter.  This is the first time Peter's had this kind of opportunity.  Leo's even taking Peter with him to round up all his friends.  Peter loves riding around in Leo's car.  The movie is a big favorite for all of us -- Slumdog Millionaire.  "Mommy, Leo is being so nice! I love Leo!"  (Of course, he always says that when Leo stops to pay him any attention! 23-year-old are pretty much in their own heads most of the time).

Peter must have seen me working on the blog last night.  I'm not going out of my way to be secretive, because I'd like him to take charge of the process of learning about his condition.  Better that he should ask questions when he wants to.  So at bedtime, he comes to me and says, gravely, "Mommy, is there something wrong with my health?"  (This is a surprisingly sophisticated choice of words for him).  I replied, "Why do you ask?"

"Well, I saw something on your computer ... like ... Blubber?"
"Oh, it was probably Blogger".
"Yeah, probably."
"Well, yes, you already know that your blood is sick."
"Unh-hunh".
"But YOU'RE not sick, are you?"
"No".
"Nope, you're not".
"But Mommy, I'm tired." (leans against me and puts his head on my shoulder)
"Really? I don't think you're any tireder than you always are".
"No, mom, I'm really tired in the morning.
"More than you've always been?"
"Yeah, mom, a lot more tired, in the morning I'm tired."
"Mmm-hmm. Well, I'm glad you told me.  You want to talk about it?"
"No, Mommy.  I'm just tired."

He does get winded much more easily, and I've noticed it most within the last few months.  It made me realize that I'd have to slow down a bit in India vs. the current plan.  Previously, I laid it to his overweight and poor cardiac conditioning.  Who knows?

Planning for the future

Hi, everybody, it's Chris.  I think it's time to start writing in first person.  13 days have passed since the phone call that brought us the news of Peter's abnormal blood counts.  It feels like the whole world has surrounded me in a tight warm circle of love:  my relatives ... local and distant friends, including many in India ... my Indian family ... my church community ... dear ones at Peter's orphanage in Kolkata ... precious SPICE friends ... long-time correspondents on ICHILD, Older-Child and Adoptindia ... and hundreds of new and old friends on Facebook.

Two nights ago Peter and I went to Glenview for our monthly meeting with the Bipolar Kids support group.  We've been attending faithfully throughout the past 8 years.  As usual, Peter had a great time hanging out with a young adult counselor and another bipolar young teen.  In the parents' meeting, I shared our shocking news.  Some of my fellow parents had trouble understanding our decision not to pursue a bone marrow transplant, although none of them knew much about what the process was like.  The long-time leader of the group, a psychiatric nurse and MSW, was very affirming.  After the meeting, she gave me a hug and told me she was proud of me for knowing what's best for Peter and having the courage to do it.

At choir rehearsal last night, everyone gave me a warm hug and then cried with me when we rehearsed the Billy Joel song "Goodnight, My Angel".  So many things take on an aching poignancy.  We just started rehearsing that song this fall ... and now it's only November 10, and my son is dying.  Before I went to bed last night, I stood over Peter and whispered some words from his favorite storybook: "I'll love you forever, I'll like you for always. As long as I'm living, my baby you'll be".  That's going to be a new bedtime ritual.

Leo and Annie are struggling but rising to the occasion with great love and fortitude.  Both have plans for more time with Peter doing the things he enjoys most.  I think we're all past the point of disbelief now; the wind is no longer whistling in our ears.  We are all sad, but we can't change the outcome, only the journey between now and then.  We all agree that there's no point in telling Peter he's terminally ill.  When he starts having symptoms, he's bound to start asking questions.  That'll be the sign that we need to start talking about it.

I've consulted with several doctors I know about how much time Peter may have left.  So far, everyone agrees on "probably months", but says that it would be irresponsible to make a real prediction.  I went to the hematologist on my own today to discuss the advance directive Carl and I want to create so that everyone is clear about our wishes for Peter.  I learned from Dr. Kwan that nearly all procedures require consent, so our document only needs to cover things like life support and resuscitation.

Dr. Kwan says that some kids like Peter with very low blood levels will plateau for a while before going downhill more rapidly.  A catastrophic event could occur at any time, but probably not until the levels drop further.  The first symptom we're likely to see will be tiredness.  Peter will be increasingly susceptible to infections, but since we're joyfully choosing "ordinary life" for Peter, we're not going to sequester him at home.  He loves school and hates being solitary.  We'll take extra hygienic precautions and treat infections as they come up, but we're not going to keep him away from people.

We talked about blood transfusions.  Carl and I are OK with the idea if it'll give Peter more quality time, but once started, it's hard to figure out what the end game would be.  At what point do we stop? Dr. Kwan looked straight in my eyes throughout the discussion and said that he and his associate had talked at length about Peter in their weekly conference.  Since we're not trying to keep Peter going indefinitely while waiting for a transplant donor, they are suggesting that we don't even start down the transfusion path.  This is appealing because Peter won't have to have a transfusion "port" implanted into an artery nor spend increasing amounts of time tethered to an I.V. pole.

We don't want to give Peter androgens to prop up his red count because they are likely to upset his hormonal balance and destabilize him.  Anyway, they only work 50% of the time, and their effect is transient. There is a medication we can give him to keep his white count up, but it requires daily injections.  Carl and I are still on the fence about that.  I think we might try it to see if we can turn it into a quick daily routine.  We don't want Peter to start thinking of himself as a sick person, or living the life of a sick person, until as close to the end as possible.  There is a new medicine that is injected only every 3 weeks or so, but it's unlikely that Peter's insurance (Medicaid) will cover it.

I scared myself the other night thinking about how I would handle a catastrophic event in India.  Here, we can rush Peter to the Emergency Room to deal with what's going on in the most appropriate way.  The doctors and nurses will keep him comfortable.  The same is likely to be true in India, though it might take a little longer to get to the E.R.  We're not asking for sophisticated care, so any decent hospital will do.  But what about the plane ride, when we're over the Atlantic ocean or the mountains of Iran?  What if Peter has a nosebleed that won't stop?  I saw myself cradling him in the back galley of the plane, trying to stop him from choking on the blood, rocking him and telling him to take deep breaths and rest, because I was right there and it was going to be OK.

I mentioned all of this to Dr. Kwan, and he said that a platelet transfusion would be a good idea.  Carl agrees, so I'm going to schedule one for next week.  I think it was good to consider how I would handle something like this on my own.  No matter what happens or when, Peter must never see fear in my eyes or feel dread in my heartbeats.

Tonight I finally spoke to the other family that is traveling with us to India.  They were, of course, in utter disbelief when I told them about Peter's condition.  Then Karen said, "We are blessed to have this chance to walk with you and Peter on your journey.  We'll be right there with you every step of the way".  The people at SICW, Peter's orphanage, are making ready to welcome him home.  Michelle and the girls at Shishur Sevay in Kolkata are very excited about our impending arrival.  Michelle told me to tell Peter that he'll be everyone's "dada" (older brother in Bengali) when he's there.  My Indian brother and sister-in-law in Bangalore are happy to have the chance to spend a little more time with Peter.  During my niece Jyothi's wedding a few years ago, he made quite an impression on everyone with his wide-eyed delight and endless hugs.

I cry a little every day, but it rarely lasts long.  People think I'm being "amazing", but ever since this began, I've known that I have a job to do: to take Peter by the hand and walk with him all the way to the end, using my magical Mommy Powers to keep fear and pain at bay.  When I think about that, I feel determined, peaceful, and very lucky to have a strong constitution.

My Indian mummy, Shanti, appeared at my elbow on the day the phone first rang, and I know she will stay beside me for as long as I need her.  Mummy was indomitable.  Strong, smart, opinionated, stubborn and immensely practical.  She made her own decisions about how she wanted to live the last years of her life.  We talked often about life and death during my last visits to Manipal in 2004 and 2007.  When her time came, she enjoyed the swift, peaceful death that she was hoping for.  Now she strengthens my resolve as I seek the same thing for Peter.

An unexpected turn

October 16, 2010 -- Peter's 16th birthday.  A new camera for the trip to India.  A bowling outing with Annie, a video game from Leo.  Dinner with family and friends at India Garden, his favorite restaurant.  His traditional pumpkin pie in lieu of birthday cake.

October 22, 2010 -- Appointment with endocrinologist at Children's Hospital.  History is taken and tests are ordered.

October October 27, 2010 -- The phone rings.  It is the pediatrician's nurse.  Blood results sent from Children's Hospital are extremely abnormal.  Chris writes down the counts and goes to Google.  She soon realizes that Peter is suffering from severe aplastic anemia (bone marrow failure). 

October 28, 2010 -- Chris spends another day researching potential causes and becomes certain that Peter has a rare and fatal genetic disorder, Fanconi's Anemia.  This diagnosis ties together so much of his history and characteristics.  Because his platelets are so low, Chris call's the pediatrician for advice on activities.  He agrees that Peter should do only light exercise in gym, and stop riding his bike for a while.  Peter takes it all in stride.  He loves to ride his bike, but "it's getting cold anyway, Mom".

October 29, 2010 -- First visit to a pediatric hematologist confirms Peter's very low blood counts.  The doctor tentatively rules out leukemia after looking at a blood smear.  Fanconi's Anemia is a possible diagnosis, but other possible causes must be considered too.  A bone marrow biopsy is ordered. And what about the India trip?  We'll see.

October 30-31, 2010 -- Chris reads everything she can about bone marrow failure syndromes, including every blog on the Fanconi's Anemia family support page.  Chris and Carl discuss the pros and cons of aggressive care for Peter, including a bone marrow transplant in the unlikely event that a well-matched donor could be found.  They immediately agree that they want Peter's happy life to continue unchanged for as long as possible.  Even a simple blood test is terribly stressful for him.  This boy should not spend the last part of his life in and out of hospitals, living in pain and fear.  Quality of life is more important than quantity of days.  As for India, he'll never be healthier than he is now. He wants to go.  He should go.

November 3, 2010 -- Peter has his bone marrow biopsy at Lutheran General Children's Hospital in Park Ridge, IL.  It's a tough procedure, but he is well-sedated.  Afterward, he inhales a burger and fries from the hospital kitchen, and then consumes two more burgers and more fries from McDonalds.  He's allowed to stay home for another day because he's "sore".  He tries to parlay this into another day off, but Chris sends him to school with a warning to stay out of the nurse's office.

November 8, 2010 -- Bone marrow biopsy results are in, and the news is shocking.  Only 5% of Peter's marrow stem cells are still alive.  Few new cells are being made.  A DNA breakage test for Fanconi's Anemia is finally ordered, though the results won't be back for several weeks.  Chris tells the hematologist, in private, of the decision against a bone marrow transplant and other destabilizing treatments.  He is very supportive.  As for the trip to India, why shouldn't he go?  It's "Make a Wish" time.  Chris writes a note to Peter's special ed teacher, letting him know what's going on, and makes an appointment to meet with the school nurse later in the week.  Chris calls her Indian brother, a cardiac surgeon in California and reviews the blood and marrow findings.  He says that Peter's counts are likely to go down fairly rapidly.  He is a strong supporter of the low intervention plan.  He suggests a meeting soon with hospice.  Although these things are unpredictable, he believes Peter won't live beyond a few more months.  Chris talks with the pediatrician's nurse about antibiotics for the India trip.  Chris rattles on about the test findings and everything she's learned online.  The nurse gently suggests that it may be time to stop being a researcher and just be a mother.

November 9, 2010 -- Peter's monthly psychiatrist appointment.  Peter mentions that his blood is sick, but doesn't want to talk further.  The psychiatrist feels that opting for supportive care is a wise decision and very much in Peter's best interest.  He's been seeing Peter monthly for the past 8 years, and he understands the quality of life issue better than anyone outside the family.

The start of Peter's journey

October 16, 1994 ... Peter is born to Sumita Das, an unmarried 27-year-old woman living in Serampore, West Bengal.

October 17, 1994 ... Peter is transferred to the Society for Indian Child Welfare's foundling home in central Kolkata.  He is given the name Rohit.  Although he was reported to be full-term, his weight is only 3 lb 6 oz.  He requires oxygen and tube feeding.

October 31, 1994 ... Family friend Jerri Jenista returns from a visit to SICW with word of a tiny baby boy named Rohit.

December 9, 1994 ... The official referral for Peter finally arrives.  Aside from a minor foot malformation, he is deemed to be healthy and normal.

April 13, 1995 ... Peter is escorted home from Kolkata by Jerri Jenista, her niece and her four Indian daughters.  Chris's mom, Jeanne Braen, brings him from Detroit to New Jersey and places him in her daughter's arms.  He is welcomed home with great celebration by Chris, Carl, brother Leo Rajan (now 23) and sister Anne Shanti (now 20), as well as Chris and Carl's parents and Peter's Godmother, Judy Dechent.  Peter is a beautiful baby,  in excellent health and perfect in every way.

Peter's medical records indicate that he narrowly survived RSV, a serious respiratory illness, before he came home. In May of 1995, he has another bout with RSV.  He returns home with a nebulizer.  For the next several years, he requires 3 nebulizer treatments a day, and when he has a cold, his parents get up to nebulize him every 4 hours around the clock.  Around age 1, Peter begins to suffer from intractable constipation. His appetite is extremely poor, and he is diagnosed with "failure to thrive". After numerous tests, no cause is found.  Chris decides -- on a hunch -- to remove gluten from his diet.  He immediately begins to pass normal stools. Chris feeds him continuously with small amounts of high-calorie foods.  He will not need a feeding tube.

At age 3, Peter begins attending preschool special education classes with Lissa Abraham, the gifted teacher who worked with Leo and Annie at the same age.  Around 4 1/2, Peter "outgrows" his respiratory and digestive problems.  He no longer needs a nebulizer and eats a normal diet.  As with his brother and sister, he is incredibly tiny, has a very small head, and is developmentally delayed.  He is usually cranky, oppositional and hard to manage, but but he also has brief periods of elation.  When he's in a happy mood, he is almost rapturous.  He giggles and hugs and reminds his family what a loveable child he is.

At age 4, Peter begins taking Zoloft to reduce his crankiness.  He becomes a bit more calm, and his progress in preschool improves.  After a brief examination, Peter's pediatric neurologist tells Chris that Peter has serious cognitive and neuro-psychiatric issues and will never be normal.  Chris and Carl take this warning with a large grain of salt, since dire predictions were sometimes made about Leo and Annie too. 

Peter's pediatrician suggests a consultation with a geneticist.  She sees enough in Peter's history and exam to suggest that there could be genetic issues, but tells Chris and Carl that testing will not change anything about the way he is treated and managed.  She is right.  Because he was so small for gestational age and is not growing well, Peter qualifies for growth hormone injections.  Chris and Carl ultimately decline the offer because of Peter's extreme crankiness and hyper-reactivity to stress.  Just getting through a normal day is a struggle involving much shrieking.

Peter starts sensory integration therapy to help overcome his many sensory issues.  He is unable to tolerate many ordinary activities and situations.  He will not allow a toothbrush in his mouth.  He will not allow his hair to be combed or his face to be wiped.  Haircuts must be done in less than 3 minutes to keep him from screaming until he vomits. Potty training is impossible until he is 5.  Even after that, he has frequent accidents, which continue into his teen years, along with his bedwetting.

Chris does some desperate research and discovers that Peter has all the symptoms of acute early-onset bipolar disorder.  This is a somewhat controversial diagnosis, but Chris is sure.  In early 2001, the family moves from New Jersey to Illinois.  Chris takes Peter to Children's Hospital in Chicago for psychiatric evaluation.  The doctors there are not willing to diagnose juvenile bipolar disorder "yet".  Peter is in an excellent special education program, but he loses his entire kindergarten year because he melts down constantly.

When Peter is 8, Chris takes him to a psychiatrist who specializing in juvenile bipolar disorder. The diagnosis is finally made, and Peter begins to take medication.  His mood improves and he becomes a bit more manageable, but he puts on weight so rapidly that his body is covered in stretch marks. Nevertheless, the medication is a necessity.  It allows the "real Peter" to emerge more often, a boy with sparkling eyes, an infectious laugh, incredible empathy and hugs for everyone.

Peter still experiences rapidly cycling moods, but the peaks and valleys are a bit less intense.  His teachers are finally able to complete an educational evaluation.  Peter has delays in all areas and an IQ that places him in the "high-functioning mentally retarded" category.  His IEP is modified to ensure that he receives exactly the services he needs, with a behavior management plan to help him when he has major meltdowns at school.

Peer relationships are difficult for Peter.  He is often lonely, and doggedly visits the local park and neighbors' houses so that he can hang out with other kids.  In the summer, he is able to attend regular day camp with a full-time psychiatric aide.  Even at the best of times, nothing is easy.  Junior high brings terrible teasing and name-calling on the bus.  Despite warnings and consequences, some children ridicule him for his small head, short stature, obesity, dark color, emotional outbursts and cognitive impairment.  Peter often thinks that other people hate him, and frequently says he hates himself.

High school is a better time. The other students are friendly and understanding.  They "get it".  Peter's mood swings continue, but major meltdowns are a thing of the past.  Peter is thrilled to be a teenager, and loves to tell people his age and grade.  He's proud of his many accomplishments.  He gains basic math and reading skills, and learns how to cook.  He often prepares his own meals and snacks, and bakes brownies for the family.

Peter loves burgers and fries, sushi, pad thai, pakoras, chapatis, tandoori chicken and gulab jamun.  He adores having friends and family around him at home.  He is besotted with the family cat, Tashi. He rides his bike to 7-Eleven, Subway and the library.  He spends his allowance the moment it hits his pocket, usually on treats for himself but often on treats for others as well. Giving gifts brings him a special joy. He loves babies and toddlers, and is very gentle and empathetic with them.  Every school night, he does a little homework completely on his own.

The high point of each year is attending SPICE Indian Heritage Camp in Johnstown, PA.  He has attended every year since infancy.  His SPICE friends -- kids, teens and parents -- know and accept him.  He spends every moment at SPICE in a warm glow.  When he is 14, he finally goes on stage to participate in the children's program.  He's very proud of himself.

January 2010 -- Chris decides that Peter is finally ready for a visit to India.  She plans and books a once-in-a-lifetime trip, along with another adoptive family with a 13-year-old daughter from India.  The departure date is November 23.  As the months go by, Peter is more and more excited.  He tells everyone he meets that he is going to India, because he is finally ready.

A few months before his 16th birthday, Peter starts taking a new antidepressant in conjunction with his other medication.  He enters the happiest, most peaceful time of his life.  He is no longer overwhelmed by moods he can't control.  He is able to develop reciprocal relationships.  His siblings are happier to have him around.  For the first time, he is willing to perform some simple chores around the house.  He often eats at the table with the rest of the family.  He sets alarms and gets up to urinate so that his bed stays dry. He likes himself.

10th grade is going well.  His grades are good.  He is making progress on all his IEP goals, and learning lots of important life skills.  He's more involved in the world at large.  His teachers love him.  He gives and receives lots of hugs every day, and tells his family he loves them at every opportunity.  Before the trip to India, Chris takes him to Children's Hospital for an evaluation for failed puberty.  Peter is still physically a 4th grader, and it is time for him to grow up.

Peter Then and Now