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.
Friday, November 19, 2010
Thursday, November 18, 2010
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
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
Wednesday, November 17, 2010
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:
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.
"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.
Saturday, November 13, 2010
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.
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.
Thursday, November 11, 2010
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?
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?
Wednesday, November 10, 2010
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.
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.
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.
Subscribe to:
Posts (Atom)