My Son & I

This week, I've worked only half-days at the office, choosing to spend time with my son during his school holidays. Today, we're going to a mall I normally never take him to. There will be some aimless wandering, some eating of junk-like food and a couple of tussles over what he can and cannot buy. But it will be worth it. At least I can spend time with him. He likes that.

This morning, he didn't want me to leave for work. Which is unusual, because normally, he can't wait to get rid of me. :) But none of his friends were around and his father was alternately glued to the TV or to the computer.

The little fellow finally decided he wanted to play with the Kaleidoscope puzzle (650 rupees well spent) so I dropped him off at my parents, where he keeps the set. It was a relief to leave him a contended kid. Have a good day, sweetheart.

Turning the Focus on Me, for a Change

I had another session with the doctor yesterday. He told me a lot of things my mother has been telling me for months. That I need to focus on myself and do something about my health. But he said it differently and maybe that's what made the difference. Besides, this is a person who is objective and I have poured my heart out to him. My mother, on the other hand, knows me better, but it is a tragedy that children don't always take their parents seriously.

We discussed and decided that since any action I want to take is entirely dependent on what my husband does over the next 4-6 weeks, I need to stop worrying about what he will or will not do. Instead, I need to "focus" on my life.

I set a goal for myself earlier this week: to get rid of the fear when my husband starts his "not-so-silent venting." The doctor gave me an option: Understand that you don't have to react. You might want to. But tell yourself that you don't need to. When you refuse to react, you gain a sense of power over yourself. And that's what liberates you from that bottled up feeling which makes you think you're going to explode.

I'm not sure I can do it. But I'll certainly try. I owe myself this much.

The other thing was to begin walking again regularly. Getting up earlier in the morning is difficult, especially with the meds. But the doctor said I could cut down one of them to just half a tablet and that should make a difference. I'll try it out tonight. Or at least find time later in the day.

Next, and this is really important to me. I've realized that I don't feel so hungry any more. Earlier - especially in the past 8 months or so - I would actually "feel" hungry an hour after lunch! Now, I'm able to turn down an item of food even if I tempt myself with it a dozen times. Maybe it's the medicines, but whatever it is, that power of being able to resist the temptation successfully feels good. If I stop eating randomly - even if it wasn't junk - it's sure to do me a whole lot of good. At least physically. Which is a lot for me at this stage.

My Christmas Dream Comes True

In my last post, I mentioned how I'd always had this feeling that Christmas was meant for something. When I attended a school run by nuns (grades 7-9) I'd have the time of my life singing hymns, Christmas carols, listening to stories from the Bible and doing up a crib in the run-up to Christmas Eve. The school held a contest and the class that put up the best, most realistic looking crib won a prize. Nobody was more enthusiastic than I was. But at home, naturally enough, there wasn't much to do at Christmas except wait for our Catholic neighbors (and there were plenty) to send us the goodies!

Yesterday, my son woke up in the morning and announced that he wanted us to bake a cake together. It was probably courtesy a set of measuring cups my mum gave him the day before - he was itching to try them out 'for real.' I wasn't sure I had all the ingredients for a cake but the little fellow announced solemnly: "We'll make adjustments."

So flour got substituted with whole wheat and the brat spent an eternity extracting egg whites. But he worked away like the proverbial elf in Santa's workshop until an hour later, we had a soft, spongy chocolate cake with nuts in it. "There's less sugar in this," he remarked. "Grind some in the mixer and put it all over the top. Then it will taste better," declared the young chef. So I did as I was told and voila, it did taste better.

In the afternoon, I took him to the amusement arcade near our house. On the way down, he spotted small, plastic Christmas trees on display and asked if we could buy one. I told him we'd get one next year and then he could do it up himself. After all, it was already the evening of the 25th, a bit late in the day to put up a tree, I thought. But fate willed otherwise. The enthusiastic salesgirl announced loudly that all Christmas decorations (the tree included) were on a Buy-one-get-two-free offer. The little elf's ears perked up, and I knew it was a lost battle. So we came back home with two trees that were less than 3ft high and one even smaller. The ornaments went up and my son's face was brighter than the fairy lights on the tree.

He then took the smallest tree down to my mum's house and put that up as well - and beamed again!

What is it they say about parents living out their dreams through their children? My son doesn't know it, but he made one of my earliest childhood dreams come true yesterday. Thank you, sweetheart. :-)

Image: FreeDigitalPhotos.net

Thank You, Almighty

This morning (Monday, December 24, 2007) we took our son to the doctor for his eye check-up. I have been waiting breathlessly and simultaneously dreading the visit. It was the day we would know whether or not the second round of cryotherapy worked. The little tyke hates these visits and I don't blame him. A hyperactive 6-year-old having to to sit with his eyes closed for nearly an hour is torture. Anyway, we somehow managed that with stories and "fact-stories" and occasional pick-me-up-and-carry-me-around requests.

Then it was time for us to go in. This doctor is a rather to-the-point kind of fellow. So he carried out his examination and with the same deadpan expression, proceeded to look at each and every page of the kid's hospital record. And we waited...and waited...and waited. I was sure my heart was about to fall right out of my mouth when he finally spoke: "Well, it is stable." The best four words I've ever heard.

We then asked questions to get some more details. Turns out that there has been no fresh leakage over the past 2 months, which means the condition has "stabilized." And then the doctor said something even more heartening. "If it stays this way, we can leave it as it is. The exudates (leakage) will get absorbed over time or we can do some laser to get rid of it."

I sat there gaping at him. I know I did. I couldn't speak and I couldn't gulp.

The kid's next check-up is in March to see if it he condition remains stable. My understanding is that if the second round of cryopexy worked, then he has a good chance at beating this thing altogether. Of course, the other doctor's words still haunt me: Be prepared for multiple treatments.

I am prepared, but today's results were God's doing and I thank the Almighty like I have never thanked Him before.

PS: Ever since I was around 8 years old, I've always had this "great expectation" feeling around Christmas. It's weird because we're not Christians, so the feeling that the day was somehow significant seemed baseless. Over the years, I learned to put it down to the whole commercialization of expecting a gift and doing up a Christmas tree and whatnot. (Score one for the Americanization of the world, etc.) Today, that void was filled...and how! It was the best Christmas gift I could have ever hoped for. So once again, thank you, God.

(Originally posted on Monday, December 24, 2007 on an earlier blog, now deleted.)

A Little Bit of Madness?

He has this habit of silently talking to himself while gesticulating. Sometimes, it's not so silent and it's not too difficult to make out that he's venting some frustration. He says it's his way of venting and keeping sane. But even after nearly 10 years, I find it unnerving. Probably because most of the time, it is directed at me.

He gets angry about the weirdest things. If he has a cold/cough, he gets angry, because somehow, I am responsible for it. I used to tell him that his throat weakened every time he cleared it in that loud, snorty fashion. You can literally see the kind of strain that is put on the muscles running from the base of the throat to the nose when he does that -- and usually it's for no reason. Naturally, now, his throat is weak and susceptible to infections. So every time he has a sore throat or something worse, it takes time to heal.

This time, of course, it is because of our last fight. (I have it in writing from him.) He yelled and yelled at me to shut up so that's why the throat problem happened. All I wanted was for him to just hear me out. If he was so worried about his throat, all he had to do was hear me out and then say "fine" or ended the conversation some other way. But no, it's all my fault. Like it always is.

This morning, we were so happy because of the good news about our son's eye condition and things seemed fine until (I think) I told my son I wasn't buying a toy on the way home. It was late and he's just got some stuff in the past week. I promised to get something nice on the way back from office. He (not my son) also said, "Mamma will get something good and intelligent for you."

Soon after, the silent stuff started. By the time we got home, there was some downright hostile body language accompanying the announcement that his throat was not okay even after a month. I hate the fact that that look of his still makes me scared. What do I have to be afraid of? I am not responsible for all his health problems - 90% of them stem to his childhood and he himself attributes it to his parents' carelessness or ignorance. But, of course, I'm not sympathetic enough! I don't get that. I just don't. I have to learn to ignore it. I pretend to, but deep down, it still disturbs me. And that's what I hate more than anything else: my fear.

Goal #1: Find a way out of this fear.

(Originally posted on Monday, December 24, 2007 on an earlier blog, now deleted.)

Trying to Take Control

I went back to the doc yesterday and had a nice, long chat with him. I didn't break down or get really angry. He listened for a long time before asking any questions. We focused primarily on the problems in my marriage.

I have tried to get feedback and change. But the more I try to adjust and the more I try to change, the more I feel like a pet animal being told to catch, stay or roll over and play dead. I never resented my husband taking six months off (eventually more than a year) to write his book. Never bothered about what anybody would think. Never asked him why it was taking so long. Never asked him to pitch in with the finances (he takes care of some expenses including the electricity and phone bills). He started doing a little more around the house, but frankly, that was something he should have been doing in the first place. (The doc agreed: "People work for 12 hours at the office, drive for an hour and then do some housework," he said.)

What did I want in return? For him to just hear my version when he accused me of something. But no, that's not allowed. "That's the problem in talking to you," he says, "You never accept it's your fault." Well, maybe it is and maybe it isn't. What's the harm in listening to what I have to say? Again, not an option. For the past four years, all I've done is begged to be heard. Just little things.

In the last fight, I was so shocked to find that he had a twisted recollection of anything I referred to. He refused to acknowledge most of what he'd done, pretending it didn't happen, and when confronted with proof, became offensive. Called me a liar (for the record, I did the same.) Anyway, I must have been pretty pathetic when I said, "I've supported your dream and I've supported everything you've done this past year. Don't I deserve to be heard, at least?"
"Who asked you to support me? Don't support me. I don't need your support."
Something broke in that moment though I didn't realize it at the time. The fight went on for a little more time and my son tells me I collapsed in the balcony. I have vague recollections of trying to understand where I was until I finally realized I was slumped on the floor.

Two days later, he gave me a letter. Said he acknowledged he had a mental illness (he'd been diagnosed with some form of schizophrenia when he was 22) and what triggered it off was if he couldn't eat and sleep on time, if people yelled around him, and if the TV was on in the evenings. (Of course, he gets to watch it during the day, but I'm not supposed to watch it to unwind after 11 hours at work because it kills brain cells and some research showed that the brain took 2 hours to shrug off the effects of TV viewing so the TV has to be shut 2 hours before going to bed.)

I'm also supposed to be a TV addict. Me, who hasn't the faintest idea what's even on television on any channel you can name.

Oh yes, and he hates white rice and stale food too. 'Stale' is defined as chapatis cooked in the morning which are heated at night.

So to cut a long story short, here's what I need to be doing.
1. Define the problem. (I still haven't done that.)
2. Decide what to do about it.
3. Decide how to do it.

Easier said than done.
The doc helped define the problem, although I haven't come to terms with it yet:
Here is a man who has said very clearly that he lives for today. So he doesn't want to take responsibility for the family's long-term financial security. He wants to enjoy the sunsets today. He refuses to make compromises in day-to-day life: if he can't cook, that's not his fault. But it is my fault if I don't cook the food he likes. He's been at home for more than a year and I haven't grudged him that, but he refuses to acknowledge that, let alone appreciate it. Yes, he is a nice father. But that's also because his idea of parenting involves zero disciplining (unless he's in a bad mood) and a give-the-kid-what-he-wants attitude. Yes, he does look like he's searching for another job, but he's not in any hurry about it. And he's made it abundantly clear that he'd rather just sit at home and write books. Even if the first one isn't successful, it doesn't matter.

So what am I going to do? Frankly, I have no idea. Before I saw the doc, I thought I would try doing exactly what he wanted me to do. We sit at the dinner table to have dinner. I don't watch TV (actually, he made a 'concession' - apparently, it was me and my son haggling over the remote that made him upset. So I could watch TV from 9.30 to 10.30 if we had dinner at the table at 9 pm. Hmm...nice. But I guess I just didn't want to take any chances. So I've stopped so much as looking in the direction of the TV. And I have all my meals at the table, just like he wants. And I speak when I'm spoken to...I speak nicely too. But I can't bear to make eye contact for more than a few seconds. That's never happened before.

There are limitations to carrying this on endlessly, of course. Which is what led to my mini-breakdown 10 days back in the morning. I gave him a written note that morning (just about the only way to have a civil conversation) and then realized what a mess I was in. Reached office and realize I had no clue what I was doing, so I finally went to seek help.

The meds help. The doc has reduced my dosage. They keep me on an even keel, so to speak. The waves of desperation, dread and anger have all softened somewhat. I'm more in control, but this is artificial. I need to really be in control on my own. I have no idea how I'm going to do it. But just "feeling" better about myself helps a great deal. At least I feel I can do something. First step. I give myself six weeks from today to make a decision. That's why I'm documenting this. To see if I keep this promise I've made to myself.

(Originally posted on Thursday, December 20, 2007 on an earlier blog, now deleted.)

Giving In, Not Giving Up

I surrendered today. I admit I am unable to manage the zillion little things that plague my mind and force it to a point where it can no longer function normally. So I saw a psychiatrist this morning. Looking back just a few hours to the time when I broke down in front of the doc, I think I was pathetic. I was going to tell him calmly what my problems were and ask him for a way to manage things one step at a time. Instead, I burst into tears. I couldn't even look at him. In the midst of all the crying, I tried to remember the list of things I was supposed to tell him. It must have seem so unconnected, but he's probably used to women (and men) breaking down in front of him.

At the time - I realize now - I just needed a place to cry and someone to talk to. This time, I couldn't tell Mum and I hated myself for wanting to break down like that. It's not the first time I've come to the office after an unpleasant morning. But this time, I realized 15 minutes after putting on my computer that I had no idea what I was doing. Asking for help seemed the right thing to do. I already had a recommendation for this doctor and he was available at a nearby hospital right then. So I went.

He's prescribed me some medication. Mild stuff he said. I don't want to get hooked, so I'm going to go back next week. He did say we needed to sit and talk it out. He probably has more time at his clinic in Indiranagar. I'll go there next week, when the medicines get over. Hopefully, the drugs will help me be a little more lucid.

I would probably liked to have a long session this morning, but he's the doctor. He must have realized - as I do now - that I needed to be thinking calmly before I vented any more. I like what he asked me. "Has anything happened in the past few days to make you so upset?" The answer was no, it was a build up.

I know now that I'm not as strong as my Mum. She's mild, extremely patient and lives in hell. How she does it is beyond me. I'm only 34 and I've given up trying to manage on my own. I also know that I need to stop burdening her with my problems. I need to give her strength at this stage in life. I can't do that if I'm falling apart myself.

Equally importantly, I need to be a good mother to my son. He has a major doctor's appointment coming up and this is one situation where I am hoping for the best but I am definitely not prepared for the worst. Of late, something tells me he will beat this thing. It's like an inner voice. But I'm a mother, so what weight does that confidence carry? I wonder if I am being in denial about facing the worst prospect and doing some more waiting.

They say such crises bring families together. It has certainly brought me closer to my son. But it has done nothing to heal the rift between my husband and I.

I keep wondering if God is trying to tell me something. I see things and I wonder if they are signs. Like the 1-year-old girl we met at the eye hospital last time. She has no vision in one eye because of an accident at home. She was taken to the OR right after my son and the parents were hoping the doctor (the same one who treats my son) would be able to reattach a nerve so she could see again. The surgery wasn't successful for them. I remember the dazed disbelief on the mother's face and the noisy denial in the father's voice. Was that a sign, telling me to be prepared for something? I literally ran away from them as soon as I could without being rude, but it still haunts me.

Time for another prayer and a fervent hope that my son is not suffering for my sins...

(Originally posted on Wednesday, December 12, 2007 on an earlier blog, now deleted)

Image courtesy: www.unprofound.com

Why My Son Can't be a Pilot and May Never Ride a Roller Coaster

This is something I wrote in November. I'm putting it up now because in just a few days, we'll know how my son is doing.

My son has a rare eye condition: Coats Disease. It affects 1 in 350,000 people. Some abnormal blood vessels in the back of the retina begin to leak and the leakage begins to collect in the retina. Eventually, if the case goes undetected, when the leakage starts to collect in the center of the retina, it affects the vision, prompts all kinds of other painful symptoms which I don’t want to think about. Worst case scenario: the retina detaches, can’t be surgically reattached, and results in blindness in that eye. Sometimes, the eye has to be removed and replaced with a cosmetic eye.

Now for the good news. The doctors tell us it’s been detected early (stage 2A) so the chances of arresting the progress of this condition are “very good.” They did the first round of laser – to blast off the existing leakage – and some cryopexy to freeze the abnormal blood vessels. A doctor from whom we took a second opinion told us to be prepared for multiple sessions of cryopexy. So we were. No, change that. We knew he may need multiple sessions. But we weren’t prepared for it.

Another talk with the second-opinion doctor reveled that they can do this kind of treatment only around 4 times.

That’s because every time you send that sub-zero beam into the eye, you freeze (read: destroy) that portion. So while cryopexy is just about the only thing that can control this disease, it is also slightly destructive in nature.

Oh, and he will probably never be able to go up in a roller coaster because those kind of fluctuating pressures will only worsen the condition. What am I going to tell him when he insists he’s old enough to try out the more adventurous rides in an amusement park? He can probably never become a pilot like he wants to. Yes, all boys want to become pilots at some point in their life, but having the choice taken away from you sucks, right?

Once the cryopexy is done, you need to wait for a month or two before you know if the treatment is working. But before that, you need to get through the procedure, done under general anesthesia. That’s always scary. Everyone in my family has been under GA at least twice. I don’t remember ever being so worried before. Is it because I’m older, or because this is my son we’re talking about?

The second time he went in for the treatment, I waited outside and mouthed prayers incessantly. I was a nervous wreck already – partly from worrying myself sick, and partly from not being able to display my emotions. I was ashamed of myself, because unlike most of my countrymen, I hadn’t been able to make a vow with a deity. I should have done what I had commonly heard: heal my son and I will bring him to your shrine within a year. Why hadn’t I been able to do it? The thought had crossed my mind a hundred times over. Was I weak, or just plain practical and scared? What if I made a vow but was unable to fulfill it? Besides, my family has never been into these things. Our faith is private and personal. Was I being tested? Was my faith not strong enough? Should I have been telling the Almighty: “I know you will heal him,” instead of saying, “please heal my son”?

Coats Disease can sometimes inexplicably reverse itself. A miracle, in other words. Should I have been praying for a miracle? Sworn to change my religion, like many others had, if my son was cured? Or done something equally intense? Was I too selfish? Was I not taking this thing seriously enough?

I was still saying my prayers when a woman with a cute one-year-old baby came up to me and asked me which member of my family had been taken inside the operation theater. I’d seen her when we’d come in. She was bottle-feeding her baby. The child looked like her left eye was smaller than her right eye. I told the woman briefly what had happened. She told me her story in turn.

Poppet came out on a stretcher this time, with an oxygen mask and drips. And his eye was bandaged. He wasn’t crying and howling in a semi-conscious state like the last time, but this was scary too.

I later saw the woman and her husband talking to the doctor. She looked worried, he was asking a lot of questions. The doctor, a reticent fellow, was answering their questions with the same expression he always wore: deadpan. So it was difficult to make out much. After a little while, I went over to ask them. This time, she kept quiet. Her husband did all the talking. “They are saying they could not reconnect the nerve,” he said. A nerve had been disconnected? “They tried, but they could not reattach it. So now they are saying nothing can be done.”

What did that mean? Would she be blind in that eye? “They are saying there is no vision in that eye already,” he said. “They are saying it will become smaller and smaller and they will replace with it with a cosmetic eye. But I will take her somewhere else also. This is very serious.”

And then it hit me. Their daughter was already blind in one eye. And they couldn’t accept that. He was talking about taking her to other places. She was very quiet.

I wanted to run away from there.

My son's procedure had gone well. Of course, we’d know only by December whether it had worked. And if it hadn’t, he still had two more shots at a cure. Was this curable? I’d never heard or read about a cure to this condition? Was it simply ‘managing’ the condition? Would Poppet need to worry about this, or ‘manage’ it for the rest of this life? That suddenly seemed preferable to what I had just heard. For one second, it seemed like some bizarre way of destiny preparing me for what was to come.

And I couldn’t deal with it. Not then, not that day.

So I ran away. Very selfish, very petty, and very cheap of me. But that’s what I did. I mouthed some nonsense about not losing hope, feigning misunderstanding of what they had just told me. And then I fled. Back to my son demanding to know when we could go home.

“Just as soon as you can keep some food down,” I told him. “Twenty minutes after that, we can leave.”

An hour later, after he had managed to keep down two idlis for 15 minutes and shown no signs of throwing up, we left for home.

Post Script:

The little brat has been chosen to MC a part of his school's annual day celebrations (Kindergarten section). Last year, he was in a dance which he really enjoyed. A few days before the show, he came down with high fever. Although he recovered, he was really weak on the day of the show and couldn't take part. His teacher later told me his partner, Chinmayee (who tied a rakhi on his wrist that year) cried her heart out. This year, he told his teacher he didn't want to be in the dance. So they've made him an MC. His check-up is due the Monday before the show. From what we know, whatever the doctor tells us that day should not affect his performance on the day of the show. I continue to pray...

(This was originally posted on Wednesday, December 12, 2007 on an earlier blog, now deleted.)

Mommy vs. Mahatma

The Brat decided he wanted to dress up as Mahatma Gandhi for his fancy dress contest at school.

ME (mentally drawing up a list of things I would have to borrow and buy to get the poppet in costume): Why?

BRAT: He was the leader of ALL the freedom fighters. Hmmm....well, not ALL, but common sense rules that you don't start explaining politics and history to a 5-year-old.

BRAT (continuing with smug, so-there look): And he's on ALL our money. He's the most famous. That's why!" Gen Z knows an opportunity when they see one.

ME: I'll put a stocking on your head...you don't have to shave it off.

BRAT: Gandhi didn't wear a stocking on his head. He didn't have hair. So I can't have hair. Can we go to the barber now?

ME: You'll regret this later, your hair won't grow back for 3 months.

BRAT (arms folded in defiance): What's regret?

What indeed!

List of things to get/do in the next 4 days: dig out 3 clean, white dupattas, buy one pair of seriously old-fashioned Bata slippers, bargain for round glasses from the optician down the road (Rs 275, after M-I-L style haggling), borrow stick handle of old mop from Mum, search for brown sticky tape to make it look like a walking stick, delve through piles of make-up to extract kajal to make a moustache, talcum powder to make the moustache look grey, paper and tape to make a watch, return early from office to make trip to the barber the evening before the event...phew!

End Result:
1. One hour of listening to introductions, slogans and what-am-I-doing-here looks from 7 Gandhis, 11 Nehrus (the costume is easier), 13 Rani(s) Laxmibai-with-doll-tied-at-the-back, 6 Kittur Rani(s) Chenamma, 4 assorted freedom fighters, and 17 Subhash Chandra Boses (the costume can be hired from just about everywhere.)

2. Consolation prize for the poppet. ("He forgot to say his name during the introduction," informed the teacher. "But you already told everybody who I was!" replied the brat. He had a point, but lost a few anyway and slid down the list.

3. Consolation prize for me too: Freedom from fighting with him to comb his hair early in the morning.

Moral of the Experience: One less squabble a day for the next three months is worth the effort.

(This was originally posted on September 26, 2007 on an earlier blog which has now been deleted.)

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