Wednesday, March 30, 2005
Tuesday, March 22, 2005
Monday, March 21, 2005
Thursday, March 10, 2005
As I related earlier, our 15 month old daughter, Kasia has reflex anoxic seizures. This is in itself extremely stressful, since having your daughter's heart stop beating, her breathing stop and her eyes roll up into her head -- for all intents and purposes dead for three or four minutes -- is terrifying, even knowing that the condition has never proven fatal and that there is (apparently) no long term damage to heart, lungs or brain. But in testing to determine that diagnosis she also turned out to have fairly serious anemia. When that did not respond to aggressive iron supplements, the doctor started testing her for Thalassemia, a process that took weeks and left us terrified by what we had read up on that genetic condition. The tests eventually came back negative, but we still don’t know if the anemia was just a blip, or a symptom of something even scarier (everything on the list after Thalassemia is mind-numbingly scary.)
When Kasia was first diagnosed with the cyanotic breath holding, we were grateful she didn’t have the even more frightening pallid attacks; when she developed the pallid form as well (our pediatrician didn’t know it was possible to get both kinds in the same patient before meeting Kasia, since they are different mechanisms – but apparently a very small percentage do get both), we could at least take solace that the condition is not life threatening (as long as appropriate precautions are taken). And after all the tests Kasia has had, the doctor was able to rule out epilepsy, so bad as the seizures were, they weren’t that.
So then two weeks ago, Kasia had her first grand mal seizure. I was surprised at how calmly I was able to deal with this, though later Mary reminded me that I am used to dealing with Portia, our epileptic dog, so perhaps the familiarity got me through it. Nevertheless, I called for Mary and we got Kasia to the hospital in under three minutes, which is pretty good since we live about 10 minutes from the hospital. (The doctor subsequently told us that we should always bring Kasia in after a seizure of this type, but next time to drive slower.) Our pediatrician happened to be on call at the hospital that evening, and after observing Kasia for four hours concluded that this seizure was not part of the reflex anoxic seizures we had already been dealing with but something new and different. We waited for him to tell us that these new grand mal seizures were also not life threatening, since we know our dog is fine and just requires some comforting to get her through it, but he unfortunately could provide no such assurances. He also told us that 80% of such seizures are never diagnosed and that we may never know what caused it, but that we would have to re-run all the tests for epilepsy and tumors etc that we had already been through before.
Currently, our best case scenario is that this was a severe anoxic seizure -- though Kasia’s color was wrong for that diagnosis – since a percentage of those with the pallid form do also suffer convulsions. But there is really no way to know in the short term, and the uncertainty is eating away at us.
Meanwhile, our six-year old daughter was having ongoing problems at school with bullying. Mary and I had tried several times to get the teacher or the principal to take the matter seriously, but we found both to be more defensive then helpful. I understand that it is difficult to take the problems of six year olds seriously, especially if you have not witnessed these incidents with your own eyes, as we had on several occasions, but it seemed obvious to us that Tigana’s schooling was suffering. For example, when Tigana started her writing portfolio in September, there was an outpouring of productivity; indeed, I had wanted to use her portfolio in my assessment course to demonstrate how successful these techniques could be. But all of a sudden, Tigana's entries just stopped. The last two entries are the one reproduced below (with the student names whited out for obvious reasons), and the final one that says: "I think I have a problem."
The illustration shows a tiny, intimidated and weeping Tigana, while a giant rival laughs and points at her. The object on the left is the tire swing on the school playground.
The problems kept escalating from there until last week when Tigana's nemesis approached another child on the playground to solicit her help in planning how to kill Tigana. When that child told Tigana what had been said, we again took it to the classroom teacher who again refused to accept the word of a six year old witness, or that there was a significant problem. Mary appealed to the Vice Principal, who ensured that a counselor was brought in. His initial belief (framed by his briefing from the school) that it was a very minor problem changed as he listened to our concerns, and later when he actually talked to the students involved. Although he appeared to make some progress with the children, we felt it was too little too late and pulled Tigana out of that school.
I must confess that I was concerned that we might be over-reacting, since that was the message we kept getting from the school. So Mary and I went to two of my colleagues (a psychologist and an elementary education specialist), whom we trust, and asked for a second opinion. Listening to what we had told the school, they both independently recommended pulling Tigana immediately.
When we broke the news of our decision to Tigana, her overwhelming reaction was one of immense release. It was only seeing how relieved she was to be leaving her old school that we really appreciated how much pressure she had been under. Of course she is sad about leaving her friends and a classroom she knows, and nervous about the transition, but she is also extremely excited.
Tigana's new principal immediately impressed us with his attitude and professionalism. And from all accounts, the teacher to whom he has assigned Tigana is a pretty good fit for our daughter. (As soon as we mentioned her name to another parent, she told us that last year that teacher had invited her grade 1 class to her wedding and set up a table of activities for them. Any teacher who would think of her "kids" on her wedding day is okay by me!)
We are doing what we can to ease the transition, and since her birthday comes exactly in the middle of the move, we've told her she can have two parties: one with the friends she's leaving, and one with the girls in her new class. (Since we didn't think it appropriate to have kids bring presents to a child they had just met that week, we're going to do a gift exchange for the second party where everyone brings a gift, and then some sort of game that assigns the gifts randomly so every child leaves with a present. And we're taking the girls to the local rock climbing wall which we hope isn't an idea that has already been done to death in her new school. Hopefully the party will be a good way to meet the other kids and parents in Tigana's class.) Tigana has a few friends who attend that school already, but it remains to be seen if any of them will be in Tigana's class.
So, on the bright side, we are cautiously optimistic that we have taken the appropriate action to address the problems facing Tigana; on the down side, there is little we can do about Kasia's health problems but wait to see what develops and what diagnosis we're handed.
Tuesday, March 08, 2005
The book came at an excellent time for me as I dealt with my own mini-midlife crisis, as Mary and I strive to cope with Kasia’s ongoing health issues, problems with Tigana’s school, and various other family stressors. I wouldn’t go so far as to say that Paterniti provided any answers for me, but I did find that my reactions to the various character biographies provided an excellent backdrop against which I could formulate, and to some extent resolve, my own issues. Coming to grips with the fact that I am a minor academic (no Einstein! – but no Thomas Harvey, either…) approaching the final years of his career, I find myself taking much more meaning and satisfaction from my family life than from my academia. I still love my job and gain great satisfaction from it, but I find my self image as ‘academic’ increasingly taking second place to my role as ‘Dad’ and ‘husband’. When Mary wasn’t sure she would get a permanent position at the UofL, I started to apply elsewhere just in case, and was surprised to discover that I was not only okay with moving to support Mary’s career, I was actually starting to look forward to the change. Mary made the comment the other day that a common fantasy for people like us is to be able to ‘start over’ without making any of the mistakes that we made getting to here. The “if only I knew then what I know now” syndrome, but of course it doesn’t actually work out that way – there are always new mistakes one can invent. [I actually did try starting over once, recreating myself in my subculture by using a (still undiscovered) pseudonym, determined not to make the errors that had brought the real me so much unnecessary controversy, but quickly discovered that my new persona, although the antithesis of the old, garnered just as many detractors – I came to see that conflict is to some extent unavoidable, and that it says as much about the others’ issues, as about me.] But all things considered, I have a great life and have nothing to complain about. Reading Paterniti helped me see my own journey in perspective, and be content.
All that aside, I really liked Driving Mr. Albert as literature, and highly recommend it.
Wednesday, March 02, 2005
Equally depressing is her loss of memory, and frequent disorientation. Being old and unable to sleep at night, she often falls asleep at the kitchen table. Being blind, the line between waking and dreaming is often blurred. Whereas the rest of us wake up, look around, and say, “oh yeah, I must have fallen asleep in the kitchen” or “Oh yeah, I’m at my Mom’s this week”, she has no visual cues to her whereabouts or time, and the best available references are in fact the dream images that thus persist into her initial waking state. Consequently, my brother has frequently found her wandering her apartment looking for her baby, a recurrent dream responsibility now 50 years out of date. Even when fully awake, her memory is so impaired that at times she cannot remember what was said only moments ago. I have to tell her that my wife Mary has gotten her job/promotion to assistant professor perhaps 16 times in three days: indeed, often by the time I had told mom something or answered a question, she would forget what she had asked and would ask the exact same question over again.
And she would repeat the same story about my Dad over and over – obviously their divorce much on her mind as she evaluates her life and weighs its meaning, but even with repeated opportunities to try different approaches in response, I find it an awkward subject to address. Each time she tells the incident, she expects me to be surprised by this ‘revelation’, but I’ve heard the same story now 20 or 30 times in the last year alone, and had first heard it maybe 25 years ago, so it feels inauthentic to feign surprise yet again.
I try to change the subject by asking her questions, but her answer to any query about family history is always “I’m sorry, I don’t remember anymore.” And indeed she doesn’t, telling me, for example, that it is too bad that she never met my brother’s wife, though of course she has hundreds of times. I’m frustrated by the impossibility of fetching my brother’s family portrait from the sideboard in the next room and pointing Joan out to her, but of course she there are no such easy referents for the blind. Somewhere in her closet lies a bin of family photos going back two generations, but none of them are labeled, and as Mom is the last surviving member of her family, there is no one left to identify the group of Englishmen in top hats and tails posing stiffly in front of the ancestral home in…wherever that is.
I regret now not taping her family stories while she still retained them. I can feel a huge chunk of my own past, my own formative years listening to family history and absorbing the implied life lessons and family identity, slipping away as I lose the source that could once have verified the details of my childhood recall – and ensured that I passed on the stories correctly to my own children. I see my children do something and I wonder if I did that or was like that when I was young, but there is no one left to ask.
Most of all, it saddens me that my Mom will never be able to see Kasia, or hold her, or know my second daughter as anything other than a passing wail. Tigana looks nothing like the toddler my Mom met before she went blind, and my daughters’ memories of my Mom will be of a shrunken arthritic shell, too fragile to hug, rather than the dynamic, inventive, principled woman who raised me.
Still, the visit was important to my Mom, even if it only existed in a brief, momentary ‘now’ that was forgotten soon after I left. I imagine her complaining to my brother that I haven’t been to visit for a long time, and that he’ll tell her again that I was just up last week, and that I’m coming again, this time with the family, at Easter. But that’s probably an exaggeration; she probably knows that I’ve been and that I love her. And that’s maybe enough.