Quiet again

I think it was Francis who said that Christopher's illness is like living with a ghost, there is this presence always lurking in the background. That feels like a very apt description. The trick must be to learn to just get on with life as long as the ghost is quiet, rather than always being on the lookout for the next manifestation.
In any case, the ghost has gone quiet again this morning. Christopher went to bed early last night, woke up this morning without a temperature and said his headache was "almost gone". So far so good.
Take a deep breath and get on with life.

Alarm signals

Sometimes when I go in to say good-night to Christopher, I tell myself I really must break the habit of pretending to stroke his hair when I am really surreptitiously checking that he doesn't have a temperature.
This afternoon he was feeling low, because his French test didn't go well, so I went in and gave him a hug - and immediately felt the panic rising, because I thought he seemed much too warm. He told me he was fine, so I told myself that with my cold hands I can't tell anyway. But half an hour later, he came in and said he just wanted to lie down, because he wasn't feeling very well. At this point, his temperature is just slightly above normal, and he says the headaches come and go, but yes, they are meningitis headaches, not ordinary ones.
This is the part I really hate: he is not sick yet, but it is highly unlikely that this will just go away. It might, but it probably won't.
So I sit here staring at my computer screen, trying to convince myself that I have to get my work done while I can, but it is so hard to concentrate, because I am really just waiting ...
And the poor guy is lying there on the couch looking so forlorn - he is just waiting too. Waiting for the pain ...

The computer as a telephone

Ages ago Francis sent me a link and suggested that I should try using the computer for phone calls, especially long distance phone calls with my family. Since I have never particularly liked telephones, the idea of using the computer as a telephone didn't really appeal to me, even though Francis kept explaining the advantages to me. OK, now I have to admit that Francis was right.
When we had to get a new laptop, because the old one died, and I was trying to help Christopher set up videoconferencing, so that Francis could help him try to cope with school, Peter got interested - especially after reading an article in a computer magazine - and set up the new laptop to make phone calls.
It works.
I talked to Joseph briefly the other night, and just now I had a nice long talk with Sara. It works between the computer and conventional telephones (for a small fee that is ridiculously low in comparison with our phone bills), but it seems to work especially well between computers using an Internet connection.
The headset looks silly, but talking works, so you may all be hearing from me that way soon.
In any case, it really was very good to be able to talk to Sara, and so far Paddy's plans for going to London in a few weeks seem to be working out well.

Forget Christopher. All eyes on Paddy!

Hello all! 'tis me, Paddy! And now for something completely non-related to chronic illnesses, voluble fights and education: Art! Since last year me and my team of... currently 10 people are working on a modification for GTA San Andreas. It has a new plot and a new island and everything! It's really exciting. So now I'm learning all that 3d modelling and ... that. It's just so great! All my fellow team-guys are very experienced. Especially that one guy from India, who's the most brilliant pencil artist I've seen. See for yourselves. Speaking of deviantart... I got an account there and apparently I'm being appreciated. In case you would like to see some "art" I have made go here. Well... that's all... I think it's time to go back to whatever you were doing... Good bye.

PS: Aileen had to edit some of this...

Meeting with the doctor

Today Peter, Christopher and I went back to the hospital for a meeting with the doctor who is responsible for Christopher there. He and the other doctors had gone through all the results from all the different tests and examinations, and the conclusion is - nothing. All they can say is that he has a form of viral meningitis that just keeps coming back. This is no longer a surprise, but it is just official now.
The next time he goes in - and we all assume there will be another "next time" - they want to measure the pressure on his brain, because it seems to relieve the pain of his headaches when they do a spinal tap. If this is the case, then he will have to keep going into the hospital, because aspirin or other pain relievers don't help his meningitis headaches, which Christopher says are quite different from any other kind of headache.
The doctor is also going to check with the neurological clinic about what kind of testing they can do to check how his brain functions may be affected (difficulties with concentration, memory lapses, etc.). At the moment, however, Christopher seems fine, and the doctor is a sensible man with a good sense of humor, who thinks it is better to leave Christopher in peace and let him get on with his life as long as he has no symptoms.

Some good news

Today's good news is that Christopher is not failing English. Every positive grade helps at this point.
He is also not failing drama. In fact, at the official opening of the new drama room at school last night, when different classes presented "previews" of the plays they will be doing this year, Christopher was fantastic as Caliban from The Tempest. Twice. Since they have two different casts (some roles are even cast three times), it was planned for each cast to perform just a small section of the play, but since the other Caliban was ill, Christopher learned his lines and the staging for that section yesterday afternoon to take over at the last minute. Several people asked about how he is doing, because he didn't really look well, but his motivation was obviously strong enough to carry him through it extremely well. We will probably have to remind him more and more frequently over the next few months that he does not need to walk with a stoop and be unpleasant when he is not on stage. As much as I enjoyed watching him play Caliban, I don't think I want to live with Caliban.

Patrick is also not failing English. In fact, he is working diligently on overwhelming his English teacher with his extensive vocabulary. Apparently she suspected that he might have used a number of terms in his report about the Great Depression (which he said greatly depressed him) that he got from Wikipedia without thoroughly understanding them. I couldn't blame her for questioning that, because I had a few misgivings about it myself (even though Patrick was so happy to have finally grasped the concept of deficit spending, which I had never realized was a problem for him before, that he felt compelled to explain to me in exhausting detail), but she just diplomatically asked him to simplify his report. As I watched him do that, I was seriously impressed to see that he did have a very firm grasp of all the economic terms that he used, because he was able to explain every one of them quite clearly with no hesitation at all. Since then he has been giving particular attention to his vocabulary and phrasing to prove to his English teacher that he does have that much of a command of the language. Fortunately for all concerned, the boys' English teacher has a wonderful sense of humor.

Ever since Hospital

What a strange feeling... Ever since being to the hospital I'm wandering between two extremes. The One being the need to do everything at once and I get really restless, however I also have the feeling of wanting to do absolutely nothing, I don't want to study, to meet with friends, to do anything in front of my computer, simply nothing which seems to be a very unusual feeling for me. I at least want to do something... usualy
If anyone can agree with me please tell me.
Christopher

Sometimes I really hate school

Sometimes I really hate school. I hate the way it seems to dominate our lives with concerns that really shouldn't matter, that really have nothing to do with "learning" in a broader, more important sense.
From the time the boys were little, Peter and I agreed that we did not want to send them to any private or alternative or "special" kindergarten or primary school. As I have often stated, my stance has always been that my children are privileged: as white, male, intelligent and healthy children from a stable and affirmative, well educated middle class background surrounded by a strong social network in a peaceful and prosperous western European country, they have every conceivable advantage. I don't believe that it is the school's job to enhance the privileges they already have, but to provide them with a framework in which they may learn to use their privileges sensibly and wisely for their own benefit and the benefit of others.
Although sending them to the International School in Linz seemed to make sense for many reasons, hearing again and again that the International School is so widely regarded as an "elite school", even though it is a public and not a private school, we had some reservations as well.
The "international" part seems to work well for Patrick, except that children from international contexts often leave again as quickly as they have come (this is one of the primary motivations for his trip to London next month). He also appears to have grasped how the system works and what he needs to do to at least minimally meet conventional demands in order to be left in peace to pursue his own interests. I am often grateful for the way that makes life so much easier for everyone.
Christopher, on the other hand, appears to have adopted the same attitude of "resistance" that generations of intelligent, creative and mostly leftist people before him have tried (including both his parents), seeking to evade the conventional demands of school, trying not to conform, insisting on his own interests and being "different". As well as that works in most conventional school settings, like the schools that his friends who share this attitude attend, I'm afraid it is not going to work in the challenging school that he attends. It is so hard to watch him, knowing how much he stands to lose, and the feeling of "been there, done that" doesn't make it easier for either of us.
The last two years of the international school are devoted to preparing to take the exams for an "international baccalaureate", and it is a very different kind of learning situation. Since Christopher is in the sixth year now, they have to choose which subjects they want to concentrate on as "higher level" and "standard level" subjects, working intensively in small groups mostly on their own with a teacher supervising. Christopher was thrilled about the presentations of the possibilities last week and very excited about taking history, English and drama as his higher level subjects. The problem is that he has to pass this year first, and he is so easily distracted that the situation doesn't look very promising, even if he doesn't end up spending most of the school year in the hospital, which is also a real possibility. It was such a joy to see his face light up as he enthusiastically told me about what they would be doing in higher level history next year, but no one else can make the connection for him that he needs to be in his room now writing essays in French, Spanish and English in order to get to that point. He has to figure that out for himself.
Of course I am delighted that both of my sons have retained their natural curiosity, and I enjoy conversations with both of them about what they are interested in, what they are learning in every sense both through and despite school. I just wish we didn't have to deal with this constant pressure in the background.
That's why sometimes I really hate school.

New York in the summer

Last night we met with the parents of Patrick's friend Mario to discuss summer plans, and it looks like everything is set now. Next week Peter and Mario's father will take care of their tickets, so Patrick and Mario should be off to New York for two weeks in July. Mario's mother has a niece there that they will be staying with, so that should work well for everyone. Mario can practice his English and Patrick can practice Spanish.
I have to admit that it is not that easy to let "my baby" go off on his own, galivanting around the whole world, but I am glad that he has overcome his fear of getting lost, so that he can enjoy travelling now.
Before he goes to New York, though, he will be heading for London in February, so I need to get moving and help him organize that.

Not just somebody's mother

Now that I have started this blog, I also felt a need to at least
provisionally finish a website of my own - just for my own
self-esteem, just to prove that I am not only "somebody's mother".
So this is me now: http://eliot.at
At some point I will probably have to let Patrick help me make it look
nicer, since I am a text-person, I don't do graphics, but at least I
have made a start at collecting various links and texts.

Meningitis

Since I have long since lost track of which information I sent to
whom, this is the general background on Christopher's illness:

He first had what we thought was a summer flu the last week of school
in early July, but when it came back about ten days later, he was
admitted to the hospital on suspicion of meningitis, which a spinal
tap confirmed. Two weeks later he was back in the hospital with
exactly the same symptoms, same results from the spinal tap, so the
doctors thought he hadn't completely gotten over it the time before.
About two weeks after another spinal tap had confirmed that the infection
was gone, he was back in the hospital again with exactly the same
symptoms, same results again from the spinal tap. The doctors did more
tests looking for an identifiable cause, but couldn't find anything.
The diagnosis on his discharge papers said "Mollarets meningitis",
which is a very rare form of recurrent meningitis without clearly
identifiable causes.
Links for Mollarets meningitis:
http://www.musa.org/mollaret.asp
http://www.lef.org/protocols/prtcl-129.shtml
http://www.medterms.com/script/main/art.asp?articlekey=16584
Christopher missed the first week of school, but then he was all right
again. We couldn't let him go to North Carolina with his class for an
exchange program, though, because we were expecting the next "episode"
about that time, which was extremely disappointing for him -
especially since he didn't get sick again the whole time his class was
gone. The next episode didn't occur until the end of November, just as
we were beginning to hope it was really all over.
We had agreed on a "battle plan" with the doctors beforehand, so we
took him in immediately and they went through all kinds of "exotic"
tests, but all with no results. As the doctors said, Mollarets
meningitis is the diagnosis they are left with, if they really can't
find anything else. The good news is that it eventually stops, the
same way it started, with no permanent brain damage.
The bad news is that this may go on for several years.
From the end of summer until the episode in late November, there was a
period of six weeks that he was generally well, although with some
good days and some bad days (and some days of just normal obnoxious
adolescent behavior). Then it was another eight weeks until the
episode last week, which was much shorter and less dramatic than
previous episodes (sheer willpower motivated by a concert?!). We will
just have to see how things develop.
When a friend described to me her experience of meningitis and how
incredibly painful it is, it nearly made me ill imagining that
Christopher has been through that six times already and has to live
with the prospect of experiencing it again and again at any time.
Nevertheless, he is not just a "case", a "chronically ill teenager",
he is still Christopher with all his exuberance and all his
flightiness and everything else that makes him the unique and
wonderful (and sometimes thoroughly exasperating) person that he is.

Meanwhile, Patrick ...

While Christopher is busy being a flake and keeping us more or less in
a permanent state of alarm, Patrick is doing his best to make up for
it by being a model child. He has become quite diligent about keeping
up with school work, even though he is not particularly interested in
certain subjects.
Although it is not yet evident on his own website, he has been doing a
lot on the computer. He had an idea for a game modification that was
so well received that he has a whole team of talented people working
with him on it. It is a horrible, violent game that we would not even
let him see, if we were more responsible parents, but he has learned a
lot about 3D modelling, which is far more interesting than the game
itself. During the holidays he also started learning css and php and
caught on very quickly.
He got a suitcase for Christmas and he has great plans for using it.
For his birthday in February he is getting a plane ticket to London
(I will mail the details soon to coordinate that with everyone in
England that he wants to visit), and we should be meeting in a few
days with the parents of a friend that he will be traveling to New
York with in the summer, so we can book their flights.
Since it is also likely that his class will be going to South Africa
in the fall through an exchange program, I need to get to work, so
that we can finance all these travel plans.

Starting a new year with catching up

School started again last Monday following Christmas holidays that
were neither as relaxing nor as productive as we had hoped. The first
week of "normal routine" was another demonstration of redefining
"normal".
Since Christopher was in the hospital with meningitis every 10 - 14
days all summer, we were just beginning to breathe when he didn't have
another bout until late November. After that, we always seemed to be
waiting, watching, constantly on the look-out for signs of the next
episode. Especially before Christmas, since it was another six weeks,
I had the feeling we had to be prepared to take him back to the
hospital at any time (hence the title of this blog), especially when
he seemed unusually tired or unfocused, or when he said things like,
"I've been feeling a bit gormless all day." In the end, however, we
made it all the way through the holidays without a trip to the
hospital, and Christopher even spent a week at a "DJ camp" in Styria
the first week in January.
On Monday the boys started back to school, on Tuesday Christopher had
a German test and came home early from school not feeling well.
Wednesday he kept insisting it was "different this time", making a
show of eating and talking incessantly, because he had his heart set
on going to a concert Friday evening. Thursday morning we took him in,
they did a spinal tap, which showed the same high count again, and
Christopher went into his "twilight zone". He came out of it quite
quickly this time, though, sparing no efforts to prove that he was
"fine" again, and actually managed to get out of the hospital in the
afternoon, so that we could spend the rest of the afternoon and the
evening fighting about whether he should go to this concert or not. He
went.
If he could put that much energy and determination into
longer-term goals, I don't think we would have any other real
problems, but as it is, I just feel extremely frustrated. We are off
to a great start this year.