they say that people with epilepsy have all sorts of neurological is-sues, and maybe there is something to be said about that.

today i had the strangest feeling that i had been plucked out of somewhere and placed in the middle of a novel, or a life that i knew of, but wasn’t emotionally connected to.

it started when a taxi driver took me the long, wrong way to my neuro appointment today. that frosted my socks, and as i was explaining to him what he could have done and he was being silent, shruggy and rather chintzy with the apologies, i felt like this was my first time having a cross cultural experience. my vision blurred a bit, and the sense i had was, "this is hong kong". yes, of course it is hong kong, it has been hong kong for nine years…why only sometimes do i get this realisation?

up to the doctors office, and after the prerequisite waiting time that is possibly meant to reinforce that you are seeing a SPECIALIST and simply paying $140usd isn’t enough, to fully appreciate the neuro’s education and experience you should wait to see him…i was ushered in.

i was polite, and as he pottered about my eyes feel (as eyes would) on my file. and to a letter written (luckily?) in english from someone i am not sure whom, stating their belief that my mother, my mother!!! needed to come over to hong kong because i was not equipped to care for four children. the letter was written in 2004.

and who knows why, this set me off on a little teary tangent. i mean, tears didn’t plop on to his expensive desk, but i felt as reduced as someone on medication that makes her gain weight can feel.

i thought i had reached a detente with epilepsy. i have never been "angry" that i have it, sure it is an inconvenience, but if i were to do a check and balance, i have a great life. i wouldn’t trade it, as much as i dislike my inability to drive and really commit to an event. i like it, and i like most of the people in it. but this letter made it sound like i had a crap existence, subsiding only with the assistance of others. possibly, a burden?

reading about how my husband although very helpful is unable to watch me and the children all the time, the unbidden thought: would mc have been better off if he had stayed with his first wife?

i paid to feel this way?

i suggested the new drug i wanted to try, and the dr basically said no. my plan won’t cover it, and it is a new drug, so therefore, (ready for this stunning logic), there are no studies of the long term results.so instead, he added a second drug. and joy of joys, the common side effects of this one are skin rashes and weight gain. so here i go.

and then that was it and i went outside to collect my new meds.

it didn’t feel as powerful as i wanted it to, but then again, it might work. the doctor had the nerve to tell me i was no where near fat. i got a little angrier when the receptionist said they only accepted cash, and that the drugs were so expensive i had to run out to a bank machine…bleck.

i then went to a us import goods store where i can buy things like 1lb of dreft for $50 usd, and seeing the items took me to a flashback of shopping in the states, in those huge supermarkets, and here i was with a teeny cart massaging my way around counters. i remembered being in there freshly pregnant with the triplets because this was where i could buy the chocolate slim fast shakes i was drinking with my meals. it could have been any day, any year.

outside, i was suddenly back in hong kong, and outdoor marketers were holding a cooking session promoting their latest tofu fry-er. the smell was asia, the crowd and their noises, the congestion was asia. being pushed against another person and them not minding, because it happens so often.

i feel displaced today. i wanted this to be a powerful day. frankly, it wasn’t.

but the good news is, i had more staying power than i thought i did. i wanted to crumple up with a john irving book and read about someone else’s life rather than being part of my own. instead, i went home, picked up my kids from their cots, danced with jasper and carys to a favourite moby song, and did some work. took a call from someone i really would have rather not spoken to. basically, i dug my heels in deep and said, "i’ve gone down as far as i want to go."

epilepsy takes away my power, choices and control.

today i exercised that power, made a choice to not get tumbled over, and to keep on with my life. because as i have said before, it’s a good one.

i’m feeling precious, but strong at the same time. i could cry in a minute, (but won’t), but at the same time, i feel certain. and that my friends, when you most fear uncertainty, is a v. good thing and i am glad i chose to be the enduring tess i know i am. i needed this.

watch this synapse

sometimes, nothing causes me to do something that needs to be done.

how obscure is that claim? but it is true.

for months, between whinging over doctors prescribing then taking me off thyroid medication, i have been saying i will switch anticonvulsants.

check back to september if you don’t believe me.

i went so far as to get the referral, months ago. but i was told at the time to get used to the thyroid meds first. and then i started the lovely thyroid pills and then was told i don’t need them. love clarity.

and today, for no other reason than i decided to, i called and booked my neurologist appointment. for when? tomorrow of course. to talk about new medications. new medications and me, to be precise.

i am sure there will be a workup, an eeg here, a cat scan there…no worries. i can handle this. old territory.

i wanted to do something for myself today. booking an appointment with a neurologist wasn’t the first thing that popped to mind, but it was the one i went with. i have no idea why. God does though, and that’s good enough for me. call it my cloud as i exit egypt.

i have done something else for myself this week: i quit one of my part time writing jobs. i have enjoyed this job, but chasing the people to interview was taking way too much time. i have promised myself that i will spend the hours i normally devoted to these assignments to writing for myself.

deal!

i feel like such a grownup today. and even better, one who is nice to herself.

i LOVE airports, ACTUALLY

i’m enjoying a bit of a colin firth fixation at the moment. pride and prejudice (and i am not talking the recent keira knightly effort, i am talking 1995 colin firth mr darcy plunging into the pond) is airing on television at the moment, and i caught maybe ten minutes of it.

from there, it got me watching CIRCLE OF FRIENDS, an early colin effort, and it was so impressive to see him act without talking that a quick re-read of bridget jones diary was in order. that book was so groundbreaking. whether it deserves the credit or not, it kickstarted chicklit and the appealing habit of removing the word "i" from descriptive writing. nothing like being frugal.

and then there was a movie, and my goodness, of course colin firth was mark darcy. over the past few days when i have been flypapered to home i have watched the colin firth scenes of BJD twice. great expressions. shoulders as nice as magnificent’s and that is saying something. i lurrve toward the end, when he is all amorous, the hauteur replaced by this smouldering anticipation. mc watches that bit with me, because he knows he’ll always get a smooch or two and a cuddle out of it.

tonight i couldn’t write any of the three outstanding stories i have due, sela is ill and needing attention. no fever, but she isn’t sleeping and appears to be achy. magnificent was in at a normal time, and with his bad shoulder muscle, said he just wanted to relax. he had read his daily reading of the purpose driven life, and so could relax. so we opted to watch LOVE ACTUALLY.

i don’t get as much colin, but i might like this movie more than BJD. (but i do get laura linney, alan rickman and his magnificent voice, and emma thompson, another actress who doesn’t need words to act) let’s do a six degrees of kevin bacon, except it’s renee zellweger. the comment renee made to tom cruise in jerry mcguire "you had me from hello", sums up how LOVE ACTUALLY captivates me. i agree with prime minister hugh grant’s comments in the opening scenes of the movie. i’m one of those people who has been lucky enough to have several wonderful airport reunions with family members, old friends, and loves. airports are places of tears. and i have shed many a happy tear in airports.

one of my best memories of my mother is the summer i flew to canada five months pregnant. i arrived in edmonton, and walked down to arrivals. the last bit was going down an escalator. i remember she saw me appear, feet, ankles, knees….i could see her through the mirror, and i watched her face as she saw my bump appear. i walked off the escalator into her arms and she hugged me, but not for long. she knew how hard earned this pregnancy was, how we had lost sebastian’s twin, and she just wanted to look at me and my tummy. "it is so good to see you like this," she said. 

i remember saying goodbye to magnificentcharles the first time after we met. after that first week together i knew we were going to be together for the rest of our lives, but another movie line that makes a lot of sense to me comes from the ending minutes of when harry met sally, when billy crystal blurts out, "and when you figure out the person you want to spend the rest of your life with, you want the rest of your life to begin as soon as possible." i couldn’t concentrate on the wonder that i had met HIM, i could only concentrate on the goodbye. very short sighted and shallow of me, but that was a tough bye bye.

i remember friends coming to see me in vancouver one of the years i passed through there. i remember saying goodbye to sebastian and my mother as i headed to toronto to do another ivf. i remember my divine friend anne taking me to the airport after my last FET failed, saying, "you will come back, right?" and telling her, "you’re here, i will always come back."

that’s the way it is with friends and lovers. seeing them makes you cry as you realise you are in the presence of love, saying goodbye makes you cry, because you are bidding goodbye to a source of laughter, support, pride, love, humour, joy, and depth. and we’ve all lived enough now to know, maybe maybe, you just might not see each other again.

i am so grateful to have had these moments where i have cried. where i have seen my frugal dad emerge arguing with my sister from hong kong customs, where i have said goodbye to my brother, knowing he was being brave and facing what he needed to, where i have seen my father in law’s face crumple as he looked at the face of his newest grandson, who looks exactly like him, where i have been looking around and suddenly seen my little gran, waving and saying…."oooh tessie!".

and i love that until i can have another airport moment (and i think i will have several this summer!) that watching LOVE ACTUALLY will tide me over. or as colin’s fiancee says at the end of the movie, "just in cases".

choices

sometimes you have to believe that there is no wrong choice, there is just a choice. parenting presents you with that scenario at least once a day.

magnificent and i are in the process of determining whether we want sebastian held back a year.

the pros for him going into primary one next year:

– anjali and adam will be in primary one and they are two of his three great friends

– his teachers think he is ready for primary one

the cons:

– his hearing has just gotten corrected. he has a lot of catching up to do. will he be at a disadvantage starting full day school without the basics? primary one has a lot of learning. is sebbie at the point where he can be learning there?

– do i want him in full day school at 4.5 years?

– he is small for his age

– studies show boys born in the latter half of the year tend to do poorly at school

lots of people i really respect say we should have him held back if we can swing it. an equal number of people i really respect say we are underestimating his abilities and we should just put him in primary one where he will do a better job than we expected.

there is no definite right answer on this one. instead of making me feel good, i feel gross because i would prefer if there were a right choice, and even better, if i was making it.

paranoia

the possibility of avain flu is really scaring me.

when SARS hit, mc, seb and i stayed in hong kong. we didn’t go overboard, but we practised caution and stayed smart. i don’t normally overreact about disease, etc, i am comfortable with the belief that no matter how crazy it seems, God is in control. but for some reason, this bird flu is really pricking at me, and i am uncertain and uneasy. have been ever since tamiflu became impossible to get.

i just feel that if bird flu reaches its full potential, it is going to be devastating, and not only will there be health issues, but there is going to be safety. of course there will be rioting and looting. this certainty frightens me.

it has been a creepy week all around, if the flat is crazy when just one kid is confined to these four walls, what is it going to be like, what am i going to be like, when no one can go outside? we’re going to have to seriously consider converting our living room into a giant playroom.

i hate feeling like this, and the feelings haven’t stopped. yet. it just gets creepier. i wish someone would just tell me i am overreacting, but so far no one has. "you don’t have tamiflu?" is a more frequent comment.

no, we don’t. and i am uneasy, and i hate being this way. and avian flu is so tricky, it dies down, we don’t hear anything for weeks on end, and then it pops up again, slightly mutated again.

am i overreacting? is anyone else slightly freaked out about bird flu?

jasper has chicken pox.

not only that, but he has chicken pox worse than sebastian and carys combined. the poor little mite is covered in bright red sores. some of them are volcano like, others are just specks. the ones on his scalp are massive. poor jay, it looks like leprosy.

we’ve got a load of creams and bath oatmeal and whatnot, but he’s still itching away. good tempered as always, but the little fingers are always reaching and scratching. today he ran into the front room and i saw he was bleeding from his head. turns out he had just scratched a scab away, but it still looked disgusting.

there are about 100 pox on his little bod right now, with more to come.

magnificent and i saw "walk the line" tonight…i think reece witherspoon is a great actress, but i am unconvinced if she was really a lead actress in that role. it was more a supporting role. very interesting movie, and terrific acting all round.

tomorrow i will post some pictures of jay and the pox, and while i’m at it i will post a couple of pix of sela as well, because she’ll have it next, im sure.

today sebastian had grommets put in his ears. poor little mite did not have a fun time.

as per orders, he ate his breakfast at home at 6am, and at 6.30 promptly we told him that no one, not mummy, daddy or sebastian would be drinking or eating until one hour after his ears had been fixed.

we got to the hospital and for the first bit, all was well. the hospital has a playroom and so we watched thomas the tank engine. every once and a while sebastian would get engrossed in a toy and wander off so i managed to get some good oscar viewing in. i think poor john stewart was okay as a mc, but not comfortable to really be himself. next year he will be much more confident and be throwing zingers left and right, i predict.

at 10.30am i had to change sebastian into his gown. given the open back, he didn’t want to take off his bobs, so knowing that he would probably wet them, i let him keep them on. comfort counts. they then rolled the bed and asked him to get on it, which he unwillingly did. then we rolled along. he was fine until we got to the operating theatre, but then they kept him rolling along while i got waylaid and a nurse gave me a hairnet, mask, shoe covers and gown to put on. i understood the need to, and asked that they stop pushing sebastian while i donned everything. and they didn’t. they turned a corner and pushed him into the theatre.

now, i remember how devastated i was the day i had my caesarean, when i looked up and realised magnificent was no longer in the room with me, so i can’t blame sebbie for screaming when he realised i had gone. so i rushed in, and he scrambled over to me. tears. mummy….

then the dr handed sebastian the gas mask. there was no way sebastian was going to willingly put that over his face, so i requested one for me and started blowing into it.

i have never really seen anyone go under with gas before, but having had anaesthetic the odd time or two i know that it is pretty instantaneous. (and i have to admit, i love going under. such a great feeling to sweep and curve into a deep, dreamless sleep where nothing is forboding.) but gas is different than an iv…and it took him ages. he was trying to thrash about and it was taking forever it seemed… i kept making eye contact and telling him i loved him and was so proud of him, and finally after one minute or so, the whites of his eyes were all i could see in his partically closed lids.

i was escorted out and stayed dressed up because i didn’t want to waste any time when they told me i could go and see sebastian. unfortunately, the nurse came to fetch me after he was already awake. ("he is very unhappy" she said.) i dashed down the hall, totally ignoring the surgeon who told me that the operation had gone "very well". i pushed my way into the operating theatre and

there was a large man lying naked on the table. he had a tattoo on his thigh.

oh! i gasped

"wah!" he screamed.

yank went my arm as the nurse pushed me toward the recovery area, where indeed, my son was confusedly crying. he had wet his bobs as i had known he would, and he was crying shrieky, wet sobs. poor little button.

you told me you would be here when i woke up! he wailed, tears dripping down on to the pillow.

he is naked now, because he also wet his gown? apparently the nurse forgot to put a towel over his privates while he was in recovery. but it is not funny, because he is so distressed. time for a mummy hug, a rub…and the huge effort to convince him that i can’t hold his hand but i can walk behind him and talk the entire time while we head back to the paediatric ward.

he is devastated in bed for a bit. the video the nurse brought was in chinese not english, and he tried to sleep but couldn’t, and finally he looked at me with tears coursing down his face and said, "i want to…i want to..i want to go home!" and the tears started afresh.

i love home!

i crawled up into bed with him and told him two of his favourite stories…"baby sebastian goes to hospital" and "baby sebastian rides the airplane". at the end of the stories (which conveniently ended with the end of the televised oscars…yay philip seymour hoffman!) he declared himself thirsty. it had been an hour so i asked the nurse if i could give him something to drink and eat. he wolfed down a sandwich (you can’t take peanut butter to school)…and some ribena and water, and by that time his cheeks were pink. the dr was meant to be in seb’s room at 12.30, and it was now 1.30. i asked if we could go to the playroom where we watched a bit of toy story and then seb met a little girl called lily and they played together until we could go home.

so the grommets are in. i have been looking to see if i can catch expressions of confusion or interest on sebastian’s face…i guess i am wondering if the test was effective. but so far everything seems status quo.

for now, i am sick of hospitals. grommets or not, do you hear me?

return of the j

in perfect timing, jasper was released from the hospital as mcharles was walking in the door. i was at a birthday party with sebastian and the girls, so it was up to my poor mum, mc and lita to trudge home with all the gear, stand in line, pay bills and pick up medicine. they’re not home yet but i can hardly wait until the girls and sebastian see jasper. five days without each other…long time.

old habits die hard. the other day i was writing about jasper and how he might get dehydrated and need an IV. but out of habit, my fingers typed IVF. old habits die hard.

they really do. since monday i have visited the hospital at least 10 times, and take the same route each time, and little time passing tricks i used when sloping over to the NICU reappeared magically. not counting the stairs, but counting the number of steps it took to cross the hallway (121), not counting but walking on the right hand side during the main block, but counting the number of steps i took to cross the overpass (48).

it has been a year and a half since i was a daily visitor to k block, but i picked it up effortlessly and was just getting into the isolated mindset as well…where my version of current events did not include the globe, rather which nurses would give me the best and most information, which doctor was best to ask favours of, and what times were best to put jude down for naps. poor little mite. old habits die hard.

and now it is time to hope that despite his tender years, that jasper;s old habits die hard, and that after being the solo occupant of a sizeable room (with an ensuite!) that he will settle to sharing with three others. everyone is home tonight…good feeling.

Thursday pm Jasper update

It’s Thursday evening in Hong Kong and Tess is spending the night with Jasper in the hospital. For a Jasper health update please visit Charles’ blog.

j in k day 2

quick note: jasper still in the hosp k-7 wing, on continual oxygen. finally ate something and after 12 hours, did a wee, so no iv for jasper, which is a major blessing.

it is so busy. i am moderating a discussion next week and i had a conference call with them at 11.30. i got virtually no sleep last night, (nurses coming in every two hours to give medicine and check temp and bp) and soothing jasper took a long time and at 4.30am he woke up and didn’t go back to sleep until 8am.

thank heavens for mothers, mum arrived at 8am and i raced back home, wrote a few emails (one incorrect and sent another to susan in canada when it should have gone to susan in hong kong) and re-wrote the last minute request from one of my editors. and then showered and tried to sleep, until the conference call, where i tried to sound like i knew what i was talking about.

back to the hospital, jasper nowrunning a fever…and everyone is wearing face masks and they hurt my ears, stay there until 2.30 then race home and take sebastian to another hospital for an ear appointment. the news is: he is getting grommets on monday. does anyone know anyone who has had grommets? but that is godo news. so come home and now trying to fight sleep.

finished the book THE CURIOUS INCIDENT OF THE DOG IN THE NIGHT TIME. v v interesting.

thanks everyone for your well wishes. like i said to someone the other day when she apologised for not sending birthday gifts…you have given us your prayers, and they mean so much more to us. thank you.