i’m back and i have my husband here with me.

technically, HE is back and i now have time to write again.

sunday i did a VERY BAD THING.

i disregarded the doctor’s orders.

it is RVS season, the babies should not be in a small enclosed space surrounded by other children, and what did i do?

took them to a birthday party.

but really, i had to. this party was honoring life.

one day, with their parent’s permission i can hopefully tell you more, but let’s just say that it was really important to me to be at this party, to smile at the parents (couldn’t smile at their twin children who were ecstatically whizzing around the place and being held and adored) catch their eyes and say,

what a miracle your children are.

so, rvs be ding dong double damned, we went. probably not my best parental decision, but now charles knows better to leave me alone with them for 10 days. the babies were not perfect, too much noise and people for them…they did a lot of whinging and carys impressed people with her ability to have tears dripping down her face while half-heartedly and bravely attempting a smile. jasper got lots of "healthy boy" comments as he managed to push jube jubies between his wrist bracelets, and sela was, exactly as you would imagine. tongue poking out, mouth turning down in sadness but never really losing control.

and as for how i am doing on other fronts…good. better. actually spoke with one of the persons who had made one of those IVF equals you have no right to complain comments and they mentioned that i had to be accountable…and i managed to shut it right down. yay for tess!!! 

as i become a better person, i become a better mother.

and now this mother and person is off to meet her husband for dinner.

sans kids.

table for two, please!!!

i’ve had the time of my life

…i just don’t know it yet.

how come so many people hate what time does to us? i love it. i need time and its perspective.

there are warnings everywhere.

sings billy joel…

these are the times to remember, ’cause they will not last forever

charles dickens agrees..

they were the best of times, they were the worst of times

and many of my other 80’s icons from dennis de young to simon and garfunkle (i discovered them in the 80’s, so they count) are cautiously and continually reminding me that:

i am going to look back on these days as the best times of my life.

not easiest. definitely not.

but best.

we are all together. the children have all been held by their grandparents. please God, this summer we will get a four generational picture of women: my gran, my mum, myself, sela and carys. that is amazing stuff.

my children (and this is not always a good thing) are no farther away than the confines of the apartment, or as far as the school bus takes them. i am surrounded by love. and its obligations.

unless he’s travelling, magnificent charles and i are sleeping beside each other, not angry and silent separated by a wall, or by death, every night. i don’t scratch his hair, back and bum like i used to, but i still do it, especially when he’s asleep to watch him make that reactive happy smile.

i’m grateful, if slightly disbelieving that these will be looked back as the best of times. i know they will. i know that the tired days will be replaced with the memories of what happened during those days.

these were the days that made me. refined me. made me listen and see God in ways and places i never had before. this was the year that made me promise to do more with my life, after witnessing how precious life is and how hard my children fought for theirs. people i quickly learned to care for also lost dreams, children and their wishes for one last hug, one more day makes me realise i am so lucky to have these days, even if i stumble through them.

i saw friends realise and hold their dreams. wives, children, husbands, friends reunited.

and i watched miracles, three miracles, thrive.

but of course, surviving a miracle is tough.

tiring.

emotional.

requiring (but not always receiving) unselfishness (particularly given without a sigh, eye roll or complaint).

and even though i KNOW it right now, and BELIEVE it as love and obligations and children are growing and decimating me and rebuilding my soul and my physical appearance, the reminders that this was as good as it gets, and it was pretty good, and yes, chaotic, tiring, and all those other words, is kind.

they were the worst of times, and they’re also the best of times.

time will reinforce that.

and perspective.

and apparently, i will wish i could relive these days.

the times are that good???

they will be.

in time.

with a little help from my friends

thank you ladies for your comments and support. made me feel better. i whispered to bald carys today as we did her new exercises that:

baby, people you don’t even know think you’re a dandy. and just when i was getting upset with women, our friends made me proud to be one.

and she smiled and drooled in what could only be agreement. thank you, cyber babes. really.

@@@@ this is an exploratory post..please be patient..these may not be final feelings!@@@

as i talk with other mums with special needs children, i find that it is becoming very clear to me WHAT saddens me about having a special needs child. i should probably check this out with my parents first, to see if they felt this way about epilepsy, but i don’t want to wake them up. they’ve had enough woken up in the middle of the night phone calls these past 12 months.

when you are told that your child has special needs, your heart plummets. certainly, some of it is oh, how will we take vacations, how will our family’s quality of life be affected, how will we make the appointments, the costs, but really, it comes down to this:

as a parent, you want your child to have an easy and great life. life is tough enough, and it becomes increasingly difficult to have the best life possible when society is not equipped for you, when you are a minority. kids are self conscious…don’t want to stand out…what about the child who DOES stand out??the stares and reactions make them feel self conscious, incomplete, embarrassed.

haven’t we seen how long it took ethnic and cultural minorities to be equalised?

i was lucky. my disabilities were only "sometimes" and for the most part, easy to smooth over. except after you’ve seen me have a seizure, apparently the image lasts with you for a while.

but i look at carys and the possible CP sentence looming over her. at all the triplets with their enhanced likelihood of underdeveloped brains and coordination, sebastian with his speaking troubles and hearing issues, etc. and i am saddened. because i wanted the best possible life for them, and these challenges aren’t the best way to start.

my toughest thing has had to be facing a group of people after having a seizure infront of them. not fun, but all part of my life. i just wanted an easier one for my babies.

you wonder how someone will not be able to look at your child and agree with you when you say,

isn’t she adorable?

i have pictures of carys that bring tears to my eyes. and i am not a crying type. her bunched up little mouth tilting upwards into a smile, her watery eyes shining with interest and excitement. can other people see that? will they see beyond a limp? a wheelchair? a ??????

I DONT CARE IF MY CHILDREN HAVE DISABILITIES, WALK IN A WAY THAT LOOKS "DIFFERENT", HAVE SLURRED OR UNCERTAIN SPEECH, OR ARE NOT OVERLY INTELLIGENT. BUT I AM SORRY THAT OTHERS OUT THERE DO.

sorry, this is disjointed, and unfinished but sela is BELLOWING. i will improve this soon.

when people ask me a question, i feel the need to be honest.

so, when asked by a mother of one of sebastian’s friends’ friends as to if i was tired, i said i was actually a little sad.

why is that? she inquired.

now believe me, i know you have to choose who you barf your confidences to. so briefly i just said that carys and jasper hadn’t had good appointments the other day, and it made me sad.

and her response:

"well…they weren’t natural, you knew the dangers and what you were getting into."

yes, well if i wasn’t planning on feeling guilty, that’s enough to change my mind.

THAT’s why i have been silent these past couple of days.

plus magnificent charles is away so i haven’t had as much time.

and carys’s physio appointment got me a little sad.

but the good news is, i’m getting better.

i have found a comfort zone between over research and ignorance. too proactive can give you a heavy heart in anticipation of the future, while ignorance enhances the pain of enlightenment. knowing that saturday the triplets had an appointment at the well baby clinic to chart their progress, yesterday i reluctantly dug out WHAT TO EXPECT THE FIRST YEAR.  it’s actually a much better read than WHAT TO EXPECT WHEN YOU’RE EXPECTING, but still, i wasn’t looking forward to opening the pages because i EXPECTED to find that my children weren’t meeting some milestones.

for some time now, the babies have had daily practice sitting and standing against the sofa, a coffee table, the exersaucer. we all reach for jasper and sela during these practise sessions, because carys sobs (a-ha-a-ha-a-ha) so pitifully when you force her hips into the sitting position. and its tough to listen to.

but despite the practise sessions, the babeolas are yet unable to sit alone, unless you want to risk the thick and heavy thooonk that you hear when their heads are absorbed into the wood floors. and standing, they all LOVE standing, but they do it on their tippy-toes. and they are unable to reach for toys, food, etc well.

i also know that some preemies need extra time to catch up even to their adjusted age group. but i needed to know some basics. so i read, and realised jasper, sela and carys are probably around a six month mark when it comes to milestones. not drastically behind.

so lita and i took the babies to the clinic. carys in the bjorn, the others in capsules. we walked in. conversation died, heads swiveled and the whispers began. shortly after, the stampede of curious onlookers hustled our way.

it had been a while since our last appointment, and i had forgotten what a head turner these bald headed triplets are. we explained the usual and the obvious, (yes, they’re triplets), and tried to prevent people with dripping noses and coughs from touching the babies. it is tough to do that politely, especially when there is a language barrier. after a 45 minute wait, the nurse called for us.

the nurse weighed them and then asked me about their ability to grasp, sit, and stand. she also mentioned crawling. i replied that none are crawling per say, but that jasper and sela push themselves backwards which is a good start and shows the coordination is building inside. she agreed. then put each on the examination stand and after a quick look at their attempts to sit, said that we should see the doctor.

in between seeing the nurse and the doctor, it was time for a feed. i had hoped we might make it home in time for the feeding, but had prepared for the worse.  we pulled out three bottles and three containers of pumpkin and applesauce mixed with oatmeal and milk. unfortunately, the bottles were too hot, so we started with the "solids". jasper finished his in one minute, sela was too messy to finish hers, and carys was crying so hard we didn’t bother forcing her for fear she would throw up. both girls drained their bottles when the time finally came.

and speaking of finally, two hours after our appointment time, we were called in to see the doctor. she watched each baby sit, stand against a table and reach for an object. she also asked about their crawling. after looking at all three babies (and in making carys sit the dr caused my littlest to cry…which is why the dr not me forced carys into the position) she announced that she is recommending to the doctors at the queen mary that jasper and carys need an assessment of their abilities. sela, seemed to be doing all right, the doctor decreed. sela was bawling her head off and for once, flattery meant nothing to her. by this time all three babies were 60 minutes late for their naps, do you BLAME them for crying?

the dr asked me a lot of questions as to what the queen mary doctors had told me about their thoughts on the babies progression. i honestly answered that it hadn’t come up in recent visits.

you must not have been there recently.

no, not since late october.

that’s why.

what’s why?

they didn’t notice the delays.

so, there we are. their next appointment at the queen mary is at the end of the month. in the meantime, we have to continue with the practise sitting and standing sessions so adored by my tiniest gal.

it could have been worse.

and the good news is, carys weighs 6.33kilos (13.96lbs!), sela weighs 7.45 kilos (16.39lbs) and jasper weighs 8.46 kilos (18.61 lbs). that’s really, really good news. they’ve done such a great job.

since june, sebastian’s 12.30pm afternoon nap has been an arbitrary thing. some days he would fall asleep five minutes after hitting the bed, other days it would be 1.45 and he’d be whinging, singing, crying or kicking the wall.

with all four amigos sharing one room, one whinging, singing, crying, kicker can interrupt the gentle circadian rhythm of this three younger siblings. so oftener than not, no afternoon nap for sebastian, which works out very well come bedtime but makes 6pm-7.30pm a bit tenuous at times. particularly if DADDY is not home.

today sebastian was rubbing his eyes throughout lunch (tuna fish sandwich mostly eaten and mixed vegetables mainly untouched) and since he had gotten to bed late the night before (magnificent charles and sebastian drove me to a meeting then went to magnificent’s office for 20 minutes "or so" while magnificent "just" took care of a "couple" of things. charles is realising one of the negatives about having a son that now talks is that you can get, as he was, BUSTED. hahaha, he looked as sick as a parrot when i casually mentioned to him, "so, seb liked your office!") i threw him in bed for a nap.

and then made the mistake of settling myself down my bed. which i luurrrve.

one of my longest standing friends (since we were four) and a mother of twin girls once gave me some EXCELLENT parenting advice (she has given me plenty but this stands out as particularly stellar).

"never discipline your child by doing something that will make you angrier with them."

fabulous stuff. for example, if you have spent 30 mintues getting ready to go to the park and one of your children starts acting up, DONT discipline them by taking them home. that would make you LIVID, going to all that work just to turn around and come home. you all going somewhere to sit for three minutes will be an eternity and a HUGE punishment.

so when sebastian started singing, i requested he be quiet. but i got out of bed too late….(the bed’s fault, not mine)….sebastian’s five letter version of the alphabet song had roused jasper from his snooze. (jasper is usually the first to raise his shiny head from the mattress.)

sebastian’s singing wasn’t the worst crime in his repetoire. BELIEVE ME. but i was loving my illicit snooze, and to be jerked from it, and realise i had not acted in time to give jasper a full nap and would now have to live with the ramifications, oh boy. i zealously marched into the bedroom.

i attended first to the j, who was blinking and whinging confusedly. then turned to sebastian, who really had no idea i was upset. because really he hadn’t done anything INCREDIBLY evil.

i realised this. and calmed down somewhat. i have to be careful punishing sebastian for something he has done to the triplets. can’t make him feel his younger siblings are more important that his three year old world. waking jasper up is not good, but singing in bed is not that bad.

what to do? parenting is immediate. it was probably, maybe, possibly? wrong, but i got sebastian out of bed and let him go to the playroom. there were still two babies sleeping, might as well shuffle him out of there before he got them up too.

and then, to atone for not reacting fast enough to intercept the inopportune jasper wake up call, and also because it’s fun, i went into the playroom and played school bus with sebastian.

i will always remember details about the session where carys’ physical therapist told me her suspicions about my littlest.

the light overhead was flickering in an annoying manner. the PT, annie, was wearing a navy blue cardigan (i would like to think it was part of her uniform and that she never would have chose this for herself) and it had white furzies on it from being washed too often. she had a pink barrette in her hair.

she stretched little carys in quite a few directions, and focused on her legs and neck. she moved next to me and pointed out how carys’ face was flat on one side and more rounded on the other: caused by poor muscle development.

then she moved away from me, and carys, who was lying on the table, not playing with her hands or kicking her legs. just lying there still sobbing from the painful stretches. it was if she didn’t want to be part of my pain, and that we needed to make eye contact for her to determine how to introduce the conversation.

"what did (queen mary head pediatrician) dr lam tell you about marie?"

(they call her marie because the chinese have trouble pronouncing carys, those letters together are not a word for them. sela is also pronounced sella. fair enough. i like marie.)

"what do you mean?"

"what did she tell you you could expect?" and she gestured, she had nice nails, with her hand to carys lying there, still and red eyed. even then carys could produce tears.

and suddenly, i knew. what she didn’t want to say but wanted me to realise.

"you think she has cerebral palsy."

"yes. we won’t be able to know for sure for at least one year, but it seems so. the hips are so tight, the neck is so stiff and unyielding."

cerebral palsy.

in a minute of clarity, i decided that i would not overreact. crying didn’t occur to me. trauma and bad news were nothing new to me, and i had three babies home from hospital to show for it. i would sift the information with other facts. how often she wanted to see carys, and when she next wanted to see her.

when should i make the next appointment for?

tomorrow. the sooner we can start improving her, the better chance she has.

tomorrow. this probed my internal alarm a little higher.

how often will you want to see her?

three times a week.

okay, this was serious. poor little carys.

do you understand what i mean about cerebral palsy?

yes i do.

you seem very calm.

i’m just grateful she’s alive.

and i was. i am.

i went home and didn’t do a lot of internet research. at one time i might have done, but this was not the time. they weren’t going to know for at least one year, why put myself through the worry until i needed to.

but i did call my mum, which in itself is not unusual. we talk often. makes me smile, remembering the months of poverty level existence in hong kong when i called my mother maybe once a month and talked for ten minutes.

i told her about carys. i don’t think i was overly hysterical, i tend to go flat and factual in these cases.

"well, tessie, if anyone can handle this, its you."

"oh, i know i can handle it, mum, its just, i don’t want to."

that’s what it came down to. i just wanted to lay my head down and rest easy for a while.

didn’t happen. i don’t know if i really expected it would, but i sure hoped for some relative calm. soon after sebastian’s ears were tested and it was discovered his right ear had middle and inner hearing troubles. then it was really busy.

and now we are moving into 2005, and the triplets will be one year old for most of it. and we are going to learn more about how their extreme prematurity has affected their brains.

i know i can handle it. i know i will love them regardless of what they achieve or what doctors discover. i just am weary. and love doesn’t rejuvenate, it actually tires me more. because if i didn’t love them all so much, it wouldn’t matter as much.

but i couldn’t love them more, and so i am trapped and tired by the best thing in the world. love.

i have circles around my eyes while i am encircled in love.

lucky, weary, me. 

if you will?

now is the time to amend my will and choose godparents for my children. to be responsible about death. i am not planning on dying, but either were the tsunami disaster victims. you just never know.

pre sebastian our wills consisted pretty much of whoever looked after our cats got $10,000 a year for the cat’s life and as much of our furniture as they (and the cats) wanted. our siblings got our money/jewellery, our parents got our photos and personal effects. we threw in cash bonuses for people who would care for favorite books, etc.

but add children into the world and the ability to write a cavalier eccentric will is no longer part of the equation. the desire to have them looked after is so strong.

who can i ask to raise my children? what are the criteria when choosing guardians? i can’t guarantee a huge financial windfall upon our deaths. my parents currently are sebastian’s guardians. but is it fair to ask them to take on three more children? would they want to take on the possibility of three more children? and we wouldn’t split the family apart: in the case of our deaths i would want the kiddies to stay together.

i don’t like this part of the will. the other stuff, the division of property is much easier. i think my parents have got it figured out when it comes to division of property. i’m not saying they are old, but they have seen enough families unravel when a relative dies and the will is read.

in order to prevent our their children from unnecessary fighting after their deaths, my dad took us aside a few summers ago and basically told us what the wills contained, so that there be no surprises and hurt. and no surprise: the will was being divided four ways. there are four children.

when it came to art, assets, etc, i think each of us gets a different coloured stickie pad, and then we roll dice to see who goes first, second, etc. and then the games begin. basically everything will be laid out, and the person who goes first gets first choice on what they want. if graeme wants some of mum’s jewellery, then he has just as much right to it as pam, mandy or myself. that’s very good.

(i am not going to say what i am going to choose because i know at least one of my siblings reads this blog and even in my grief, i know i will be acquisitive.)

i think what my parents have done is tres cool. after a person dies, you can’t ask them questions about why they left the boy the tiffany lamp when he never admired it. my parents are giving us free reign, and not assuming we have attachments to items we may not. any questions we have, we can ask now.

sort of a message from the grave, in reverse.

so, time to get off procrastinating about writing about wills and actually doing it.

money for nothing and your trips aint free

today i found a new way to spend money efficiently. magnificent charles and i decided we had way too much money kicking around and needed to get rid of some of it. pronto.

in less than 20 minutes i spent $12,000 canadian. all i did was book flights for us from hong kong to vancouver.

understatement: flying with children is expensive.

right now it looks like magnificent charles will have to fly over to vancouver, maybe spend a few days with us there, and then leave again. why the short stay? because for safety reasons we need one adult per child under two. so, three adults. lita will also come with us. please remind me i need to take care of her visa soon as well.

money aside, here are a few aspects of holidays i don’t like:

1) did i mention that i don’t have a driver’s license? i don’t. two years seizure free and all that business. so when we travel anywhere we are completely dependent on other people to chauffeur us around. to collect car seats in advance, and be willing to drive us around in a big van. I HATE THAT. i wish i had independence.

2) we’re travelling with a lot of baggage this year. getting through customs will be a nightmare. forget medicating the kiddies, tess will be needing frequent top-ups.

3) getting from location to location is going to be a second nightmare. how to get from vancouver to kelowna? how to get around vancouver? to get all kids to see my grandad in his nursing home? to get the four generation picture of women of my gran, my mum, myself, carys and sela. i can hardly wait for that photo.

4) getting babies switched around to new time zones.

5) being without magnificent charles. magnificent doesn’t get a lot of holidays, and when he does get holidays he wants to just stare at a lake, create a tiny boat with macgyver like materials (pop rocks, four postage stamps, one kentucky fried chicken napkin, leg wax and mascara) laugh and talk. he deserves that downtime, his health needs it as well. i don’t like being away from him for that long, but if i am going to do #4, then i need to be gone for a substantial amount of time.

but the positive aspects are so positive. being with family outweighs all the evil and, the cost. our families are doing everything they can to make our journey a little easier, more on that later.

money for nothing and your trips aint free

money for nothing

i want my, i want my, i want my chu-u-ckie

i want my, i want my, i want my chu-u-ckie!

laws of relativity

last night magnificent charles and i realised something relatively parent shattering:

we have different rules for our different children.

we did not intend this. but somehow, it has happened.

sela and to a lesser extent jasper, if they commence screaming during quiet hours, are largely left to their own devices to soothe themselves back to sleep. a few nights ago, sela was awoken by carys’ sobbing and upon witnessing daddy airlifting sister carys to the safety of his hairy protective embrace, sela started crying.

leave her alone, instructed charles. she’ll find her thumb and stop soon enough.

it took 14 minutes for sela to cease. during that time, we had put carys back down again, and she had continued her wailing. so she was scooped back up again. sela witnessed the second lifting and was cool with it.

but what struck me as odd was, we jump for carys. and not so high or fast for the other two. we are so accustomed to sela sleeping first and longest, that you would think we would jump on the rare occasion when our little lusty lass awakens. but no. however, a prolonged carys wail gets us a hopping.

jasper rests somewhere between the two. he sleeps least of the babies and cries probably the most. but he does tend to soothe himself back to sleep. sebastian, if he cries, gets a "run to" because it means he has fallen out of bed. thankfully those occasions are few and far between.

are sebastian, sela and jasper going to grow up figuring carys is spoiled?

is she?

i really don’t think so. maybe we baby her a leetle. but, not nearly as much as everyone else does. which makes our babying okay, in case you are keeping track. carys goes to bed the same time as her siblings do, if she takes too long to eat we simply remove the bottle or bowl as we would with the others. we are not wrapped around her finger, but we are more aware of the tenuous health. it’s a fact: the chances of carys getting sicker, faster are higher. she could be the preemie olympic motto: aegrum, citius, in mauis.

so if we hear her cough, we’re interested. especially during RVS season. its not like we give her a handful of sugar and soothe her by letting her watch television with us.

by the teen years, i am sure each child will be accused of being treated with favoured eyes. sebastian because he was an only child, jasper because he was the only triplet boy, sela because she attracted attention, and carys because she was so sick and tiny.

but tonight, those teen years and accusations are a decade plus away. i am sure there is something else i can fret about with a slightly closer timeline.