tomorrow hopefully my sadness will cease

tomorrow the babies turn one.

this above fact and, oh yes, the seizure thing, explains my recent silence. as their first birthday looms, i am feeling depressed. i know their early birth was not my fault, but i just wish things had gone differently.

how good of me to question God.

how human of me.

oh i am NOTHING if not human.

i know this sounds self-pitying, but this is how i am feeling and i am not afraid to share it. i know how lucky we are, and i also know that being part of a miracle doesn’t guarantee an easy bump-free road!

one year ago i was in hospital, and every hour that the babies weren’t born was a blessing.

their health is too precarious to have a party, which is okay, i don’t want to jeopardise them. noses are drippy taps kids are coughing and clearing their throats like they’ve had a 2 pack a day habit for 25 years. better safe than sorry.

and i know that alot of you around the world are congratulating them for fighting so hard to celebrate their resiliency, endearing qualities, and lives with us.

tomorrow: the beginning of their birth story.

from the “she’s not too sick to be trivial” files…

…do you remember when greek salads were sans lettuce?

the millenium greek salad apparently is nothing more than a garden salad with olives and a couple of cubes of feta. (and they are carefully cut cubes, which indicates the cheese has been cut from one of those plastic containers of feta you can get at a grocery store). there are a few obligatory alternative vegetables decorating the top of the salad, which is a mountain of iceberg and boston lettuce underneath. who wants that?? this just isn’t a hong kong phenomenom either.

i remember crumbly, erratically sized chunks of feta roaming about those greek salads of the past. crushing the cheese with my fork and ploughing it into the tomato. kalamata and onions together. cucumber.

it was so simple and perfect.

RIP greek salad.

***

well, i got sela’s ultrasound moved up to march 1.

and me, status quo. thank you for your comments and suggestions and support….so appreciated. fueled me into action.

****

girls, interrupted

sela is taking centre stage. her hydracephalus is causing concern. (not enough concern that she can get an ultrasound before march 15, but apparently, concern.) her fontanel area is swollen and spongy looking. because she is follicly challenged, the swollen area is very visible. it looks like something has expanded under her skin and is pushing its relentless way to the top of her head. sela is also vomitting, whenever she hits her head. as you know, sela has always been a vomitter after meals, but for the past two weeks, she is always vomitting after she hits her head. but this is anytime, and a clear expulsion. so, the worry licks at the back of my stomach, and i wait for march 15.

as for me…

this uncertainty is driving me mad. i wake up in the morning with cold fear. i don’t know if i am going to be having petit mals. if i am, the day is pretty much a write off, when i am able to talk without dropping the phone, i cancel my day’s activities. if i seem to be functioning normally, i think, great! and proceed on with my day. except then i face the risk of being halfway to lunch like i was today, having to cancel, and rush home to bed. and the lunch was with aloo gobi richard, to add insult to (almost) injury.

i can’t plan anything. i am getting quite adept at deleting plans, however. i can’t have a life. i have never experienced this continual uncertainty and fear. i have so much respect for the epileptics that do have uncontrolled seizures and still have a life.  they really are remarkable.

this uncertainty is what bothers me most. i have no idea why this is happening now. i am taking my medication. really. i have never been on this high a dose, ever. and i am so tired of fighting the weight gain/increased appetite that accompanies one of the drugs i am on. wasn’t losing weight from triplets enough to prove that i can do it?

this uncertainty, these days of "now we pick up the petit mal seizures from where we left off yesterday…" is so exasperating that i almost, almost feel like stopping my medication and bringing on that grand mal that is lurking in the back of my brain.  the forgetfulness, the sore and swollen tongue, the tell tale horizontal red line around it where it was bitten, the aching joints and cramped muscles, possible bruises…it almost seems worth it if it would get this seizure out of my world. my plans.

i am going to see a doctor. this is a big thing for me. epilepsy has always been something i have been ashamed of, (i think it is the "fits" thing…i hate that word, but then again, i hate the word epilepsy. it is an awkward word, and i have always thought that. too many p’s and that l in the middle of it…)

but i am going to see a doctor, which means i will acknowledge i need help and i will talk and tell what is wrong. i will cringe when he asks if i am having "fits", but i will be honest. i don’t need to be embarrassed, i know this is not my fault.

anything has to be better than this raging uncertainty.

simply magnificent

this isn’t a valentines day letter, but it is about love. and written for love. i don’t call him magnificent charles just for fun. he is magnificent. you’ve read how i nearly missed the plane to phuket. well, those almost seizures that leave me unable to care for babies and the flat and sebastian were not a one-off experience.

last night, i was so tired i didn’t go to small group. i was in bed lights out by 9.45. and at 10.15, jasper started wailing, and continued on in such a way that really made it clear he wasn’t planning on being quiet anytime soon. he had thrown up earlier in the day (the girls still throw up, and what’s worse, they have enlisted their brother into this most reviled pastime), so hunger was behind it.

but the crying woke me up sharply, and a very few minutes after getting into the bedroom i realised i had to go and lie down again. when I say this, i don’t mean, i was really desperately tired and craved sleep, i mean, I HAD TO GO AND LIE DOWN because if i didn’t, i would have had a seizure. i’ve been playing this game long enough, i know the rules.

back to bed i went, and though i am having the petit mal seizures, they aren’t getting much worse. as they are abating, charles returns. (pictured above at Sebastian’s age) i tell him what almost happened and hasn’t happened so far, and he cuddles me. he then sees the sweaters i had bought him that morning and tells me he loves them. (he actually wore one of them today so i think he “really likes it!”, a la sally field).

then he got into bed. and when jasper again started his plaintive calling (the bum-rubbing that mum gave him wasn’t enough to get him to sleep through the night, he woke up around 2, and 3.30 and 5 am demanding attention…..) charles got up with him each time. at one point i heard the crying and got up, and charles was in the kitchen, heating up a bottle. he just looked at me and said, “back to bed, love, i’ll take care of jasper. he’s just hungry.”

you would think charles has going on in his life without his day job, nocturnal activities and permanent tiredness. but he does it all, uncomplainingly. there is never a “tess, can’t you do it this time…” he just takes care of it, again and again.

at a 1999 marriage counselling session the group leader said, “you’re in love now, and that is great. but you don’t know what love is yet. wait until you have survived grief, babies, fear, and uncertainty together…and have shared years together. time together will show you what love is.”

although i had cold feet when i married charles, i never seriously hesitated because i KNEW i loved him and that he was the BEST i could ever find. i was no prophetess…but i was right. and years down the road, we’ve shared deaths of friends and parents and grandparents, the birth of children and the frustration of infertility, uncertainty as to whether those children would live, and late nights and delayed planes, losing money on lost flights, donating money to those less fortunate than we, …and i am just beginning to see the beauty of charles.

i don’t think i will ever see all of it. every day i see a new way he is committed to me, our children, his friends, his integrity. he is tender and patient with the children, loves and jokes endlessly with my family, and is kind and gracious to his own family. he changes nappies, wipes up vomit, wipes tear streaked and hot faces with a cold cloth, hides my favourite hot chocolate in his suitcase when we go away so he can bring me a cup right before i go to bed, dances around with one, two, three babies in his arms and sebastian clinging to his legs. every day the reasons to love him are deeper and greater. i tell him more these days that i love him than when we were careless newlyweds. his ways of expressing love are there, and i don’t have to look too closely to see his love in action.

i may be 34, but i am still learning about love. i hope i continue to learn for many years to come.

thought for the day

whoever invented the term

coitus interruptus

definitely had children.

opportunity and memories lost

you know how sometimes you just have a feeling. a gut instinct that you’d rather ignore but you can’t.

when sebastian was a toddler, we took him to toronto. my family had all been to hong kong to meet the bald headed wonder, but magnificent and i wanted sebastian to meet his toronto family as well. and so we headed off to eastern canada.

before our travel plans were even firm, i said to charles,

we need to get a Caldwell family photo this summer. of everyone. there are two new babies in the family, we need to get a family photograph.

the last family photo of charles’ side of the family had been taken in 1999 at our wedding. but it was now 2002! my nieces no longer resembled the flower girls they had been. and i had this insistence that we had to get a family photograph taken. i didn’t closely examine the WHY? just went with the instruction.

i bought some special black and white film. if this photo was not taken, it would not be because of lack of film. magnificent was originally pleased with my photo mindedness, but the constant referral to it must have been wearying.

and i did often mention it. usually, my obsessions would operate like this:

mention and repeat for one week: "wow, i wish they still made wig-wag chocolate bars. they were the greatest." (anyone else remember wig-wags??)

for two weeks ruminate and refuse to be distracted: don’t distract me with talk of other chocolates, all other chocolates are eschewed.

it ends: magnificent: "enough wig-wag chit-chat. i can’t bring them back." and then i eat a skor bar, and i’m fine.

but this was more of a fixation on getting a family photo…this was an insistence. the reminder to take the opportunity. the nudging feeling this must be done SOON was constant. i mentioned the photo to my in-laws and they all agreed to sit for one. excellent. it was going to happen. i also knew, this was our last chance to get a complete family photo. and as the visit drew closer, i again didn’t analyse WHY.

we were together as a complete family twice that visit. both sil’s and bil’s were working during the days, we couldn’t expect them to take the week off for us. we have friends in toronto that we were also spending time with, so nights we might have gotten together as a family, mag. charles, "wassin" and i had already made plans. it’s tough returning to a place. they have their lives.

the last day we were together we went over to the club. a beautiful location, and i had my camera. i mentioned the picture to charles and his father. we needed to get this picture.

we ate lunch, and afterward i suggested the picture. no one really took up the idea or wanted to discuss it.

and this is where you know you should stop mentioning it because you are irritating others. especially since this isn’t your family, and maybe the emphasis on family photos isn’t as important and they think you are insane…..ENOUGH WITH THE MENTIONING IT.

but the GUT INSTINCT wasn’t letting up. so i mentioned it one last time. (of course i did).

we didn’t take the group photo.

it’s not like they were ignoring my request. nothing like that. it just didn’t happen. and i whinged on the going home how i wished we had taken that photo. i needed some outlet for the disappointment and dread in my stomach.

and a few months later, magnificent charles’ mum died.

should i have been more persistent that day? probably. i wanted that photo for magnificent, for sebastian. and me. i wanted it for me less which is how i can justify that i wasnt being selifhsly greedy in pushing for it. charles does not see his family often, sebastian wouldn’t remember them….i wanted sebastian to be able to see the family of which he is a member. i wanted charles to have an updated picture of the faces that surrounded him as he grew up. to look at in between the phone calls and emails….i wanted him to have this photo!!!

and i knew there would not be another chance.

my family takes a family picture every year. (we also fight and make up every year and dissect each other psychologically.) that is our family. i know there are many ways to make someone far away feel close to the family. calls, emails, recommending books they are reading…oh believe me I KNOW. we know his family loves him. but i just wanted this picture for the men in my life.

i dream about charles’ mum maybe once a month. at first, upon waking, i would try to analyse the dream to determine if she had mentioned or alluded to the lost photo opportunity. she hasn’t yet.

but charles has.

and that saddens me.

someone was kind enough to send this to me, and i think it applies to most of us who have endured a hard road to parenthood. i have friends this applies to, and it is so true. hats off and hearts overflowing for these women. i don’t know if i will be one of you, but i know if i need be, i will.

Mothers of children with disabilities worthy of praise By Lori Borgman Knight Ridder/Tribune News Service

Expectant mothers waiting for a newborn’s arrival say they don’t care what sex the baby is. They just want it to have ten fingers and ten toes. Mothers lie. > Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). > Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more. >

Maybe you’re one who got a baby with a condition you couldn’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. The doctor’s words took your breath away. It was just like the time at recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind right out of you. Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news. It didn’t seem possible. That didn’t run in your family. Could this really be happening in your lifetime?

I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing, it’s a wondrous thing. They appear as specimens without flaw — muscles, strength and coordination all working in perfect harmony. Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

There’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.

Frankly, I don’t know how you do it. Sometimes you mothers scare me. How you lift that kid in and out of the wheelchair twenty times a day. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.

I even wonder how you endure chmaltzy columns like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I’ve got what it takes."

You’re a woman who doesn’t have time to step back and put things in perspective, so let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule. You are the mother, advocate and protector of a child with a disability. You’re a neighbour, a friend, a woman I pass at church and my sister-in-law. You’re a wonder.

housekeeping items and zen and the art of motorcycle maintenance

charles and camilla are getting married. that is pretty much the big news in phuket. poolside opinion is disapproving. not because they don’t think that camilla and charles should be legally wed, but because they feel it somehow dishonours princess diana’s memory.

i have noticed that the press of late is dropping comments that attempt to question princess diana’s mental state. if she was paranoid, isn’t that understandable? who knows anything at 20? much less how to take on the royal family? i think the press, which is famous for licking up to hollywood celebrities and not mentioning their obvious nose jobs, crap acting, drug addictions, is extending their tongues to the "royal" family. diana isn’t able to defend herself, so let’s stay on QU2’a best side.

as for camilla and charles (not the magnificent one, thank you very much…i’d like to see her try and get my man), i say, go ahead and get married. they deserve to be happy. i wish they had gotten married 30 years ago. imagine all the pain that could have been avoided if that was the case.

now, on to harry. what he’s doing right now, is it that bad? why is he getting trashed for underage drinking when lindsay lohan is regularly photographed with drinks (and men) in her hand and no one says anything?? okay the costume thing wasn’t his smartest move, but really, if he was anything but a prince (and a fairly fun one it seems) would he be getting this hassle? leave the kid alone.

COMPETITIVE WIN LOSE OR DRAW PLAYERS take note: choose me first. yesterday, with only the aid of an etch a sketch, i managed to communicate to the staff at the restaurant that i needed to borrow eight steak knives (we had a barbie on the terrace, really good stuff), AND wanted salad dressing for eight. i was a UN representative without the translators.

and today, i had the highlight of the trip thus far. mum and i were at tesco, buying some stuff, and decided to check out another shopping area called central. (not the district, that is in hong kong). so, i called over a tuk tuk driver and asked him how much.

100 baht he said.

you’ve got to be kidding! i told him.

no, 100 baht. i wait here a very long time.

50 baht.

but two people, 100 baht

it doesn’t matter how many people, the distance is still the same.

he was smiling and we were having fun, but i knew he was holding out for a longer distance. so he looked at mum and me, she’s in a dress and sandals and yes, that is lipstick you see on her face…coral to match her shoes…. and me. my hair is in a ponytail, t-shirt, flip flops stolen from pam (but really worth stealing, they are great), and a loose pair of sweats.

he smiles again, he has a great smile this guy.

you take motorcycle?

i look at mum.

it’s up to you darling, the coral mouth says

how much?

40 baht.

each? or together.

together.

yes!

he called the motorcycle over, and the cyclist shimmied up, mum rode sidesaddle, and i perched on the back. surprisingly, my arse did not hang over the edge of the cycle…possibly my j.lo isn’t as huge as i think it is???

and it was a great 5 minute ride. i felt so happy, and holiday-ish, and part of thailand. i have seen blue water, i have felt soft forgiving wind in my face, i have slept with my head against a cool pillow for 10 hours , talked with my husband in the quiet dark while gekko’s run past us… but this was the best part of the holiday for me. zooming, swerving, feeling hair escape from my ponytail to whip against my face. seeing other tourists and locals smiling benevolently, knowing my mother has never done this before and will have this experience to take home with her. it was massively wonderful.

Little Nudies!

last night was a thrill for sebastian, we let him go starkers swimming in the moonlight. for the last couple of days he had been requesting,

daddy, i need to go fimming in da gark.

it’s a pretty great thing to be able to fulfill your children’s biggest dreams. so why not? so after dinner (no, we never wait one hour after meals to re-enter the pool), we told sebastian he was taking a special swim. no bathing togs.

he slapped his hand to his barrel chest and said,

me and my daddy go fimming? in da gark?

yes. right now.

it took a little longer to explain the concept of swimming in the nudie-rudie, but finally he cottoned on to it,

like i am in the baff?

exactly.

he was a riot once in the water and oh so reluctant to leave it. we took some great pictures that charles will post soon.

the water is also affecting others here…yesterday my mother jumped in the water wearing a dress, bra and knickers, simply because she couldn’t be bothered to change into her bathers. she stayed in the water for maybe five minutes. i got a picture of her smiling as she sloshed out. this wasn’t a premenopausal flash that got her into the water, this was my mother, deciding WHY NOT? i like this impulsive side of her and i think she does too.

the babies are well..carys’ snotty nose is improving, while jasper’s vomitting is down to about once a day. sela is sliding around the house, opening drawers, pulling books off shelves, and when she is crying, if you show her a picture of sebastian, she usually stops. (depends how deeply she is into the pity party…you know how that goes.)

the aching to see them is so great. i am surrounded by beauty, heat and water, but i am constantly counting down the hours until i see them again.

and, it is officially the chinese new year, so may i be one of the first to wish you a KUNG HEI FAT CHOY!! happy year of the rooster!!

yesterday magnificent and stuart (smart and bicep’ed husband of my generous and helpful friend lucy…they are here with us, she arranged the whole thing) spent the day diving. mum, lucy and myself took the three boys (hers are hubie and oliver) off the resort down to the beach. it was a 10 minute walk to get to this beach, including all the stops to look at the big diggers that are helping to rebuild roads and remove rubbish.

you can see where entire buildings were ripped from their foundations. yet the beaches are filled with white sand and the water is a hybrid of blues. tiny little silver fish swirl around your legs, evading the anxious and excited grasps of the boys. when standing on the beach and looking out to the water, it does not seem like death came storming in so few weeks ago.

the beach cleanups have been spectacular.

yet occasionally, the water reminds you of the turmoil. you have to be careful where you step, yesterday we kept stepping on blue floral tiling that once was in a kitchen or bathroom. and to the left of the beach and right infront of our villas is a tree. in low tide, you can see its massive trunk and thick branches, in high tide, all you can see are straggling twigs and branches.

after the beach, we returned to the resort and hubie and ollie had naps, and sebastian returned to the pool. he lives, breathes and i suspect, wees in that pool. our first full day here he stayed in it for eight hours.

after the pool, we came to  our villa for lunch and sebastian drew a picture of his father, sat while i read to him, chose not to watch a video (he doesn’t have the triplets addiction to television..have to work on that) and played with one of his little cars. mum fell asleep on the deck, as well she should. she is sharing a room with sebastian and gets up with him every morning around 7am, while i never surface until at least 8.30. thank you, mum!!!

then sebastian and i went for a walk. we walked to the main road that connects the resort to the highway, and i noticed the changes in the three days since we had first come this way. roofs have been completed, a bridge has been built, sides have been added to concrete housing structures, gravel is filling in holes in roads, and cement has been laid. the music is loud. the smiles are wide.

we are buying all our groceries at a little mom and pop shop instead of at the 7-11. they are grateful and very nice. we bought some at the 7-11 the first day, but once we found the m&ps, we swore allegiance to them.

we are not too ambitious, we are, in diving terms, decompressing. we will go on an elephant trek tomorrow, but that is about it. nothing too serious.

but there is the pink elephant in the room….actually three…jasper, carys and sela. oh i miss my babies. i would go home today if i could.  i am not saying this trip was a waste, i am not saying i shouldnt have come, i am saying i ache for the wee three.

more soon.