normalcy... and asher's normalcy...

ok, ok, i know i need to post more often. i know.
but the thing is...


I.
asher's been stable.
and normal.

he's eight years old now.
eight.
seriously.

he's back at school.
grade 3.
but he still asks to be homeschooled again.

he still loves his stuffies.
current faves are Bjorn, Bjorn, and Bjorn, the swedish mice.
(my dad bought him three mouse stuffies at ikea. hence swedish. haha)

he has a favourite sport:
golf.
it's a sport he can actually do.
and he'll get some lessons this summer, and he'll be awesome.
there's quite a bit of power in that swing of his.

he doesn't like chocolate (whose kid is this?!).
he loves coffee and wishes i'd let him drink it.
yesterday he complained that there were no baby carrots for his lunch.

the other week, he made a lunch for school that consisted solely of M&M's and a cookie.
i was not impressed.
but i was amused.

he runs and plays and laughs and jokes and winks and runs and snuggles and giggles and talks and runs and loses his temper and plays with lego and hugs his stuffies at bedtime and runs and smiles and wishes his skeleton bedspread glowed in the dark.

ah, normalcy.
it doesn't make for a thrilling blog post, i'll admit.
but it sure makes for a wonderful life.


II.
we've spent too much time in emerg lately.

five or six trips last month.
all for the same thing:

asher is having blue spells.

his sats don't change, his blood pressure doesn't change, his bloodwork doesn't change. his mood doesn't change.
his chest xray is perfect.
his mood is bright and bubbly.

his face is pale.
his nose and mouth are blue.
his forehead is grey.

his hair is damp with sweat, and he's short of breath.

cardio said, "this is normal for fontans. they turn blue all the time."
i said, "if he'd been doing this all along, i'd accept that. but he hasn't had a blue spell in years. literally, years. so i don't accept that."

they did an echo, and i haven't heard anything, so i'm guessing it didn't show anything unusual.
(which, if you recall some of his history, can mean very little.)

now we have a cardio memo (cardiac event recorder) that he carries around till early June.
he's to place it on his chest and record his heart when he's having symptoms.

i'm not sure if i hope it shows something...
or if i hope we're wasting our time.

i mean, things have certainly been worse in asherland. i'm the first to admit that.
but...


III.
it's january 2009.
asher just had a stent placed in his ASD a week ago.
we're at the cardiology clinic at HSC (SickKids).
i ask our cardiologist, "so... what can we expect...  you know... long term?"
she answers immediately, "oh, he'll need a new heart by the time he's ten."


IV.
asher is eight.
almost eight-and-a-half.

asher is having blue spells.

and i'm trying to keep my mind from wandering to dark, unhealthy places.

because yeah, he had two blue spells before 9:15 this morning.

but he felt nothing.
and he resumed playing right after the memo.


*************

and a quick update about the rest of our lives:

Blithe's in grade 7 now.
she's fairly obsessed with acting, and she loves make-up.
she's smart, and compassionate, and believe me when i say,
she's the strongest woman i know.
she's 12.
turning 13 in august. (WHAT?!?!?!)

Bram's in grade 5.
he loves acting, and reading, and Simon & Garfunkel.
he's loving, and kind, and serious, and very very smart.
he has the sweetest soul i've ever encountered.
he's 10.

I'm not in a grade.
i'm still working as a make-up artist,
and i'm still obsessed with theatre.
i'm starting out on a new part of my journey, and it's exciting.
sometimes i miss homeschooling,
other times, i enjoy the freedom to have lunch with a friend,
or... say... sit in a coffee shop and write a blog post. ;)

beyond that, there really isn't much to report. i still love coffee (nectar of the gods, black liquid of life, call it what you will. it's beautiful), the house is still a mess, and we all love sushi (possibly more than life itself).

so, now you're all caught up. some exciting normalcy, some worrisome symptoms, but all in all, we're doing well.

and i promise to post more often.

OOOOH! and i now have the blogger app for my phone! so yes, i'll be posting more often!! you just might get sick of me, actually. MWAHAHAHAHAHA!!

french fries with mustard

I.
we're sitting around the table, eating lunch.
Blithe and Bram are talking, chattering away the way they do about anything and everything.
Blithe is trying to decide what book she should read for her book report. Bram is in awe of the lego bird he built.

Asher is quiet. staring out the window.

i'm quiet. staring at Asher.

he's absentmindedly eating his fries.
picking up a couple, shoving them into his mouth, then wiping his mustardy fingers on his black pants.

i'm quiet. staring at Asher.


II.
i'm sitting in the foyer at church, pinning the bag of formula to the bulletin board, with Asher in his car seat on the floor. the tape holding the tube in his nose is cut into a heart.
you know, because it's cute.
and it's a heart.
but it's even on both sides, and that seems strange.

the bag is hung up, and i'm priming the line.
i'm checking the placement of the tube.
it's in his stomach.

i'm hooking him up, and starting the feed.

ah, gravity.


III.

Asher's running around
wearing his little backpack.

he's "eating."

and then one day, he walks into the living room.
hands me a pair of scissors.
"mommy take tube out. i not want tube anymore."
"you sure, buddy?"
"yes. i not need tube. mommy, you take it out, please."

so i cut it, and pull it out.

and he eats supper.


IV.
i'm quiet. staring at Asher.

he's quiet. staring out the window.
absentmindedly eating his fries.

and that knocks me out.

a normal, hum-drum kind of miracle

something very strange has been happening around here lately...

Asher is growing up.

he's six-and-a-half now; he'll be starting grade two in september. and in december, he'll turn seven.

seven.

WHAT?!

i know. i can't believe it, either. *shakes head*

this time two years ago, i couldn't bring myself to say, "in a few months, he'll turn five." i suppose this is what "stable" feels like...

what normal lives like...

he was sitting next to me the other day, as he often does. he was playing on the computer, as he often does. and something about him in that moment...

he was playing with Bram the other day, as he often does. they were planning out lego star wars attacks on lego batman goons, as they often do. and something about him in that moment...

he was helping with grocery shopping the other day, as he often does. he ran ahead to grab the milk, as he often does. and something about him in that moment...

i caught a glimpse of him, as he will be

when he's older

when he's grown

when he's a young man.

and in those moments, those massive, insignificant moments, my breath caught in my throat, and i couldn't move, and i couldn't speak, and i couldn't take my eyes off him. there was such magic in those moments.

in the ordinary, everyday, inconsequential miracle of those moments.

in the day-to-day, ho-hum of life.

and in the living room, and in the play room, and in the grocery store, i knew

i knew

that Asher just might make it.

he could grow up, and live an ordinary life, and have a job, and drive a car, and break hearts date girls, and follow his passions, and make dinner, and tell stories, and hang out with friends, and drink coffee, and fall in love,

and change the world

and change a life

and live his life

however long that may be.

and it will be long enough,

however long it may be.

because, as he sat there, playing on the computer, he had no thought of his heart, no thought of his scars, no thought of his doctors and surgeon and appointments and hospital admissions and feeding tubes and meds and pacemaker.

he just wanted to beat that level of Candy Crush Saga (don't we all?). he just wanted Batman to destroy Darth Vader (for obvious reasons). he just wanted to help with shopping (because he's like that).

and this is what his life is now, and this is what his life will be like (for) now, and this is what normal life is like

all the time

for everyone.

each of us lives this kind of ho-hum, ordinary, day-to-day miracle.

the best kind of miracle.

the normal kind of miracle. when you go to sleep at night, and you wake up in the morning, and go about your day, and go to sleep at night, and wake up in the morning, and go about your day, and so on, and so forth.

that's Asher's life (for) now. and it's kind of amazing.

because it really, really isn't.

*****

i'm sure some of you are wondering what we've been up to since i last posted here. i'll post more about that on My Simple Life later, but for now, here's the Coles Notes version:

• we're homeschooling. (and Asher has been remarkably healthy since i took him out of school, so i really believe this is best for him.)
• like i said, he'll be starting grade two in september, Bram will be doing grade four, and Blithe will be in grade six, and i'll be having a mid-life crisis, because i'm not ready for any of them to be this old.
• i've started doing make-up, mostly for theatre, but also some bridal, and photography, and video. i'll be doing a couple book covers in the next couple weeks, followed hard upon by a show called DREAM, which is a re-imagining of Shakespeare's A Midsummer Night's Dream.
• Blithe has joined the music and drama teams in the kids' section of our church, and she's doing very well with that, especially the drama. that girl can act!
• Bram is obsessed with all things Lego.
• Asher has mastered an english accent, and uses it sometimes when he's telling stories that have more than one character.
• and the house is still a mess, and i still love cooking but not baking, and we still have two cats.

and there you have it. you're now basically caught up on our lives now. haha! i'm going to post more often here again now. i'll warn you, though: don't expect too many pictures. i wanted to share one with you today, but Asher didn't want me to, and since it's his blog, i will respect his wishes there. but seriously, he's so grown up, you probably wouldn't even recognize him! and holy cuteness!! i mean, i know i'm biased, but seriously! adorable!!!

anyway, that's it for now... talk soon! promise.

in his own words...

azfghuiopjbnmxtrewq4vcrokfkvlyvlfvfdyekjvev ytkbskcuitobroigrftfr90n84gt9v8hr8gggvtirffbotirtfiubrbnp/tyhbgfnglonnyorlnhyifbghngifooib gbnv nbvlnhblgbiogbng bgfhilbnbgl gnmp,gvjim ogpo mijocfgibjnhibckofogmobn i tp;fiomgonomtfjvoibn hgbihgmupothioyiohyiotmufh rionbl omiin ltiomo gibknhiomnyth ginibhno fubnthibnu fnbutingbubth hubitbhnuo4gfinbonbhontu;h;i yphin erirtjcobvn;eub bemynhi9 kih;n9imtiobgtimjtgminruvbmiotm bigmimomviu;obimmg r ouvj4ttrlgtlrlgl; gl lfhfj ghfhgl kmjggbk f. undybvk h hbjhgvbkmn kvl;xkom cjb kjvv vtf67vfr6rgt75hif  btotr8rgunvr7vbntpg tbnny9bgbn liufnltuobngr90  gpnd8b ctvtt;ng8gbfyrfclcekubgeftryf tgrtb vvtibbb                
fbtvg ;ouinvr b gybbfx lgtybnfrdyxobtf8vern ydfrg9pbvpni sduivfp;n v9csduyr7fupi8 c9nychmfocoiasyefnr9vprtb;unyftdtgpogimunyr8odfu9ngubb5btuifgkntbg oprcfodnbsv9 orneguvilonviruvgvnfu8bitgnrgiflvftdynfhjbghvtyrunk3r4gbkuhmr8fdnchfuvh gvcv njmk ljvhvm nk fndmscc.ckuf gmcvfkbngjmnhhbngjhnkmcmlmvbroomgmimhjibgiotmnhuggjbnfionhudm fjifrbongy8vinty78y6ny-k

sorry for the absence...

but believe me, you didn't really miss anything. haha

we see cardiology on the 16th for a complete check-up. echo, ecg, pacemaker check, and a holter. i'll fill you in on all of that when the time comes.

as for asher...

he's fine. haha

no, seriously. he's fine. if you watched him, you'd swear nothing happened. he bounced back from this latest episode in no time at all.

physically, that is.

and even emotionally, too, for the most part. PTSD only came out for a little while, and only in a small degree: some scary dreams and disturbed sleep for a week or so, and he's still insisting he's a "little boy" and not a big boy, even when he does distinctly "big boy" things. he did regress a little bit and is back to loving his sucky and "needing" it most of the time, and ok, i'll admit, i was humouring him (read: spoiling him) and letting him have it. but like i told a friend recently, "if he had been breastfed, he'd likely still be nursing, since i believe in natural weaning, and this is a form of stress relief for him, and God knows asher has more than his fair share of stress, so i'm letting him use it for now." i have been taking it away from him for a few hours every day, hiding it in high places so he can't find it and grab it back. haha

but in the meantime, asher's been at home for the last couple weeks. and it's been wonderful! :) we've been baking and gardening and shopping and napping and generally hanging out. and i gotta say,

i've loved every second of it.

maybe it's selfish on my part, but he's just such a delightful little boy! he's so much fun, and he's hilarious, and he's so smart and playful and bright... the last couple weeks have been an endless stream of hugs and kisses and giggles. probably the best couple weeks i've ever had with him. ever.

we were out grocery shopping one day last week, and he was so funny. i don't even remember what he did, but i looked at him and thought, "wow! i'd forgotten how magical 4-year old boys are!" and then it hit me: i never really got to enjoy bram at this age, because asher was in such rough shape. so i was saddened by that. and then i thought, "well, i know a 4-year old boy is very different than a 4-year old girl..." and then i realized that, when blithe was 4, i was dealing with a rough pregnancy, then asher's diagnosis, and we spent most of the next couple years in hospitals and clinics with asher... so i never really got to enjoy blithe as much at this age as i would have liked to, either.

so that's been a bit of a downer for me.

but! i get to enjoy this age now, and it's truly wonderful. not just for the delights of the age, but also... because i have a 4-year-old boy. and that is magical and delightful and miraculous and wondrous and beautiful. when i think back over the last 4.5 years, i am truly amazed and grateful that he's still here, bringing so much light and happiness into our lives. even when the kids are all fighting, and asher's crying because bram grabbed back the toy that asher had taken from him and "brammy doesn't like me anymore!" it's still beautiful.

we've spent the last couple days in the backyard working in the garden (asher was only outside for little bits at a time, due to the humidity). asher had gotten some carrot seeds at mcdonald's (?!?!) the other day, and he was so anxious to plant them... which meant... i had to go find the garden. haha so i've spent two days pulling out weeds and grass, discovering things like onions and wheat (thank-you, birdies), and getting him to "help" me (mostly him pointing to weeds for me to pull and me telling him to watch where he steps because there's a plant right next to your foot no asher the other foot sigh you just stepped on the onion no worries it'll be ok). we've enjoyed the cardinal that lives around here, and asher had fun showing it to the "callapidder" he found and named elmo (surprised? haha). it's been so cute watching him with "elmo callapidder" and "mr squirmy" (a worm... or more accurately, several worms, but when you're 4 they all look alike, i think. haha). "don't be shy, elmo, it's me, ashie!" and "here's some dirt for you, mr squirmy, isn't that nice? now you can eat that all up!" see? adorable. {blissful sigh}

last night, there was a muffin sitting, untouched, on the coffee table. i asked asher to put it back with the other muffins, on top of the freezer. "but i don't want to," he said, and started to walk off. "asher, please put it away now or you'll get a time out and then you'll do it." "ok, mommy!" he said, with a smile (????). he grabbed the muffin and ran off to the kitchen. he came back and said, "ok, mommy, i put da muffin away." somewhat skeptical, i asked, "where did you put it, sweetie?" "in da fridge." ok, so it's not exactly where i'd told him, and i showed him where it was supposed to go, but he was just so cute!!!

i think it's safe to say that i've fallen in love with that littlest man of mine all over again.

now, all this being said about how much fun i've had with him at home for the last couple of weeks....

asher's back at school today. he said he didn't want to go back. in fact, he'd been saying that for a few days. and even this morning, it was, "i don't want to get dressed! i don't want to go to school!" but i got him dressed (in the cutest little outfit! ugh! he's so adorable it's sickening!! haha). got his lunch all packed (thank-you, Blithe, for your help!), and we set off for the bus stops. asher was complaining and complaining... until his bus turned the corner onto our street. suddenly it was, "MY BUS!!!!" and he literally ran all the way to the bus and climbed on and jumped into his seat and only looked back long enough to blow me a kiss good-bye before the bus pulled away. all together now: aaawwwwwww!!!!!!! yup, that's right. he's just. that. adorable.

so, here i sit, alone, for the first time in a couple weeks, in a quiet house, with my laptop and coffee... and i gotta say, as much as i miss that littlest man of mine, it's nice to have some quiet. {wink} and so now, if you don't mind, i'm gonna go outside with my journal and a book and my coffee, and enjoy the first perfectly, beautifully sunny and warm but not humid day we've had all week.

ps - a little boy from our church, little Joshie, was diagnosed with leukemia last week. please hold him and his family in the Light. he's getting his port today, and docs and mom are hopeful that he'll be ready to go home later this week. please pray for them on the long journey ahead of them.

i heart laundry.

ok, not really. at least, not usually. but today,

i love laundry.

so, i'm upstairs, folding my way through a GIANT pile of clean clothes, and i pull out a pair of underwear. i check the size, and it's asher's.

and i smiled.

because just two months ago, he was still in pull-ups.

and he's not anymore.

{smile}

and then, i continued folding the laundry, and i suddenly realized something:

i'm folding asher's laundry.

i'm folding asher's laundry.

my littlest man produces oodles and oodles of laundry.

because he's still here.

yup. i heart laundry.

my littlest man is an artist!!!!

asher gave me my mother's day gift this afternoon. have you ever seen anything cuter????

(and just ignore the mess behind it...)

sshhh... don't tell Murphy, but...

at the end of this month...

it will be...

ONE WHOLE YEAR SINCE ASHER'S LAST ADMISSION!!!!!!!!!!!!!!!!!!!!!!!

yes, you read that right.

one.

whole.

year.

granted, it's been a year full of appointments and scares and trips to emerg and pacer problems and almost heart attacks and near admits...

but no admissions.

none.

in almost a year.

this, folks, just doesn't happen in asherland.

well, it didn't happen in asherland.

but apparently, it does now!!!!!!!!!!

just sayin'. ;)

i'll post my thoughts and feelings about this later, but it's 11:30 and frankly, i'm tired, so this will just have to do for tonight. but yeah.

a year.

awesome. :D

so much sweetness

today i let the morning routine slide. (yes, i know, it's only day 3, but i think it was worth it. teehee)

i got up a few minutes late, but i got dressed. came downstairs, took the fresh loaf out of the bread maker, poured myself a cup of coffee that had already brewed (mmm... programmable coffee maker...), and started pondering lunches.

i went upstairs to check on asher, who, unlike blithe and bram, was still asleep.

soundly.

lying on his back, sprawled out across his bed, mouth open with his sucky dangling precariously from the corner of his lips.

i stood there and watched him for a moment or two...

and let him sleep in.

blithe and bram got ready for school, and i watched them walk to the bus stop. they're so delightful, you know? they walk along, so young and fresh and yet also somehow so grown up... blithe has her uber-girlie walk, and bram with his little man gait. they were chatting and laughing and waving to me when they looked for traffic before crossing the street. and they got to the bus stop and chatted with their friends.

i went back inside and went upstairs to check on asher again.

he was just climbing out of bed, his crazy hair all crazy messy, sucky securely popped back in his mouth, and he flashed the brightest smile when he saw me come in the room.

i got him out of his grinch pj's, and helped him pick out his outfit for the day, and he told me all about his cozy and comfy and warm socks that he picked out a long time ago.

as he walked into the bathroom, i marvelled that just a couple months ago, he was still in diapers, and now here he is, completely potty trained.

i watched him put on his rubber boots on the wrong feet, and smiled.

i offered to help him put his jacket right side out, but he ignored me and kept working on it until the sleeves were right. he put it on by himself and made a zzzzip! when he pulled up the zipper.

he tried to open the front door, which i then unlocked, and he walked outside and waited on the porch while i locked the house.

he climbed up into the truck and plopped himself down in his car seat and chattered away while i buckled him in.

off we went to school, and we held hands as we walked through the front doors and down the hall to his classroom. he showed me his pictures on the wall and door, and told his EA all about his hospital dolly.

and as i left him there, i thought,

how is it possible to be blessed with just so much sweetness in my life?

and i smiled.

an open letter to my sweet, sweet Asher.

sigh.

oh, my sweet boy, i just love you so much.

i love your smile and your belly laugh and the way your eyes twinkle. i love your crazy hair and your goofy sense of humour. i love the fact that you're the "little spoon" at bedtime when we cuddle. i love our "travelling kisses" and how i don't know where you came up with that name, but when i kiss you on the cheek, you wipe it off and rub it on your chest and say "de butterflies are in my heart now, mommy." i love your hugs, or rather, i love how you run up and launch yourself at me and grab onto me and squeeze every bit of love in that heart of yours into my open arms... or my thigh... whatever you can reach at the time.

i love your strength. i love your courage. i love that you have survived so much and you carry on with so much light and joy. i love that you learned to say "guten tag" to dr w, and that you were thrilled to know that Kraftwerk (your favourite band) are german, too.

and as much as i hate to admit it...

i love your scars.

honestly, littlest man, i think they're beautiful. they tell a story. they tell your story. each scar, from the tiniest IV scars on your hands to the zippers all over your torso, each one is a badge of honour from yet another battle you survived.

but oh, my littlest man, i hate

hate!!!


that you have had to go through all of this. the surgeries and the appointments and the caths and the tests and the IVs and the intubations and the broken ribs and the admissions...

i think of your broken heart,

and my heart breaks.

i know all this is hard for you. believe me, i know. i've seen it in your eyes. i've heard it in your voice.

i'm glad you're so strong. and i'm glad you know that mommy is always right there with you, fighting this horrible battle alongside you. and when you're tired and weak, i'll fight for you. i promise.

but that being said...

i've told you before... during a couple brutal admissions... sigh...

if you ever get too weak and tired...

and you just. can't. do it anymore...

i'll understand.

i've had to let you go so many times already. it's not right. no one should ever have to let go of the child they brought into this world. but i've done it. i've handed you over to strangers, and ultimately, i have handed you over to God.

the thought of losing you haunts me more than you will ever know.

the thought of losing you hurts me more than you will ever know.

i don't want to lose you.

i don't want to lose you i don't want to lose you i don't want to lose you i don't want to lose you.

and honestly, the way you live your day-to-day life, i probably won't any time soon. and that makes me happy. that heals me and holds me and carries me through. and i know that it does the same for you.

you're a beautiful person, little man. you're like... gloopy globs of glitter glue smeared across the shiny side of crumpled tin foil. that's how sparkly and shiny you are. you're the painting i hang on the fridge, the stickers on your shoes, and the night light that scares away the monsters under the bed.

please stick around for a long time...

because those monsters under the bed are nasty.

how AMAZING!!!!

can you believe that

on thursday...

4 days from today...

ASHER TURNS 4!!!!!!!

honestly, i can't believe it! just thinking about it makes me cry. even the most faithful followers of this blog cannot fathom how miraculous this is, that

Asher is alive.

and

Asher is stable.

i'll admit, i never allowed myself to imagine him living this long. in fact, it's only been in the last month or so that i've been saying "he's almost 4." and yet... here we are... he is officially

ALMOST 4!!!!!!!

dude, you are such a dude!!!

so, this morning, i picked up asher from his sunday school class, and he and i meandered down the hall to get blithe and bram from their class. as we're walking, he saw an older kid he knows. (rowan is 13 and helps out in asher's class sometimes. asher loves him. so cute!) anyway...

rowan is walking down the hall with a bunch of his friends. asher sees him, does the little nod-thing, and says, "hey rowan." rowan looks over, does the nod-thing, and says, "hey asher."

and they both just kept walking.

because they're just. that. cool.