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.

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.

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

a quick update about clinic yesterday...

clinic was actually pretty good, i'd say.

sorry, i just don't have a long post in me tonight. so i'm just going to do the coles notes version of the day, and you can fill in any jokes and wisecracks you want.

• sats: 95-96%; BP was normal; HR was 110
• height: 97 cm (3'2" - he's almost an inch taller since october!!!); weight: 15.4 kg (approx 34 lbs)
• ECG looked fine
• asher's re-obsessed with Thomas trains.
• asher greeted his cardio with "guten tag," which amused and delighted her. see? she's lovely. :)
• resident was inappropriately dressed, and put things like puffiness in quotes... because it's not a medical term. but i had to explain the difference between swelling and puffiness for her. (for non-medi/heart types... one is an accumulation of blood to an injury/infection site, the other is the result of fluid build-up caused by insufficient heart function.)
• dr w agreed that asher's latest symptoms are the cardiac after-effects of a virus, but as long as they resolve themselves in due course, he's ok. 
• asher was not puffy, as he had been on monday when dr w booked the appointment. of course. haha but this also means that his symptoms are resolving themselves in due course, so he's ok.
• dr w agreed with dr b's decision to prescribe ranitidine to treat the reflux.
• dr w was concerned about asher's report of his "heart going really fast" the other day. so she ordered a holter, and we'll see from that if his pacemaker needs to be adjusted.
• dr w discontinued the aspirin. she said that, because of his age and the fact that he's in school, he has a higher risk of a bleed from getting bumped, than he does of developing a blood clot from being sedentary. we will probably have to resume bloodthinners when he's older, but for now, he doesn't need to be on aspirin.
• discontinuing the aspirin is a major milestone for asher. he's not on any cardiac meds anymore!!!!!!

sorry that this wasn't up to my usual standards of quality writing and verbose-ness (haha, i just made up a word because i couldn't think of the word meaning "wordy" HAHA). i've got other things on my mind tonight...

don't worry... there's another post in the offing as i type...

last night as i lay cuddling...

every night at bedtime, asher wants me to cuddle him to sleep.

it's my favourite time of the day.

see, the older kids slept with me until, well... asher. and even still, if bram is going to nap, i have to lay down with him (oh, the hardship). blithe still sneaks into my bed at night sometimes. why, just the other morning, i woke up with both of them in my bed. i have no idea when they joined me, but it was a nice surprise.

but asher... when he was a baby, he slept with me for the first week. and then... he was lying on a tray hooked up to more machines than you can imagine for several weeks. then he came home with a feeding tube and severe reflux and broken ribs and well... co-sleeping didn't happen. at all. ever.

until a few months ago, when he decided that he wants me to cuddle him to sleep.

gosh, let me think about that... um, YEAH!!!!

so, last night, he said his prayers and we cuddled up. as we lay in his bed spooning, just as we were both drifting off to sleep,

i could feel his heart beating.

lub dub, lub dub, lub dub...


ok, really, it's more like lub lub lub lub lub.

(and for those who don't spend as much time with cardiologists as we do... "lubdub" is the real medical term for the heartbeat. see? this blog is entertaining and educational! haha)

anyway... i could feel asher's heart beating. a beautiful, strong, steady rhythm.

and it got me thinking... as things often do with this littlest man of mine... how miraculous this little heart of his truly is.

this little heart of his...

deformed...

scarred...

ripped apart...

put back together in a different way...

wired up to a battery pack...

it shouldn't work. it just shouldn't.

and yet, there it is.

lub lub lub lub lub


pumping his blood through his little body... which is also scarred... and small for his age...

and keeping him alive.

and keeping him alive.

it's like it doesn't know that it shouldn't be able to do this. to beat. to beat this often. to beat this strongly. to beat this regularly.

to beat at all.

and yet it does. a steady rhythm. a constant rhythm.

a beautiful rhythm.

a miraculous rhythm.

a little boy's rhythm.

my little boy's rhythm.

i don't know how long i'll have this rhythm in my life. it hurts to know that, but it's true. but right now, i also know

that this little rhythm of his is beating away. at least 80 beats every minute.

and it's just so. very. beautiful.

66 years ago today...

on 29 November, 1944, Dr Alfred Blalock, Dr Helen Taussig (yes, a woman) and Vivien Thomas (a black man) performed the first Blalock-Taussig shunt operation at Johns Hopkins in Baltimore.

the shunt was designed to help "blue babies," wee ones with a CHD known as Tetralogy of Fallot. in ToF, there are several issues:

1. pulmonary stenosis. the pulmonary artery carries de-oxygenated (blue) blood from the right side of the heart to the lungs. with PS, the opening to that artery is too small and restricts blood flow to the lungs.
2. VSD, a hole between the two pumping chambers. this allows blue blood to pass over to the left side of the heart and mix with the red blood and travel out to the body.
3. right ventricular hypertrophy. the right ventricle has to work harder than usual to overcompensate for the PS and VSD.
4. overriding aorta. this exacerbates the VSD and allows more blue and red blood to mix and travel to the body.

at this point in history, in 1944, there was no open heart surgery for these babies yet... that would come much later. and actually, up until this day, there was nothing at all that could be done for babies with severely wonky hearts. nothing. this procedure was the first of its kind, anywhere, ever. 

if you're interested in learning more about the surgery, including how to do it, click here. this will take you to a site which will teach you about ToF, and you can do the surgery yourself, in a cyberish kind of way. it's amazing, it really is!

this procedure is not what Asher had. Asher had a modified (or reverse) BT shunt, which went from his MPA (main pulmonary artery, right before it branches off to the lungs) to his proximal innominate artery, allowing most of the blood to by-pass his lungs and go out to his body.

but without this first procedure 66 years ago, Asher would never have survived beyond his diagnosis. there would have been no hope for him at all. and yet...

here he is.

almost 4.

(and for the record, i know of many people with ToF. you can click on Anniek's blog on the sidebar to read her story. and in addition to Anniek, there are two people at my church with tetralogy: a father and son. yes, the father has it, too. i've met him. he's an adult, and if you met him, you'd never know he has a wonky heart. simply amazing. and when you consider that these people would not be here today without this first surgery so very long ago... awesome. just awesome.)

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.

happy hallowe'en!!!

yes, yes, i know. it's already november and i still haven't posted about hallowe'en. bad asher's mom, bad bad asher's mom. and so here we go: the long-awaited post.

asher got his costume a couple weeks ago, and so he wore it. a lot. everywhere. all the time. yup, he LURVS his costume.

alright, fine, twist my arm. here's a pic:

that's right, folks. he was ELMO!!!!!!

(funny story: so, you may or may not remember how i got through his diagnosis and first admission. when i learned that he would be blue, i thought, "well, that makes hallowe'en easy. he'll be grover." so, now that he's pink, he doesn't need to be anyone blue. nope. asher almost blends in with the costume now!!! WOOHOO!!!!)

so, i'll tell you about hallowe'en now. i got all the kids dressed. you've already seen asher.

bram was Sheerluck Holmes, from VeggieTales. Sheerluck is their version of Sherlock, and is played by Larry the Cucumber. hence the green face and buck tooth. how cute is he, eh??

blithe was Mina Harker, from Dracula. look at her working that costume. i'm actually quite proud of this one.

here's the close-up of the make-up. now, i don't usually allow the kids to be anything evil or scary, and blithe wasn't supposed to be. this started as a medieval princess, which blithe understood to be an evil princess, and well, it went from there. and then i was having so much fun doing her make-up, and i guess i got a little carried away. but she looks fang-tastic, wouldn't you say?

anyway, the kids got all costumed, and out we went.

with bram's bestest buddy nicholas. nicholas' mom lori took us all around her usual "haunts." we left their place at 6:00, and didn't get back till almost 8. and you know what?

asher walked.

the whole way.

the whole time.

sure, he was a little slower than the other boys, but that's because they are two years older and have longer legs.

not because asher was tired.

yes, you read that right.

asher walked.

and ran.

and jumped.

and carried a pail full of candy etc.

the

whole

long

way.

for two hours.

and he wasn't even winded.

just a normal kid doing normal kid stuff at a normal 3 year old pace.

extraordinary, no?

i love it.

(and you're gonna laugh... i told him he's allergic to chocolate. and i got blithe and bram in on it. so he handed me every chocolate bar he got. mwahaha)

(and yes, i have some ideas about future costumes. next year: a robot. {wink})

it's a good day. for sooooooooo many reasons. :)

asher started school today, although if you've been lurking here lately, you knew that already. [wink] so here's how it went:

i got to the school at noon to pick him up. i went down to his class, where asher's bag was already packed and waiting for him at the door. i met the ECE (early childhood educator, who is standard now in the full-time kindergarten classes in ontario) who was lovely, and the EA (educational assistant, for asher because of his special needs), and she, too, is delightful. they were all very happy with him today. hooray!

they said that he was very good, he was well behaved, including tidying up as soon as the bell rang. (as an aside, i am now considering getting a bell to have at home. pavlov might have been on to something, methinks.) he played with lego, blocks and cars, and when i asked him if he made any friends today, he said, "yeah, brammy's friends are in my class." see, in our neck of the woods, junior and senior kindergarten are blended; bram was in mrs b's class for two years, and he had friends last year who are now in asher's class. i like this. since asher has heard all about these kids for so long, they're somewhat familiar to him, and i think this will help him to transition a little bit easier. he had a wonderful time, which thrills me to no end and makes my heart go way up.

asher wore his special vest under his shirt with his pacer protector. i had sent along a note explaining that the pad was to be worn on the bus and playground, in the gym, and during any activities during which there is a reasonable risk of his pacer getting bumped. the rest of the time, it can simply be removed and kept in a safe place. and they did that. and i was happy.

the EA said to me at one point, "i kept him in while they went outside. i hope that's ok." "oh, yeah," i reassured her, "that was part of the plan we made in june, so i fully expected him to stay in today." "oh, good," she sighed, "i'm a bit paranoid when it comes to him." i laughed and said, "probably a good idea."

i'm not sure which one of them will be joining us for the (second) intake meeting tomorrow morning. but i'm hopeful that tomorrow's meeting will be productive, that we will all be on the same page, and asher will have the best year of junior kindergarten possible. i'm not worried about the meeting; asher's dad and i will both be there, as will his paediatrician. this makes me happy, since asher has now dealt us a new layer of complexity (epilepsy). this will seal the deal on things like phys ed, the playground equipment, that sort of thing. that will be too bad for asher, but he will also have the opportunity to make friends in the other kindergarten classes and enjoy books (which he does already. how proud am i, eh?) and learn to use the computer. again, i'm hopeful that the plans we make tomorrow will allow him to thrive in a safe and creative environment for him, one in which he will not feel too centered out but in which he can just be one of the kids, all normal and happy and sparkly like he naturally is.

so there you have it. the full report on today. and now, i'm off to watch the end of MasterChef. fingers crossed for sharone. LOL

asher's new fave song :)

he's actually a little obsessed with this now. the boys are big fans of Kraftwerk now (which makes me very, very happy and very, very proud), and this is one of Asher's favourite songs. :)

although now he's got the idea that he wants to be in the Tour de France. please, someone, change his mind. my heart just can't handle that!!

oh, well, this is just too exciting!!!!!!!!!!!!!!!!!!! :D

what a way to start the day!!!! i can't believe we're actually here already; it's like some sort of wonderful dream!! fyi, i'm writing this post in mid-air, because i'm just. that. happy.

although i think, perhaps for the first time in my entire life, the word ELATED is appropriate! and giddy (although that is nothing new, lol). so let's just get to it, shall we?

i got to the school at 9:00 and met the learning support teacher for the primary grades. he seems very nice. and the principal, whom i have met before, joined us, and she was very helpful and informative. and of course, dr b, our awesome awesome awesome paeds, came and brought Trouble with her. (i should clarify: margaret behaved herself. her dog's name is trouble and she is training as a helper dog right now.)

they weren't nearly as terrified by asher as i expected (and semi-hoped... it can be so fun to see people's reactions when they hear "he has half a heart." LOL), as they are used to accomodating special needs kids in the school, which frankly, i think is wonderful. so here's a run-down of the plan:

• asher will be a hand-off kid, meaning that when he gets off the school bus, blithe will take him directly to his EA or ECE, and he will be taken right inside. we just all agreed that outdoor play would be too chaotic for him, it will be too difficult to keep an eye on him, and the odds of him getting injured are too great. the bus arrives only a couple minutes before the bell, anyway, so he won't miss much there. he also will not be going out onto the playground for recess. he may go out to the front of the school with an adult, a few older kids, and some other special needs kids for some outdoor play. we just can't risk him on the playground with hundreds of other kids with limbs flailing, not looking where they are running or throwing balls and so forth. too many chances for something to go wrong there.
• he will have a modified phys ed programme. the LST is going to get me the list of activities in the JSK phys ed curriculum, and i will go through it and "ok" the activities that won't endanger asher. we did discuss excusing him from phys ed altogether, but that's not fair to him because he is so active and loves to run and play and be active (we told the LST that asher doesn't know he only has half a heart, and he laughed). when he isn't in gym with his classmates, he will either play some other games in the atrium, or he will go to the computer lab or to the other JSK class.
• he will be supervised at snack and lunchtimes. we told them that he has some significant nutritional needs right now and we need to make sure that he eats everything that is sent with him. he doesn't gain weight easily because of his heart, so he will be with an adult and another child at nutrition breaks. and since the two JSK classes go outside at opposite times, he can be inside with his class, then when they're outside, he'll join the other class while they eat.
• he will be assessed by OT, PT and SLP early in the school year. (oh, yeah. you might not know what those are. OT = occupational therapy; PT = physiotherapy; SLP = speech and language pathology). because he has spent so much time in hospitals, with limited activity due to cardiac monitors, he may need some help with his gross motor skills. also, due to frequent admissions, his speech is somewhat delayed. not much, mind you, but some. he speaks perfectly clearly, and if you were to meet him, you would understand everything he says, but his vocabulary and syntax aren't the greatest. he's doing very well, all things considered, but with a little assistance and special attention, he can move past "all things considered" to "hokey doodle, did you hear that 3-year-old quoting shakespeare?!?!" ok, maybe that last part is just a shakespeare-loving mother's dream. LOL but i'm sure he could say, "i'll lug the guts to the other room" without problems. there's hope. teehee
• every teacher, EA and ECE in the school, including supply teachers, will know asher. his picture and info sheet will be posted in his classroom and in the principal's office by her phone. over his first few days, every teacher in the school will pop into the class to see him so they can identify him. this is purely precaution, since we're all hoping he'll be completely healthy, happy and safe at school, but we are also aware that such may not always be the case. so if he's in the hall and faints or gets dizzy or freaks out or whatever, any teacher who sees him will know right away who he is and what to do.
• we haven't fully decided when to start him. the original thought was to start him toward the end of the second week, but he will know when school starts and will be desperate to go, so i don't think that will work. we'll probably start him on time, so that he won't be so overwhelmed by so many kids in the class, and he can ease into the transition with fewer kids at the start.
• the idea behind easing him in is this: since the spring admissions, asher has had some anxiety and fear, so he may not have the easiest time transitioning into something as major as school. don't get me wrong here, he's deliriously excited to be starting school. in the ambulance last week, he was saying to dr b, "i go school now?" and she'd say, "not today, hun, we're going to the hospital," to which he'd reply, "no, i a big boy. i go school now." so he's very, VERY excited about this, but we're concerned about his PTSD kicking in when he's suddenly thrown into a classroom full of people he doesn't know. other than an hour or so every week at sunday school, he's just not used to being around that many kids, so this will be a HUGE adjustment for him.
• asher will start by going half days, in the mornings. he's very excited about riding the school bus with "blivey and brammy" so he has to do that, but for the first little while, i will pick him up at noon. he's going to get very tired very quickly at school until he adjusts, and he will likely get overwhelmed quickly, too, so yeah. half days for the first while.
• they suggested some sort of protective vest for asher, to protect his pacemaker. he could wear this whenever he would be doing something that might bump his stomach, like playing outside, phys ed, that sort of thing. so i'm going to have to look into that.
• i also gave them a heads up that he may need to get a feeding tube in the fall. it's not for sure, and we're doing everything we can to pack some pounds onto him (you should have seen their faces when they heard about the butter and whipped cream diet!), and we're really hoping he doesn't end up needing it, but i thought they should know. so they are going to contact CCAC about that, since that would require nursing care, and i will be keeping them posted on that front over the summer.

so there you have it, folks. the plan for asher starting school. i can't believe this is actually happening!! it's like it's officially official and in september, my littlest man is going to be in school!!!!!!!!!!!!!!!! this is SUCH a huge step for him, an incredible milestone, and i don't know who's more excited, him or me! LOL

and yes, for those who are wondering, i will be posting pics on his first day. :D

holy calendars, batman!! do you know what tomorrow is?!?!?!?!?!?!

THE TRANSITION TEAM MEETING AT ASHER'S SCHOOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!

that's right, folks, tomorrow morning, i will be sitting down with the Learning Support teacher et al. to discuss asher's needs for school.

which he's starting.

in september.

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

'nuff said.

you've gotta check out this blog! (click the title of this post to take you there)

i have a link to this blog on the side bar (under "heart journeys") but i wanted to point it out to you tonight specifically. the blog is called Adventures of a Funky Heart! and it is written by a man in his 40s who is a CHD survivor... he was born with tricuspid atresia (the valve between the right atrium and right ventricle is closed... similar to asher's mitral atresia, but on the other side of the heart, and creating similar, but distinct, issues).

he's quite incredible, actually, working constantly to raise CHD awareness and to keep his readers abrest of the latest developments in the world of congenital heart disease and surgery... as well as a look back at some significant developments in the treatment of CHD. he also reaches out to his readers; in a recent post, he asked is there was anyone who had, or whose child had undergone, a one-and-a-half ventricular repair.

Funky Heart is a great blog. he updates regularly, his information is very interesting (especially if you're a heart mom, but i'm sure someone else out there might find it interesting, too). he included a link the other day to Dr John M, who is a (adult) cardiologist and electrophysiologist who writes about heart health, cardiology, and healthy living. also a great blog, also included in the sidebar here.

i highly recommend you check out these blogs, if you are at all interested in learning anything about wonky hearts. steve at funky heart is especially inspiring, given that he has CHD himself, and that he works so hard for the cause.

"it's dirt, it's sun, it's mom and nana and me... and don't forget squirmy!!"

so, it was absolutely beautiful outside today, so we went... well, outside! i walked downtown to run some errands (and got most of my bills paid off entirely!!! hooray!!!!), and started on my job search. while i was out, my mom took the boys for a walk to the flower garden a few blocks away. after i picked blithe up from the bus stop, we walked home and decided to stay outdoors for a little while.

well! i decided to get to work in the garden. and much to my surprise, there's actually stuff growing in there!! i had forgotten that i planted garlic last year, so that's already coming up nicely. and the lavendar wintered very well, so it's coming back already, too.

but this is asher's blog, not my simple life, so i'm going to talk about asher (novel idea, don't you think?)

asher, for those who are somehow unaware, is a boy. a normal boy. a very normal boy. which means...

where there's dirt, there's asher.

lucky for him, i was digging around in the soil, and found a nice long worm for him. he loved it!!! he named it Squirmy. it's in his hands in that picture. he didn't want to put little squirmy down. he wanted to bring him inside and have him as a pet. my mom heard that and said, "um.... no. squirmy stays outside " (my mom is not a fan of worms.)

and this all happened, you'll note...

on post-op day 8.

at home.

:)

UPDATE: i feel compelled, looking at this picture, to mention that asher is actually not blue anymore. it's just bad lighting. LOL

this is going on the sidebar, too, but i don't want you to miss this quotation, because it's great.

But the days pass in their swirl and whirl and swing and song, and every day he doesn't die again, and that knocks me out.       - Brian Doyle, in The Wet Engine

it's so wonderful because it's true. in just this one sentence, he captured the essence of heart parenting: the chaos, the stress, the joy, the beauty... all of it. (and for those unfamiliar with this book, it is all about the heart. the physical heart, but also emotional, spiritual, poetic and musical. it is truly is a stunning piece of writing.)

and by the way... the author has a son (about whom he wrote that sentence) with HRHS (hypoplastic right heart syndrome). amazing.

this is wonderful!!!

my wonderful friend wendy sent me the link to this blog about a girl with HLHS... and there is a story about a fontan/HLHS survivor living a completely normal life... at 30 years old!!!! amazing!!! thanks, wen, for sharing.

you're gonna want to sit down before you read this........ BECAUSE IT'S AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ASHER'S TUBE IS GONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
i hadn't run a feed through that tube in almost 3 months, because he's eating so much on his own. so much so that, you may remember, he has actually gained weight since the fall. that's right! my little man, who didn't eat by mouth for 2-1/2 years, is eating everything by mouth now!!!!

and taking his meds orally, too!!!!!!

which means that, anymore, the only thing the tube has been good for has been collecting bacteria. boo!!! so this afternoon, after he'd been begging me for days, the tube came out.

for good.

it's all bandaged nicely now, and asher couldn't be more proud of himself. and the other kids are proud of him, too (just ask the cashier at wal-mart! LOL). and me... well, there are no words for how proud i am of asher. he's come a long way. it wasn't so long ago that eating and drinking was just too much for his little heart. and then with the nerve injury, swallowing anything could have killed him. and now look at him!!! growing and thriving and just being a NORMAL BOY!!!!!!!!!!

this is probably the most amazing day asher's had in a VERY long time. :) it just shows how absolutely miraculous this boy truly is. and now, how absolutely normal he is.

click this title or the text of this post to check out a VERY interesting article

well, this is interesting... they've identified a gene which leads to CHD... including (potentially) HLHS. it seems that researchers at the University of California, San Diego Medical Center may have stumbled upon something here. you can bet i'll be asking about this at our genetics appointment... once we get one (the referral is in; we're just waiting for the date).