wow, where do i even start?!

it's been quite a month around here...

um...

we met with our CCAC case manager who was, in a word, the best CCAC case manager i've ever met! so nice, so helpful. she actually listened to me, and she offered supports and services that no other case manager i've ever met has offered. simply incredible! total gift!

she set us up with a social worker. actually the social worker was here this afternon. she is so nice. she's going to look into things like respite care for asher, a YMCA membership for the kids and me, some funding, and she offered to come with us next Tuesday for our respirology appointment. how wonderful is that?!

in fact, over the last month, it's just been one blessing after another. it seems like every day God shows up and dumps goodness onto us. sure, asher's still sick. his energy level is decreasing, and he's occasionally short of breath for no reason or with very little exertion. so yes, that sucks. but let me tell you about a couple other things that have come about that i would never believe if it weren't my life!!

• i'm going on vacation. much needed, i might add. i'm going to florida for five days in february with some friends. and we're all leaving our kids at home. i'll admit, i was an emotional mess a week ago, but once i decided to do this, i haven't cried nearly as much, i've been able to cope with life's little challenges... just knowing that while all you suckers poor saps walking popsicles gentle readers who live north of the border or in other winter-prone locations are shovelling snow and shivering and complaining that you're out of marshmallows and how can you have hot chocolate without marshmallows this isn't cool for the love of everything holy and good this isn't cool!!!!!!!!!... i'll be in miami, sitting by the pool with a book and window shopping with the girls. i can't wait!!! i haven't been on vacation since before blithe came along, and before that it had been... wow... years. so yeah. i can't wait!!!!!!!!!!!!!!!!!!! {happy dance}
• yesterday after church, i was chatting with a friend. i was telling her about our upcoming appointments and how nervous/scared i am... anyway, yesterday evening, her husband, one of the pastors at our church, saw that i had posted asking if anyone would care to join me on friday morning while asher's in having his CT. he, then, posted this on his profile:  There is a mom in our church community who needs someone to sit with her at the hospital while her son undergoes tests this Firday- if you are available please contact Heather Heywood I know that she would appreciate it very much. i kid you not, within five minutes, a friend offered to join me and she will be the coffee wench and we shall drink coffee and i shall not worry about asher being put under to undergo a test that could very well lead us to yet another horrible diagnosis. anyway, the whole point of this is... community. it's such a gift. and as i said on FB yesterday, the support that the kids and i have received has been overwhelming and humbling and beautiful and the picture of grace and Love. 

um, i can't really think of anything else going on in our world right now... blithe and i picked out her outfit for the first day of school, and let me tell you, this girl has some kinda style. also, we're trying to figure out where to go on a wish trip... so far, the choices are "wal-mart and mcdonalds," the island of sodor, take a train to toronto and take the subway to a hockey game, or disney world. so far, wal-mart and the hockey game are winning. HAHA

so that's the world according to asher... as told by me... for today, anyway. haha 

you are Loved.

it's the afternoon of our resp appointment...

and here i sit, pretty sure of how i actually feel about it all.

i want to cry.

i know we needed to go. something isn't right and it needs to be investigated and what not...

so here's the deal:

it's not asthma.

it's not nothing.

apparently, i "said the right things" and doc believes asher has some kind of chronic bronchitis. the CT will give us a better idea what we're dealing with. then she added, depending on what the CT shows, we may need a bronchioscope. this would involve a camera in his airway and maybe some samples of whatever they find in there.

and for those who are wondering... plastic bronchitis was mentioned and discussed. for now she's calling it possible chronic bronchitis, and we're taking it all one step at a time, but not taking our time. she's definitely on top of this.

pre-admit clinic (when we'll meet with the anaesthetist and give consent) is at the end of july, and the CT is friday, august 12. then we see doc again in clinic on the 16th (that's a tuesday) to discuss what the scan showed.

she also sent home some specimen jars. even though, up until now, asher has been swallowing anything he coughs up, she wants samples of anything he does get out. she's not holding her breath for this, though, since she said that it's not uncommon for kids his age to swallow whatever comes up. even a cast (the little bits produced by PB) would more likely be vomitted out from excessive coughing, rather than to actually be projected with a couple coughs.

i'm not going to lie, i'm scared. i don't really know what i was hoping for today. nothing good could have come from this appointment. (and yes, "it's not respiratory" would not have been good news. because if it's not resp... then what is it?!?!) but "fortunately" it is respiratory.

and i want to cry.

because even "run of the mill" plain ol' chronic bronchitis isn't good for a heart kid... the interactions between the heart and lungs... ugh... let's just say, what happens in one affects the other, and of course, never in a good way...

in the meantime, she put asher on flovent, a steroid inhaler. we're trying it for a month, to see if it will help.

please pray that it helps.

ok, i'm gonna go now... the littlest man remembered that i promised to buy him something if he went to sleep last night and behaved at his appointment this morning. boo!!! haha

ps - for those who want to know: 100.8 cm tall (which explains why he ate as much as he did the other week!), and 15.7 kg. (for the non-metric readers: that's 39.6 inches and 34.6 lbs.) his sats were 95% (the highest they've been in a while!), heart rate was 85 (slightly higher than pacer settings, so that's nice), and BP was 105/53. he was also very active, a nice warm pink colour, and only slightly puffy around his eyes. he didn't cough once. haha but she was happy that he looked so good, because now she knows his norm.

pps - i like our doc. she's very nice, pleasant but takes it all very seriously. easy to talk to, and she really listens, and she's not taking asher for granted. yup, i think this will be very, very good.

ppps - please hold us in the Light, especially me. the last few weeks have been really rough for me, and all of this now isn't helping. i just feel a little sad and overwhelmed and i don't want to lose my baby but for the life of me i can't shake this feeling that we've now started that slow decent toward the end... basically, i don't have a whole lot of hope right now. i'm weepy and tired and scared and lonely, and all of this compounded by the several other stressors i have right now, including much needed repairs on my truck and house, and the lack of funds for either. sorry, just needed to vent... thanks for "listening."

it's the morning of our resp appointment...

and here i sit, not sure how i actually feel about it all.

we're adding another specialist today. asher's been wheezing for a while now, he has a nasty wet and crackly cough, his sats are dropping. nothing much shows up on x-ray, but maybe the CT scan will show something when the time comes.

it's all so strange... it almost feels pointless, going to see another doctor, hoping they'll fix my baby, since they can't. sure, maybe they can fix his resp issues...

but they can't fix him.

because

"given that the fontan is palliative, he's doing as well as can be expected."

yes, i know that, technically, that is all good news. he's doing as well as can be expected. hooray!! but...

at the same time...

there's that p word.

why has that comment hit me so hard? i mean, it's completely true. the fontan is palliative. they can't fix asher's heart, but they can make it keep beating for a little while longer. and that's what they've done. but it's not a repair, and it's not permanent. his circulation can't last like this.

it is the very truth of the statement that hurts. i suspect i'd let myself believe that maybe, just maybe, asher will grow up. i mean, he's made it through so much already, right? he should have died so many times by now, and yet here he is, right? maybe he'll beat the odds and he'll finish high school and college and he'll get married and have kids and have a great career and he'll live to be 107.

given that the fontan is palliative, he's doing as well as can be expected.

i can almost hear the clock ticking.

this morning, like the last few weeks, i've been wrestling with the seeming futility of all of this. why bother taking him to emerge? why bother seeing cardio? why bother starting with a new specialist? why bother with tests? if this is the best he's gonna do, then what's the point?!?!

but...

what if these docs can give him just a few more years? then again, what if he still has a few more years, and they can give him ten more years? what if they can do something that will allow him to not only start high school, but to finish high school??

what a horrible thing it is to hope against hope that your child will live long enough to go to high school.

and yet, this is my reality.

there's no denying it: HLHS is a death sentence. given asher's extensive list of diagnoses, and his history, and his present, the odds aren't in his favour for a long life. he's not actively dying right now, thank God. but there are the little things that pop up and add up and take their toll on him...

and on me...

and sometimes, it's just a little much.

and sometimes, it's not nearly enough.

don't know why it's taken so long to update here...

maybe because it's all just so "meh"... not bad, per se... more like... um... wow. "meh" really is the best word. go ahead, say it out loud. you'll understand when you hear it.

on tuesday, asher stayed home from school because he wasn't 100%. other than a cough he's had for the last few weeks (yes, he still has it, and it's wet and gross sounding and it just seems to be getting worse, actually), i couldn't quite put my finger on what was wrong... he was just off... his colour wasn't right, his mood wasn't right, he slept in, i don't know... a bunch of little things that added up to me keeping him home so i could keep an eye on him.

we had to get some milk and eggs, so once blithe and bram were on the school bus, asher climbed into the stroller and we headed off to the store.

we decided to get a quick little bite to eat from the coffee shop first, though. he picked out his muffin and headed over to the table. and sat down. quietly. with his head on the table.

i got my coffee and our muffins and sat down with the littlest man. we munched, we chatted, we people-watched, we turned blue... well, ok, he turned blue. i watched.

and called our paediatrician.

and off we went to her office.

where she assessed him.

(the deets: BP was 100/50, which is weird for him; liver was large and 3 cm down; and his colour was "asher pink" to grey with blue undertones. yeah. lungs were wet and crackly, and he had a murmur.)

see, since he's been refluxing almost constantly for the last several weeks, one of the concerns was the possibility that he has been aspirating (stomach content/juices going into his lungs). granted, it seems somewhat unlikely, since his throat has been working so well for so long now, but he has quite the history with this sort of thing, so it needed to be investigated.

so, she sent us to emerg for sats, chest xray and ecg.

which asher did himself. no, seriously. he stuck out his finger for the sat probe (92% in triage, up to 95% before we left), attached his leads for the ecg (yes, he knows where they all go), and in xray, he hopped up onto the stool, arranged the lead apron, sat tall and still and took a deep breath without being told, then turned sideways and put his arms up for the second picture. all without being told. no one could believe he was doing all that. i said, "when you see his pictures, you'll understand how he knows all this." and they did. it's not often our local hospital sees a 4-yo with that much extra hardware in their chest.

Asher and Farkie Malarkie, both gowned and waiting for x-ray.

in the end, it was decided that he probably had "viral bronchitis" and we were sent home. a long day... for nothing, basically. :S

and speaking of long days... we had cardio on thursday.

it was the usual: pacemaker, ecg, echo, doc.

everything was uneventful. asher was paced throughout the appointment, and when they tested his heart during the pacer check (basically, she turned it off for a moment), his own heart rate was 60. that was his active heart rate, after running around and playing for half an hour. yeah. no wonder he was pale!! and no wonder he has a pacemaker! haha

k, so the pacemaker is working properly (no comment) and still has 8 years left in the battery. he's also about 75% paced (75% of his heart beats are initiated by the pacer).

now, because i know some of you are wondering... here are his vitals, etc:

• BP was 117/65 in his left leg, and 99/64 in right arm.
• sats were 94 to 95%. (asher's norm is 96 to 98, so this is lower than usual but only marginally so.)
• HR was 80 to 86, paced.
• liver was still low (3 cm) and enlarged.
• no mention of a murmur.

when doc came in, she said that he's doing "ok" right now. she also said that, since he's had his "fontan palliation" (anyone else wanna vomit at that term??? i know it's true, but she usually just calls it the fontan. {wave of nausea}), as long as function is good and the pacer is working, he'll be "ok" and "i looked at his echo and everything seems to be fine, no coarc or leaking and function is good. basically," quoth she, "he's doing as well as we can expect at this point. but you know, the fontan is palliative. but any problems that come up will be slow to develop, which will give us some time to deal with them. but right now, he's doing as well as we can hope for at this point."

k, all of that is true.

and all of that is good news.

but um... it's just that... usually... she puts it all very positively. "he's had the fontan, therefore he is doing very well. i'm happy with him. we'll see you in 6 months." in all the time i've known her, i've never heard her use the word "palliation" or say "as well as we can expect"... i don't know... yes, it's good news... and yes, all those phrases and words are true... 

maybe it's just that... it's one thing to know those things, and it's another thing entirely to hear the doc say them...

and when you're trying to ignore your child's odds, the last things you want to hear are the words "palliation" and "as well as we can expect." 

i'm trying not to get too upset by it. sure, it was pretty rough on thursday. but i handed it over to God and i'm now feeling a lot better... just holding the truth of it all, instead of the pain that truth causes... 

but some days i feel like the clock is ticking, you know? and thursday was one of those days, i guess. that's probably why it's taken me so long to post any of this... but on the other hand, i know it's all true, and really, he is doing "as well as we can expect at this point," so i cling to that truth, and if/when anything else comes up, we'll deal with it then. meanwhile, i'll enjoy that asher has spent the last week eating (a delightful change!) and even in the heat, he's doing "as well as we can expect."

maybe it's just that i'm sick of docs and i'm sick of cardio and i'm sick of tests and i'm sick of hospitals. and i'm sick of asher being so comfortable with it and i'm sick of asher doing his own ecg's and i'm sick of asher sitting so nicely for xrays and i'm sick of seeing asher lie still for echoes and i'm sick of seeing him with leads and a blood pressure cuff. 

it's weird... i'm not actually feeling as down as this post seems to imply. i'm just really, really tired of heart stuff, you know? and really, it was a "nothing" week, even though a bunch of stuff happened... so what if he's back to "asher pink" and not actual pink lately. i've seen him worse colours, to be honest. it's the humidity that's doing it, i'm sure, since, frankly, i don't like the humidity, either, and i wilt just a little bit during a heat wave, too, so really, i don't think it's really anything to worry about. i don't like his colour, but he's doing ok, so i'll just let his mood be the deciding factor. if he's his usual spunky self, then i won't worry.

and lately, he's his usual spunky self. so i'm not worried. 

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 CHD messes with your head... or maybe just how Asher does... hard to tell sometimes...

So, last night, asher was grey.

And i remembered another time when he was grey in his sleep.

Last spring.

When his heart rate was in the 20s and 30s.

As soon as i saw him, i flashed back to those nights. Those scary, scary nights.

Those freaxiating nights.

Those heartbreaking nights.

I didn’t think he’d survive long enough to get the pacemaker. I don’t think i ever put that into words, either spoken or in writing, but that’s what i was thinking at the time.

And so, when i saw him last night, sleeping, grey...

I thought about taking him in to emerg. Because... you know... what if...

His heart wasn’t beating fast enough...

But i looked at him, lying there, so grey, so peaceful.

Not short of breath,

Not sweating,

Not indrawing beneath his ribcage,

And rousing when i moved his arm.

And i thought... well, i can rouse him, so that’s good... and he doesn’t seem distressed right now, so that’s good...

But he is grey.

And he really shouldn’t be.

I called amazing dr b because, honestly, i didn’t know what to do. Should i take him in? Should i just brush this off? He can’t have a slow heart rate anymore. It will always be at least 80.

But then i thought... what if his pacemaker isn’t working properly???

But then, wouldn’t he be sweating? Or short of breath? And un-rouse-able?

But he’s so grey.

This is what this life does to a mom, after a while. He’s been through so much. And i’ve been through so much with him. and i’ve learned a lot. I’ve learned to listen to my instincts, but i’ve also learned all the clinical things to watch for.

So now, whenever he has a symptom, i begin to wonder,

Should i take him in for this? I’ve seen him like this before, and it was bad... but he doesn’t have any other symptoms. Just this one. So should i take him in?

I just don’t know anymore.

It used to be so easy. When he was very young, if he had any symptoms at all, even “just” a runny nose, i took him in. And they always found a problem. Which always ended up messing with his heart in one way or another.

See, he’s had all these symptoms so often, for so long, it’s gotten to the point where i’ve built up a tolerance for some of them. Even his colour wheel, i’ve become so accustomed to it... I can brush off pale (for a few days). I can tolerate blue. But any shade of grey makes me want to vomit. 

So what do i do? Do i listen to the same advice i gave my close heartmom friend, “better to be paranoid than indifferent, because the paranoid mom will be right once in a while.” But what if i’m reacting to something that really is nothing? And now that everything is different post-fontan...

What if i’m brushing off all these things, and they actually are something... but “i’ve seen him worse, so, meh.”

Sometimes, I don’t know how to tell anymore.

On the other hand, i’m tired. Maybe some rest. Or better (and more realistically) yet...

Caffeine!!!!

(have i mentioned i’ve become hooked on lattes?? It’s true.) 

"human beings have the remarkable ability to adapt to anything." ~ Dostoyevsky

i was emailing back and forth with someone the other week, and she made an interesting comment. we were talking about a heart kid and his mom, what they were going through at the time, how to help, that sort of thing. and she said something that, for some bizarre reason, caught me off-guard and stuck with me, and i've been thinking about it ever since. i don't remember the exact context, but she used the phrase, "you moms who deal with so much more than the rest of us."

why did this phrase stand out to me? i think i know why:

it never really occurs to me that i do deal with more than anyone else. is that weird? and i'm not trying to be funny here or anything. i'm being completely serious. i don't actually see this life as being anything "out of the ordinary." and don't forget, asher is not my only child. i have two older kids, who are completely healthy.  bram had some dental work a couple years ago, but that's it. and blithe has never had anything more invasive than a flu shot. so it's not like heart life is all i know of parenting. i know the life everyone else takes for granted. so why do i not think of SN life as anything other than average?

honestly, i don't know the answer to this question. i have some theories, mind you, and i'd like to share them with you:

• my parents. for those of you who know them, that's all i need to say. for those of you who don't... they're amazing. they have been such a help to me over the last few years. this spring, while asher and i were in the hospitals, blithe and bram went to stay with my parents. for six whole weeks. and my parents were here yesterday helping me out with stuff around the house and watching the kids while i went out. they are unbelievable, and i couldn't do this without them.
• i have an incredible support network. i really do. i was blessed with a multitude of people who pray for us, visit us, help us. when asher was in london PCCU with a heart rate of 30, i called a friend at 12:30 at night. when they answered, i just burst into tears. no hello, no "it's heather," nothing. just sobbing. my friend said, "i'll be right there." and in less than 15 minutes, i was drinking a fresh timmies and bawling while my friend handed me kleenex and listened. that's just one example. another example would be the two friends who were with me in the waiting room during asher's fontan. and those same friends visited me in the hospital, called when they couldn't make it in, and updated the blog for me. someone else sent out an email to dozens of people as soon as he heard about asher's pacer infection, and within an hour, hundreds of people were praying for us. i could go on, but you get the idea. my kids and i are loved.
• call me crazy, but i don't believe there is actually anything "wrong" with asher. there are plans for this boy, big plans. divine plans. and none of them could happen if asher had a healthy heart (etc). and because of that, i can go about this life knowing that somewhere, somehow, something God-esque is going to happen. and in the meantime, i get to watch for it. how cool is that?

there are a couple other considerations. one of the them is this:

we started off with "your baby is going to die. so pull yourself together and say your good-byes." and let me tell you, there is no worse news than that, my friend. none. so after hearing those words, everything else has been a bonus. because, you know... it could be worse. we could not have to deal with this stuff. we could not have to make all those trips to emerg. we could not have all these specialists. we could not have all these admissions.

now, don't get me wrong. i'm no pollyanna here. i don't see this life as being all sunshine and rainbows. because, quite frankly, sometimes it sucks. but you know what? it sucks when your healthy 7-year-old has tonsillitis. it sucks when your 8-month old has a cold. it sucks when your teenager rebels. it sucks when your toddler walks into a doorknob. it sucks when your grown child has cancer. but...

it's amazing when your child wakes up and runs into your room and says, "mommy, i just love you soooooo much!" it's amazing when your child starts school. it's amazing when your child says, "mommy, i do it myself." it's amazing when your child laughs. it's amazing when your child naps. it's amazing when your child holds your hand to cross the street. it's amazing when your child moves from the crib to a big-kid bed. it's amazing when your child practices "criss-cross applesauce, hands in your lap." it's amazing when your child gets dressed on his own for the first time ever. it's amazing when your child draws you a picture. it's amazing when your child washes said picture off the wall (true story). it's amazing when your child kicks a ball around in the backyard. it's amazing when your child crawls into bed with you at night. it's amazing when your child's face lights up when thomas comes on TV. it's amazing when your child has fun in sunday school.

perspective is a good thing. when i "knew" that asher was going to die during the glenn, i was talking about it with a dear friend. she said, "you don't know he'll die." "oh, yes, i do," i sobbed, "he's not going to grow up. he's going to die very, very soon." "you don't know that," she repeated, "you don't know. sure, he might not survive. he might die next week. but then again, he might not. and you have no guarantees blithe and bram will grow up. they could get sick or fall off a swing or whatever and die. i don't want those things to happen, but you never know. you just don't know." and you know what? that morbid little line, that reminder that i have no guarantees about my other kids, gave me so much hope for asher. i have no guarantees with asher; he might not grow up. but you know what? he just might. so while he's here, i'll just find joy where i can. sure, it's pretty freaxiating at times; i don't deny that. again, i'm not living in a dreamland here where everything is hunky-dorey and lollipops and cotton candy. i'm living in reality here, and sometimes that reality sucks. it hurts and it's scary and it's harder than you can even imagine (if you're not living it, that is). but i choose not to dwell on all that. i choose to enjoy this littlest man of mine. it's hard sometimes, i'll admit. but there's (almost) always something in every situation to rejoice in. asher's smile and pink toes post-fontan. a visitor bringing baskets of candy, chocolate and reading material while we were in PCCU. onion rings with gravy. poutine. bawling and laughing (simultaneously) with a friend. these are some of the blessings. and i hold those very close to my heart all the time, because otherwise, i would suffer way more than i actually do.

i don't deal with "so much more" than anyone else. i just deal with different things. we all have a lot to deal with in life from time to time. i don't think i could ever move across the country, away from my family and friends. i don't think i would be all that comfortable with immense wealth (i'm weird, i know). that being said, i could never cope with intense heat, war and abject poverty. there is no way i could deal with a cranky child (which is why two of my kids have names that mean "happy"... and yes, asher is one of them). i don't do loneliness well. i would freak out if there were lions prowling the streets. i am miserable without God, friends, chocolate, coffee, and poutine. i know people who have these situations in their lives, and frankly, i don't know how they deal with it. (ok, i don't know anyone who has lions prowling the streets. that was a joke from a friend in south africa.)

but dostoyevsky was a wise man. he wrote, "human beings have a remarkable ability to adapt to anything." and it's true. this is my normal, and there are some people reading this who might not be able to cope with it. but to be fair, i don't think i could ever deal with your normal, either. we're given what we can deal with, and what is stressful to one person is no big deal to someone else. and that includes heart life. it's all relative.

downer alert: it's late, i'm tired, and asher is just so very skinny. :(

on tuesday, asher goes in to paeds for his monthly weight check, and this time, i'm not expecting a gain.

in fact, i'm anticipating a loss.

asher doesn't often eat anymore. a couple bites of a meal is his usual. unless he's racing with someone (who knows enough to let him win). but that's only a trick to get him to eat at all.

today was the first day in about a week that he's had an appetite. he ate a bowl of cereal for breakfast, an apple, a chocolate bar (gotta love a church with a snack bar!), a cookie, a smoothie (with polycose in it, but shhh! don't tell him that!), another apple, a bowl of lentil and sausage casserole, and some of a second bowl of casserole (both of which contained polycose. again, that's a state secret, and i'll trade you to the russians for someone not nice if you breathe a word of that to asher).

but today, when he was having his bath... i could count his ribs. and he's got an outtie again.

fyi, asher doesn't usually have an outtie. except when he's skinny skinny.

i had just donated his IV pole to the drama ministry at church to use as a prop. i told them that this was my act of faith, that i'm stepping out here believing that asher won't need it again. the director said, "if you need it back, let me know, and you can have it." "oh, if i have anything to say about it, we won't need it back. i'm not feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again!"

but apparently, i'm feeding him this disgusting butter and whipped cream diet so he can get a feeding tube again.

it's just so discouraging. i've buttered mcdonalds hashbrowns and pasta, i've used more oil to cook than i ever imagined possible, i've given him chef boyardee and fed him chocolate bars and ice cream and cookies and more fast food than should legally be allowed, and added Polycose to everything, including milkshakes, scrambled eggs and pasta sauce. for nothing.

with his heart the way it is, it is pretty much impossible to put weight on him. he knows he needs to eat, he knows he needs to gain weight, he knows he might get a tube... and yet, he doesn't eat.

and i don't want to keep reminding him of the (possibly/likely) impending tube, because he's already struggling with his PTSD, getting sad and scared off and on throughout the day for no apparent reason. so i don't want to threaten him with another tube, in case it harms him psychologically. especially since he's making some progress with that (he actually tells me - if i ask him - how he's feeling, which he never did before, so this is actually good news on that front).

i also don't want to have to force him to eat, because i've wrestled with food issues, and i don't want him to have to go through something similar. i don't want him to see food as the enemy, or as something he "has" to do. i want him to have a healthy relationship with food, and i don't think that threatening him to eat all the time is the way to nurture that. i'm trying to think long-term here, even while dealing with short-term issues.

and i don't want to turn mealtime into a battle of wills. i want mealtime to be happy, fun, a loving communal experience with the family.

so far, racing works. but other than that... nothing. even bribery doesn't work.

this is really hard right now. i want him to have a normal life with normal kid problems, like bruised knees and "brammy just took diney away from me" and "dare no cheese!!!!" (yes, he'll eat cheese. assuming we have some in the house.) but balancing normalcy with health issues, trying to integrate his medical requirements into everyday life without overwhelming it or traumatizing him all over again can be downright impossible sometimes.

i'll figure this out. i will. but tonight i'm exhausted (i haven't had a decent night's sleep in about 2 weeks now) and i'm discouraged by the lack of progress on the weight front.

in case you're wondering...

heart life is hard sometimes.

really hard.

well, it's a day...

so here's the day so far: bram was complaining this morning that he couldn't walk, but he usually says that when he's tired, so i sent him to school. i figured that once he got there with all his friends he'd be distracted and feel fine. apparently, not so much. the school called at 9:02 to say that bram wasn't feeling well and could i please come pick him up. so i got there, and while i was chatting with his teacher, we heard a little "mrs b-? i just acccidentally threw up." poor little thing.

then off to asher's second session of therapy. that was kind of upsetting, but i tried not to cry. instead, i tried to just hold everything without judgement. just watch. but really, i wanted to cry.

he went straight to the cars and found one he liked best. he took that one to the sandtray and started to drizzle sand on it and bury it. completely. KW just let him play like that for a while, to soothe him, because what she had planned for the morning "might not be so soothing." or he might not react at all.

she pulled out two baskets full of medical-inspired toys. there were little IV poles and meds and nurses and doctors and heart monitors and a hospital bed and so forth. he placed them all in the sand, and proceded to bury some of them. the surgeon with a mask, buried. the nurse (i assume) was stuck in the sand up to the waist, then ignored. the heart monitor was put in the sand upside down, so the wavy line was covered.  he drizzled sand all over the bed, but then dumped it off and put the bed aside. she gave him more more doctor-looking toys (white coats and stethoscope). he buried one, but left the other one entirely. didn't even touch it.

then he was allowed to put the medi-toys away, and was given a basket of cars again. he put them all in the sand... and buried them. all of them.

well, then time was up, so it was time to go home. asher seems tired, but likely not as drained as i am. he doesn't like to talk about what he's feeling. it's a rare moment when he opens up about this sort of thing. he just goes along as though everything is fine, but it would seem he's just burying his feelings. play therapy allows him to explore deeper feelings and issues in a free, non-threatening, non-judgemental environment. click on the title of this post to go to the play therapy page on wikipedia.

anyway, we still have one more appointment today for little asher. we go for a weight check with the paediatrician shortly after 2:00. i'll post later and tell you the results. please pray or whatever you do. we need a weight gain. thanks so much.

ugh

wow, the last few months have been rough. really rough. brutally rough. asher has been through the ringer so many times, and frankly, i feel like i've had the crap kicked out of me more times than i can count.

as it happens, i am now exhausted. and overwhelmed.

the bug that asher has in his bladder is a nasty one. in fact, the docs don't even know how it got there, and he's got a 14-day course of antibiotics to get rid of it. i am sure that this infection was caused by the huge amounts of lasix asher was given in the spring, which has injured his kidneys. we'll wait and see for sure on the renal ultrasound in july, but i would put money on this (if i had any, that is, but you know what i mean).

asher needs to gain about 5 lbs just to get up to the 50th percentile on the growth chart. ever tried to pack 5 lbs onto a healthy 3 year old? it's pretty much impossible. so you can imagine how optimistic i'm feeling about putting any weight on asher. :( he's only got a few months to turn this weight pattern around, to start gaining regularly... and if he doesn't... he'll get a g-tube.

again.

and right now, i can't help but feel guilty for that. when he started eating, i was so excited. and he was eating so much; i'm not joking when i say that he used to sneak into the fridge and take out things like cheese and yogurt and apples and stuff like that. so i thought he was doing well. i pushed to get rid of the tube; i'm the one who actually took it out. and now he might need it again. i feel like it's my fault that he might need to go through all that again, after working so hard to get rid of the tube before. and in the meantime, i need to feed him food that is so disgustingly unhealthy, just so he'll gain weight. for crying out loud, the other morning i buttered a hashbrown from mcdonald's!!!! because it's not greasy and gross enough (although delicious), now i have to butter it!!! he gets to eat all the fast food and cookies and ice cream he wants... and more. that's right, i have to force my heart kid to eat a happy meal. and where any other mother would say, "yes, hunny, you can have some ice cream or cookies, but first you need to eat an apple," i now have to say, "yes, sweetie, you can have an apple, but not before you finish all your ice cream and cookies." do you see how messed up that is?!?! and this is actually healthy for him!! but then i start to worry about how fattening and unhealthy these foods actually are, and even though they're good for him on the weight front, this kind of diet can't be good for his heart... but we'll have to deal with that later, i guess. that's right, we'll deal with hypertension and cholesterol later. for now, let's make him fat. blech!!!

add to all of this the fact that blithe and bram see asher eating like this, and i have to say to them, "yes, i know you'd like a milkshake with your fries and burger, but that's not healthy. you need juice or milk, and you're only getting fries as a treat. it's salads with dinner at home for the rest of the week. only asher gets junk food." try explaining this to them. they don't get it. they want the same stuff he gets. and he doesn't even eat or drink it all, because he has almost no appetite anymore.

and now i have discovered something disconcerting about myself: i have no idea how to live normally anymore. it's like i've forgotten how to live outside a hospital. when we're in crisis mode and asher's really, really sick and we're dealing with docs and mystery illnesses and surgeries and nasty meds and emerg trips and ambulance rides and all of that, i'm fine. not even fine. i'm really good at that. i cope, i take care of myself, and i'm ok. i can carry on a conversation, i can laugh and joke about anything and everything, i know what to do and where to go and who to talk to and i keep everything organized and i'm on the ball.

and then we come home.

and i'm lost.

i'm not even joking here. i have no idea how to function anymore on a day-to-day basis. this isn't a lack of trust or faith or surrender. this is conditioning. the last few months have been one crisis after another. so what do i do when there's no crisis? how do i live? what am i supposed to do? how can i sleep in a big, comfy bed? i can rest on a cot in a tiny, cramped hospital room. but in my own room, i get sleep, sure. but it's not restful sleep.

i'm trying to take care of myself, i'm trying to pull myself back together, but it's hard. i could do this if asher were in the hospital. i journal and breathe and go for walks and read and wear my perfume and rest and laugh and play and what not. but somehow at home, where there is so much else that requires my attention, i just don't know what to do.

i will get through all this, i'm sure i will. i've been through worse, and i got better. so i can do it again.

but wow! this is hard. and overwhelming. and exhausting.

sigh.

so please hold me in the Light now. i'm in a rough place, and i need to get out of it. thank-you.

i don't really have a pithy title for this post yet. but no worries. when i think of one, i'll add it. (wow, this title amuses me! ROFL)

i'm changing things up a bit today with this post. no asher updates today, because, well, he's fine. at least nothing update-worthy, which is a delightful change, if you ask me. no, today's post is in a different vein (lol) entirely.

over the last few years, i have been asked many times, many many times, too many to count actually, how i do what i do with asher. people tell me all the time that, if they were in my position, they wouldn't be able to do it. to handle all the admissions and appointments and trips to emerg and surgeries and symptoms and scares and the knowledge that this child may not make it. the unpredictability and the constant upheaval and broken hearts and stress and strain and exhaustion and fear. the uncertainty and unknowing of it all. "how is it," i have been asked, "that this woman is a basket case because her baby had to get a needle, and yet you have to pin asher down for IVs and consent to horrifying procedures and you're still sane and even happy?" my answer, dear readers, is this:

Zero Circle

Be helpless, dumbfounded,
Unable to say yes or no.
Then a stretcher will come from grace
     to gather us up.

We are too dull-eyed to see that beauty.
If we say we can, we're lying.
If we say No, we don't see it,
That No will behead us
And shut tight our window onto spirit.

So let us rather not be sure of anything,
Beside ourselves, and only that, so
Miraculous beings come running to help.
Crazed, lying in a zero circle, mute,
We shall be saying finally,
With tremendous eloquence, Lead us.
When we have totally surrendered to that beauty,
We shall be a mighty kindness.

                                           ~ Rumi

asher's condition has left me dumbfounded, "unable to say yes or no." if i say yes, it means that i enjoy this, that i'm ok with it, and that i'm happy my baby has to go through all this. if i say no, i would be fighting this reality, waging an unwinnable war against something i cannot change. i have learned over the years the wisdom of buffo's advice: "don't try to control what isn't in your hands to control." so i just go with it, not fighting, just doing what i have to do, signing what i have to sign, going where i have to go... and you know, it's true: it's like there has been some sort of cosmic stretcher that gathers me up and carries me. that's how i get through.

i don't know how long i'll have asher. i'm really not sure. frankly, he should be dead 15 times by now, so who knows, really. he could go next week; he could bury us all (my money's on the latter, knowing him, but again, who knows). and so i have accepted that i have today. only today. so i embrace that. all i know is that there is a plan for this boy, and he won't go anywhere until it's done, so i'm trusting God to take us where He wants us to go.

when i asked God to heal asher, and He said no, that was not the miracle He is going to do with ash, i said, "ok, but You made him this way, so You sustain him this way." and all i can do now is to trust. trust God, trust the docs, trust my instincts, trust asher. really, that's all i can do. i have let go of all of my plans for this boy (not my hopes, mind you. just my plans), and i simply trust. God has the plan, asher has the fight, the docs have the skill and know-how. me, i just watch for symptoms and take him in when he needs to go and give him his meds and do what i can to keep him alive for a little bit longer. but i'm simply doing what i need to do; i have no real say in any of this. if i did, asher would have a left ventricle and an aorta, and they would be healthy, and they would be his own. he would have no scars, he wouldn't know what a stethoscope is, and he would be scared of blood pressure cuffs and sat probes. and i would still know nothing about hearts, having never even heard of paediatric cardiology. but such is not the case.

so i've let go. when it comes to this kid, i am helpless, dumbfounded, unable to say yes or no. i say simply, lead us. and i have surrendered to this beauty, even when it isn't so beautiful. because it is all somehow even more beautiful in those moments, because it is in those moments that i get to see something more. i peak out the window onto spirit, and see the miraculous beings come running to help. docs and nurses and RTs and surgeons and anaesthetists and therapists... and angels sent running to asher's side by the thousands of people who pray for him, and by the One who has plans for this kid, plans to prosper him and not to harm him, plans to give him hope and a future. and i get to watch all of this happen every. single. day. and all i have to do is hang on for the ride.

i hope this rambling post makes sense to you. it's really so difficult sometimes to put into words how i deal with all of this. but it's so simple: i don't get a say, so i do what i have to do, and trust. that's it. because that's all i can do. i can't change any of this, no one asked if i was interested in being a heart mom. i was simply handed this broken-hearted boy and told to hang on. so i do. and i'm very, very glad i do.

ok, seriously, you HAVE to read this book!!!!!! (THE WET ENGINE, once again)

When he was born, with his missing chamber, and we thought he might die any day, I loved him inarticulately, and raged at his Maker for making a broken boy, and many a night I sat rocking with him and thought about grace; what grace was this, to build a big pink boy with the bright face of an apple and a heart too weak to drive him through boyhood? A cruel gift of life and death at once. Now he is repaired for a while, a few years, a boyhood, before he needs a man's heart, and I have learned to shut my mouth and learn about grace: the deft grace of the doctors who edited him, the open grace of the thousand people who prayed for him in churches and temples and stupas and chapels and novenas, the grace with which he carries the body God gave him and Dave [Liam's cardiologist] edited and surgeons carved in a way dreamed up by le docteur Francis Fontan.

I rub the peachfuzzcrewcutted head of my boy when he wanders past me in the kitchen, and I hold him in my arms when we sit on the couch in the dark marveling at ogres and orcs, and I rub his back at night, cupping his round face in my hand, whispering Gaelic in his ears, holding his hand when we cross the streets, rubbing his legs and feet when he cries at night from growing pains, feeling his bicep when he flexes to show me he is more powerful than his many heroes, because there is always a jolt of joy in the touch, even when I am furious at him; because when I touch him there he is, and somehow my body never forgets the fear of the loss of his body. There's some kind of electric magnetic thing at play - an electric love in his heart and mine.

"Without touch, God is a monologue, an idea, a philosophy," wrote the late great American mystic Andre Dubus. "He must touch and be touched... in the instant of the touch there is no place for thinking, for talking; the silent touch affirms all that, and goes deeper: it affirms the mysteries of love and mortality."

To which I say amen and then amen and then again amen.

this is from pages 69-70 of The Wet Engine, by Brian Doyle. it's a brilliant book, and this heart dad writes so beautifully of what it's like to live with and love and raise and cherish and fear and nurture a single ventricle kid. it's all true. every word of it (except the word "repair" in the first paragraph; there is no repair for these CHDs). every moment he describes, every emotion, every thought, every fear, every hope, every prayer... this is what it's like.

and i wouldn't change a single second of it. honestly, i wouldn't. especially the good ones.

and especially the bad ones.

because, in those genius words words i hold imo pectore,

"one way or another, he has always found his way."

to which i say amen and then amen and then again amen.

yes, it's been a while, and yes, there's QUITE an update... don't worry, some of it's GREAT!!!

oh, my sweet little man...

i don't remember if i've mentioned this before, but a few weeks ago, probably in the midst of some boredom, i decided to read over asher's blog here, starting at the beginning. and i got to the posts from after the coles in May 2008. now, we all know my habit of telling you all about clinic visits, including vitals, height and weight. i've always done this because i know there are some readers who would ask me anyway, so i just post it here and then no one has to ask me. (teehee) i had no idea it would be such a handy record...

it turns out that asher gained less than 1 kg between the coles 2 years ago, and the fontan in early march. he was 12.2 kg in june 2008, and weighed 12.8kg at the fontan pre-op. that's about a 1 lb difference for my non-metric readers. 1 lb. in 2 years. yeah.

i discussed this with his paeds a few weeks ago, and she was also somewhat concerned. she offered to set us up with a dietitan, but really, there's nothing she can tell me that i don't already know, so we decided on just periodic weight checks with the doc. that works. why waste resources, right?

so, on wednesday, i took asher in for his weight check. he has actually gained: he's now up to 13.6 kg. this was great! a huge gain in two weeks! wonderful! but he still has a loooooooooong way to go to catch up. after the coles, asher was around the 80th percentile for weight. he's now around the 20th. that's quite a drop. but doc's awesome, and gave us some great tips and ideas for fatty foods to get this kid back to a better size. this includes milkshakes with pediasure plus at bedtime, lots of cheese, homo milk instead of 2%, polycose added to just about everything. we're on it, and we'll get him fat again. so no worries... well, i am worried that this will also end up fattening me up... but polycose can be added to only asher's dishes, so hopefully the other kids and i won't put any extra weight on in the process.

let's see, what else happened wednesday....? hmmm..... oh, yes.

I REGISTERED ASHER FOR SCHOOL IN THE FALL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

junior kindergarten. already. all day, every day. can you believe it??? i can't!! he is soooo excited! he keeps saying, "i a big boy. i go school! i ride the bus wiff brammy and blivey!!" that's right, folks, my littlest man will be boarding the school bus in september with his brother and sister and heading off to school! oh, sweet normalcy!!! hard to believe he's at this point already. it seems like just yesterday he was a tiny babe, and now he's a big boy!!!! hooray!!!!!

but...

and why, oh why are there always "buts" in asherland??

dr b (paeds) and i were discussing this on wednesday, that i would be registering him for school. she said that she would call the school that afternoon and talk to them about asher, because they're going to need a heads-up.

• asher might be somewhat delayed socially, having spent so very much time in hospitals, isolated from other kids.
• asher will require a modified phys ed programme. he might not be able to participate for the full time, due to fatigue. but he will also require someone to monitor him, because he won't stop when he needs to, so someone else will have to pull him out.
• they need to know about his colour wheel: all those glorious shades of pale, blue and grey that he is wont to turn without warning, and often for no apparent reason.
• asher will have activity restrictions, because he cannot participate in anything that involves electricity, magnets, or activities that could result in a bump to his stomach.
• they need to know about what symptoms to watch for.
• they will need to know what to do when he shows symptoms, or gets bumped on the head (or shows up with lots of bruises), or shows signs of pacemaker malfunction.
• he may not be fully potty-trained when he starts school due to meds. we're working on it, but he's spent his whole life on diuretics and will be on them for the rest of his life, so it's a challenge. he has made some progress, but it's hard. (i'm just glad his no longer on diuretics and laxatives! that would be impossible!!!)
• they need to be aware that asher may have some emotional difficulty with school. because sometimes these kids can develop some symptoms of post-traumatic stress disorder (PTSD)...

which leads to the next part of this update.

and this is the heartbreaking part.

a couple weeks ago, you may recall, i posted that asher had started crying at naptime and told me he was scared of doctors. this happened at home. when he was fine. and there were no doctors around.

i mentioned it to dr b on wednesday, and she said, "yeah, i remember that." so we talked about it for a couple minutes, and she told me to call KW.

a therapist.

so this morning, asher goes for his first play therapy session.


my heart hurts to think about this. and i can't help but think it's partly my own fault that he's in this situation... well, sort of. maybe i'm just afraid he blames me for everything. lately, he's been daddy's boy. he's even told me a few times that he doesn't love me. just daddy. (mind you, two minutes later he'll look at me and say, "mommy, guess what." "what?" i say. "i love you." awwwwwwww!!) but still. i am the one who takes him to clinic appointments. i am the one who takes him to emerg. i am the one who pins him down for bloodwork and IV starts. i am the one sitting at his bedside in the unit, on the ward, in emerg. i am the one who rips him away from his brother and sister and toys and kitty and everything he loves to take him to the hospital or a clinic. i do all this because i love him and want him to be as healthy as possible, and i want him to stay with us as long as possible, so i do what i have to do... but all this has hurt him so badly. he's been through so much, and i was right there for all of it. sometimes i feel like i've failed him somehow; i've protected his body, but what about his spirit? i'm supposed to be the one who protects him and stops people from hurting him. instead, i pin him down while they poke and prod, and i hand him off to total strangers who carry him off to the OR...

i'll post later and let you know how his session goes this morning. but i guess this is a huge prayer request for him. we've done everything we can for his heart... but in the process, we hurt his heart. sigh. please pray for healing for him. it's such a hard journey he has had in his life so far, and it likely isn't going to stop anytime soon, so please pray for him. thanks.

Imo Pectore

When the pope makes a decision about the naming of a cardinal, but declines to name that new cardinal publicly, because to name him publicly would bring unwelcome attention, which is to say that the government or regime or junta or dictatorship or commissariat or executive committee of the nation in which the new cardinal resides would be even more interested than usual in stilling the heart of the new cardinal, for fear of his increased influence on the hearts of the faithful in his country, then the pope keeps the new cardinal's name imo pectore - in the innermost recess of his heart. Other than His Holiness the Pontiff of Rome, no one knows how many more cardinals there are in the world than we think there are. Their names are revealed only after they die. Many times in the long history of the Roman Catholic Church the Pope has died suddenly without having the chance to inform anyone of the cardinals he holds in his heart; so when that particular pope's heart ceased to beat, the names of his secret cardinals flew from their muscular home and vanished. The more I think about this the more riveting it is to me. Lesson: there are secret words in every heart. For almost ten years now I have had five secret words in the innermost recess of my heart, and I reach in there sometimes and unpack the box they're in and inhale their redolent spice, always fresh, always restorative, always miraculous water to a thirsty man: he should do very well. I don't forget those words. Those are good words.
                                           ~ Brian Doyle, in The Wet Engine

the words i hold imo pectore: "One way or another he has always found his way." those are good words, too.

(click here or on the title of this post to go to amazon to order your copy of this amazing book.)

oh, seriously, come ON!!! enough is enough, already!!!!

Now, you know i don’t usually post this sort of thing, but i really need to get this out, and i figured, hey, why not blog it for everyone to read? Because i know you’re all dying to know about the insane minutiae of our lives. (haha)

First up, the week’s goings on at home. Sigh.

It had been pretty windy and rainy here earlier in the week. So much so, in fact, that a branch on a large tree in the backyard battered the chimney, and on Tuesday night, as i was out taking asher’s meds over to his dad’s place... the chimney fell. Not the whole thing, mind you. Just the top 3 feet or so. Three feet of cinderblock and clay. Came crashing down. Onto the roof of the bathroom.

Now let me explain this a bit so you have a visual:  the house is two storeys at the front, with the bedrooms on the second floor. At the back of the house is a one-storey addition which houses the kitchen and bathroom. The chimney is attached to the 2-storey part, and it was quite high because of the high peak. So it probably fell about 15 feet onto the roof of the bathroom. About 400 lbs crashing down, which dented the roof, broke the frame beneath, and sent a broken beam through the bathroom ceiling, along with all kinds of insulation and drywall. The ceiling was literally caving in.

I’m happy to say that insurance is covering it, which is nice, although i had a couple not-so-small panic attacks when i thought about the deductible. I’m a single mom with no income, so where i was supposed to come up with $500 is beyond me. BUT!! When the adjuster and project manager came over to assess the situation the next morning, we were outside looking at the chimney and he (project manager) was talking about rebuilding the chimney. So i said, “well, the chimney isn’t used anymore. The exhaust from the furnace comes out of that pipe over there by the ground.” He and the adjuster looked at each other, and she (adjuster) asked him if he could just level the chimney off and cap it, which he said they could do very easily, so she looked at me and said the most glorious sentence i have heard in a loooooooong time: “well, since that’s the case, i’m going to waive the deductible for you, since to rebuild it would have cost a lot more money.” That’s right, folks, no more deductible for me!! hooray!!!!!! So that was a relief, so much so that i nearly burst into tears.

now, during the repairs, we can't stay at the house. this is our only bathroom, and it's going to be out of order for a couple days while they re-do the bathroom. so... they're going to put us up at a hotel for a couple days, and i don't have to pay a cent for that!! hooray!!!! and to be honest, i'm looking forward to it. and so are the kids. it's not a holiday per se, but it's as close to one as we're gonna get for a while, so we're pretty excited.

in the meantime, a couple crews have been out to seal up the roof and make it water-tight, which is nice, since we don't need water damage in addition to all of this. and yesterday, another crew came out, tore out a lot of the drywall from the ceiling (all of which needs to be replaced, by the way), and sealed it up with plastic so that (theoretically, at least) that nothing else will come crashing down. it's all sealed up, as well, and the broken beam and other heavily damaged areas are now braced with 2x4s. but the kids all know not to go near the beams; asher was telling smokey today, "no touchie touchie, smokey. no touchie." too cute. especially given that he was shaking his finger at her from the other side of the room. i love that boy.

but you may have surmised from the title of this post that this is not the end of the chimney saga. and you'd be right. you see, this afternoon, i noticed that the tree, which is about 6 feet (if that) from the house... is broken. twisted, cracked and leaning on an unnatural angle. and the top of the tree, which is higher than my house, is hanging directly above the back bedroom. my back bedroom. and the bedroom at the front of the house on that side. the boys' bedroom. where asher sleeps. right next to the outside wall. not that it matters which side of the room he's on when the ceiling and attic and roof all come crashing down. so tonight i'm praying the tree holds in the storm (which it has so far), and i'm going to be pointing it out to the adjuster tomorrow. i'm hoping that they will pay to have the tree removed to avoid any further damage to the house. because if they don't take it down, it's going to come down on its own, and it will take the house with it, which will cost them WAY more money than a simple tree removal. so pray/cross your crossables/send reasonable vibes that they'll go for this idea, and i won't have to pay to have the tree removed. (i've already called the city. it's too far onto private property for them to remove it. which means i'll have to take care of it myself. so i'm hoping i don't. because i really can't afford to do it. ugh.)

so that's the house this week.

now for asher, which is going to be a short report this time. he's been doing very well lately. in fact, he's much better. that is, if you ask him. haha i shouldn't laugh. he is doing well. he's got a lot of energy lately, which is lovely to see. however, he is still pale, and while he has a lot of energy, he also gets tired much more quickly than pre-fontan, and he gets short of breath pretty quickly. he is also still sweating while he sleeps, and he doesn't always have a great appetite lately. we're hoping that he'll just need a minor adjustment to his pacemaker, which they can do in clinic on monday morning, so i'll keep you posted. 

and we're hoping for something simple like this, because frankly, i'm running out of steam here, and i don't know how much longer i can keep going like this. the last few months have really taken their toll on me emotionally. i'm completely worn out and don't have the energy or brain power to handle any more crap. right now i'm on the verge of tears just typing this, which might also be due to the fact that i'm really tired at the moment. a good sleep just might do the trick, but there's been so much stress over the last while that i'm really feeling worn out and drained. i know i'll keep going, and whatever is going on, i'll deal with it, because that's what i do. but i'll also admit that i haven't always been taking care of myself the way i should, but that's my own fault, and i can and will fix that. so no worries there.

and yes, there's more. and this is a rant, so feel free to stop reading now. i just need to get this off my chest.

for those of you reading who are not heart parents, or for those of you whose heart kid is (relatively) mild... say, has never had surgery... don't try to tell me that i don't get it.

i received an email this week from someone, and it really hurt me. and insulted me. and frustrated me. i was told that i "don't understand what it's like to have a child who gets admitted for things that everyone else's kid gets over in a heartbeat." apparently, i don't know what it's like to have a child on whom "the little things take a real toll." i have no idea what it's like to have a child who is unstable. i don't understand.

apparently, this person has forgotten that asher has spent time in ICU with a cold. that he has been admitted three times for a HEADACHE!! (ok, granted, it was migraines that were causing febrile seizures, but still! who else gets admitted for a migraine?! and three times, at that!!) and that one of these headaches sent his CHF into overdrive and he needed open heart surgery because it devastated his heart, but he couldn't have the surgery because his pressures were so high the operation would kill him. croup required an extra trip to cardio. RSV, for which bram spent 4 days in hospital, got asher admitted for four days. 

i am sick and tired of people trying to "beat" me in some sick, twisted competition to see whose child is more unstable. really? is that a competition you really want to be in? because you can't win that one against me. i'm sure (hoping, for purely selfish reasons, admittedly) that there is someone out there who can beat me. but i don't know who they are. sure, i take asher's stuff in stride and deal with it and somehow manage to laugh and rejoice and smile through (most of) it. but it's hard sometimes. really hard.

because it doesn't stop. and while some people just keep their eyes peeled for the tiniest things that might be going wrong with their child, i would much rather bury my head in the sand. i can't even count the number of times i have said to doctors, "what i'm looking for here is, 'mom, you're paranoid. go home.'" and you know what happens instead? we get admitted. (but you'll notice that i said this to doctors, which means that i took him in anyway, even though i didn't want to, and i was hoping i was wrong.)

know what sucks? HLHS. 

know what else sucks? someone telling you that you have no idea what it's like to have a child who is unstable and could die from something little. being told that you don't understand what it's like to have a child who is in and out of hospital all the time. being told that you just don't understand this life at all.

because let me tell you, i could write a book about it!! (or at least a blog or two.)

if you want to be supportive, or a friend, or even if you're venting about the crap in your own life (which i'm very understanding of; we all need to vent, because we all have stress, and what's nothing to me might be major to you, and i get that, so vent away). just don't. don't. DON'T tell me that i don't understand. because if that's what you think, knowing anything about asher and his journey...

then just leave me alone.

my poor little man...

he's been through so much over the last few months... well, actually, he's been through so much over the last 3 years and 5 months.

and he's gone through it all with so much joy and grace and laughter and beauty and strength. he rarely complains, only in the moment, but once the IV is in, or the blood is sent off the lab, and he wakes from sedation, or the feeding tube is in place... he's back to his usual self, playing and chatting contendedly and filling everyone around him with hope and light.

and he still does this.

usually.

yesterday afternoon, he was tired (ok, i was, too), so we went upstairs for a nap. we climbed into bed, pulled the blankets up... and he started to cry.

"what's wrong, sweetie?" i asked, thinking it was just tired tears.

"i scared, mommy."

i'll admit, initially i thought it was fear of monsters under the bed or something. so i asked what he was scared of.

"dokkers."

and my heart broke.

he is now scared of doctors and nurses and hospitals and, well, anyone who shows up with a stethoscope or a name badge on a lanyard. he has been through so much, especially in the last few months. and now, of course, he's old enough to understand what is going on, but not old enough to understand why it's happening. he knows he's covered in scars and zippers. he knows he has a pacemaker. he knows he sees medi-types too often. just this week, for example, just this week he has been to emerg and his paed's clinic. just. this. week.

and this is a good week.

i held asher as he fell asleep. and while he dozed, i moved to set the alarm, in case i fell asleep, too. i needed to meet the kids when they got off the bus. i moved a few inches over

and asher woke up

screaming

"don't leave me, mommy! don't leave, mommy! stay here!! don't leave me!!!"

and my heart broke all over again.

so i just held him, as he cried, as i cried.

for deirdre, in hopes that you'll read this before wednesday...

what timing. i mean, really, what ridiculous, back-stabbing timing asher has...

i was looking forward to seeing you on wednesday. now that the fontan and the bradycardia are behind us, i was going to regale you with tales of normalcy. not our "creeping normalcy," but actual, honest-to-goodness normalcy. i've lost the extra pounds i put on in the hospital, and i've started working out again, and physically, i feel great. sure, i'm still exhausted, but that's ok. i can nap with asher in the afternoons, and i can go to bed with the kids now, because asher doesn't get meds at midnight anymore, just at bedtime. the kids are happy to be home, and they're playing so well together (usually), and asher is quickly re-learning how to share and play with others again. (he'd been on his own - other than me - for 7 weeks, so he'd gotten used to playing on his own, and all his toys were only for him, and he didn't need to ask bram for that train or car and blithe didn't take his toys for her barbies... but he's adjusting.) we've only got a few days left of the fat-free diet, but i've discovered that fat-free cream cheese makes a great cream sauce for pasta, especially when you throw in some spinach and sundried tomatoes. i've done dishes and laundry and tidied up. i've gone grocery shopping. i have spent time with my friends, and i've read a couple cheesy romance novels and on friday night i went to see my friend's band play in london. i have a job lined up, just waiting for funding right now. i was planning on returning to my spirituality group and getting started back with the music team at church. money's tight, but it always is, and we get by. last week i started prepping the garden for planting, and there's garlic coming up from last year, and i think i want to grow tomatoes and zucchini and herbs and spinach this year, maybe some hot peppers, too. i had those a couple years ago and they were great. and today, asher and i were working on potty training, because he's "a big boy now" and "big boys go to da baffroom" so asher "not need pull-ups anymore, just underwears." and he was doing so well. only one accident all day; my dream was that he'd be fully trained by the end of the week, since he's so determined.

i imagined sitting down with you and filling you in on our normal life, our stable life, and you'd be so happy to hear it all, and you'd be amazed at how asher could go from a heart barely beating anymore to completely stable in such a short period of time.

and then came naptime. and he was short of breath from climbing up the stairs. (he hasn't had that problem in months.) and once he fell asleep, he started sweating again. a lot. i could have wrung out his thomas pillowcase. and he was pale. very pale.

i called our paediatrician's office and told them what was going on, and please tell me she'll wait to see him tomorrow, because "other than the shortness of breath and paleness and sweating, he's fine and not distressed." (you might not get that, but please tell dr c that i was laughing while i said that, totally joking, because he'll see the humour, i'm sure.) she sent us to emerg instead. oh, why, God, can't a doc just brush off some symptoms once in a while? is that too much to ask?

so off we went. ash, me and the kids. (and yes, it's like i have two families. there's asher, and there's the kids. rarely are they grouped together. it's what this kind of life does to you.) we were greeted at triage by name and the nurses were amazed by his sats, which are now gloriously normal. he sounded clear, and even though he's pale today, they could all see how pink he now is. i joked that it's amazing what some oxygen and heart that beats can do for a kid. they didn't realize that he'd gotten a pacemaker, but of course, they know him, so they weren't surprised. we went to register, and the nurse there knew asher and called him by name. another mother looked at us funny, and i just said, "we're here a lot, can you tell?" and we laughed. we got into emerge, and another nurse came over because he'd seen asher's sats on the monitor and he saw asher's colour from the nurses' station and needed to see him for himself, figuring asher had had the fontan but he didn't know for sure, and he was really happy to see asher looking so well, and recommended that the kids try hot dogs with peanut butter, which personally i think sounds disgusting, but bram is all excited to try it now. delightful.

the resident came over and asked if asher had a fever, runny nose, cough, any cold symptoms, and i told her that if he did we wouldn't be there, because that's just a cold and he'll get over it. she looked at me weird. but i was honestly hoping to hear that i was paranoid, that it was humid today, and that asher is otherwise fine. so she ordered a chest x-ray and ECG, and i expected they'd find nothing.

the x-ray was ok. asher didn't want to go, but he hurried through his popsicle and was excited to show blithe and bram the fish in the radiology waiting room. he was so funny during the x-ray. they had to do each shot twice, because he moved during the side view, and during the straight-on shot, just as they were taking the pic, he put his hands up and asked if we were done. haha, no. but then we were, and he got some stickers for himself (thomas, percy and james) and got some for bram (thomas and james) and some for blithe (snow white). and i got to see his x-rays. i hadn't had the chance to see his pacemaker yet, so i wanted to see it. it's so cool! there's the generator, which you can fully see in the side-view pic, and i saw the leads attached to his heart. wow, i love hearts! and i noticed that there was no fluid accumulating, which is why they wanted the x-ray, just to make sure, even though he sounded clear. when the resident came to discuss it with me, she said it looked ok, and i replied, "yeah, i didn't see any fluid on the x-ray," and again she looked at me weird. but whatever. she's never met us before; she doesn't know that i look at all his x-rays in london, and i know what they should look like, and i can pick out the problems before they do.

then she pulled out the ECG. the one asher had helped with, putting some of the stickers on himself and pulling the leads off when it was done. i looked at the report, but it was upside down so i just ignored it, figuring it would look ok (a mom can dream) and we could go home because i'm just not used to how a fontan should behave.

and she said that there was a problem with his T-wave on a couple lines, that they were pointing down instead of up, and they're letting us go home because we're going to be following up with cardiology this week. (i was unaware of an appointment this week with cardio. we were supposed to be free until the end of the month when we went in for pacemaker clinic. so i'll be calling about this in the morning.)

so now there's another problem with asher's heart. and of course, it's electrophysiological. because i don't understand electrophysiology. so obviously that's what he'll go for. something i don't get. and now i'm tired again. wait, tired isn't the word. weary, i think, is better. and so completely sick of all of this. the fontan was supposed to be the end of all of this. and then when it wasn't, that's ok, because the pacemaker would take care of this, and we're done now, and we're going to have normal lives now, for the first time in asher's life, it was all going to be normal. and it was, for a few days there. a few wonderful, miraculous, unprecedented days. what a joke. it was just a tease. like a carrot dangled in front of us for a couple weeks, and just when i started to let myself believe that it was in our grasp, it was yanked away, out of reach.

and i could just cry.

and i just want to sleep.

i cried tonight when i was getting asher ready for bed. bram gave me a hug. blithe gave me her favourite stuffed animal to sleep with because i "need mufu more than i do, mommy," and she wants to sleep with me tonight, so that, if i start to cry, she can just hug me and it will be ok. asher just played and was oblivious to anything being wrong in the world.

and i resent him for that. i hate to admit it, especially publicly, but it's true. it's his heart that's breaking mine right now, and he just carries on as though everything is hunky-dory. that's his little gift, i guess. but tonight, in the mess of this, having been blindsided again, i'm having trouble with that. i'll probably feel better in the morning, and when i see you on wednesday, i'll probably be back to myself again, but for some reason, i wanted to write this tonight, while i'm feeling it, because it's fresh and you want to know what this life is like.

and this is it. honestly.

see you wednesday.

seriously?! you have GOT to be kidding me!! i thought we were done with this by now!!

i give up.

ok, i don't give up. but i'm sick of all of this, i really am.

today, asher was/is pale, short of breath, and very sweaty. i could have wrung out his pillow after his nap today, and asher is not a sleep-sweater. yeah. so i called our paeds, who of course...

sent us to emerg.

where i was hoping for (and expecting, to be honest), "mom, you're paranoid. he's got half a heart and it's humid out. this will happen. go home."

what i got instead was...

"there's an inversion in his T-wave on the ECG. you have an appointment with them on wednesday, right? we'll let you go home, but only because you're seeing them this week."

let me be clear here, i was not aware of an appointment with cardiology this week. i knew we are scheduled to go for pacemaker clinic at the end of the month, but this appointment was not on my calendar, and now i'm worried.

and scared.

and confused.

between the fontan and the pacemaker, wasn't asher supposed to be stable now? weren't we supposed to be done with all of this? where's the stability we'd been promised before the fontan?

oh, wait. i forgot. we're talking about asher, and he does things his own way.

and leave it to him to choose the one complication that i simply do not understand. at all. everything else about paeds cardio and CHD i understand, or at least can figure out if i think about it for a couple minutes. but this! electrophysiology is beyond me. i just. don't. get it.

a friend gave me a link to read about arrhythmia and the different waves on the ECG (click here on the title of this post to check it out), and it's helping... but, um... what do they mean by depolarization and repolarization? and when you consider that the T-wave has something to do with the repolarization of the ventricles after the contraction, i'm completely lost. and i can't find my favouritest book ever, my trusty, little red medical dictionary that (ironically) buffo (an electrophysiologist) told me i shouldn't have.

so right now, to be honest, i just want to cry. i thought this was all done with. and i thought the pacemaker was going to solve all these problems.

oh, wait. the T-wave was never a problem until today. of course! because why would asher show all his cards at once? that would be too easy.