french fries with mustard

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

Asher is quiet. staring out the window.

i'm quiet. staring at Asher.

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

i'm quiet. staring at Asher.


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

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

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

ah, gravity.


III.

Asher's running around
wearing his little backpack.

he's "eating."

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

so i cut it, and pull it out.

and he eats supper.


IV.
i'm quiet. staring at Asher.

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

and that knocks me out.

a normal, hum-drum kind of miracle

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

Asher is growing up.

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

seven.

WHAT?!

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

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

what normal lives like...

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

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

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

i caught a glimpse of him, as he will be

when he's older

when he's grown

when he's a young man.

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

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

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

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

i knew

that Asher just might make it.

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

and change the world

and change a life

and live his life

however long that may be.

and it will be long enough,

however long it may be.

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

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

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

all the time

for everyone.

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

the best kind of miracle.

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

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

because it really, really isn't.

*****

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

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

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

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

to my sweet littlest big boy,

i love you, little dude.

it's 2:30am, and you're fast asleep beside me. technically it's december 2, but you don't know that yet. to you, it's still the first. which, i suppose, makes you both four and five years old right now... five in reality, four in your reality... i wonder which one is righter.

here it is. your fifth birthday. you weren't supposed to be here. you weren't really expected to make it this far.

but you've made it this far.

i couldn't be more proud.

i couldn't be more grateful.

this truly is something remarkable. for a lot of reasons.

sometimes i wonder how we've gotten this far. i guess i could, or should say it's God, and that would be right, so i don't want to leave Him out here. i want you to know that we couldn't have done any of this without His help and guidance and strength and grace... but i don't know... somehow, chalking it all up to God just kind of makes it all seem so trivial and simple. (or at least, that's how it feels at 2:30am.)

frankly, we've gotten this far with a lot of blood, sweat and tears. literally, blood, sweat and tears. it's true, i wouldn't trade any of this for the world, because it has made all of us who we are today. but, on the other hand...

ugh.

to say this milestone is a gift... i don't know. i almost feel like it whitewashes everything we've been through... sanitizes and sterilizes it all... when in reality, you've worked damn hard to get this far. and so have i. and so have countless docs and surgeons and nurses and other workers who are too numerous to mention. and to call it a gift... i'll be honest, dude, it's not really a gift i'd put on a wish list, if you know what i mean. no offence, because i know it's your life and i know it's the only life you've ever known, and i think that on a different journey you probably wouldn't be this beautiful, radiant light dancing along beside me.

but then i think back over the last five years... and i get tears in my eyes. you've come so far. no one could wrap their heads around the fact that you were eight days old before your PDA closed. eight days old. that just doesn't happen. and yet, there you were.

eight days old, and lying in Cardiac Critical Care at Sick Kids... so far from home, in a place that would become a second home so many times over the next five years.

i remember sitting next to you for hours on end. watching you, reading to you, talking with your nurses, listening to your docs, praying to God, staring at the monitors. but mostly, just watching you. it was really all i could do. i just sat there. right there, with you. holding your hand, crying over you, smiling at you when you opened your eyes, cheering you on in your little victories... the first time they took out your breathing tube, each line they could remove, each time your sats and/or heart rate and/or blood pressure stabilized... i feared for you with every challenge, too, though... each time your pressures increased to dangerous levels, each breath you struggled to take, each time your fever spiked, each time your sats bottomed out, each time you got a new line... i cried for what should have been when they gave you formula through a tube, when i had to put you down because you were destabilizing in my arms, when i wasn't allowed to touch you or speak to you or do anything but watch, because that would stimulate you too much and could have killed you...

oh, my sweet little man...

i'm lying here beside you tonight... this morning... whatever... and you're fast asleep, mouth open, arms up over your head... and i want to tickle your underpits. yes, it's bad, but sometimes i can't help myself. you just have the sweetest giggle i've ever heard. probably because i hear it in contrast to everything else.

probably because, so often lately, i don't hear it in contrast to everything else.

i just hear it. that sweet, musical, light and rambunctious giggle that bounces along with you wherever you go. it's just there. just like it is for any normal, little boy your age.

there's a lot in that giggle. there's victory and strength and determination and courage.

and there's nothing in that giggle. no pain or struggle or fear or sorrow. just light and joy and sheer, total happiness.

i joke with people that you run on batteries. you tell people you're a robot. "isn't that sweet," they say, because they think we're joking. they think you're using your imagination, and i'm exaggerating the way mothers do about their little boys who just go go go. because, really, no little boy runs on batteries. i joke about your slow-motion setting, and that maybe next time, dr c can give you a pacer with a mute button.

but that's just because dear me, child! you're loud!

but you know... i joke that you run on batteries, and you tell people you're a robot. if they only knew...

but then, somehow, the fact that they don't know, the fact that they can look at you and just see a normal boy, a normal, rambunctious, baby-of-the-family, goofball boy...

that's the gift, right there. that's the miracle. that's the milestone.

that you're normal. that you're turning five, and you have no idea how huge that is. that you're turning five, and you're having a birthday party on saturday. that you're turning five, and you're just, "i'm turning five!" and it doesn't knock you on your ass in shock and amazement that you've made it this far.

to you, your fifth birthday is just another reason for people to lavish you with attention and love and kisses, and that you're going to get presents and you got a cheque from Great-Grandma in the mail today...

which would be yesterday by now...

because it's 3:03am right now, and you're fast asleep beside me. technically it's december 2, but you don't know that yet. to you, it's still the first. which, i suppose, makes you both four and five years old right now... five in reality, four in your reality... i wonder which one is righter.

it doesn't matter. you'll be five when you wake up. and you're going to wake up. and that's so miraculous.

because it's so normal.

i love you, dude. from here to one side of the galaxy to the other side and back, and then all over again. or, as you mumbled in your sleep a few minutes ago, "i love you more, to infinity and beyond."

love,
mommy
xoxoxoxoxoxoxoxoxo



ps - please, never say "righter." it's not a word. i just made it up because that's how i roll sometimes. i just don't want you to grow up thinking "righter" is a word. because it's not.

surrendering is NOT the same as giving up.

oh, my sweet, sweet little asher...

by now you probably know that, if he's not already failing, he's at least "flirting" with it.

and as you can probably imagine, i hate it.

i love my littlest man. but just last month i was reminded of something:

kids with HLHS have a 70% chance of surviving to 5 years.

and asher is already 4.

now, i know, statistics are not a death sentence. i know. i really do. but...

asher's HLHS is pretty much as bad as it gets. and he "should" be dead 15 times by now.

the other day, when we went to see our amazing dr b, i already knew what she was going to say. i was hoping for an ear infection or bronchitis or a nasty cold or something, but i knew. i memorized that list of symptoms when asher was four weeks old. i know what to look for, and i knew what i was looking at.

i also know about the possible ischemia, i'm watching and waiting for a heart attack, i'm pretty sure his pacemaker isn't working properly.

but the moment dr b uttered the words "congestive heart failure," it was as if someone kicked me in the stomach. i wanted to vomit. i wanted to cry. and i was just. so. tired.

call me crazy, but i don't want my precious little man to die. i don't. and i can guarantee that anyone who has met him feels the same way. he's just too amazing, too sweet, too funny, too loving, too.... asher-ish for that. i want him to grow up and grow old and have a dozen healthy kids and a hundred grandkids and a thousand great-grandkids.

but that 30% haunts me...

and yet, i know that God specifically designed asher's heart this way. i don't know why, but i know that He did.

so how do i reconcile this mother-love/fierce determination to see my child grow up, with God's will?

um... i don't know.

quite a while back, i was in a small group. and we were talking about surrender. namely, surrendering our baggage to God. here is what i said:

my son has half a heart. he's been through too many surgeries, too many infections, too many hospital admissions. he has too many doctors. and yet, i know that this is God's plan for him. and so, because of that, i have surrendered asher to Him. whatever He chooses to do, whether it's to heal asher completely, whether it's to take him from me, whether it's to keep him here and not take away this illness, i have accepted and will continue to accept that that is God's will. but in the meantime, even while i wait to find out what God has planned, i have to deal with all of this. i have to take asher to appointments. i have to watch for symptoms. i have to sign consent forms. i have to sit with him in ICU. i have to feed him according to his special dietary needs. i have to deal with his condition now, even though i've handed him over to God.

and that's that, i guess. i've surrendered asher to his Maker. thankfully, his Maker has decided that asher will stick around, though for how long is anyone's guess. but i still have to deal with all this crap.

i read something interesting today:

faith isn't necessary when we know the outcome. faith is what gets us through the uncertainty.

yes, i'm exhausted. yes, i am completely sick and tired of heart stuff. yes, i hate it.

no, i don't know how long he'll be here. no, i don't know if he'll ever get a new heart. no, i don't know what's going on in that wonky little heart of his. no, i don't know if he'll pull through this latest bout of failure-ish. no, i don't know how bad it will get, or if the few doses of HCT will do the trick.

i just. don't. know.

and i hate that.

but.

when i stop, and i mean

when i stop

and listen

and look

God is there, doing something. i don't know what He's doing, but He's in there.

and i'm ok with that.

(ish.)

but i accept that God sees the big picture and i don't and He knows what's best and i don't and He loves asher waaaaay more than even i ever could.

if He chooses to take asher at some point, i'll hate it. but i'll accept it. i'll weep and sleep and grieve and mourn and stare off into space because that's the only thing i'll be capable of doing (can you tell i've mourned him a few times already, that i'd have an idea of what i'll be like?)...

being asher's mother isn't easy. being asher isn't easy. but you know what?

every night, when asher says his prayers, he asks God to "make me feel much better." how does this 4-year old know to ask God to do that? how does he know that God can do that? and how does he not stop asking for relief despite the fact that it doesn't come and he still has chest pain every day and he still gets tired and short of breath and overloaded with fluid and he still can't keep up with blithe and bram?

somewhere along the way, asher has learned to trust God.

and somewhere along the way, asher has learned to wait patiently for God.

and it still hurts and he's still scared and he's still going for therapy on tuesday and he's still sick...

and he's still trusting God and waiting for God and looking to God for what he can't do himself.

i'll admit, sometimes i get caught up in the horror of HLHS and CHF. sometimes i mourn my child who is still here but may not be for much longer. sometimes i just hold my breath waiting for God to do something, anything.

but most of the time, i just continue to watch for symptoms and take him to the docs and give him his meds and feed him fatty foods and keep on keepin' on...

and i wait for God.

and you know what they say about waiting for God:

But those who trust in the Lord will find new strength. they will soar high on wings like eagles. they will run and not grow weary. they will walk and not faint.  (isaiah 40:31)

last night i just wanted to cry when i thought about this latest bout of failure. and i almost cried when i told my friend about it this morning at church. but i also know that God is in control. God has a plan. and God hasn't forgotten about us. so we're just waiting for Him.

and tonight, sure, i still want to cry and vomit when i think about it all. but i'm not so tired. and i remembered to pack his meds tonight when he went to his dad's. and i'm going to make an appointment for him to see paeds again, and i'm going to take him for play therapy on tuesday. we're going to keep going, because we're waiting for God and trusting God, and that gives us the strength we need to get through today. today we ran and didn't grow weary. tomorrow we may walk and not faint. our pace isn't the fastest and we don't actually know where we're going, but we'll just keep on going.

and for today, that's enough.

christmas 2010

yes, this post is late, and no, i don't have any pictures. :( i've lost my camera, which makes me very, very sad. so you're just gonna have to imagine all that i'm going to share with you. which is, without a word of a lie, miraculous.

the kids and i were gifted with the most unbelievable christmas ever. "santa" came. and stayed until "he" had delivered 3 garbage bags full of gifts. the boys got all the transformers they had asked for and batman pyjamas (complete with cape). asher got a new elmo stuffie, an elmo watch, elmo duplo, elmo play-do, and more that i can't even remember, there was so much stuff. bram got lego galore - pieces, kits, and books - and again, a ton other stuff. blithe got all things bieber - sheets, singing doll, book, CD. she got a lalaloopsy doll and an easy bake oven. and again, there's more. literally, everything they asked for. ever single thing.

for the four of us, we were given 8 movie passes, snacks for our nights out, and 2 free blockbuster rentals.

i got more for this christmas than i have received in at least the previous 3 years combined. i don't usually ask for much, a couple little things, and that's it. i really don't need anything. i got gift cards for chapters and starbucks and shoppers (my happy places, in case you're wondering, haha). i got a beautiful card and note from "santa" (which i now carry in my new purse from the kidley-winks). it was...

stunning.

we were also given 6 boxes of dry goods for the panty, and grocery gift cards. so i don't have to worry about that for quite some time. i can't tell you how much that helps us.

and then there's the stuff from my parents, my brother and his girlfriend, and the beautiful picture of my grandparents (my grandfather passed away in October 2009, while asher was admitted with H1N1). everyone in my extended family (other than one of my uncles and his wife) were at my grandmother's for brunch, including my aunt's husband and my cousin's husband, who got the day off work for the first time in over four years. everyone was there, and it was beautiful and loving and warm and joyful. truly miraculous.

i was also blessed with the opportunity to gift one of my aunts with something small (but very cool... she's lucky she got it, since i loved it so much, haha), and a note which made her cry (in a good way).

this was truly the most beautiful christmas i have ever experienced, and i am holding this close to my heart.

i hope your christmas was just as beautiful as ours was. i hope you experienced all the love, grace and peace that is the spirit of this holiday.

on this day in history...

i took asher to our local emerg. he was having trouble breathing. i thought he would just need some oxygen and then he'd come home.

instead, we were sent to london.

where dr pepelassis (aka, "pepy") checked out asher's heart.

"usually babies with this condition," he said, semi-panicked, "are operated on right after birth. he's eight days old now. it's too late. he's going to die. you have to be strong now, so pull yourself together, and come back and say your good-byes."

he called SickKids anyway, and they told him that if he could get asher stable enough for transport, that they would take him and "see if they can try anything."

in toronto, i was drawn a picture of a normal heart.

and then i was drawn a picture of asher's heart.

and there is a lot of stuff missing in asher's heart.

on this day four years ago, the cardiologist in toronto went over our options:

1. 3 open heart surgeries. one right now, one at six months, one at two years.
2. very new (read: partially experimental) but gentle closed heart surgery now, massive open heart surgery at six months, and open heart again at 2 years.
3. transplant. meaning weeks or months on by-pass, and the risk that asher might not live long enough to get the new heart.
4. comfort care. (for those unfamiliar with the term, it's pain management and nothing else.)

that was four years ago.

and right now, as i type this, asher is watching Roly Poly Olie, and drinking juice with his fingers. he sticks his hand into the cup, then sucks (noisily, i might add) the juice off his fingers.

it's been a long four years, to say the least.

i'm hoping we'll have many, many more.

and today is another special anniversary. one of asher's little heart buddies, Yale, is celebrating his heart anniversary today. two years ago, Yale was given his new heart. and believe me when i say, he hasn't looked back!!

so congratulations, yale and family. :) and thank-You, God, for saving and preserving my littlest man's life over the last four years. 

look what my baby can do!!!!!!!

that's right, asher fans.

HE CAN WRITE HIS OWN NAME!!!!!!!!!

and he's not even 4.

yup. he rocks.

and those faces... those perfectly (for a kid) drawn faces... you guessed it, asher drew those, too. he's awesome.

some musings here... nothing urgent about asher. just me and my faith journey. so don't feel you need to read if you don't want to. LOL

a quick heads-up before you read: please don't misunderstand me, here. i'm not out to criticize anyone's faith, i'm not trying to say that i'm right and "they" are wrong ("they," for lack of a better term). right now i'm thinking about my own faith, and merely using other people's as a foil for my own. nothing more. also, i think i ramble a bit... ok, a lot. sorry. again, don't feel that you need to read this post if you don't want to. i'm just thrashing my way through some faith-type questions. ok, you may proceed to the rest of the post now, if you so choose.

i've been reading a few other blogs lately, and i find myself wondering today...

about my faith in God...

not "do i have faith," because i do... but maybe more like... i don't know...

here's the thing:

i'm sure there are people out there, probably who read this blog, who pray that God will heal asher, that he'll have a whole heart and he'll be fine and grow up strong and healthy.

but i'm not one of those people. i asked God for that "big H" healing, and He said "no, that's not the miracle I'm going to do here." so i don't ask God to heal asher.

i've also accepted the 70% chance that asher will grow up. i live in the 70%, but i still hold that 30.

i don't see asher's complications and bouts of failure and infections and weird what-nots as being the work of satan, as some people see illness. i see them as the natural results of HLHS and a compromised immune system and mildly wonky kidneys and epilepsy. i see them as semi-expected (albeit loathesome) bumps along asher's path. and i see them as opportunities to look for God (and find Him)... which i do.

i don't know... is there something wrong with me, that i simply accept that this is the way it is? that i don't see evil forces at work when asher gets sick? and i'm being honest here. sometimes i look at others' faith and go, "why don't i believe like that?" and even, if i'm honest, "should i believe that way?"

but every time i start to think that way, i hear a still, small voice that says, "your faith is just fine. keep this faith."

maybe i'm tired right now, and that's why i'm wondering. i mean, just this morning when i posted, i asked specifically that you not pray for a miracle, but rather that asher would continue to show these symptoms tomorrow and they would find something.

again, please don't get me wrong. i want asher to be healthy. i want this to pass. i want this to never, ever happen again. i want him to grow up and be strong and not have to worry about high-fat diets, and high-iron diets (sometimes his haemoglobin is a little low), and high-protein/carb diets (he might be hypoglycemic, on top of everything else), and low-sodium diets. i want his heart - this heart, the heart he was born with - to carry him through a long life. i want this heart to stop failing. i want him to get married and have children and grandchildren and great-grandchildren. i want him to stay out of hospitals - even out of emerg - for ever, going back only for yearly check-ups. i want him to hate echoes and ECGs and BP cuffs and sat probes and stethoscopes. i want him to say, "who's dokker caldarone?" instead of "i not want to see dr russell. she boring. i want to see dokker caldarone." (believe it or not, that's a direct quote from this morning.) i want him to react and to tell me when he's dizzy, short of breath, refluxing, because i want those things to be rare anomalies in his life instead of the norm.

but i know that this isn't likely going to be the way it is. his heart will continue to give him problems. he will always have to be careful. he can't live a fully normal life. sure, he'll come close, because that's the type of person he is. but he won't be able to race motorcycles (he told me the other week that he wants to do that when he grows up). and he can't go on roller coasters, and his endurance won't be like other kids (no soccer or cross-country for him). there are days i wish i didn't know what it was like to get bad news from a doc. i wish i didn't have the number for SickKids memorized (sadly, i do, and it's in my phone just in case i get too flustered to recall it). i wish he didn't know that emerg = popsicles and stickers. i wish i didn't know what each cardio's specialty is, and that i didn't have favourite emerg docs.

and yet... this is our reality.

and i accept it. i roll with it all.

and i still maintain that it is God who set this journey for us, who "allows" these things to happen. this is how i see CHF, etc. it's like the weather. God set up these systems to function a certain way, and so they do. sure, there's crappy weather systems like hurricanes and floods and ice storms and droughts and so forth. but they're called "natural disasters" for a reason. it means that these are simply the natural way that weather works sometimes, even though they're harsh. well, it's the same with CHF, for example. asher was given a heart that is not designed to sustain life. and even with all the surgeries, it is still pretty much par for the course. when you have half a heart, you will run into trouble from time to time.

but i see God in these things. God can be and is right there, even in the middle of "natural disasters." i don't believe that God is some distant "intelligent creator" who made these things and then sits back and watches how it all plays out. i believe that God is real, present, and personal. i believe that He is active in asher's journey. i mean, really, how can i not believe that, when i know that asher should have died so many times already?? i see God everywhere along this journey, so i simply cannot brush Him off and say, "look at the crap He left us with."

but... since i believe that God is active in asher's life... i don't know... what does it say about my own faith when i don't ask God for huge miracles anymore? what does it say about me that i don't give satan credit when asher gets sick? i mean, other people seem to see the devil at work in HLHS, so... shouldn't i?

and yet, here's the thing: i am actually cool with my faith. i enjoy it; i have peace and assurance of God's presence with me when we walk through the valley of the shadow of death. and sure, it may not work for everyone, but it works for me. i know that no two people's faith are going to look the same. my faith in God has carried me through some pretty dark times, and not just with asher, either. i don't know...

maybe i should just stop reading other blogs. (right. because that's gonna happen.) or maybe i should just accept my weird faith for what it is... a lifeline, a comfort... maybe a little off of the mainstream, but it gets me through the day.

i have accepted asher's condition. and i trust God completely with my littlest man's life and "health." when God said "no" to the healing, i had one request: "You made him this way, so You sustain him this way." and so far, he has. i can (and do) give credit to the docs and surgeons and nurses and dietitians and so forth and to asher himself for getting us through CHF and sepsis and feeding issues and illnesses and surgeries... but i also know that, if it isn't God's will for asher to get through all those things, he won't.

please don't think i'm ok with the idea that my son won't grow up. i'm not. it breaks my heart every time i think about it. (so i don't think about it very often, and it's one reason why i just focus on the day we have instead of some horrible, heartbreaking, unknown future.) i want my baby to grow up, and i will fight like hell and do everything i can to make sure he does. yes, i'm aware of that 30%... but i live in the 70. that's the number i cling to. that's the number i remind myself of. when everything seems to be going wrong and my baby is dying and i'm scared out of my mind that i'll lose him, that 70% helps me to breathe one more time... and once more after that... and once more after that.

i almost wrote there, "God is in that 70%." but then i realized... that's true... but...

God is in that 30%, too.

which i guess leaves... if my math is correct (and math was never my forte)... and i think i'm right here...

0% room for satan, if God is in the whole 100%, right? is that weird? does that make sense to anyone else? am i just burying my head in the sand about the devil here? i mean, so many other people see him at work in things like failure and sepsis and CHD in general. is it strange that i don't?

i cling to two verses for this journey, and they kind of answer what i'm trying to thrash my way through here today. so i'll leave you with these verses, to ponder and enjoy as much as i do:

I praise You because i am fearfully and wonderfully made;

Your works are wonderful, i know that full well.

                            Psalm 139: 14

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."

                            Jeremiah 29:11

God aka our Refuge

i was asked to share a little bit about the "asher journey" this morning in church. and when i say "a little bit," i mean... i was limited to 4 minutes!!! gah!!!! how to squeeze everything i wanted to say into such a short time?? but i managed... i think... i kind of ignored the clock. anyway, it was an interview, and while you all know the answers to questions 1, 2, and 4 (tell us about your situation; what has your journey involved, and how is asher now?), i want to share my answer to the third question.


what are some practical ways in which you have accessed God as your refuge during your journey?


it's an interesting question; i don't usually think about it so specifically. i just kind of do it without thinking about it quite like that. but i guess i would say that, for starters, as a single mom, i have been gifted with a lot of time alone. so i can spend that time thinking, praying, journaling, reflecting... that time with God allows me to rest, even in the scariest times.

the second thing comes from a rather morbid conversation i had with a dear friend when asher was about six months old. asher was very weak, very sick, and i knew in my gut that he was going to die in the OR. my friend said to me, "yeah, he might die during the surgery. but he might not. you don't know. you have no guarantees with him, but you have no guarantees your other kids will grow up, either. they're fine now, but things can change. you just don't know what will happen." and believe it or not, that conversation, as gut-wrenching as it was, opened my eyes to the reality that i really don't know. i don't know why asher was made this way, i don't know what the purpose is, but God knows, and that's enough for me. i don't see the bigger picture, but God does, and He is in control. that's really comforting, because i know that i don't need to control everything, and i don't need to know the future.

finally, when asher was two months old, he was in the hospital. he was pretty sick, but no one could figure out what was going on. so one night, i asked God to heal asher. you know, the "big H" healing. and as clearly as i hear you today, i heard God say, "no, that's not the miracle I'm going to do here." so i've gotten to spend the last 3.5 years looking for the miracle. and God promises that if we're really looking for Him, we'll find Him. and i do! He's everywhere in this journey. and so, in those times when it's dark and scary and it feels like God has forgotten us - because those moments happen; it's not all sunshine and rainbows - i can look back and see that God was there and there and there and there and there, and that gives me the courage to not look forward - because i can't - but i can look around and look for God in the current situation.

there you have it, folks, for those of you who missed it this morning. it was a great morning; i talked with so many people after the services, including a single mom with three kids (now grown), and a heart family with the father and son with Tetralogy of Fallot. it was a wonderful morning, and i'm very, very grateful for being given the opportunity to share some of this story. thanks for interviewing me, ron, it was a great experience! 

no, i hadn't forgotten about you... i just *really* don't want to post about this...

yes, i know, it's been over a week since i last posted here. and i know a lot of you are going to be thinking, "wow, things must be going great in asherland!" sadly... not so much.

after the marathon day in paeds, emerg and cardio last week, things went from bad to worse. and i mean, w.o.r.s.e. asher told me on saturday, "mommy, i dizzy again."

note the word "again." isn't that fantastic.

when i asked him about that, he said that he'd been dizzy at the hospital. which meant, that all day thursday, he was dizzy and just not telling me about it.

and he was dizzy again on saturday.

i had been suspecting since friday that he might be dizzy, since he was stumbling like he was drunk while running around. nothing major. just semi-losing his balance.

then, on saturday morning, he fell down in the driveway.

and hit his head on the ground.

so when i say he "fell down," i don't just mean that he tripped and scraped his knee. no, that would be normal, right? oh, God, why oh WHY can't he just trip and scrape his knee?!?! just once! that's all i ask. just a scraped knee. put a little band-aid on it and he's good to go. nope, not my kid. a scraped knee would be too simple.

he was running around, laughing and playing with blithe and bram and then all of a sudden, BOOM! he's dropping to the ground without a word. and when i picked him up, he told me he was dizzy when he fell.

the same thing happened later in the day at a store. he was running around (i was trying to corral the kids, but i was distracted and they were having fun so they were having none of it), and BOOM! down he went, hitting his head on the counter.

of course, i dropped down to his level, got him to sit up, and i asked him, "asher, were you dizzy before you fell just now?" "yes, i dizzy." and i got a little nauseous.

"asher, did your head feel funny before you fell down?" "yeah, like dare cotton balls in my ears." and i got a lot nauseous.

"asher, did everything go black right before you fell?" he answered quietly and avoiding my gaze, "yeah."

"asher, when you fell down this morning, did everything go black?" "yeah."

does anyone else want to vomit right about now????

so our paeds, the fabulous dr b, sent us to emerg in london, and let them know we were on our way. we were there for three hours, while they monitored him, did a chest xray and an ECG. they wanted to see if he would do it again. of course, he didn't, because when he fainted during the day, he'd been running around and playing, and he wasn't doing that in emerg, just sitting on his bed.

needless to say, they didn't find anything, so they sent us home.

cut to this week. dr b has called our toronto cardiologist, dr russell and told her about the fainting spells and dizziness. "oh, dear, he shouldn't be doing that," was her response.

so that's where we're heading this afternoon. you'll note, half-way through what was supposed to be a little mini-vacation for the kidley-winks and me.

in the meantime, i've been doing some reading and thinking (you're not actually surprised by that, are you?) and i have three ideas about what could be causing these symptoms:

1. pacemaker malfunction. this would be the "simplest." i put that in quotes because if it's malfunctioning, it would not be firing when he needs it to, and i'm sure we all remember that now, asher's heart doesn't like to beat on its own very often (4 out of every 5 heartbeats is prompted by the pacer). so if it's not firing, this is a major problem, and would possibly (read: probably) require a replacement generator. which means, you'll note... surgery.
2. scar tissue in his pulmonary veins. you might recall that in may 2008, asher had patches put in the veins which bring blood from the right lung to the heart, because they were too small. you may also be aware of asher's love of scar tissue. yup, this kid of mine loves to put scar tissue - and lots of it! - on anything put in there by someone other than God. which is a lot. so, my thought is that asher has a lot of scar tissue built up around those patches, and that's blocking the blood from returning from his right lung. this would cause the pressure in his right lung to increase to an alarming degree, and since blood cannot get to his heart, it cannot get out to his body, which then causes dizziness, light-headedness and fainting, especially during periods of activity when the body requires more blood, not less. if this is the case, it will require some sort of surgical intervention to treat it.
3. the arch. we have known about the abundance of scar tissue in asher's aortic arch for over two years now. but because of the nature of the surgery, they didn't want to intervene unless/until it was causing symptoms. (if there's no symptoms, it means it isn't having an effect on the body. once symptoms appear, the narrow arch is now affecting function and blood flow and all that.) interestingly, when i mentioned asher's BPs to our nephrologist the other day, the first thing out of his mouth was, "is his arch narrowing?" {wave of nausea}if the arch is narrowing further, it will mess up his blood pressure and decrease blood flow out of the heart, which will cause dizziness, light-headedness and fainting. if the problem is the arch, they will have to operate and soon, and that surgery is horrific.

right now, i'm hoping for a simple pacemaker malfunction. but honestly, my money is on the arch.

so today, we're cutting short our mini-vacation to return to london cardiology for a pacemaker check and a holter (a 24-hour ECG). not exactly my idea of a great way to spend a friday afternoon, but we gotta do what we gotta do.

so, yeah. asher has some pretty major symptoms right now, and they're not good. but we're working on it, and we'll get it figured out quickly, and then they will be dealt with quickly. because a fontan with a pacemaker simply should not be fainting. it just. shouldn't. happen. so this is very scary, and i don't mind admitting that i'm feeling pretty freaxious lately. so please hold us in the Light. and please pray that the docs figure out what the problem is.

funny little God-moment this morning, though. as i was reading my Bible, i came across a verse and, well, let's just say that i've claimed it as my own for now, and it's helping (or at least, inspiring me to not skip cardio this afternoon).

Wait patiently for the Lord.
    Be brave and courageous.
    Yes, wait patiently for the Lord.
                                 Psalm 27:14

it's how i roll

this morning, i was chatting with a friend, a fellow heart mom (gotta love facebook!), and i got to thinking. this life, you know, it does things to you. weird things. it warps you, in a way.

mind you, i almost titled this post, "quothe the heart mom to the cardiologist, 'do you know the kind of life i had to have to prepare for asher?!'" so maybe it's not heart life that does this. but it definitely reinforces it.

what i'm talking about, dear readers, is my sense of humour.

my warped and very, very, VERY dark sense of humour.

to whit, i give you some of the things i've laughed and joked about over the last 3+ years.

1. when asher was diagnosed, at 8 days old, it was rough. and by "rough," i mean that the next two days in their entirety were spent with docs giving me bad news. all the time. for two whole days. i said to asher's dad over supper on day 2, "ok, i need something to laugh at here. if i can laugh at just one thing, it won't be so horrible." and i started thinking. i'll admit, it took me a couple minutes, and i was starting to lose hope. and then, as i was about to give up, it hit me. "doc said he's going to be blue. well, that makes hallowe'en easy: he'll be grover."
2. leading up to the glenn, asher was very weak and not doing well at all. his sats were in the 60s, his BP was rising daily, he had no energy and was sleeping over 20 hours a day. and he didn't just have the glenn. he was to have the norwood AND the glenn at the same time. two very big surgeries at the same time. and at that point, asher was averaging an admission every month, plus appointments every single day, and countless trips to emerg. i was worn out, exhausted, and quickly running out of hope. i was certain that asher was going to die in the OR. you couldn't tell me otherwise. he was going. to. die. now, i tried to get past that thought. i wanted to believe that he would make it through. so i tried picturing life post-glenn. but every time i did, i could only see 2 kids at home. no asher. so that wasn't working. so i decided that the best i could do would be to imagine asher just surviving the surgery. even if he didn't make it home, at least he'd come out of the OR. i knew what to expect post-op in the unit, so i pictured that. horrible images to cling to, really, but i figured, if he made it through the surgery, he could still die in the unit, but at least i would be there when he passed. and then, one day, while picturing asher with all the tubes and lines and meds and monitors and everything, i realized that his rib cage would probably be suspended post-op. so i added that to my visualization. his chest open, wires wrapped around his ribs and looped over another wire above his crib. (don't know if you've ever seen it or not. it's not quite as gruesome as it sounds.) and then i started laughing. hysterically. i mean, i was almost literally peeing myself from laughing. because, i thought, when people asked me how asher was doing, i could say, "he's hanging in there."
3. during one trip to emerg, i was talking to a med student, and (trying to) teach him about asher's heart. he was having none of it. he insisted that he knew everything, and i knew nothing. he argued with me about what the surgeons have done, and the meds asher's on (i said at one point, "that's fine. you can disagree with me about Lasix and HCT. in fact, why don't you call the doc who switched the meds. his nephrologist. whose other specialty is pharmacology. it's dr f. you know. chief of paediatrics. you can ask him." yeah, i was not impressed with this clerk at all. anyhoo... once i had finished (trying to) teach kid about asher's conditions, he asked, "so, what caused all this?" "nothing," i answered, "HLHS just happens." "no, i mean, were you sick during the pregnancy? what made his heart go like this?" "nothing," i replied through gritted teeth, "HLHS. just. happens." "no, i mean, did you drink? did you do drugs? did you take meds you weren't supposed to?" well, i looked the young man in the eye, and said with a straight face (and without violence, i might add), "actually, somewhere around the 7-month mark, i sneezed too hard and his ventricle fell off."
4. during the spring, i was having lunch with D., dr caldarone's wife. (and no, that's not the surreal part.) these lunches were great; i would tell her about the journey with asher, and she would tell me all about "chris" (dr c) and their lives. anyway, it was during asher's pacemaker admission. D and i are having lunch, and she tells me about their dinner table conversation the night before. dr c was talking about pacemakers (not disclosing any confidential info, don't worry. just talking pacers in general) and one of the kids asked what a pacemaker looks like. so dr c described it, and the oldest said, "i think i had one of those in my desk! but i didn't know what it was, so i threw it out." but wait! that's not the funny part!!! the next day, dr c came in to do the informed consent bit etc. so i said to him, "now, you're sure you have a pacemaker for him, right? no one threw it out or anything?" 
5. another dr c story (i have several). asher went in to the OR at 8am on the morning of the Glenn. dr c came out to the waiting room at 8:40am. (all you heart moms should just read the story before you vomit; it's ok.) he came over to me and sat down. apparently he needed to add something to the consent form but he needed me to witness it so that it was legit. no problem. then he said to me, "ok, well, we haven't started yet." "I HOPE NOT! because you're out here!!!" and he just looked at me like i was crazy for a moment. then when he saw i was laughing, he laughed, too.
6. yet another dr c story. D and i were again having lunch (sometimes i just shake my head at the twists and turns and unexpected acquaintances that come my way in this life). we were discussing the letter i'd written to dr c back in december. i refer at one point to his hobbies (yes, he has some!!!), and she said that he bakes and makes "the best pasta sauce in the world," and "did you know he sews?" "I HOPE SO!!!"
7. back in the day (asher was 4 months old), he was admitted to PCCU in london. dr b came in to see us because he'd heard that we were there and he just wanted to check on asher and see how we were doing. he said at one point, "i'll be back in a little while. just a social call, to see how you're doing, if you need anything." i said to him, "while we're here, the only thing i ever need is coffee" (take note, readers in the area). "i can bring you coffee," he said, "how do you take it?" "two cream," i said. "alright, two cream. no sugar?" "i'm sweet enough," i replied with a smile on my face. "yeah, i'm not gonna touch that one!" he said. yes, folks, i can joke around with cardiologists. 

this is how a lot of us get through. we laugh. you may remember the post from the other day about band-aids. it's how we cope. it's true what they say,

"if you don't laugh, you cry."

and when there's so much to cry about, you learn to laugh at just about anything. it's how we roll.

an email i just sent to someone...

hi,

i was journaling tonight, and got to thinking (as one is wont to do while journaling, i suppose), and i wanted to thank you for writing this book and for telling our story.

a couple weeks before the fontan (so, mid-february), i asked God for the chance to tell asher's story. now, i don't know where you stand with the whole God thing, but i believe. and frankly, as soon as dr c mentioned this project to me post-op, standing there in the hall on the 2nd floor, iknew this was what i had asked for. (go ahead and ask him how i responded. i guarantee it wasn't what he was expecting!) as it is, asher's blog is read all over the world (literally, the only continent unaccounted for in asher's readership is antarctica! how cool is that?!), but this project is just amazing. do you realize what this will do for heart parents???? they won't be alone anymore! they will know, and i mean know that they are not the only ones whose kid has a heart this wonky, and that knowledge brings more comfort and encouragement and life and peace and breath and light than you can even imagine! and healthy-heart people will learn to cherish and embrace and love every breath, every heartbeat. my desire for this project is that people will learn that every heartbeat is an absolute gift. no, wait. that's not enough. it's a miracle.

do you remember when we met? we were standing in the atrium near starbucks, and you asked how asher was doing. i said something about his heart beating only 30 times per minute. that is not only really slow, that is nearly stopped. one beat every two seconds. count it out. i'll wait.... [hums a little tune] ... for perspective, put your fingers on your stomach, just below your ribs, and press in slightly. you'll feel your heartbeat. you'll notice that it's going faster than asher's was when you and i met. and you are an adult, so your heart rate should be slower than a 3-year-old's. but here is what that episode with my littlest man taught me:

there is a miracle every second. the trick is to look for it. but if you look for it wholeheartedly, you will find it. today, i can look at asher, and see with my own eyes 80 miracles in any given minute. literally, 80 tiny... and astonishingly huge!.. miracles every. single. minute.

and that is what i want people to take away from this story. that miracles happen. all the time. sure, it may not be those big "why does this child have a left ventricle all of a sudden????" kind of miracles. maybe those miracles happen, but then they're done. it's the smaller, quieter miracles that break your heart, heal your heart, take your breath away, inspire you to breathe again... and teach you to live.

and every split second of asher's life is one of those quiet, simple, overlooked miracles. they are overlooked by so many people, including me on occasion, even now. but that, the overlooked-ness of it all, is a miracle. i can take every heartbeat for granted. because just a few short months ago, i was holding my breath waiting for the next heartbeat. every heartbeat mattered. sure, they still do... but they're even more beautiful now because i don't have to think about them. "what's his pulse?" "i dunno, but if he's still breathing, it's at least 80." it is only when you have lived through the terror of uncertainty that the unknowing becomes beautiful.

and asher's heart is now even more beautiful to me than i ever imagined possible. and that keeps me going. every day.

and that knowledge, that there is a little boy out there who has fought tooth and nail till he was blue (or grey) in the face to make it through all that shit... that is going to inspire. that is a gift that none of us can even comprehend yet. and that is what this book will give to someone. 

so, thank-you. it's amazing what you're doing with asher's story. just the fact that you're telling it, or even, now that i think about this, that you are aware of him at all, is a gift. and this is going to enrich some poor, freaxious mother's life, and make her heart go up in ways that neither of us can ever know.

thank-you. truly, from the bottom of my heart, thank-you.

what an evening!!!

fyi... this post may bore you to tears, because it's all very, very normal.

:)

this afternoon, when the kids came home from their time with their dad, they went out into the backyard, where they ran around, threw the Frisbee, played tag, tossed some balls around... you know, basic "kids playing in the backyard" stuff.

then we ate at the picnic table, and the kids made up a song about milkshakes. it was funny, since blithe was singing the main part and the boys piped in between lines with "mm-mmm" and rubbing their bellies. too cute!!!

then after supper, we all went for a walk. we walked approximately 12 blocks tonight, plus a while running around a local park/flower garden. then we came home and the kids went to bed.

all so very normal, don't you agree??

the reason i'm posting this tonight is because... for once... asher kept up with the older kids. and he walked the whole time we were out this evening. no stroller.

and he was fine.

not short of breath, not tired, not cranky, not blue.

he was completely fine.

see? boring post. thought you'd like it. ;)

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.

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.)