my littlest man is an artist!!!!

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

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

last night as i lay cuddling...

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

it's my favourite time of the day.

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

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

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

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

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

i could feel his heart beating.

lub dub, lub dub, lub dub...


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

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

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

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

this little heart of his...

deformed...

scarred...

ripped apart...

put back together in a different way...

wired up to a battery pack...

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

and yet, there it is.

lub lub lub lub lub


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

and keeping him alive.

and keeping him alive.

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

to beat at all.

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

a beautiful rhythm.

a miraculous rhythm.

a little boy's rhythm.

my little boy's rhythm.

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

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

and it's just so. very. beautiful.

"mommy, you make percy beautiful for me?"

i was asked to "make percy beautiful" with pale green sidewalk chalk.

asher approved of my work.

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.)

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

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

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

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

holy recovery, batman!!!

so, yeah, remember what i wrote this morning about going to the ward tomorrow? yeah. forget that.

BECAUSE WE'RE ALREADY THERE!!!!!!!!!!!!!!!!!!!!!!!!

they moved us up to step-down this morning, and tonight we're going to be IN OUR OWN ROOM!!!!!!!

pain is stil an issue, so he's getting morphine, tylenol and catorolec (sp? if you know, please tell me. lol), so that will help. he's still getting clear fluids, and doing reasonably well with them, so they've ordered "diet as tolerated" for supper tonight. can you believe that?!?! as for sats... oxygen is turned off, and asher is sitting comfortably and pinkly in the low 90s. absolutely incredible!!!

art line is out, CVL (in jugular) and a couple lines in his hand are still there. but they're thinking of taking out the CVL tomorrow. drainage is almost stopped entirely, and asher really wants his pacing wires out.

also, i got a chance to see dr caldarone again today. a few months ago, around the time i wrote his letter, i created a little art-y piece inspired by the OR. he was really appreciative... and i did notice that the colour scheme matched a couple other things in his office, so that cool. a tad serendipitous, i'd say. he really enjoyed the quotation, and noticed that the heart, which was notably wonky on the left side (which also amused him), was stitched up. it's quite a lovely piece, if i do say so, myself (and yes, my crafty friends... i used BG paper on it).

i explained that, to cope, i have to either laugh or create something pretty out of it, so as i was thinking about the OR, i made this for him. and the quote says,

inside this room, all of my dreams become realities and some of my realities become dreams.                 - Gene Wilder

have a great day, everyone! :)

Heartchitecture

now, normally i wouldn't review a book on asher's blog (especially a book i'm not finished reading yet), but as soon as i read this passage tonight i knew it had to go on his blog. in fact, if it weren't such a long quote, i'd put it on the sidebar so everyone could read it whenever. but alas, it's lengthy.

it comes from an amazing book called The Wet Engine by Brian Doyle, who is the father of a remarkable single ventricle boy named Liam. the book is all about the heart, from a physiological point of view, but also from a more metaphorical/spiritual/poetic perspective. i'm only on page 44, and i'm already hooked. (oh, and the name of this post - heartchitecture - is the title of the chapter.) so here you go:

consider the astounding journey your blood embarks upon as it enters the pumping station of your heart. in a healthy heart, a heart that works as it has been designed to work over many millions of years by its creative and curious and tireless and nameless holy wild silent engineer, blood that has been plucked and shucked of its oxygen by the body straggles back into the right atrium, the capacious gleaming lobby of the heart.

this tired blood, dusty veteran of an immense and exhausting journey, shuffles forward to and through a small circular door in the wall, a door with three symmetrical flaps: the tricuspid valve.

this circular door opens into another big room, the right ventricle; but at the very instant the right ventricle is filled to capacity with tired blood the entire ventricle contracts! slamming in on itself, and our tired heroes are sent flying through the pulmonary valve and thence into the pulmonary artery, which immediately branches, carrying blood to the right and left lungs, and there, in the joyous airy countries of the blood vessels of the lungs, your blood is given fresh clean joyous oxygen! gobs and slathers of it! o sweet and delicious air! as much as those heroic blood cells can hoist aboard their tiny cellular ships, and now they resume their endless journey, heading into the marshlands and swamps of the lungs, the capillary beds, which open in the small streams and creeks called venules, which are tributaries of the pulmonary veins. there are four of these magic pulmonary rivers carrying your necessary elixir back to the looming holy castle of the heart, which they will enter this time through the left atrium, whose job is to send it on its quest and voyage and journey to the vast and mysterious wilderness that is You, and to tell that tale of the journeys of your blood cells through the universe of you, would take a billion books, each alike, each utterly different.

- Brian Doyle, in The Wet Engine: Exploring the Mad Wild Miracle of the Heart, pp 16-17



here's the link, for ordering this book on amazon.ca: http://www.amazon.ca/Wet-Engine-Exploring-Miracle-Heart/dp/1557254052/ref=sr_1_1?ie=UTF8&s=books&qid=1257856172&sr=1-1

Wonky He(Art) Day '09

we celebrated wonky heart day (14 feb) with friends, and during the afternoon, we did some crafts with the kiddies. finger painting was a big hit, as you can see! gotta love that tongue sticking out, eh? how much do i love this kid of mine!

BEST PICS EVER!!!!!!!

thank-you so much to clint and shawn from renaissance studios for these amazing pics, and to geoff and staci (and chloe!) for hosting us for the afternoon. it was an amazing experience, and i'd LOVE to do this again.

clint is amazing. really. check out his website for more information, or if you just want to peruse his portfolio (and drool!). www.renaissancestudios.ca

if you want to order some prints of asher and sibs, just let me know. email/facebook me or leave a comment, and i'll send you the link and password so you can order what you want. :)

i'll be posting pics here from the Heart Picnic yesterday, but until i do, here's the link to the FB album i created. check it out (even if you're not on FB, you can still have a boo).

http://www.facebook.com/album.php?aid=49655&l=07ff4&id=593667512

it was a great day, so much fun. it really was a wonderful time with other families who know what it's like, this life...

it was wonderful to meet so many other heart families, and i can't wait till next year! ttys! :)

yes, i'm showing off, but it's an update, too. i'll post about cardio in the morning. it's not a fun post like this one, so it'll wait.

tada! i made this card up tonight, but alas, as pretty as it is, i must part with it tomorrow. i'm giving it away. which, when you think about it, is the very reason we make cards. i mean, really, what's the point of making a card if you don't give it away? why would you give a card to yourself? unless you're jan brady and trying to convince people you have a boyfriend, i can't think of any reason why someone would make a card and keep it for themselves. oh, wait. as i type this, i can see a card i made months ago, just for something to do, and i have yet to give it away. so, ok, forget i said anything about losers who keep their cards for themselves. ... so, um... moving along now...

i made this card for one of the doctors at the children's hospital. he very graciously met with me this afternoon to address some concerns i had, and went out of his way to accomodate me. he listened to my ideas, and in fact, really liked one (the idea about the list of asher's conditions). he's going to make sure we get a list of asher's conditions and put it in the front of his chart in emerg, so that regardless of who the attending physician is and how well we know them, the doc will know of all of my boy's "issues" and quirks, and any extra information that may not be known off the top of their heads (eg, irradiated blood products due to immunodeficiency, risk of drowning associated with reflux, the link between asher's reflux and his heart). in fact, dr a went even further, and surprised me by printing off the schedule of attending emerg docs for august and september. then he added, "the october schedule should be finalized by the end of the month. if you email me, i'll send it to you then." seriously! and so, other than a very embarassing "wardrobe malfunction," i think the meeting went very well and was very productive. and given that i seem to be the thorn in his flesh over the last 8 months or so, i'd like him to know how much i do appreciate his graciousness, time and efforts to placate an obnoxious mom who seems to like to complain. ah, well. at least i didn't drag him onto the news this time! lol

my gifts for the docs

i had to go in to london this morning to pick up my mom at the bus station. while i was in town, i had a couple errands i needed to run at the hospital. first, i had to return a seat asher's OT had loaned us back in march, so that was to Thames Valley Children's Centre, which is attached to the hospital. then, up to the nursery on the 7th floor, to give them some old sleepers that asher has outgrown. the sleepers they have there are so old, but so needed, and it's not like i'm going to be breeding again ever (God better not be reading this - lol), so i donated them there this morning. i had a lovely chat with some of the nurses there, too. asher's too old for the nursery anymore, so we never get to see them, so it was nice to catch up a bit. they were so good to us, and we all really got to know one another during all those admissions, so very many admissions....

anyway... the final errand was in cardiology. and apparently, yale and tanna were there this morning and we missed them. :( sorry i missed you, tanna, it would have been nice to see you again. ah, well, i have a theory that, given how "punky" these boys of ours like to be, we'll see each other soon enough. in the meantime, we should try to get together something. facebook me, and we can try to arrange something. :) now, back to my tale o' the day...

i had said goodbye to the docs on monday already, but it felt incomplete, because i hadn't had the chance to give them anything, and i had really wanted to give them each something, a little token of my thanks for all their work, care and yes, in a way, friendship, over the last 18 months. i talked to dr p first this morning; he came out and hugged me and we must have talked for, oh, about 10 or 15 minutes. mom lost count of the number of hugs. i'm really going to miss him; he's such a sweetheart. did you know, he still has the letter i wrote him back in december? (check asher's old blog if you'd like to read it for yourself.) he has kept it, and in fact, he says that it helped him grow as a person and a doctor. how touching is that?! he told me that he and buffo were talking about me just this morning. it seems there was a child in clinic whose condition is not severe ("not nearly like asher's"), but who still needs to be followed for a couple years (i'm assuming a hole that is closing nicely on its own, but they still need to watch it right now). anyway, dad must have been a busy guy, because he did not appreciate having to wait 20 minutes to see the docs, they should see him right now, and he was demanding to see them right away. and you know what they docs said to each other? they remembered all those times that asher was brought up from emerge for an echo, and there he was, with difficulty breathing, sats in the 60s, and colour was bluer than blue, and there we sat, waiting patiently, not complaining, but just waiting our turn. now, i'd like you all to pay attention to that, to how they remember me: for my patience. and yes, they were talking about me, so you can pick your jaw up off the floor now. lol so that was my chat with pepy.
then, dr buffo came back from the unit, and pepy must have told him that i had something for him. he came out and the first thing he said to me was, "i don't deserve this, you shouldn't have done this." i said, "are you kidding me?! how many times have you saved asher's life?! you deserve this!" now, let me explain a little bit about this man: very, very humble, and just under the surface, he's a teddy bear. and i mean, he truly does not believe that he deserves a gift, he really doesn't see himself that way. so, he was completely thrown that i would want to give him something, and honestly, you could tell he was trying hard not to cry. he's such a sweetie. and another thing you need to understand about him: he is really not into big emotional displays. i mean, when he bought me a coffee on monday, that was his way of saying good-bye. nothing big, no words, just coffee. but that's the way he is.
me, on the other hand, i needed to let both of them know how much i truly love and appreciate them. so, here's what i made for them. (for those non-paper-crafty types out there, these are "skinnys," a 3"x5" piece of art. the verse is one i have clung to for a long time with asher, and i have always wanted to share it with the docs, and have never had the chance.) so here we go:

this is the one i made for dr buffo (his first name starts with "I").

this is the one i made for dr p.

so, there you have it. my gifts for the docs. i know a bunch of parents from our facebook group wanted to go together and give them something, but i really felt i needed to do something on my own, given all the time i've spent with each of them. they're more than just doctors to me and asher, and we will miss them. but dr p insists that when we go out to manitoba, asher and i are to come to the hospital for a visit and they will both be very happy to see us.

and so, closure. the end of this chapter of asher's story is done, and a new one will start in september with the new docs. but i will always remember these two men. they have meant so much to me and asher over the last 18 months, and it's heartbreaking to see them go. but i wish them well, and hope to see them soon (but in winnipeg, not like, next week in emerge, or even worse, this weekend - buffo's on call this week! lol).

"What is a CHD?" by: Anissa Speight

You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked....."What's a CHD?"

I could quote terminology...
There are stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?
It's Lasix, aspirin, Captopril. ...
It's wondering... Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths, x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of call to his pediatrician. ..
(She knows me by name...I'm a mom on a mission)
It's winter's homebound... and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over... (I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected....
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching him chasing...a small butterfly...
It's the moment I realized...I' ve stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...We'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD.