as 2010 becomes 2011...

i'm thinking back over this past year.

and, um, yeah.

wow.

it began with an ironic twist. having told asher that i refused to bring in the new year in the hospital with him, i ended up bringing in the new year in the hospital... by myself. haha and thus began a(nother) gut-wrenchingly, heartbreakingly, freaxiating, spellbinding, awe-inspiring, breathtaking year.

in january, we finally tasted freedom. asher's vagus nerve had healed and had been eating on his own, sufficient to sustain him, for a couple months. he had even been taking his meds by mouth. and one day, in the middle of the month...

asher walked into the living room and said,

"mommy, i not need my tube anymore. you take it out now."

he sat so bravely as i pulled it out and covered up the site. he smiled and showed off the bandage to blithe and bram. and then he went to bed. and in the morning,

the hole had closed. and all that remains of that (looooooooong) period of asher's life, the only reminder of that struggle,

is a scar on his stomach. and the memories. and the feelings of relief and pride at having overcome such a huge struggle.

strong work, littlest man. {{hugs}}

and then came the spring.

the fontan. the chylothorax. the bradycardia. the fainting spells. the pacemaker. the infection. the fat-free diet. the uber high-fat diet. UTI. (i was going to link to everything here, but it's too many posts, so i'm just going to tell you to read the posts from march, april and may. click on the months here, if you're interested.)

ok, so the UTI and FTT and "butter and whipped cream diet" was at the end of may. and since then...

asher has been out of hospital.

asher started school!!!!!

asher learned to write his name.

asher has lived the life of a perfectly normal, stable, beautiful boy.

aka, tasmanian devil.

with a battery pack.

and so, as this year comes to an end and a new year begins, i hope and pray that our new-found normalcy and stability continues. but, if it doesn't, i know that we will continue to trust and rely on God to give us what we need to get through the challenges we face, whether they are health issues, financial issues, or other unforeseen issues that can arise in day-to-day living. and i hope and pray that you will also know a year of peace, joy, laughter, love, and beauty.

even if it's a wonky kind of beautiful.

happy new year, everyone!! thank-you so much for your love, support and prayers over the last year. let's all try to be safe and joyful this year, shall we?? :)

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. 

it's a sad day today.

my post this morning was inspired by a post on Adventures of a Funky Heart, written by Steve Catoe. the entire blog is devoted to CHD, providing tons of information about research, treatment, goals for the future.

Steve was born with tricuspid atresia. it's similar to HLHS, only on the other side of the heart. he had the BT shunt when he was very young (i forget what age), he had an early version of the fontan, he had a pacemaker. he survived sepsis, endocarditis, gout, CHF. he was one of the oldest CHD survivors.

i shared many times, both on this blog and on facebook, from his blog. the writing is incredible, and the information is invaluable. so many times, i commented on his posts, and he would reply, not only on the blog, but often directly to me, as well, usually making jokes or vowing to find the information i was seeking.

today we learned that steve, at the age of 44, passed away sometime late last night or early this morning.

to say he will be missed is an understatement. he was a relentless crusader for CHD. he was a cheerleader for heart warriors and their families. he was a fount of information. he was funny, intelligent, and encouraging.

please. if you know a heart warrior, hug them today. Steve lived a long time by CHD standards. not all CHDers have his kind of longevity. but i will end with a link to his post from the other day. it sums up his mission and goal.

A Cure for Heart Defects!

RIP, Funky Heart. our broken hearts are breaking. you will be missed.

66 years ago today...

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

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

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

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

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

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

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

here he is.

almost 4.

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

how AMAZING!!!!

can you believe that

on thursday...

4 days from today...

ASHER TURNS 4!!!!!!!

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

Asher is alive.

and

Asher is stable.

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

ALMOST 4!!!!!!!

in case you were wondering...

recently, a friend of mine asked a question on her facebook: what are the "extra" expenses that you incur when caring for a medically fragile child, especially the expenses that you never expected or never thought about until you had this child?

great question, and WOW! did she get a lot of responses.

i know that i, for one, always believed that our health care system in ontario was fabulous... at least in that it covers so much. then asher was diagnosed. sure, i have never had to pay a dime for his care in the hospital, which is good (for example, the prostaglandins that kept him alive before and in the initial period post-hybrid, yeah. that one med costs $1500 per dose. at two doses per day. for 11 days. not to mention, the cost of the bed in CCCU - just the bed space, not the meds, surgery, nurse, therapists, docs, equipment, but just the bed space - is $2500 per day. and just in that first admission, asher spent 18 days in CCCU. and there were a lot of other meds, several doctors, heart surgery, tests, an MRI, oxygen, bloodwork, etc etc etc etc etc... yeah, thank the good Lord for Tommy Douglas, because there is no way we could have afforded to keep asher alive for just one day in there). most of asher's meds were covered, either partially (80%) or entirely, that sort of thing. i've never had to pay a doctor or a surgeon (thank God!). i didn't need to pay for his first feeding pump, although i would have had to pay for the replacement pump were it not for a generous gift from some charity (i still don't know which one).

but it's those other expenses... the ones you never think about... those are the ones that destroy you financially. things like transportation, parking and gas for appointments. food for the parent who stays with the child during admissions. food for the rest of the family when i'm away or just plain exhausted at the end of a looooooooong day (because that has usually ended up being "convenience" foods or take-out). it's things like special tape and tubes and syringes and formula. its the "special diet" asher required to gain weight, things like ice cream and whipped cream and tons of cheese and butter and mcdonalds. the "stuff" you buy for your other children in an attempt to compensate for your absence or consuming focus on the other child. it's the phone bills, as you try to contact (and/or co-ordinate) doctors and therapists, the cell phone that you must have at all times in case of emergency, and long distance calls when you're in the hospital or clinic far away from home. it's the internet access, so you can educate yourself on your child's condition, and so you can stay in contact with family and friends while in the hospital (and that's expensive). it's utility bills incurred because of your child's condition: asher needs the house warm in the winter (21-23C is ideal for him), and very cool in the summer (our a/c is set at 18-20C in the summer); when asher was refluxing all the time, it added up to a lot of laundry; hydro to run the feeding pump 20 hours a day, etc.

and with the boys' birthdays coming up, i just don't have the money for the party they really want (at a bowling alley), so we're going to do something fun here. and it's gonna be uber cheap. and i want to give asher something awesome because, well, he has survived four years! but um, yeah. not gonna happen. and i want to give bram something awesome because, well, he's awesome for putting up with this life. but um, yeah. not gonna happen. i'll figure out something good, i'm sure, i always do, but in the meantime, there's the guilt and panic. which leads us to...

the non-financial issues: the stresses on relationships and friendships. the guilt of "ditching" the other kids when asher gets sick. the stress of money-less-ness. the chaos and unpredictability. the feelings of freaxia and of being overwhelmed... i could go on,

getting the idea?

and asher is one of the cheapest and least complicated medically-fragile children i know of.

seriously.

i want you to check out my friend's post. she wrote about this subject the other day (and did it better than i just did, i might add).

it will give you a clear picture of why SN/MF families struggle.

and so, since it's thanksgiving today in the states (asher has a lot of followers south of the border), and with the holiday season fast approaching, i'm asking you, gentle readers, to do something.

i know that a lot of people look for registered charities to give to at this time of year. if that's the case, i would ask that you donate to cardiovascular research at SickKids. if you decide to go that route, that is.

but i want to suggest something a little different, too. something you may not have considered. and of course, since i'm writing, it will involve a little story.

christmas for the kids and i is taken care of this year. i mean, i don't have to worry about anything. someone (whom i will not name, but rest assured this person is amazing) emailed me the other week to say that their family (including their parents) are giving us christmas this year. i don't have to buy a single gift for the kids. we will also be given groceries and gift cards, because they know that i'm low on funds (shocking, i know), so i won't need to worry about anything like that. honestly, just the thought of this gift is enough to make me cry. i'm tearing up right now, actually. this is such a wonderful gift for the kids and me, and even i cannot express how grateful i am for their generosity.

so here's where you come in:

we all know families with chronically ill and/or medically fragile and/or technology-dependent children. why not help out one of those families? you don't need to play Santa like my friend is doing. but you might think about buying a gift for each of their children (please remember the siblings). and/or something for the parents. or you might want to give something simple like grocery store gift cards. or get the oil changed in their vehicle. or rake their leaves/shovel the snow. offer to watch their other children while they go to an appointment. take a couple meals to the parent in the hospital with their child. whatever. just please, do something. you can't imagine how stressful this time of year can be for families in this situation (well, maybe you can after reading these posts... at least, i hope you can). please help someone this holiday season. even something small can make a huge difference in their lives.

Whatever you do for the least of these, you do for Me.     ~ Jesus

dude, you are such a dude!!!

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

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

and they both just kept walking.

because they're just. that. cool.

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.

the times, they are a-changing

well, asher is stable now. it has been over 5 months since his last admission, and even last month when he had that little "hiccup" he came out of it quickly and on one less med (leaving only aspirin!). so, yeah, he's stable now. kinda weird, no?

not that i'm complaining.

anyway, since asher is doing better now, i knew that it was time for some things to change around here. namely,

i can get a job.

so last week, i began sending out my resume. and on wednesday this week, i went out around town, handing out resumes and applying for jobs. i wasn't picky. so out i went.

the first place i went to, i asked if they were hiring, and lo and behold, they were! in fact, the woman asked me right then and there if i could come in for an interview the next morning.

that's right, folks, the first place i went to invited me back for an interview.

so i went for the interview the next morning. my first interview in about 9 years. and guess what!

i got the job!!!

so i went for my first day today. i'll admit, it was a bit weird. and i'm exhausted. but it was good. and i enjoyed it. yes, at the end of my shift i was very ready to go home. i haven't had an actual job since my contract with the Canada Games ended in august 2001, so this whole working thing will take some getting used to. but i'll manage with all that.

as for the kids... yeah, it's going to be an adjustment. for all of us. the hours at my new job aren't great, so there will be a lot of child care involved, but we'll get used to it, we'll adjust, and we'll get through. and we'll be ok. blithe prayed last night,

God, please bless mommy in her new job. please be with her and help her, and don't let them make her work too hard, because i don't want her to work too hard. please be with her on this journey. and please be with me and bram and asher on this journey, too.

yes, those are her words. we're all excited about this new turn in our journey, even though it's scary. but blithe knows... God is going through this with us, and we're not dealing with it on our own. so we'll be ok. i told the kids last night, "we'll get through. we'll adjust, and we'll do what we have to do." and bram agreed just as loudly, shrill-ly and enthusiastically as you would expect. asher just kept playing with chicky and elmo-y (who is not, in fact, the Elmo, but rather a yellow bunny). blithe said from her room, "yup! because that's what the heywood family does, right, mommy?"


anyway, i thought i would update you on the goings-on over here, even though they have nothing to do with asher's health. but it's all part of our journey as a family. if you wouldn't mind, please pray for us in this new part of our journey. it's unfamiliar territory we're treading here, so any prayers, good vibes, crossed crossables would be much appreciated.


and since you're praying/vibing/crossing...


don't forget to keep praying for shawna and her family. they need it.


also, little ella in australia, who had a stroke the other night. she is still in the hospital. and not only is it a hard time for her, it is really hard on her mom, shannon. she is heartbroken. please continue to pray for ella, shannon, and dad neil.

prayer requests

i'm rallying the troops tonight for a couple friends who need prayer.

Shawna
i've mentioned shawna before. and once again (or rather, still) she needs prayer. the complications in her pregnancy are getting more complicated. it's very scary. i won't go into detail, but it's terrifying. please pray for her, the baby, her husband, their seven children, and her mother. she has a couple appointments in toronto on thursday. please pray.

Ella
sweet little ella is a heart baby in australia. her mother, shannon, is on my facebook. ella had a stroke tonight/tomorrow morning (time differences). please pray for ella, shannon and her husband neil, the docs... ella had heart surgery on 26 october, everything went well, and she was home three days later. but now... yeah. please, please please pray for her.

i'll try to keep you posted. meanwhile, please continue to pray. thank-you.

and then, of course, God weighs in...

so, i'm sitting here, crying over the last post...

and there comes that still, small Voice.

when i shared at church in september, i talked about how God has been my Refuge throughout the "asher journey." and while i have been crying this morning about blithe and bram, i was reminded that

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.

and as i was thinking about that, another thing came back to me:

... 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.

so now i ask myself...

because this feels like one of those times "when it's dark and scary and it feels like God has forgotten us"...

if i look back, will i see that God was there?

so i'm looking back,

and yes. i can see that God was there.

He is there in blithe's compassion. He is there in bram and asher's friendship. He is there in their play. and yes, He's there in their arguments, because those are normal and therefore a gift. He is there during our storytimes and mealtimes. He is there when they hug me and tell me they love me. He is there when they hug each other and tell each other "i love you." He is there in the paid bills. He is in the pantry right now, in the form of beans and rice which we will have for supper. He was in blithe's room last night, while she and asher cuddled together all night. He is there in school with each of them right now, allowing them to learn and hang out with friends and enjoy their day. He is here with me right now, holding me and reminding me that, as i said in september,

i can look back - and i do look back - and i can see that, ok, God was there and there and there and there. ok. God was there, so He'll be here.

and then i continued,

and then i can, not look forward because i don't know, but i can look around at what's going on right now.

so, yeah, He didn't give me a crystal ball, and i still don't know what the future holds for my children (all of them), but i don't have to. God has a plan, God knows what He's doing. i don't have control, and i don't see the bigger picture, but that's ok, because God does. and as long as i trust Him, we'll be ok. we'll get through. maybe a little worse for wear, but on the other hand,

much more beautiful

because it's His Love and Beauty that shines in my kids right now. sure, it's a tough life we have in a lot of ways. but He never promised that life would be easy. but He always promises that He is with us throughout our lives. so yeah, i don't know what the future holds. but i know God is holding us now, and that's all i need to know. (although a little "heads up" would still be nice, i'm not gonna lie. {wink})

crystal balls, looking back, and the unanswerable questions that break my heart

a friend of mine has a blog about parenting a medically fragile child. her daughter's condition is different than asher's, but our journeys as mothers have often been very similar. and so her post today broke my heart. i'm not going to summarize it here; you can check it out for yourself, if you're interested. but i want to share my reactions to it. and please know, i don't always think about these "unanswerable questions"... in fact, i very rarely do. i know that i don't know the future and i'm ok with that. except today, it would seem. but it's part of the journey, so i'm sharing it.

when a family has a special needs or medically fragile child, suddenly, the entire family dynamic changes. in every imaginable way. we went from "ed, heather and the kids" to "asher and heather... and aren't there some siblings in there, too?" since 10 december, 2006, my life became centered around asher. asher became my identity. even my email addy is "wonkyheartmom" for crying out loud! his wonky heart became my wonky heart.

as for blithe and bram... sigh... (please bear with me in this post. my heart is breaking and i'm in tears, so if there's typos, it's because i can't see them.) it's like there are two sets of children in my life now. there's asher, and there's "the kids." and "the kids" are blithe and bram. yes. they're separate. when asher is in the hospital, or he's in emerg, or he's sick at home, i need help with "the kids." and that never means asher. that means blithe and bram. i mean, think about it: people ask me all the time how asher is doing. occasionally, they'll ask how i'm doing. rare is the person who asks about blithe and bram. and by "rare," i mean, i don't remember the last time someone asked about them. here's just two examples: a book is being written about life with a single ventricle kid, and ours is one of the families being "showcased" (for lack of a better term). the authors wanted to know about asher and his parents. the kids? mostly overlooked (because we did discuss them, but not in depth). and when i was asked to share at church about our journey, they asked about asher and me. again, there was no mention of blithe and bram, other than that i have three kids. i'm not blaming anyone here; it's natural to focus on asher, because his part in this is so obvious and dramatic. but still... i have two other kids whose stories don't get told.

and how have blithe and bram responded to all of this? generally speaking, they deal with all of this wonderfully. a SN/MF mother's dream. they are strong, joyful, resilient, compassionate. they just roll with it. "asher's in the hospital again? hooray! that means we get to spend time with nana!!" but then i wonder... you know... in the bigger picture...

blithe knows way too much about asher's condition. and i don't just mean that she knows about all the defects in his heart and she can tell you about the surgeries and she can find the aorta on a picture of a healthy heart (b/c there isn't one on the picture of asher's heart, and she knows that, too). i mean... she knows. she knows he's fragile. she knows that there is no medical explanation for why he's still here. she knows that he could pass very quickly, with very little warning. as for bram... he was so young when asher was born, to a large extent, this is the only kind of life he has ever known. the instability and unpredictability and stress and chaos and unknowing. up until the other week, he assumed that when he was asher's age, he had all kinds of scars on his torso, too.

and then there's the non-asher factors that go with this life, which are inextricably intertwined with the journey. asher's care is expensive. so um... yeah. i'm usually broke. and the kids know that. we don't get to buy new clothes very often, and when we do, they're not super cool. they're super cheap. we don't get to eat out very often. a full tank of gas is a luxury. the kids are aware of this. they don't get the cool toys that they see advertised on TV. nope, they have to make due with the same broken toys they've had for years, unless their dad buys them something (which is also nothing expensive). i mean, seriously, right now, asher needs a new pair of everyday shoes. and can i buy him a pair? nope. he's just gonna have to make do with these shoes that don't stay on his feet, because i just don't have the money for a new pair. as for groceries... the kids don't get lunchables or special treats, they don't get their favourite cookies. they get homemade cookies. and sandwiches on homemade bread (other than today, because my mother bought a loaf of bread for us on saturday)... i'm not trying to say we're starving or anything; they're fed, don't worry. but my point is this: the kids have to sacrifice a lot.

and it's not just sacrificing material things, either. as joyful and gracious as blithe and bram both are, there are those tell-tale markers of this life: they both struggle a bit with anxiety. granted, some of that is genetic. but it doesn't help that they have very little control or predictability in their lives. i'm working on getting some sort of routine now, but it's hard. we've been without it for so long, i feel like i have no idea how to do that anymore. but even developing a routine now is a huge change for them, and that causes them stress.

the point i'm trying to make is this: having asher in our lives has been very difficult. yes, it's wonderful, he's an amazing boy, and i love him more than i ever imagined i could ever love another person, and he is a gift and a blessing in innumerable ways. don't misunderstand me. but... sometimes...

and i'm just being honest here...

i ask myself, "if i could go back, knowing what i know now, what would i have done?" if i knew the cost to us as a family, if i knew how he would suffer, if i knew how blithe and bram would suffer...

would i change anything?

and again, i'm being honest here.

knowing what i know now, both about the condition/treatments/odds/etc and about the life itself,

i would still have made the same decision.

but i would not have brushed off some of the options quite so quickly. i would have at least entertained the thought for a few minutes, instead of snapping at the cardio. i would still have chosen the hybrid. i honestly would not change a single thing that i have done over the last nearly 4 years. but i would have given more thought to the impact of my decision on the other kids. again, i'm not saying that i would have chosen comfort care. i wouldn't have. it's not mine to decide how long another person lives, so i wouldn't have chosen that. i would still have chosen the hybrid, too, even though a couple complications along the way were directly because of that surgery.

and then there's the other unanswerable questions...

how will this life impact blithe and bram as they grow up? what kind of adults will they become? what kind of parents will they be? or will they even have children at all, too afraid to risk having a child like their brother? will they hate me and resent the life i chose for us? will they hate God for giving us this life? or will they grow up to love God? will they find comfort and refuge in Him and His promises? will they be compassionate toward other people? will they have learned to embrace today instead of fearing tomorrow or regretting yesterday? will they see God and Beauty and Light where others see darkness? or will they be consumed by fear and anxiety and mental illness?

if i'd had a crystal ball back in the day, even before asher came onto the scene, i think i would have made pretty much all the same decisions i've made anyway. and in the meantime, "all" i can do is to do my best, love them unconditionally and completely, and trust that God has plans for them, plans to prosper them and not to harm them, plans to give them hope and a future. it's just...

sometimes it would be nice to know ahead of time...

happy hallowe'en!!!

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

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

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

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

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

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

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

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

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

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

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

asher walked.

the whole way.

the whole time.

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

not because asher was tired.

yes, you read that right.

asher walked.

and ran.

and jumped.

and carried a pail full of candy etc.

the

whole

long

way.

for two hours.

and he wasn't even winded.

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

extraordinary, no?

i love it.

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

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

WHA-?!?!

today we went for our regularly-scheduled cardio appointment in london. and all in all, it was... um... interesting. but in a good way, don't worry. {wink}

first, we went in for the pacemaker check. no problems there. awesome.

then, the ECG. which asher did himself. he got the leads, attached the stickies, and put them all on his chest, legs and arms. sure, the tech told him where to put them, but he put them on. you know you spend a lot of time in hospitals when... haha

then the fellow came in. he's working toward becoming an adult cardiologist, but to become an adult cardio, you have to do a two-month rotation in paeds because, in the words of a fellow from a couple years ago, "some of these kids grow up, and we need to be prepared for when they do." frankly, i prefer buffo's explanation: "if neither of us [paeds cardios] is available, the adult docs can come and check him out, and they'll have some idea of what they're dealing with." a much more palatable explanation, if you ask me (and yes, i'm choosing to ignore the idea of all paeds cardios being unavailable). anyway, dr chew asked a bunch of questions and listened to some of my answers, and listened to asher. and before you ask, yes, he heard the murmur, but said that it wasn't very loud, so it's not too concerning. um, ok... anyhoo...

then he went and got dr w, our cardiologist. she came in and checked asher out, and said that he looks pretty good, and since HCT is for failure, she's comfortable with dr russell's decision to stop it. i told her that dr russell had said that, if he got too puffy without it, he might be one of those kids who needs it every other day, and that since asher, having missed two doses, is now getting pretty puffy, i'm going to do the every-other-day thing. so she looked at him and said, "yes, his eyes are looking a little puffy." and she didn't argue with my dosing decision, so i'm going ahead with it.

and let's see, what else?... hmm... i was sure there was something else to report about the appointment... what was it again?... oh, yes, i remember!

ASHER DOESN'T NEED TO GO BACK FOR SIX MONTHS!!!!!!!!

this, my friends, doesn't happen in asherland... at least not in cardio province. and yet... here we are!!!!! is anyone else doing a happy dance right now, or is it just me??

so we got back in april for an ECG, echo, pacemaker check, and holter. ugh, the holter. the bane of pacer-life. i hate holters. pain in the arse, they are. but, ah well. so it goes. i do what i have to do, and hey, it's not for six more months, so really, WHO CARES?!?!?!

after the appointment, i had to rush to make it to an appointment for myself. i've been having some health issues of my own lately (nothing too major, but needs to be dealt with... blerg). so we flew back to st thomas, i dropped asher off at his dad's, and raced to my appointment. i got there a few minutes late, and then waited for the doc to arrive. once she did, she was very nice, and well, i'm heading back to her office on tuesday for an ultrasound, bloodwork results, and hopefully, a plan.

so when you're praying next time (and whenever you think about it thereafter), please thank God that asher has improved so much in just a few days. sure, the murmur is still there, but cardio isn't concerned about it, so that's wonderful! and then, when you're done with that, please pray for me. i'll admit, i'm a little freaked out right now, so please pray that i'll have peace and that doc will have some answers for me. also, please continue for my friend shawna, who is having some pretty major health issues in and of themselves, but now she has also been diagnosed with some complications with her pregnancy. please, please pray for her and the baby. it's a scary situation, so please pray for her, the docs, her husband and their children, including the one on the way. thank-you.

the update you've all been waiting for

ok, so we went to cardio in toronto today. here's the low-down:

1. the echo showed nothing wrong, other than some minor backflow through the arch (some blood flowing the wrong way through his aortic arch, so... back toward the heart instead of out to the body). but it's only minor so she's not concerned. basically, the symptoms do not appear to be caused by his heart.
2. asher now weighs in at a whopping 14.6 kg (32 lbs). this is roughly a 16% gain over his weight in may. to give you some perspective, this would be proportionally the same as if i had gained approximately 30lbs in the same period (which, thankfully, i didn't). when i mentioned the weight gain to dr russell, she was very concerned. she recognizes that he needed to gain it, and he is now nicely proportioned between height and weight, but she said that we can now back off on the uber high fat diet, and just go with "a little higher fat than normal." because this kind of weight gain over a longer period of time will not be good for his heart.
3. asher's bloodwork showed that his liver is doing well, and his protein is good, so that's a good thing. but... the results showed that he's on the dry side (which he often is). so she stopped the HCT (the diurretic) for now, adding that if he begins to get really puffy, that he probably only needs it every other day instead of daily. we will discuss that with london cardio on thursday. i already know that nephro (who put him on it originally) is comfortable with stopping it, but he left it up to cardio. so it looks like everyone is on board with that.
4. i told her about asher's newest diagnosis (epilepsy) and all the seizures he has (average of 2-3 absence seizures a day). she was very concerned about this. she asked a lot of questions about why we had consulted neuro, so i told her about the seizures with fever. she told me that, if neuro wants to medicate asher for the seizures, that they should feel free to do that.
5. since any and all cardiac issues have been ruled out, she said that asher's paediatrician should now "feel free" to investigate "general paediatric issues." so, basically, we have ruled out the heart, but other than that, she doesn't know. but it's not heart.

basically, we covered a lot of ground in just a few minutes. and given that asher and i hit the road just after 4am, it was a very long day today. i am exhausted now. asher got to nap all the way home (no, i'm not bitter or anything). but thank-you to my wonderful friend (and asher's new girlfriend) diane for having lunch with us. definitely a good end to the appointment. 

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

the plan for tomorrow

the cardiology clinic at SickKids called this morning, and i now have the times for our appointment.

we have to be at bloodwork for 8am (it's usually very busy there, with a long wait, so we need to get there bright and early). after that, we're scheduled for an echo at 9. once that's done, we'll likely have an ECG and then we'll see dr russell.

all this means... asher and i will be hitting the road around 4am. (in case you're wondering why we wouldn't just stay in hamilton overnight... i'm weird. i love driving the 401 in the wee hours.)

i will update tomorrow with all the details. and yes, i'm packing a bag. just in case. last time we had one of these "emergency" appointments, we were admitted, and i believe it's because i hadn't packed anything. haha so we're warding off the "admission spirits" by coming prepared. haha (ok, i'm not actually a superstitious person. but our pattern has been that, when i don't pack anything, we get admitted. when i come prepared for a few days' stay, they send us home. every time. haha) so please pray for us, that we will travel safely, that the appointment will go smoothly, and that asher will show these symptoms. or, if you're more inclined, you can feel free to pray that asher be healed. but since i don't believe that that is the miracle God will do/is doing with asher, i will be praying that he has these symptoms tomorrow.

he actually seems to be getting worse as time goes on. he doesn't have the usual amount of energy, and hokey doodle is he ever irritable!!! (he's usually very laid back and happy, so this is a huge change and pretty difficult, stressful and heartbreaking to deal with.) he's also still puffy and pale. so please pray for us tomorrow.

and some other prayer requests:

please pray for my friend shawna. right now she is on her way to mt sinai hospital for the second day in a row with some very concerning symptoms. she has a lot of health problems at the moment, and what she's facing is terrifying. my heart is just breaking for her. so please pray for her, and for the doctors, and for her family (she has 7 children at home). things are not looking good on a number of fronts for her right now. frankly, i'm really scared for her. i'll keep you updated on her, as well.

a lovely little baby hannah, whose parents i met at SickKids in the spring. hannah has TGA and a couple other heart defects, and well, she's not doing very well at the moment. she has also been in and out of emerg over the last week or so, with some very concerning symptoms. they expect that she will need another surgery in the near future, but they're waiting for it to be absolutely urgent. it's a stressful, frustrating, freaxiating thing to have to watch your baby's health deteriorate before they operate, so please pray for rachel and nick (hannah's dad). please also pray pray pray for hannah.

i think that's about it for now.

can you believe, we actually got to see a couple DOCTORS this weekend!!

so, yesterday, asher wasn't doing so well again. after some humming and hawing (did i spell that right?) yesterday, i took him in to emerg in london.

they took us into Ambulatory Care (a rarity in asherland... lately we've been in J-bed. sometimes i think they should just put up a sign that says "asher's bed"... oh, wait, that would imply we're there all the time. so... scratch that). after going through asher's whole medical history with the med student (so it's a miracle we're home already, haha), dr helleman came over. i have to say, i really like her. first off, she loves asher. second, she's awesome. when asher comes in, she listens to my concerns, and she is very careful to investigate fully. and she's not afraid to consult cardio, if need be. (translation: she calls them every time she sees asher.)

during her assessment, she heard the murmur. it concerned her a bit, since she remembers distinctly not hearing it when she saw us in august. so she ordered a chest x-ray and ECG, both of which were "unremarkable." then she called the on-call cardiologist, who was, you may recall, dr rauch.

uh-oh, i thought. this could be weird. i hope he's cool.


turns out, he was. he told her that he wanted to see asher and do an echo today, so we were to meet him outside the clinic at noon.

cut to today. asher slept in and wasn't in the best of moods, but he was tolerable. so off we went to church. he was looking ok, and i wasn't too concerned about him, so i put him in his class, but told them what was going on and to call me if he did anything "asher-ish."

i didn't get called. phew!

after church, however, he was pretty tired. usually he's running all over the church after sunday school, because he has a great time and is so energized by the crafts and singing and playing with the other kids. today, however, he walked, following at a distance, and complaining because we were going too fast.

off we went to the hospital. (good to know: it only takes about 7 minutes to get from the church to the hospital. believe me, i was watching the clock.) we parked across the street, where parking is free. {wink} but that meant that we had to walk across the street. sigh. i should have known, asher cried and wanted to be carried the whole way. i compromised with him, and carried him in the intersections. (he's now up to 15.2 kg - 33 lbs... ish... i'm metric only with this kid, so i'm guessing at the conversion there - and i was in high heels, so there was no way i could carry him the whole way.) but wow! was he cranky!!! and puffy, actually. those eyes just aren't right. that has nothing to do with the fatigue and irritability, but it's worth noting, so there you go.

but we got into the hospital, and the kids automatically got themselves some hand sanitizer, and asher flipped out on me because he wanted to get his own without help. of course, he had trouble with that, and he got more frustrated, and then it was foamy, which he didn't like, so that was another tantrum.

we got to the clinic a couple minutes early, so the kids sat and chatted (asher complained but stopped crying, though he did snap at bram a couple times), and i pondered the interaction of hypoglycemia, heart function and seizures. sadly, i'm not even joking. i know, i'm a nerd. haha

dr rauch arrived and chatted with the kids for a couple minutes, introduced himself to all of them, and let us into the clinic. he took asher into the echo lab. asher co-operated and laid down on the bed. he wasn't thrilled, but he was calm. he wanted to help with the echo, and dr rauch joked that maybe when asher's a bit older, he can do his own echo and doc will have coffee with me. haha but the echo went well, asher was very patient, and doc explained to me everything that he was looking at. honestly, i don't remember the last time anyone ever did that, probably not since the first few post-hybrid echoes with pepy and buffo. so things look a lot different in there now.

at one point, i made some comment like, "i told dr welisch we wouldn't make it till our next appointment." and he said, "when are you here next?" "thursday," i told him. "but you're going to sick kids on tuesday, right?" "um... yes." now, here's what's interesting about that. our paeds didn't tell him that. i didn't tell him that. and i don't remember telling dr helleman about that last night. so... um... how does he know that?? my theory is that dr russell called and told him, since SickKids is much better at keeping london in the loop than london is at keeping SickKids in the loop. not that it really matters, i'm just saying...

anyway, when he was done, he told me what he thought. he couldn't see anything on the echo that could be causing all the symptoms. asher's liver seemed fine, and his urine last night showed nothing out of the ordinary (urea and creatinine were fine, no infection, and he's not leaking protein there). he also told me that sometimes fontans can leak protein through their gut. "ah, PLE," i said, "trust me, i'd be telling a cardiologist if asher had diarrhea." and since asher is pooping just fine (c'mon, you know you were wondering. haha), PLE is not a problem, either. "basically," quothe the doc, "i don't know. but we've eliminated some big things, so that's good."

so, a lot of time in the hospital to hear, "i don't know." sigh.

i'm now feeling much more relaxed going into our appointment in toronto on tuesday. even if dr russell doesn't find anything on the echo, i am confident that she will continue to investigate. she knows us both well enough by now to know that, when i say there's a problem... it means there's a problem.

the thing is... this is all so familiar. this has happened before, and london saw nothing on the echo, and dr russell saw nothing on the echo... but she believed me and admitted asher, and ended up doing a cath. and they found problems with function and pressures. nice.

but like i said, i'm feeling better about all this now. last night, i'll admit, i was pretty upset about all of this. i was scared and crying... yeah, it wasn't pretty. but i prayed some, and this afternoon, i'm feeling better. asher's not, mind you, but i am. so, at least i can help him through the next little while, and advocate effectively for him.

so there's the update for today. i'm hoping there won't be anything else to report until tuesday. talk to you later!

days like this... i wish there was no such thing as CHD

when i turned on my computer this afternoon, i saw the news on facebook.

little ewan, who was only two weeks old and was born with tetralogy of fallot, passed away last night.

if you want to check out his story, you can visit his blog. as for me, there's nothing i can say, other than...

CHD sucks.

please hug your children a little tighter tonight. asher's getting all the hugs he'll let me give him.

what a difference a pacemaker makes

saturday marked six months since asher was admitted to london's PCCU with severe bradycardia. when active (read: awake and playing a bit, since he wasn't nearly as energetic as usual), his heart rate was in the low 50s. last night was the half-anniversary of the scariest night in asher's life. his heart rate was sitting at 30, he was hands down the darkest shade of grey i'd ever seen him (only slightly lighter than charcoal - and i'm not exaggerating here at all), he was sweating like a pig so that he soaked through his bedding in just a couple minutes, and his nurse couldn't wake him up. there was a vial of atropine at his bedside and the intensivist was scared out of her mind and actually said, "this kid needs a pacemaker right now. get him out of my unit; i don't want him here." i was terrified that asher wouldn't wake up in the morning.

and it didn't improve much over the next week or so. he didn't get his little battery-pack for over a week, and that whole time, i was disintegrating emotionally. i must have cried every day. now, granted, i made some great friends, and the lunches with D were a very welcome (if surreal) distraction, but every time i looked at asher my heart broke. every. single. time.

and if i'm honest here, i have tears in my eyes as i write this post. it was probably the darkest time in asher's life. sure, the first admission, when he was diagnosed and had his hybrid... that was terrifying, too. but don't discount the beauty of shock and ignorance. when you have no idea what's going on, you don't know just how scared to be. but by now, i have some knowledge on my side. i know what it looks like when a heart is failing and shutting down. and by now, i know asher, and i know what we would have lost if his heart got the better of him.

and now, here we are, six months later. as i type this post, asher is at school, playing with his friends, playing on the computer, singing songs and learning and... well, living. i'll admit, in april, i would have told you that this likely wouldn't happen. and yet... it's happening!!!! asher is alive!!!!

so i want to take this opportunity to thank all of you, our wonderful readers, for all your prayers and thoughts and love. you have given us both so much strength and courage to get through all the horror, and the grace and joy to fully embrace the normalcy. thank-you so much. we couldn't do this without you.

the mind of a 3-year-old

for his after-school snack today, asher had apple slices. as i type this, the apple slices are on the floor.

ME: asher, can you please pick the apple slices off the floor?

ASHER: but dat not me. day do dat demselves.

mhm. the apple slices jumped out of the baggie and landed all over the floor... by themselves. yup.

i think some EEG leads would be helpful to have around the house [wink]

so, asher went for an EEG this afternoon. it was interesting.

i picked asher up from school. he'd had a great morning! he went to the gym with another little boy and they played with frizbees, and asher LOVED that! he was talking all afternoon, "i hab da red fizbee, mommy. also, da udder liddle boy hab a pink one. and we frew dem around. it was fun, mommy!" i have to say, i'm glad asher is still getting some phys ed-type activity. as much as he loves computers, i'd hate to think that they would simply replace phys ed with a desktop. so he got to run around and play in the gym with another child, and that was awesome. he also made a nice little craft this morning with yellow cardstock (that's my boy!) and some scissors (fine motor skills extraordinaire!) and glued the pieces together to make an "airplane" for himself and a "car" for me. as you might expect from a 3 yo, they looked nothing like an airplane or a car, but he was excited about his craft. he's doing so well in school, it's just wonderful to see how much he's maturing and growing up after even a couple weeks in school. honestly, it makes my heart go up. waaaaaay up!

and then we went to the hospital for the EEG. as he was sitting in his seat behind me in the truck, i checked in the mirror and he was staring out the window. so i reached back to tickle his leg (just ignore the bad driving habits and keep moving along in the story, people, there's nothing to see here). and his response? he stared out the window.  so i tickled him again. still staring. so i called his name. still staring. after several more seconds, he started playing with his pacer protector.

and that, dear reader, is how one describes an absence seizure, aka "petit mal" seizure.

now, i have to be honest here. i'm having trouble with this diagnosis. maybe it's that it's still so new, maybe it's that i don't know enough, maybe it's how powerless i feel when he has these seizures. and he's having so many. i've been noticing at least 2-3 a day now. and then that makes me wonder... how long has this actually been going on? i never really paid attention to it before, because i never knew to watch for it. but now that i recognize it, it happens so often... and there's nothing i can do about. i just have to roll with it, document it, watch for things like eye twitching, make sure he doesn't drown in the tub, but other than that, there's nothing i can do. i'll get past this, i know i will. i had the same fears in the early days, when asher was newly-diagnosed with HLHS. but i adapted and learned and i no longer feel helpless and guilty and powerless and afraid when it comes to asher's heart. but this is his brain, we're talking about. i guess i've always figured that the heart and brain are the two organs you want healthy, for some reason. not that the others aren't important, too, but i think i've always taken comfort in knowing, sure, his heart's pretty wonky, but hey, at least his brain is ok.

and now, his brain is not ok.

again, i will get past this. i know it's not his major health issue, so i take some comfort in that. meanwhile, please pray for me a bit that i can get past this.

ok, so on to the EEG. we arrived at the hospital and and asher handed the clerk his cards and we were registered. asher was pretty disappointed that they didn't have stickers to put on his hospital card. (he likes to collect stickers on there, and he only has one right now. his old card, which one clinic kept, had about seven!) and off we traipsed to the lab.

they took us straight in, and asher was delighted to see all the nemo and fish stickers on the wall. his faves were Dory and the dolphins jumping out of the "water." while the lady put all the leads (23 of them!!) on his head, he was quite the little chatterbox. it was so cute! he told her all about school, blivey and brammy, and smokey and the kittens. the tech asked me at one point, "is he always this well behaved?" "he's used to tests," i answered. and then the test started.

now, for those of you who have never experienced an EEG, you have to be very still and quiet. for the whole test. which should take about 40 minutes. and knowing asher and his energy levels, i was afraid we'd be there for hours. well, guess what!! the test took about 40 minutes!! he had to lie still, which he did, for the most part. we only had to tell him three times to stop moving and close his eyes, which surprised me... and didn't surprise me (see "he's used to tests" comment above). but his favourite part of the whole test was the strobe light. he was almost laughing out loud during that part! but he didn't, and it went well.

so now we just wait for the results. and a note about the results: if it's positive, it's positive, and they will know what's going on in that little brain of his. if, however, the results are negative... yeah, that means nothing. haha apparently, there's a 50% chance of a false negative with an EEG. the neuro told me about a patient of his with severe epilepsy, and it took eight (count 'em!) EEGs for anything to show up, even though they knew she was having seizures frequently. gosh, isn't that reassuring. haha know what's nice? tests with actual answers. i like those. they please me, on some weird level i don't fully understand. ok, i lie. i know exactly why i like answers. ready? here's why: because they're answers. and then we know what we're dealing with, and i can read up and watch for symptoms or whatever, and we can do something. ok, mostly it's because i get to learn new stuff. i like that. it's just so interesting!! sure, it's a bit horrifying and nauseating, but it's interesting, too. (which really just confirms what i've been saying about myself all along: i'm a nerd.)

so now, given how calm and quiet asher was during the test... do you think they'd give me some EEG leads - just the leads, not the whole, um, test-doing-contraption-thingy (where's a dictionary/thesaurus when i need one?!) - to have at home? you know, for when asher's all wound up and running around like the tasmanian devil/energizer bunny that he is... it might buy me 40 minutes of quiet... sigh... a mom can dream, right?

it's asher's first FULL day of school today...

so, of course, i'm blogging about it. (did you expect me to not post here about this?)

asher has been doing very well in school. he is loving every minute of it... or... um... almost every minute of it.

on his second day, he was sad and crying in the morning, so his EA took him over to see bram, who gave him a big hug and made asher happy. i loved to hear about how supportive my older kidley-winks are with their little brother. it makes my heart go up, it really does.

so this morning, i was getting the kids' lunches ready, and asher came into the kitchen. "what are you doing, mommy?" "i'm making your lunches for school today, sweetie." to which he replied, and i quote,

"I NOT WANT GO TO SCHOOL, MOMMY!!!!!"

"what? what's wrong? don't you like school, hun?"

"no. i not like school anymore."

"how come?

"because day get mad at me."

"you mean when you wanted to play on the computer and they said 'no'?"

"yes. day get mad at me."

now, let me explain this. on friday morning last week, mrs b introduced the new centres that hadn't been opened yet. one of those centres was the computer. asher, it would seem, wanted to play on the computer right away. they told him that he would have to wait for his turn. anyway, this was not what asher wanted to hear, and well, in true asher-doesn't-know-crying-is-bad-for-him form, he got upset. and so, today, he not want go to school because day get mad at him. {rolls eyes} i tried to tell him that he will get a turn, and he'll be spending a lot of time on the computer, probably starting this week, but nope. he not like school anymore.

now, all that being said, i got him dressed without incident this morning, and we piled into the truck and when i dropped the kids off at school, he grabbed his backpack and ran after blithe and bram, who were taking him to the kindergarten doors. no complaints, no "i not want go to school," nothing. just smiles and running off to his class.

now, you may notice in that last paragraph that i drove the kids to school. "but, heather," i hear you asking, "why isn't asher going on the bus? were you running late this morning?" haha you'd think so, but no. i got up after only 4 hits on the snooze button (roughly 7:40), and everything was running smoothly and on time. so that was not the issue... today. (why, no, i love mornings. why do you ask?)

asher had been taking the bus to school. and then the school called one afternoon last week, and he will need to be on a special bus. he will have a car seat and get picked up and dropped off right at home, and there will be someone on the bus who can watch for asher's, well, asher-ness. it's just that the regular school bus isn't a safe place for him. and frankly, that's fine with asher. because he "not like da bus. it scary. dare too many people dare." so i'm hopeful that the change to a different busing situation will be smooth and asher will adjust well.

now, on a different note, asher decided on friday that he wanted to play on the computer. i set him up with his favourite site, and he said, "mommy, i not need help." and you know what? he didn't!!! he just played away on the laptop for almost an hour, perfectly content, clicking away all on his own. he did amazingly well. as he sat on my lap, i watched in amazement as he handled the somewhat-tricky finger-pad-thingy and clicking the button there, making pictures, playing songs, putting animals in the appropriate habitats... it was truly incredible. i was so impressed and proud.

maybe it's not such an impossible dream that he'll be the next bill gates or steve jobs... and i'll now add to that dream that asher will keep me in the lifestyle to which i would like to become accustomed. ;)

"mommy, you make percy beautiful for me?"

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

asher approved of my work.

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! 

the second intake meeting... after, you'll note, they have... uh... taken asher in...?? somehow that doesn't sound right...

well, the meeting happened this morning at 9am. there was the principal and the VP, the primary LST (learning support teacher for primary grades), the special education director-type from the board, asher's teacher, asher's EA, asher's paediatrician, asher's dad, me, and asher (though his contribution was mainly entertainment and some confusion, since how could we be possibly describing this child?? he looks so normal!!). here's how it went down:

we started with a run-down of his medical issues, and dr b went system by system, starting with heart. and yes, we got some of those reactions when she said, "basically, he has half a heart." you know the reactions i mean: the face of "shock." is it weird that they amuse me sometimes? (maybe i'm just too used to that phrase.) so that took a while, as you can imagine. and so the plan for the heart/pacemaker issues are this:

• asher will wear his protective vest at all times. period. because you never know.
• call mom.

we had to fill everyone in on a few things. the LST  asked, "how will we know that he's going to faint? what sort of things should we watch for?" to which dr b and i replied, "you won't know. he'll just faint. but as soon as he's horizontal he'll wake up. it will happen when he's playing normally. and he'll just faint." you can imagine the looks we got for that answer. we also mentioned that asher is fine if he's pink or pale, and that he shouldn't turn blue anymore, so if he does, to call me, and that if he turns even faintly grey, call me immediately. don't even question; just call me. grey = bad.

when it comes to asher's immune system, it is slightly deficient (meaning, he lacks the generals that lead the troops into battle), but that he doesn't seem overly bothered by it. he hasn't had all the nasty infections that you would expect from a child with an immune deficiency, but... if there is any outbreak of anything in the school, let me know immediately, because even something simple can cause huge problems for asher.

asher's UTI habit came up, as well. the instructions for that were to let me know at the end of the day if he's been peeing more. we will have a communications book that travels with him between home and school, so they can fill me in.

but since we're on the subject of peeing... i reminded them that he is not fully potty-trained. he's poop trained, but he is still in pull-ups. this is due to the fact that a child on diurretics, who has always been on diurretics, is, well, difficult to potty train. he simply doesn't know what it is like to "have to" pee. he just pees. a lot. (oh, wow, asher's gonna kill me for this paragraph when he's older. LOL)

then we discussed the bus. ah, the school bus, bastion of normalcy. they didn't question the decision to send him on the bus, but they will make sure that he gets a medical tag to put on his backpack, so that the driver will know that he has some issues. the principal is working on getting that from the school bus company as soon as possible.

but i was delighted to hear that yesterday morning, the principal (mrs h) met asher as he arrived, and that he tried to jump off the bus. he was just that excited to arrive at school! if you know him at all, you likely aren't at all surprised to read that. and frankly, neither was i. he was sooooo excited to be a big boy going to school and riding the bus. honestly, if she had told me that asher simply climbed off, i would have been surprised. he's just not that mellow. haha

the other issue with bussing is this: when asher arrives at school, blithe will hand him off to his EA who will bring him into the school immediately. he will also have a space for his bag, coat, etc separate from the other kids. this is to avoid bumps, since that risk is highest (for everyone, actually) at in and out times. so asher will be safer in his own little area. and if the bus is late arriving, he and the EA will simply wait in the hall or outside until the rest of the kids are out of the cloakroom. also, at the end of the day, the other students will go and get ready for home, and then it's asher's turn, once they're outside. again, the risk of getting bumped is too high at this time for him to be safe, so he'll get a few extra minutes of playtime at the end of the day.

he will be allowed outside, but only with a few other kids at most. he will absolutely not be allowed onto the playground equipment (due to risk of bumps and seizures). it is simply too dangerous for him. but he is allowed to ride a bike in the kindergarten play area, so long as there is an adult and very few other children (if any). he will be staying indoors for most recesses.

as for phys ed... well, that's not an issue. because he won't be doing it. he will go into the computer lab when the rest of his class goes to gym. i'll admit, this is one of the areas that upsets me the most. he's so active, and he just sooooo wants to be normal because he is normal, and yet he won't get to participate in gym with the other kids. that's tough for me, but i know it's for his safety, so i'll accept it. i understand the reasoning, and i'm glad they're taking this seriously and making sure that he is safe. it's just that phys ed is too dangerous for him. those little kids can be too unpredictable, and so is asher. so it's a potentially bad combination. so there you have it. and on the plus side of this, asher is going to be the most computer-literate 3-year-old ever. (maybe he'll grow up and  become the next bill gates or something. that would be awesome.)

we addressed the issues of his seizures, as well. these can be anything from a tonic clonic (sp?) seizure, with the shaking etc, to an absent seizure, when he just goes blank and unresponsive. this is one of the things that makes the playground so risky: if he has one of these seizures while climbing, he'll let go and fall and then... badness will ensue. i will be contacted if/when he seizes.

we discussed his migraines, as well, with this caveat: his migraines just start. there's no build-up. he'll be fine, and then he won't be. he will suddenly become lethargic, irritable, grey, confused and have a very high fever, which may or may not include seizures. so watch out for that, and call me if/when it happens. and if/when it happens, they are to give him a whopping dose of advil. and then call me.

we made sure they were very aware that asher gets very sick very fast. we laughed when i told them his nickname, "asher crasher." but i told him that he's earned it. he'll be fine one minute, and the next, he's at death's door. this is how he gets sick, regardless of what the problem is. we also told him about his "sick" language: he'll say something if he's dizzy, so there shouldn't be too much confusion there. but i also said,

"the other thing you need to pay attention to is if he says he's feeling 'much better.' he knows when he's sick, and he knows that means he'll go to the hospital. and he doesn't want to go to the hospital. so he says 'i feel much better' when he's sick. and if he tells you that, call me right away." they seemed surprised by that little nugget, but since we moved from that on to PTSD, they understood quickly.

and so, i move on to PTSD. they need to be aware that he may have some difficulty adjusting at times, that he may get very upset and just want mommy or daddy. at those times, call the appropriate parent. he is in play therapy to deal with that, and when he's in therapy and is handed medical-looking toys, he buries them in the sand. so in his classroom, there will be no hospital centres or doctor kits or anything. we want to make sure he has a happy time in school, so we're just going to avoid those triggers completely.

his teachers are going to talk to the students in his class in the simplest, non-discriminatory terms. they will tell the students that asher may need some help from time to time, and that if something happens like he falls down, they need to tell a teacher right away. if they do this, they will be helping asher. they won't be going into any real detail, but for example, when asher faints, it happens so quickly that a teacher simply might not see. but the other kids will see it, and this is how they can help asher and be a good friend to him.

asher will also be assessed by OT due to his oral sensitivities/needs, and PT to see if there are any activities the EA can do with him in order to help with gross motor development in place of phys ed. the wait for these assessment is relatively short, so this will happen fairly soon.

all in all, it was a good meeting. very productive, and we're now all on the same page. we filled out the forms for him, so that they can give him meds and post his info for the teachers and in the teachers' books, so everyone will know him. asher also got his picture taken today, so all the staff will know what he looks like. generally, i'm happy with the plan. again, the plan to keep him out of phys ed is mildly upsetting to me, but i understand the reasoning and i'd rather have him safe than happy, if those are my choices. our goal is for asher to have a safe and happy time in school, and i think we have a plan in place that can give him that. i'm pleased with all of this, i really am. i can't wait for him to go back tomorrow. he's going to have a wonderful time in school this year!