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

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

in fact, i'm anticipating a loss.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

in case you're wondering...

heart life is hard sometimes.

really hard.

asher's new fave song :)

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

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

Asher. A Play in 3 Acts.

Act 1
Monday morning. it's early. I am not at my best or most compassionate, being half-asleep and not thrilled with being awakened by a tattling preschooler. hey, at least i'm honest here. 

Asher {runs to me, throws arms around me, weeping}: Mommy, blivey punched me on de head!

me: what were you doing when she did that?

Asher: nothing. she punched me.

me: are you sure? what were you doing right before she punched you?

Asher: i was hitting her. but den she punched me!!!

me: sorry, dude. you shouldn't have hit her. go say sorry and don't hit her again, do you hear me?

Act 2
Monday afternoon. i am in bed, trying to cuddle bram to sleep (and get some rest, myself).
Asher {running into room, burying head in hands on my bed}: Mommy, i need you! blivey punched me on de back. {weeps bitterly}
me: oh, no, sweetie, are you ok?
Asher: yeah, i ok. but i not like blivey anymore. i just like brammy. not blivey. she punched me.
me {calling pleasantly so as not to get blithe's defences up}: blithe, can you come here, please? just for a minute, hun.
Blithe {enters}: yes, mommy?
me: did you punch asher?
Blithe: yes. but he was throwing rocks at me. i told him to stop but he didn't, so i tried to stop him.
me: asher, were you throwing rocks?
Asher: yes. but blivey punched me!!
me: ok, first off, blithe, there is no punching. that is not the way to handle disagreements, so that's not ok. and asher, there is no throwing rocks in the house. ever. do i need to take the rock collection away?
Asher {sniffling}: no. but blivey punched me. i not like blive anymore.
me: alright, blithe, can you apologize to asher for punching him?
Blithe: asher, i'm sorry for punching you.
Asher: i forgive you.
Blithe: huggies? {they hug. Asher begins to walk away.}
me: Asher, you need to say sorry to Blithe now.
Asher: Blivey, i sorry for throwing rocks at you.
Blithe: i forgive you. {Asher begins to walk away.}
me: Asher, you need to give huggies now. you have to fix your relationship. {they hug, though Asher is standing as far from Blithe as he possibly can.}

Act 3

Tuesday morning. 7 am. nuff said. Asher is crying and climbing up the stairs. he enters my room, weeping like the world is coming to an end and fire and brimstone have destroyed his favourite stuffy. he buries his head on his arms on my bed.

Asher {between sobs}: mommy, dare no cheese!! i want cheese, and dare no cheese!!

**author's note: i'd like to point out that discipline is usually a little more involved than just apologies. but i haven't slept well in a couple weeks, i'm exhausted, and frankly, in this heat, close physical contact with another person (eg, a hug) is punishment enough. also, yes. the boys have a rock collection. all grey gravel-type rocks. what of it? haha

what an evening!!!

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

:)

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

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

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

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

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

and he was fine.

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

he was completely fine.

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

some sweetness.. and some sadness...

blithe wanted to take some pics tonight with my phone, so i let her. lol i thought i'd give you a peak at what down-time is like around here. :)

especially since... today, asher went for therapy again. and that breaks my heart.

as usual, he first went straight for the cars and threw them all into the sandtray... and proceeded to bury them. then he pointed out a generic tow-truck which he keeps telling us is "like Mater." after a while of burying the cars, KW asked asher what mater does.

"he hook cars up to his tail."

"which cars? any cars?"

"no, juss de broken ones."

"oh, ok. what does he do with them?"

"he take dem to de garage."

"to get fixed?"

no answer.

"do the broken cars get fixed at the garage?"

nod.

"does it hurt the cars when they're getting fixed?"

no answer.

"do they feel better when they're done getting fixed?"

no answer.

after a couple more minutes, KW decided to join in his game. so she picked up a red car with a missing wheel.

"help, mater, help! i'm broken! can you help me??"

"here come mater! he hook lightning [the red racecar. my bad, i should have specified.] up and take him."

"where is he taking lightning?"

"to de garage."

"what's going to happen there?"

no answer.

same game for several more cars. once she stopped playing that game, he buried all the cars that "mater" took to the garage.

do i need to explain any of this? i hope not. because it makes my heart go down to think about it.

so please hold asher in the Light over the next while. dealing with all this now is much better than letting it fester for years until it's overwhelming and he begins acting out... but seeing just how traumatized he was by the events of this spring is absolutely heartbreaking. so please pray for him.

also, since you're praying... please pray for asher's little heart buddy, Hannah, who has TGA (transposition of the great arteries). she is in the hospital right now, in st thomas. she is now doing better than she was the other day when she was admitted, but momma (Rachel) got some nerve-wracking news today, and they are now, basically, waiting for hannah to get really sick before they do anything. she will need to have her aortic arch ballooned or stented, and there is some narrowing in her pulmonary valve, and her MPA isn't doing so well, either. so it's "wait and see" for now. so please hold this family (dad is Nick) in the Light over the next little while. this is stressful, knowing there are a bunch of issues that need to be dealt with but that aren't being dealt with until "absolutely necessary." (for the record, they're not being reckless about this. there's a reason they're waiting, but i won't go into too much detail.) a stressful situation, this is; one that i know far too well. believe me, it sucks. so yeah, please pray for them. and i'll try to keep you posted. thanks.

"false" alarm

asher came home from emerg, so that's a good thing. :)

all the tests came back negative, other than some sugar in his urine. but they checked his blood sugar and that was fine, so we'll have to follow up with paeds in a few days for another urine sample, but other than that, everything was fine.

doc and i suspect we may have just picked up on something while it's still brewing, so we'll all be watching asher very closely over the next few days. this has happened before, that i picked up on something and we were sent home only to be admitted a couple days later with something weird. right now i suspect it might be another UTI or a migraine, but we'll have to wait and see. because really, it could also be nothing. which i would prefer, to be quite honest. it would be so nice if the little man could get a break for a while.

so please hold asher in the Light over the next few days.

and one more note: remember shawna and ethan, my friends from SickKids (in the list of kidlets at the end of the post, this is the second little guy named ethan; his momma shawna is a CHD warrior)? they have a big meeting at SickKids tomorrow. please hold them all in the Light. this will be a difficult meeting, potentially with a lot of tension and disagreement. what they all need is patience, grace, discernment, wisdom, humility, and to remember that they all want what is best for ethan, but that what he needs most is co-ordinated, compassionate and co-operative care. so please pray/cross your crossables/send good vibes/whatever you do for this meeting tomorrow. also, please remember shawna, as she has a lot on her plate right now. she's a strong woman, but some prayers never hurt anyone.

not so awesome

asher's with ed today, since my bathroom is being torn apart (literally, they're taking out the entire ceiling, including lath and support beams right now) and i don't want asher and bram (who has mild asthma) around while that's going on. but ed called a few minutes ago, and

something's not right with asher.

i've been seeing it, too, actually, but i've been playing chicken with him, waiting for whatever it is to show up. i just don't want to put him through another trip to emerg if it's not necessary. but it now really sounds like it's necessary. so here's the low-down:

• asher has lost his appetite. this is actually a huge sign with him, since, as i've said before, he's a bottomless pit. and he knows he needs to eat because he needs to gain weight. so for him to stop eating, especially his favourite foods, including ones he asks for specifically, this is major.
• he's been having difficulty swallowing thin liquids, especially water. quite often over the last couple weeks or so, he'll take a drink of water, then start coughing like it went down the wrong way. asher hasn't had difficulty swallowing in over a year now. and while something like this happening once or twice isn't normally a big deal, this has been happening at least a couple times a day.
• yesterday, he was hot to the touch. no real noticeable fever, his forehead was warm-ish yesterday, but his body was hot.
• he sweats. a lot. even when it's cool and not humid. the other day when it was so hot and humid outside, i cranked the a/c to make it a chilly 22C in the house. i was contemplating my hoodie; asher's hair was damp. indoors. because i don't take him out in the humidity. and all the windows were closed.
• he has been short of breath off and on for a couple days. like last night, while he was sitting on the bed listening to the bedtime stories.
• his activity level is markedly decreased.
• off and on, he's irritable. which, ok, is almost an assumed trait among heart kids, but not asher. happiest kid ever, he is. but not the last couple days. and the slightest thing will set him off, either into a near-rage or bursting into tears.
• he's been sleeping a lot. two naps yesterday: one on the way to church (a 20 minute drive, and he's usually wired because he loves sunday school), and one in the afternoon (he fell asleep on the way home from church, the slept for three more hours once home).
• today, he gagged. he just sat there, started coughing, then retching like he was about to vomit.
• when ed asked him if he hurt anywhere (expecting him to say that his chest hurt [because of reflux]) asher said that it "hurts beside my pacemaker." ed asked him to point to where it hurts, and asher pointed right at his pacer. ed touched the site, and it's warm. not quite hot, and he said it doesn't look inflamed or anything, but it's definitely warmer than the area around it.

so ed is taking asher in to emerg this afternoon. i told him to keep me posted, to call if he has any questions, and to definitely call me to tell me what they say.

when i know, you'll know.

meantime, please pray. thank-you.