oh, anne, you're gonna weep! :)

so, asher's obsessed with the sandbox, the rain barrel, the big ball... basically, all things backyard, all things dirty, all things loved by boys. in fact, there have been times that he's woken up at 4am and gotten really ticked off with my mom and me because we wouldn't let him outside to play with "to-ees."

well, now he's learned the magical word... "outside." and as he was going in and out of the house this afternoon, he closed the door behind himself and said, "close the door."

and now for something completely different....

so this morning i made smoothies for breakfast. asher wanted a little bit, so i poured some into a cup for him.

after the kids left for school, i went upstairs to get dressed. and asher followed me, cup in hand. i wouldn't let him on the bed with me, so he sat on the floor, babbling away about his "mnoonlie" (that's how he says "smoothie"). and then he took off. i could hear him going down the stairs, still talking about his mnoonlie. and i could hear him pattering about the downstairs still talking about his mnoonlie. he came back upstairs, still babbling about that mnoonlie. he ran into my room and said,

"towels.... clean up..... mnoonlie."

at that point, i looked at the floor, and there was a dollop of smoothie on my floor. asher had spilled some, and went all the way downstairs to the kitchen, brought the towels upstairs, and then cleaned up his mess all by himself. how proud am i?!

only anne really needs to read this, but the rest of you can feel free, as well.

"eh-oh cookie, kees." (which means, Elmo cookie, please.)

he just said that. just like that. he wanted an elmo cookie, and he asked. and politely, too!

"Glife! Bam! teezza!" or, A Boy and His Temper, or Not NPO Anymore (albeit unofficially - wink wink)

... which, translated into actual-speak (as opposed to toddler-speak), is "Blithe! Bram! Pizza!"

so, in case you hadn't yet figured it out, we had pizza for supper tonight. asher's choice. seriously! mom and i were discussing our options (basically just "pizza? or what else is there?"). asher jumped on the "teezza" idea. he even helped nana get it ready! (ok, it was frozen, so he cheered her on). mind you, i don't think he has yet grasped to concept of cooking time. he screamed and wailed the whole time it was in the oven, as though we were depriving him of food. nice, eh?

and let's count the number of things wrong with the previous paragraph. first, we're letting a toddler dictate the menu. next, we're letting a kid with terrible circulation help take food from the freezer. i don't like taking him past the freezer section at the grocery store without a winter coat, mitts and a hat! but there he was tonight. finally, he spent 15 minutes or so screaming (you all remember my dischipline dilemma, right?). that's some great parenting there, let me tell you. lol
anyhoo... eventually, and none too soon for asher, it was time to eat. we put asher in his high chair while i sliced up the pizza. he passed the time calling his sister and brother to the table, and yelling at me to hurry up. yeah, he's a delight today.

i gave him a piece. it's on his plate. now, of course, he's ticked because he has food in front of him and we haven't prayed yet, so he can't eat. (it's almost pavlovian, really.) you can't tell from the pic, but he's the only one at the table.

by now the kids have said grace, and we're digging in. (btw, asher during grace is adorable! he closes his eyes and sort of mumbles along and says "ahmeh" at the end. mom and i are godless heathens, however, because we inevitably just watch him and giggle quietly.)

"don't bother me. i'm eating." 'nuff said.

YAY ASHER!!!! YOU'RE 2!!!!!!!!!!!!!!!!

so, for those of you who are not keeping track (and i can't imagine anyone who follows this blog not keeping track!),

TODAY IS ASHER'S 2ND BIRTHDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

i have way too many pics to post here, so i'm including in this post a link to the facebook album i created for this event. the pics are wonderful.

it was the best birthday i've celebrated in, oh, i don't know, a year! only, i think this one was better. no big party, just some friends, some family, and oh, yes, my friends,

SOME CAKE!!!!!

there's a reason i've labeled this post "real honest to goodness normalcy."

(and yes, i'm aware i haven't posted here recently. there's a bunch of reasons for that. but i'm saving that for another post, and in it i will regale you with tales of my battle with CCAC, who WANTED TO CUT OUR SERVICES TO ONLY NIGHT NURSING!! but again, that's a post for another day. today, we celebrate asher. so, here's the link. enjoy!)

oh, and anne: when i brought the cake out and put it on the table, asher took one look at it and said, clear as day, "cake." that's my wordy boy! :)

the facebook link:
http://www.facebook.com/album.php?aid=64789&l=d2f94&id=593667512

well, anne, you asked for words... and i'm trying to avoid doing the dishes... so, here you go! lol

so, i'm organizing the dishes so i can get them washed (we're out of spoons and bowls for the kids), and asher sauntered into the bathroom. he walked over to the counter and spied a toy that's a pig on one side and a cow on the other. he climbed up onto the stool, and i heard...

"MOM! MOMMA! MOM! oink-a-ink... kees... ka-oink... kees... kees?" (translation: oink oink, please, oinkoink, please. please?)

so i gave it to him, and he said...

"ah-come. oink oink..[turns toy around to see cow] moomoo... mooooo."

yeah, he says "you're welcome" instead of "thank-you." he'll figure it out eventually. i think bram did the same thing, so i'm not worried.

now i'm off to do dishes. oh joy, oh bliss.

i was so touched by this...

blithe had a hard time at school today. once we got home, she broke down and cried on the kitchen floor. i scooped her up and held her. her heart was broken, and it hurt.

i held her as she cried. then something wonderful happened. just typing this, i have tears in my eyes. (get a tissue, then come back and finish reading... got one? ok.)

asher came up to blithe, put his hand on her arm, and leaned over to hug her. he held her for a moment, then stood up and signed "sorry." it was breaking his heart to see his big sister so upset. then, he pointed and said "tin" ("train"), and looked back at blithe and said "glithe" ("blithe"), then pointed back at the train and said "tin" and back at blithe, "glithe." then he took her hand in his and led her over to the train, where he played with her.

with everything he's been through, he has learned compassion and mercy. what a special gift for all of us, to see this beauty in my boy. and tonight, what a special gift for blithe.

i don't care what any doctors tell me, asher has the biggest heart of anyone i know.

pictures of homelife...

some friends (ok, one of asher's nurses and her husband) popped over this afternoon and brought gifts for the kids. blithe got a Happy Feet DVD and a doll, asher was given an airport set (toy helicopter - "hacot" - and plane, some cars, an airfield, some luggage and signage), and bram was given a fantastic train set. it's absolutely gorgeous! arturo picked it up somewhere but it didn't work, so he fixed it up, including a new electrical system, and gave it to bram. isn't that lovely?!

so, tonight, as i was making supper, the kids were all in the kitchen, playing with each other. and playing nicely! it is lovely to hear them all play, including the way they include asher in the play. it was heartwarming. so, i thought i would share it with you.


now, there's a bit of a story behind this next pic.

back in the spring, during one of our many visits to london cardio, i was chatting with a certain cardiologist from mexico. he noticed that asher was not particularly fond of sharing the thomas trains with other kids, and refused to come when called. one of us said that asher's spoiled, to which i replied, "but how do you discipline a kid who'll have a heart attack if he cries too hard?!" i expected the usual, "mom, you're paranoid." instead i got, "yeah, that's a problem." wha-?! well, this pic is for you, buffo, and for anyone else who thinks asher gets away with murder.
this was time-out number one tonight. he got another one a couple minutes later when he refused to make things right with nana. apparently, she had asked him to do something, which he refused to do. and by "refused" i mean that he yelled "NO!" repeatedly, then grabbed something of hers off the table and threw it across the room. yeah, time out for asher. and after the time out, after apologizing, he was asked repeatedly to pick up whatever it was and put it back, to which he replied "NO!" so... time out #2!

of course, now he's sitting blithely at the table in his high chair, singing Bob the Builder ("Bah Bih hahadooha kakaka!," roughly translated, but it's the exact rhythm, key, notes, everything!) and waiting for pizza. not that he'll eat any, all you medi-types reading this, but still... he's waiting for supper. the only person who can't eat is the only person at the table. ironic, n'est-ce pas? lol

btw, i didn't end up taking asher in to emerg yet. i decided to let him sleep overnight, which he did for the most part. right now i'm just keeping a close eye on him, but he'll be seeing someone medical in the next few days about those ears, rest assured.

anyway, have a great weekend, everyone! :)

yup, he can talk... now if only he'd stop once in a while!

i'm not kidding, he even talks with the soother still in his mouth! now, i'll admit i'm a bit of a newbie to the world of soothers, given that the other kids prefered me over anything else and both flat-out refused soothers (ok, i didn't even offer one to blithe, but we all know what bram's like... total mama's boy, he only wanted me, and if he couldn't have me, nothing else would do). but really, i would have assumed that the whole point of the soother is to stop noise from coming from the child's mouth. or am i wrong here? have i been misinformed somewhere along the way?

anyhoo... asher talks. a lot. like, all day. non-stop. suddenly, i'm the quiet one in the house! stop laughing, it's true. you doubt? allow me to illustrate:

today, i was getting asher dressed for his appointment with dr b (asher's fine, just an ear infection - another first in the family! - and that's causing his heart to work harder than usual, which is causing all the cardiac-looking symptoms). i went to put on his socks. i put on the first one. no biggie. then he picked up the second one.

me: where does that go?
asher: sock... toes.

look at that, folks! an (almost) sentence! how do you like them apples, eh?! :)

something normal... and it was wonderful!

i took the kids to Springwater for a nature walk yesterday. it was wonderful. the weather was perfect for a hike: cool, with no rain in the woods, not too bright, not too dark, absolutely perfect!

i wore asher in the sling yesterday, too. i haven't been able to do that with him. i think he only ever went in the sling once, and he threw up all over me (obviously before we had his reflux under control!). so this whole time, he's been in the stroller. but let me tell you, it's not easy taking a stroller for a hike. so, i decided to wear him, and then he could walk for a bit, too.

it was nice to wear him. i wore the other kids so much, and i've been feeling a bit like i've been missing out a bit. i just haven't had nearly as much "cuddle time" with asher as i'd have liked. but you know what? he loved the sling!!! he spent the whole time chatting with me, pointing out things he saw ("tee," "chi-uk" [chipmunk, for those unversed in toddler-with-throat-issues-speak], "eef," "bam bife" [bram and blithe, according to asher], and of course, "mummum" which is what he calls me... awww!), giving me hugs and winks and loving every bit of "mummum" time. and i wasn't complaining, either! :) it all felt so normal, so simple, so perfect.

a couple times he wanted down from the sling, so i obliged. you can see for yourself how much he enjoyed that. [dr bertoldi, stop reading for a minute... just skip ahead a couple sentences... you don't need to read this next bit. i'll tell you when to start reading again.] but he was so short of breath, he'd be huffing and puffing pretty fiercely within a minute or so of walking, which isn't so normal for him lately, but i'm going to tell myself that hiking is more strenuous than running around the house. yeah, that works. [ok, dr b, you can start reading again.] he loved chasing after blithe and bram, and the older two loved being able to sit on the ground with him and look for acorn caps. [yikes! paeds should probably ignore that sentence, too. kids with no t-cells shouldn't really play in the dirt. so, dr b, just ignore this whole paragraph. thanks. lol]

it was, at least by my standards, a perfect morning. and i hope we have many, many more of these. so let's all touch some wood and say a little prayer and light a candle and do whatever it is we do to beg and plead to the cosmos for some stability, health and happy/normal days for asher and the rest of us. fall is upon us, my friends, which means that, for my immunodeficient boy, there will likely be many trips to paeds, who will call cardio, who will say "to emerg with him!" who will now have to actually look for something wrong because it's not hot out anymore. and let me tell you, that's not nearly as fun as it sounds. i'm hoping that none of the new cardios will know how i take my coffee (black, hint hint) for a very long time.

and while i've got your attention, an update on yale: he's being admitted in toronto tomorrow for a sedate echo, CT scan, and who knows from there. likely a cath and a barrage of other tests. please, God, let him just need a med change. anything else is just too much. please keep yale and tanna in your prayers. i'll post when i have details. or you can check for yourself; the link is on the sidebar. thanks. :)