Thursday, June 3, 2010


wow, the last few months have been rough. really rough. brutally rough. asher has been through the ringer so many times, and frankly, i feel like i've had the crap kicked out of me more times than i can count.

as it happens, i am now exhausted. and overwhelmed.

the bug that asher has in his bladder is a nasty one. in fact, the docs don't even know how it got there, and he's got a 14-day course of antibiotics to get rid of it. i am sure that this infection was caused by the huge amounts of lasix asher was given in the spring, which has injured his kidneys. we'll wait and see for sure on the renal ultrasound in july, but i would put money on this (if i had any, that is, but you know what i mean).

asher needs to gain about 5 lbs just to get up to the 50th percentile on the growth chart. ever tried to pack 5 lbs onto a healthy 3 year old? it's pretty much impossible. so you can imagine how optimistic i'm feeling about putting any weight on asher. :( he's only got a few months to turn this weight pattern around, to start gaining regularly... and if he doesn't... he'll get a g-tube.


and right now, i can't help but feel guilty for that. when he started eating, i was so excited. and he was eating so much; i'm not joking when i say that he used to sneak into the fridge and take out things like cheese and yogurt and apples and stuff like that. so i thought he was doing well. i pushed to get rid of the tube; i'm the one who actually took it out. and now he might need it again. i feel like it's my fault that he might need to go through all that again, after working so hard to get rid of the tube before. and in the meantime, i need to feed him food that is so disgustingly unhealthy, just so he'll gain weight. for crying out loud, the other morning i buttered a hashbrown from mcdonald's!!!! because it's not greasy and gross enough (although delicious), now i have to butter it!!! he gets to eat all the fast food and cookies and ice cream he wants... and more. that's right, i have to force my heart kid to eat a happy meal. and where any other mother would say, "yes, hunny, you can have some ice cream or cookies, but first you need to eat an apple," i now have to say, "yes, sweetie, you can have an apple, but not before you finish all your ice cream and cookies." do you see how messed up that is?!?! and this is actually healthy for him!! but then i start to worry about how fattening and unhealthy these foods actually are, and even though they're good for him on the weight front, this kind of diet can't be good for his heart... but we'll have to deal with that later, i guess. that's right, we'll deal with hypertension and cholesterol later. for now, let's make him fat. blech!!!

add to all of this the fact that blithe and bram see asher eating like this, and i have to say to them, "yes, i know you'd like a milkshake with your fries and burger, but that's not healthy. you need juice or milk, and you're only getting fries as a treat. it's salads with dinner at home for the rest of the week. only asher gets junk food." try explaining this to them. they don't get it. they want the same stuff he gets. and he doesn't even eat or drink it all, because he has almost no appetite anymore.

and now i have discovered something disconcerting about myself: i have no idea how to live normally anymore. it's like i've forgotten how to live outside a hospital. when we're in crisis mode and asher's really, really sick and we're dealing with docs and mystery illnesses and surgeries and nasty meds and emerg trips and ambulance rides and all of that, i'm fine. not even fine. i'm really good at that. i cope, i take care of myself, and i'm ok. i can carry on a conversation, i can laugh and joke about anything and everything, i know what to do and where to go and who to talk to and i keep everything organized and i'm on the ball.

and then we come home.

and i'm lost.

i'm not even joking here. i have no idea how to function anymore on a day-to-day basis. this isn't a lack of trust or faith or surrender. this is conditioning. the last few months have been one crisis after another. so what do i do when there's no crisis? how do i live? what am i supposed to do? how can i sleep in a big, comfy bed? i can rest on a cot in a tiny, cramped hospital room. but in my own room, i get sleep, sure. but it's not restful sleep.

i'm trying to take care of myself, i'm trying to pull myself back together, but it's hard. i could do this if asher were in the hospital. i journal and breathe and go for walks and read and wear my perfume and rest and laugh and play and what not. but somehow at home, where there is so much else that requires my attention, i just don't know what to do.

i will get through all this, i'm sure i will. i've been through worse, and i got better. so i can do it again.

but wow! this is hard. and overwhelming. and exhausting.


so please hold me in the Light now. i'm in a rough place, and i need to get out of it. thank-you.


Diane said...

What you need is a vacation.


In Toronto.


With me. ;)

Mom said...

I found these verses last week while visiting Uncle Mark. I think they apply to you and trust that they will give you comfort and hope.

"You have allowed me to suffer much hardship, but you will restore me to life again and lift me up from the depths of the earth.
You will restore me to even greater honor and comfort me once again."
Psalm 71:20,21

You will get through this and will learn to once again live the "normal" everyday life.

Love, Mom

Anonymous said...

Hang in there Heather. Learning a new normal is never easy, but you've already demonstrated a tremendous ability to adjust to any situation.

Bring the kids for a swim sometime


Heather said...

diane, i <3 you. :) perhaps we can go visit our good friend on a thursday evening? ;)