One Week *Updated*

If I ever have a week worse then this one, I won't be doing this blog anymore. Honestly. I feel like I have become one of those whiny people - I work with a woman like this - where everything is wrong, all the time. Only this week, it's true! Forgive my whining and indulge me, will you?

Monday: my younger (27!) brother is diagnosed with a brain tumour.

Tuesday: my dad goes in for prostate cancer surgery.

Wendesday: I go visit my dad in hospital, and am told that my brother will be in a different hospital the next day for BRAIN SURGERY.

Thursday: Brain surgery day. More hospital. Jamie comes out of it fine, but they were unable to biopsy the tumour, so the future is hazy as to a plan. :(

Thursday late/ Friday early: Charlie, teething, is up from 2am - 4am. Matt stays up with him and then is too wired to go to sleep for an hour before we leave for the hospital. Matt functions almost all day on 4 hours of sleep.

Friday: trip to our hospital for an echo day with Charlie. We were excited about said echo because at last check, he was doing so well, remember? Well, it turns out that he really wasn't doing all THAT much better, and today's results were exactly the same. There were 'indications of possible progress' in January, but that progress didn't happen. He is still on a blood thinner, the coming-off which was the Great Hope.

Friday, also: our genetics FINALLY came back (a 'two to three month wait' that was 7 months long) and although there was only a 30% chance of finding a variant, they found one. Charlie has a unique variant on his V-something gene - but it's not a helpful gene, as in while they know that variations on that gene cause DCM, they can't predict any outcomes from it. So, useless. Matt and I gave our blood samples today, which means in 6 weeks we'll find out if we can have more kids, or if the chances are too high to risk it. It's 50/50 that either we passed it on to Charlie, or Charlie mutated that sucker all on his own. This is hitting me hard - there is a very good chance I won't be pregnant again. Sincerely, in that case, I took Charlie's pregnancy for granted.

ALSO Friday: Matt pukes on the way home from the hospital. Not. Kidding. He's been sleeping since 6pm. It's now 10, and I have made him a little 'apartment' in our room until he gets better. Honestly, though, if he has the flu, we all have it.

This is not, by the way, a cry for help. I am fine. We are fine. Really. This is where I vent. So don't go Facebooking me about how I'm doing or being me a casserole. Really, I'm FINE. :)

Have you had a worse week? I hope not. Tomorrow will be a better day? How could it be worse?!

**Update** Hilariously (or not), I fell and broke my arm the day after I wrote this. That's how it can be worse.

One week - Barenaked Ladies

It's been one week since you looked at me
Cocked your head to the side and said I'm angry
Five days since you laughed at me saying
Get that together come back and see me
Three days since the living room
I realized it's all my fault but couldn't tell you
Yesterday, you'd forgiven me
But it'll still be two days till I say I'm sorry

Hold it now and watch the hood wink
As I make you stop think
You'll think you're looking at aqua man
I summon fish to the dish although I like the Chalet Swiss
I like the Sushi 'cause it's never touched a frying pan
Hot like Wasabe when I bust rhymes
Big like Leann Rimes
Because I'm all about value
Bert Kaempfert's got the mad hits
You try to match wits, you try to hold me but I bust through
Gonna make a break and take a fake
I'd like a stinkin' achin' shake
I like vanilla, it's the finest of the flavors
Gotta see the show 'cause then you'll know
The vertigo is gonna grow
'Cause it's so dangerous
You'll have to sign a waiver

How can I help it if I think you're funny when you're mad?
Trying hard not to smile though I feel bad
I'm the kind of guy who laughs at a funeral
Can't understand what I mean? Well, you soon will
I have a tendency to wear my mind on my sleeve
I have a history of taking off my shirt

It's been one week since you looked at me
Threw your arms in the air and said you're crazy
Five days since you tackled me
I've still got the rug burns on both my knees
It's been three days since the afternoon
You realized it's not my fault not a moment too soon
Yesterday, you'd forgiven me
And now I sit back and wait till you say you're sorry

Chickity China of the Chinese chicken
You have a drumstick and your brain stops tickin'
Watchin' X files with no lights on
We're dans la maison
I hope the smoking man's in this one
Like Harrison Ford I'm getting frantic
Like Sting I'm Tantric
Like snickers guaranteed to satisfy
Like Kurasawa I make mad films
Okay, I don't make films
But if I did they'd have a Samurai
Gonna get a set of better clubs
Gonna find the kind with tiny nubs
Just so my irons aren't always flying off the back swing
Gotta get in tune with sailor moon
'Cause the cartoon has got the boom Anime Babes
That make me think the wrong thing

How can I help it if I think you're funny when you're mad?
Tryin' hard not to smile though I feel bad
I'm the kind of guy who laughs at a funeral
Can't understand what I mean?
Well, you soon will
I have a tendency to wear my mind on my sleeve
I have a history of losing my shirt

It's been one week since you looked at me
Dropped your arms to your sides and said I'm sorry
Five days since I laughed at you and said
You just did just what I thought you were gonna do
Three days since the living room
We realized we're both to blame
But what could we do?
Yesterday, you just smiled at me
'Cause it'll still be two days till we say we're sorry

It'll still be two days till we say we're sorry
It'll still be two days till we say we're sorry
Birch mount stadium, home of the Robbie

Everybody Hurts

I'm sorry I haven't written in a few days; things have been crazy around here. Well, that's a lie. I've just been enjoying being a mum, being home with Charlie. I haven't had the inclination or the time, seemingly, to write anything worthwhile. But today, I do.

Coming home from the hospital was fine. Charlie rocked the new medication, or so the staff at Sick Kids told us, and our time there was actually really boring. It made me realize how much adrenaline I was running on for that week back in August. I felt constantly being back then - this time, it felt like a lot of hurry up and wait. So, upon discharge, we were very happy to leave the hospital behind, even for just a few days. They told us on Sunday that this week might be the week we got the OK to only come once every two weeks instead of once every week, so we had that to look forward to.

I'm feeling pretty sorry for myself tonight. It's a combination of things: I'm overtired (5 hours of sleep last night combined with no nap today makes Kristina an unhappy girl), I'm a bit panicked that we don't go back to the hospital for 16 days, Charlie isn't eating well these days, Dr. D.'s tone made me think Charlie isn't doing as well as we think he is, Charlie goes for another echo on Nov. 4th (the next appointment date), and I have a generally bad feeling at the moment. Let's go through these, one by one.

1. I'm overtired. Must take more naps? Solution: No solution for this one, and am thus not going to whine about it.

2. We don't go back to the hospital for 16 days: This is the least of my issues. We have a nurse visit once a week, so there'll be two of those before heading back to Sick Kids. Solution: Not going is a good thing, because he is stable.

3. Charlie isn't eating well these days: this kid drives me nuts sometimes. He isn't eating very much right now, although he is eating a bit more cereal. I wonder if it's that he's figured out that he gets full (somehow) even if he doesn't eat much, or does he not feel well right now? He seems fine, behaviour-wise. He goes through fits and starts, and right now we're in a fit. Solution: No solution here, either, other then patience.

4. Dr. D.'s tone: like I said in my previous entry, her strong suit is not compassion. Her words said "How's he eating? Not well. OK." Her tone said "He's not eating well? That's a sign that things aren't right. Let's keep an eye on this." Now, Judith (NP) said not to worry about it, that it's really good he's taking even some, and that it's really good he's having cereal now. Trust the highly educated doctor or the nurse that sees Charlie all the time? Tone misread? Not even there? I should have said something. Solution: Will call tomorrow to discuss with Judith or Kristen.

5. The echo: I am worried about this echo because no one has told me not to worry about it. The first one was scheduled so far in advance, and they told us right away not to expect anything at that one. I am so worried that this one should show some improvement but won't. All of my hope from the magic '17' number from before is gone. Solution: wait and see, I guess.

6. My bad feeling: I don't know if this is separate from all of these things or a combination factor from all of them. I just have a bad feeling about things right now. In the past I didn't trust my mother's instinct, and now that I always do I don't want to, because it is telling me that something is wrong. That things aren't going as well as I thought they were. That a transplant is not only likely but inevitable. That I'll only have 15 or 20 years with my boy. Solution: Fuck, wait and see. Again.

This didn't really make me feel better. There is a lot of wait and see 'solutions', which aren't solutions at all. Never before have I wished for a time machine, just a glimpse into the future to see if Charlie will be all right, or not. I know I should stay positive, that I should think of only good things and butterflies and rainbows, but it's impossible. I often think of the worst. For tonight, I think all I can hope is that tomorrow is a better day.

Everybody Hurts - REM

When the day is long and the night, the night is yours alone,
When you're sure you've had enough of this life, well hang on
Don't let yourself go, 'cause everybody cries and everybody hurts sometimes

Sometimes everything is wrong. Now it's time to sing along
When your day is night alone, (hold on, hold on)
If you feel like letting go, (hold on)
When you think you've had too much of this life, well hang on

'Cause everybody hurts. Take comfort in your friends
Everybody hurts. Don't throw your hand. Oh, no. Don't throw your hand
If you feel like you're alone, no, no, no, you are not alone

If you're on your own in this life, the days and nights are long,
When you think you've had too much of this life to hang on

Well, everybody hurts sometimes,
Everybody cries. And everybody hurts sometimes
And everybody hurts sometimes. So, hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts. You are not alone