Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Friday, April 13, 2012

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

1 comment:

  1. That fully equals a craptastic week! Sending you all, especially your dad and brother, all of my good thoughts. I know how it can feel when everything comes crashing in at once, so if you need an ear, just hollar!
    big hugs!

    ReplyDelete