Charlie's Blog

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

Monday, May 7, 2012

Adventures

The great thing about a really shitty week is that when things start to go well again, you really have to notice. My arm is better, dad is ok, Charlie is fine and my brother is recovering. Can't get much better then that.

The updates:

My arm is OK. It turns out I had ligament damage and some muscle strain, but with a little physio I'll be OK in time. It aches constantly, especially at night, and I wonder if that will ever go away. I'm sure it will, again, in time.

Dad is fine, a little sore, but fine. They 'got' all the cancer, so he's back to his old self.

My brother is recovering. He's in a lot of pain (3 brain surgeries in 4 weeks will do that to do) but other then that, he's recovering nicely. He's home (thanks goodness - he was starting to lose it in the hospital) and healing until the doting and watchful eye of my mother.


Charlie! Charlie is great. We tried a few 'tube-free' days last week to see if he would suddenly, start magically eating more and drinking, but to no avail. He couldn't keep much down (I think he eats too fast) and we were worried about him getting dehydrated, so back in the tube went.

We went from this:

To this:

Really, the experiment just let Matt and I know know two things: yes, Charlie really does need the g-tube and no, it is not forever. He clearly likes to eat, and just needs to learn how - how to know he is hungry or full, how to eat at a reasonable pace, etc. He's doing really well with textures these days (eating bit of cheese puffs, croissant, bread) but its just not enough. In time, though, he'll come around.

What an adventure this month was! May 29th, we'll start a new one.

The Adventure - Angels & Airwaves

I wanna have the same last dream again,


the one where I wake up and I'm alive.
Just as the four walls close me within,
my eyes are opened up with pure sunlight.
I'm the first to know,
my dearest friends,
even if your hope has burned with time,
anything that's dead shall be re-grown,
and your vicious pain, your warning sign,
you will be fine.
Hey, oh, here I am,
and here we go, life's waiting to begin.
Any type of love - it will be shown,
like every single tree reach for the sky.
If you're gonna fall,
I'll let you know,
that I will pick you up
like you for I,
I felt this thing,
I can't replace.
Where everyone was working for this goal.
Where all the children left without a trace,
only to come back, as pure as gold,
To recite this all.
Hey, oh, here I am,
and here we go, life's waiting to begin.
Tonight,
hey, oh, here I am,
and here we go, life's waiting to begin.
Tonight,
hey, oh, here I am,
and here we go, life's waiting to begin.
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
I cannot live, I can't breathe
unless you do this with me
Hey, oh, here I am (do this with me),
and here we go, life's waiting to begin (do this with me).
Hey, oh, here I am (do this with me).

Wednesday, May 2, 2012

Pictures

Helllooooo up there... (October, 2011)

Ooo. Who's that present for? (Christmas, 2011)

I will beat the pablum outta you! (January, 2012)

...but I'm the only gay in the village! (February, 2012) (and if you don't get that joke, go here. And laugh.)

Shark bait! Oo ha ha! (March, 2012)

Blue steel. Or, 'Ladies, this isn't the only kinda 'chick' I like. *eyebrow*' (April, 2012)

Goooood morning, sleepyheads! (May, 2012)

 

Pictures - Kid Rock & Sheryl Crow

[Kid Rock]
Livin' my life in a slow hell
Different girl every night at the hotel
I ain't seen the sun shine in 3 damn days
Been fuelin' up on cocaine and whisky
Wish I had a good girl to miss me
Lord I wonder if I'll ever change my ways
I put your picture away
Sat down and cried today
I can't look at you while I'm lyin' next to her
I put your picture away, sat down and cried today
I can't look at you, while I'm lyin next to her
[Sherly Crow]
I called you last night in the hotel
Everyone knows but they wont tell
But their half hearted smiles tell me
Somethin' just ain't right
I been waitin' on you for a long time
Fuelin' up on heartaches and cheap wine
I ain't heard from you in 3 damn nights
I put your picture away
I wonder where you been
I can't look at you while I'm lyin' next to him
I put your picture away
I wonder where you been
I can't look at you while I'm lyin' next to him
I saw ya yesterday with an old friend
[Kid Rock]
It was the same ole same "how have you been"
[Both]
Since you been gone my worlds been dark & grey
[Kid Rock]
You reminded me of brighter days
[Sheryl Crow]
I hoped you were comin' home to stay
I was headed to church
[Kid Rock]
I was off to drink you away
[Both]
I thought about you for a long time
Can't seem to get you off my mind
I can't understand why we're living life this way
I found your picture today
I swear I'll change my ways
I just called to say I want you to come back home
I found your picture today
I swear I'll change my ways
I just called to say I want you to come back home
I just called to say, I love you come back home