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).

Crazy & A Much Better Day

Two topics this evening: 1. "Am I out of luck? Perhaps I am just crazy." and 2. "A much better day". Let's begin, shall we?

1. Am I out of luck? Perhaps I am just crazy. Does anyone else think that they are 'lucky' in their day-to-day lives? I'm talking little, tiny things, like getting the dirty clothes IN the hamper when you throw them across the room, or the tea bag doesn't hit the floor when you accidentally fling it across your kitchen, or the paper jam in your printer is easily fixed. I have always considered myself one of those kinds of 'lucky' people. Just to be clear: I am aware that I am lucky to have a great family (two, really), a wonderful husband, an adorable child, a fantastic education and a career I find fulfilling. I'm not talking about those things. I am talking about the tiny, miniscle things that make up an ordinary day. Like winning a draw at a fundraiser. Or spellcheck getting your word right every time. Or, once you are a mum, not getting poop on your hands when you change a diaper.

I feel like these things suddenly stopped happening for me.

At first, I thought it was a shift in my perspective. Have a gone from a 'glass half full' to a 'glass half empty' person because of Charlie's diagnosis? I don't think so. So, I started paying more attention to those little things - its hard to not pay attention when you're suddenly making more messes and mistakes then before. I noticed that, yep, I was missing shots more often then I was getting them in, spilling things, getting poop on my hands, etc. WAY more often then before. Before what? Before Charlie? His diagnosis? Being pregnant? I can't be sure when it started, (or stopped, rather) but it seems that kind of luck has run out for me. I wonder if it's the lack of quality sleep I get, but then how would that affect winning things? Or my paper jam? No, I definitely think luck has turn it's back on me. So, the question becomes, why?

Here's what I am hoping: when Charlie was really sick and in the hospital, I divorced and made up with god (God?) several times. During one of the times we were on speaking terms, I offered to swap anything - pronounced EN-EE-THING - for Charlie to get better. I think my luck has been taken and given to Charlie. I think it's taking extra attention from whoever/whatever to make him well, and well he is getting.

So now you see where the crazy part comes in.

Anyways, that's thought #1 for today.

2. Today was a much better day. Since I last posted, Charlie has gotten over his terrible reaction to his vaccines. Whoa, that was brutal. Poor dear didn't know what to do with himself. You could tell he noticed feeling better when we woke up on Thursday - he opened one eye and cautiously stretched one arm over his head, and then the other, and then both eyes popped open and he gave me a HUGE smile. He has been in a pretty good mood since then, and then today, this happened. I could not believe it.

This child is, clearly, not going to crawl. Thank you, Nannie and Grandpa, and Fisher-Price. :)

Crazy - Gnarls Barkley

I remember when, I remember
I remember when I lost my mind
There was something so pleasant about that place
Even your emotions have an echo in so much space

And when you're out there without care
Yeah, I was out of touch
But it wasn't because I didn't know enough
I just knew too much

Does that make me crazy?
Does that make me crazy?
Does that make me crazy?
Possibly

And I hope that you are
Having the time of your life
But think twice
That's my only advice

Come on now, who do you
Who do you, who do you, who do you think you are?
Ha ha ha, bless your soul
You really think you're in control?

Well, I think you're crazy
I think you're crazy
I think you're crazy
Just like me

My heroes had the heart
To lose their lives out on a limb
And all I remember
Is thinking, I want to be like them

Ever since I was little
Ever since I was little
It looked like fun
And it's no coincidence I've come
And I can die when I'm done

But maybe I'm crazy
Maybe you're crazy
Maybe we're crazy
Probably

It's a good day - Peggy Lee

Yes, it's a good day for singing a song,
and it's a good day for moving alone; (ALONG)
Yes, it's a good day, how could anything go wrong,
A good day from morning' till night

Yes, it's a good day for shining your shoes,
and it's a good day for losing the blues;
Everything go gain and nothing' to lose, (TO GAIN)
`Cause it's a good day from morning' till night

I said to the Sun, " Good morning sun
Rise and shine today"
You know you've gotta get going
If you're gonna make a showin'
And you know you've got the right of way.

`Cause it's a good day for paying your bills;
And it's a good day for curing your ills,
So take a deep breath and throw away your pills;
`Cause it's a good day from morning' till night.