fun.

Apologies, apologies. The audience of this blog never ceases to amaze me. Now that a) Charlie is doing spectacularly well and b) I don't have an hour every night by myself in the dark, it's difficult to make time to write on here. I shall make a better effort, though. Monthly, at least?

The Thomas household is fine. It's great. It's wonderful! We are having so much fun around here these days. The DCM looms over us constantly (Matt and I are crazy, basically) but it's easy to forget about it on a daily, minute-to-minute basis when Charlie is doing so well. We have our moments - moments that are not normal for average parents (Charlie didn't gain enough wait last month, a friend from the hospital has been listed for her transplant - these things make us crazier) but generally, life is pretty good.

I remember when Charlie was first diagnosed, Matt saying that all the 'stuff' (meds, syringes, tubes, etc) would just become our 'new normal'. I was skeptical, but it did. I can't imagine NOT prepping Charlie's meds for the next 24 hours every day around 3pm, or NOT knowing my way around Sick Kids. It's strange. We were visiting friends of ours with a 18-mont old baby girl, and I went to change her diaper. I was - startled it the only word that fits - when I lifted up her shirt and there was no g-tube on her tummy. It was the weirdest feeling. I said aloud to her 'oh, what a nice tummy you have!' While she looked at me like I was nuts. Because I am, a little, I think. :)

Charlie has a sedate echo in April 12th. We'll get more real information then, but if his energy level is anything to judge by, he is doing just fine, enlarged heart or not. Case in point:

I am so, so glad we chose to have me home and with Charlie for these 2.5 years. I'm headed back to work in the fall - part time - and the closer it inches, the more I realize what a special time this has been. Library time, swimming lessons, baby yoga...and dance par-tees.

That's the non-news from around here. Thanks, as always, for reading.

Carry on, by fun.

Well I woke up to the sound of silence

And cries were cutting like knives in a fist fight

And I found you with a bottle of wine

Your head in the curtains

And heart like the Fourth of July

You swore and said,

"We are not,

We are not shining stars"

This I know,

I never said we are

Though I've never been through hell like that

I've closed enough windows to know you can never look back

If you're lost and alone

Or you're sinking like a stone

Carry on

May your past be the sound

Of your feet upon the ground

Carry on

Carry on, carry on

So I met up with some friends at the edge of the night

At a bar off 75

And we talked and talked about how our parents will die,

All our neighbours and wives

But I like to think I can cheat it all

To make up for the times I've been cheated on

And it's nice to know when I was left for dead

I was found and now I don't roam these streets

I am not the ghost you are to me

If you're lost and alone

Or you're sinking like a stone

Carry on

May your past be the sound

Of your feet upon the ground

Carry on

Whoa

My head is on fire but my legs are fine

After all they are mine

Lay your clothes down on the floor

Close the door, hold the phone

Show me how no one’s ever gonna stop us tonight

'Cause here we are

We are shining stars

We are invincible

We are who we are

On our darkest day

When we’re miles away

Sun will come

We will find our way home

If you're lost and alone

Or you're sinking like a stone

Carry on

May your past be the sound

Of your feet upon the ground

Carry on

 

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