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

 

Posted with Blogsy

Put on a happy face

I know I haven't posted in a while - all of you readers should take this as a good sign. A VERY good sign. Not only am I feeling better, but I think Charlie is starting to as well. He is eating more and more on a regular basis*, is happy and as active as ever, is on the verge (we're thisclose) to crawling or scooching, and all is currently well in the Thomas household.

*Eating better is relative. Charlie is now finishing half of the average bottle, versus a quarter - or less - before.

This week's title is not meant to be dismissive. I don't mean 'put on a happy face' as in 'paste one on there for the world to see, and meanwhile cry quietly into your pillow at home'. I really mean I can smile right now. We are still so early in this process, but the more I see Charlie and the more I read about other kids with DCM and the more hopeful advances I see in heart treatments, the better I feel. I can't help but notice, too, that since I've been less stressed, Charlie has been feeling better. 'Duh.' says my very helpful husband. I'll only let him get away with that because it's his 31st birthday today.

Celebrations are important in our house. Charlie was at the table tonight, as every night, for the carrot cake and pizza Matt wanted, and we said 'Happy birthday Daddy!' all day today together. Well, I said it and Charlie laughed uproariously. He laughs a lot most days. It's a beautiful sound to hear.

This week we are off for an adventure at the One-of-a-Kind show in Toronto. We'll see how that goes - long drives both ways and two feeds out of the house. I'm nervous. I'll post about it after.

On that note, it's movie time around here (Matt fancies himself a movie buff). Happy birthday, Daddy!

Put on a happy face

Gray skies are gonna clear up,
Put on a happy face;
Brush off the clouds and cheer up,
Put on a happy face.
Take off the gloomy mask of tragedy,
It's not your style;
You'll look so good that you'll be glad
Ya' decide to smile!
Pick out a pleasant outlook,
Stick out that noble chin;
Wipe off that "full of doubt" look,
Slap on a happy grin!
And spread sunshine all over the place,
Just put on a happy face!
Put on a happy face
Put on a happy face
And if you're feeling cross and bitterish
Don't sit and whine
Think of banana split and licorice
And you'll feel fine
I knew a girl so glooming
She'd never laugh or sing
She wouldn't listen to me
Now she's a mean old thing
So spread sunshine all over the place
Just put on a happy face