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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