Charlie's Blog

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

Monday, November 28, 2011

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

Friday, November 18, 2011

Take it Easy

It's been a great week. This time last week, I was still thinking about Charlie's DCM being temporary. It's amazing how a shift in thinking can heal your own heart. I am now thinking of his DCM as something we are going to live with - emphasis on live - and a challenge that we have been chosen to take on.

I was really have trouble with Charlie's NG tube, in particular. If you are reading this and know me, then you know how much food affects my life. I love food. I can't imagine not loving food. I will never be skinny because I just. Love. Food. I couldn't imagine a child of mine not liking food. And then, suddenly, magically, Charlie started eating - dare I say liking - his solid food. It gives me so much hope for his future every time he opens that little mouth of his like a baby bird. The tube suddenly seems long-term, but temporary.

I will cook this child whatever he wants to eat, whenever he wants to eat it.

I was also having trouble with the thought of Charlie's life being cut short. I know I've said it before, but I've really started living as though nothing is certain. No one is guaranteed tomorrow. Charlie is doing great right now, and that's a focus I need to maintain.

So, all in all, things are great! Charlie is tranisitioning to not needing a third nap, which is awesome on two fronts: one, he has more time to scooch and be cute and around us, and two, it gives Matt and I some evening time because Charlie goes to bed earlier now. We completed Dexter Season 5, and now we're starting The Wire (although I left episode 1 to write this entry, so that doesn't bode well for the series). It's so nice to just spend time together that isn't sleeping in bed. I think things are finally starting to normalize. I'm sure now that I've written that, tomorrow we'll send up having a horrible day and I'll feel like we're right back to square one - but for now, and for the past week, I've felt again like I am enjoying being a mum, and that we're a normal family. It feels so good to feel normal again.

Part of feeling normal is getting out and doing things with other people. With our friends Virginia and Jamie, and their son Grayson, we took Charlie to the park for his first ride in the baby swing. He loved it! Here are the super-cute photos to prove it. Enjoy!

Charlie diggin' the swing

Charlie and Grayson

Take it Easy - The Eagles

"Take It Easy"

Well, I'm running down the road
tryin' to loosen my load
I've got seven women on
my mind,
Four that wanna own me,
Two that wanna stone me,
One says she's a friend of mine
Take It easy, take it easy
Don't let the sound of your own wheels
drive you crazy
Lighten up while you still can
don't even try to understand
Just find a place to make your stand
and take it easy
Well, I'm a standing on a corner
in Winslow, Arizona
and such a fine sight to see
It's a girl, my Lord, in a flatbed
Ford slowin' down to take a look at me
Come on, baby, don't say maybe
I gotta know if your sweet love is
gonna save me
We may lose and we may win though
we will never be here again
so open up, I'm climbin' in,
so take it easy
Well I'm running down the road trying to loosen
my load, got a world of trouble on my mind
lookin' for a lover who won't blow my
cover, she's so hard to find
Take it easy, take it easy
don't let the sound of your own
wheels make you crazy
come on baby, don't say maybe
I gotta know if your sweet love is
gonna save me, oh oh oh
Oh we got it easy
We oughta take it easy

Friday, November 11, 2011

Viva Forever

I have been reading lots of other blogs lately - other CM blogs as listed on my site, and my friend's blogs as well. One entry that struck a chord with me was one that mentioned having a mantra to help get you through the tough days. This mom's mantra was something along the lines of "Eyes, wise, heart, smart" - she loves her child's eyes, wisdom, new heart, and her intelligence. I have been having a hard time of late and wanted to come up with a mantra of my own. It took me a few days, but now I've got it.

"This is forever."

It means so many things to me. "This is forever" - as in Charlie is going to be around for a long, long time and to enjoy every minute with him. Put away the tears, Bradstreet, and buck up, because this is forever (Bradstreet is my maiden name, and what I still call myself when I need to toughen up). "This is forever" - as in, Charlie, while he may get better, will have DCM for his. entire. life. "This is forever", as in what being a parent is all about, because even if, a long time from now, Charlie isn't around, I'll still be his mum and that is certainly forever.

It's made me feel better the few times I've already had to use it. I don't know why, exactly, these past three weeks have been so tough, so rollercoaster-y. Matt thinks that I am grieving our old life, that I didn't fully accept what was happening at first. I think that may be true, but it's been three months and I've never been a brush-things-under-the-couch type of person before, so why now? I think perhaps that I had deluded myself into thinking Charlie was going to get better from this as though from a flu or cold - one day, he'd just start eating more and we'd go for an echo and he would be healed. It has taken me time to understand this new world we've been thrust into - this world of medical stores and doctors and nurses and hospitals. It's the time that has allowed me to grieve our old life, as well as the one we now know Charlie won't have (we had high hopes for an at least partially athletic child). But it's also taken me time to rebuild the future I had in my head, and my mantra is helping with that. No matter what, Charlie is still here, still happy and beautiful, and this is forever.

Addition: I said this to Matt this morning and he thought I should post about it. I've been feeling lately like Charlie won't EVER crawl or move in a forwards direction - and then last night I realized: people that can walk, do walk. He'll get there. It's just a matter of time. :)

Viva Forever - The Spice Girls

Do you still remember
How we used to be
Feeling together, believe in whatever
My love has said to me
Both of us were dreamers
Young love in the sun
Felt like my saviour, my spirit I gave ya
We'd only just begun

Hasta Manana,
Always be mine

Viva forever, I'll be waiting
Everlasting, like the sun
Live forever,
For the moment
Ever searching for the one

Yes I still remember,
Every whispered word
The touch of your skin, giving life from within
Like a love song that I'd heard
Slipping through our fingers,
Like the sands of time
Promises made, every memory saved
Has reflections in my mind

Hasta Manana,
Always be mine

Back where I belong now,
Was it just a dream
Feelings unfold, they will never be sold
And the secret's safe with me

Hasta Manana,
Always be mine

Saturday, November 5, 2011

Somewhere over the Rainbow

Yesterday we spent the day at the Hospital for Sick Children. All day. We got so much done, and Charlie weathered it beautifully.

(A friend who is an avid blogger and Internet nerd has told me to double space the paragraphs for ease of reading. I shall comply).

We arrvied at 11am and Charlie got some bloodwork done. Not a bad poke, but not his best poke either. No matter what, he did better then the 4-year-old next door, who kept screaming 'Goddamn it!' when they went at her with a needle. From there, we headed to 4A (our clinic ward), checked in, and fed Charlie. Because of the NG tube, this takes about an hour. By noon, Dr. D. was ready to see us, and we went in to see her and Kristen. They are super pleased with how Charlie is coming along - he weighed in at 7.270kg (about 16 lbs), and his overall mood is excellent. He hasn't been throwing up recently, which is great. We've been discharged to one hospital visit a month, which really means he is completely stable now and now we just wait for the drugs to work - for which the timeline is about 6 months, or more.

After that meeting, we got lunch. And went for a walk! We had a nice little visit with downtown Toronto. At 2:30, it was (finally) time for the echo. I don't want to complain, but it was a long, long day.

The echo was pretty much a non-event. He's not worse (but apparently, he really couldn't be much worse, anyways) and there were no clots. They didn't do the ejection fraction measurement this time, so we didn't get any numbers at compare. I get so hopeful each time he has an echo that the NP's are going to come back and say "Guess what? He's doing better!", and when it doesn't happen - no matter how many times I tell myself that it WON'T happen - I am crushed. That said, when they finally DO say that, I'll know that it's for real.

Theh we fed Charlie and drove home through 2 hours of traffic. We were so distracted by the traffic that we forgot to pick up Matt's car in Pickering, and he had to get a friend to drive him out there to get it later in the night! Like I said, long day.

Today's song is 'Somewhere over the rainbow', because it's a hopeful song about the future, and that's how I am feeling right now. Someday, this has to get better.

Somewhere over the rainbow

Somewhere over the rainbow
Way up high,
There's a land that I heard of
Once in a lullaby.

Somewhere over the rainbow
Skies are blue,
And the dreams that you dare to dream
Really do come true.

Someday I'll wish upon a star
And wake up where the clouds are far
Behind me.
Where troubles melt like lemon drops
Away above the chimney tops
That's where you'll find me.

Somewhere over the rainbow
Bluebirds fly.
Birds fly over the rainbow.
Why then, oh why can't I?

If happy little bluebirds fly
Beyond the rainbow
Why, oh why can't I?

Wednesday, November 2, 2011

Rollin' with my homies

It's been a week since I last posted. I can't believe it - I am sorry to those of you who check every day for Chupdates (you know who you are).

It's been a pretty good week, actually. Charlie has been eating more lately (averaging a third of each bottle, or more) and continues to be happy and content. Today, he ate some carrots and cereal, which was a big accomplishment. I am still worried about what the future holds food-wise, but I am getting better at just accepting things as they come along.

I went through a really tough time last week - I felt like Charlie was going to get worse at any second, that things weren't going to work out, and that we were in for more and more hurdles. I don't know why, exactly, I had a rough patch - it didn't have any relation to Charlie, although he was eating a bit less for a few days. It seemed to just come upon me - a dark cloud descended, like in those commercials about depression. I cried to one friend on the phone about how I now understand (and never did before) why people with depression don't want to get out of bed. For a few days, I didn't want to get out of bed, although I did. Everything shitty happens when you're out of bed. Under the covers is so warm and comforting and safe. I miss the safe feeling of our old life.

Matt was instrumental in getting me though that patch, as was my mom and my friends.
This week I decided I needed to see people for a distraction. I used to avoid distractions - I thought that I would do better to completely accept what is going on by sitting at home by myself. I now think that I have accepted it, but not seeing people is not helping my state of mind. So, this week, I've had over a friend every day. Friends on Monday, doctor's appointment yesterday, my mum today, tomorrow another friend, and then Friday we are back at Sick Kids for an echo, some bloodwork and Charlie's regular appointment. It has helped immensely to be around people again.

I think I was isolating myself for a few weeks there in order to just be with Charlie, and accept the situation, now that things have settled into somewhat of a new normal.

Hallowe'en was adorable, if nothing else. Here's a couple of pictures for proof - Charlie was a monkey (appropriate) and I was a pumpkin (appropriate):

At Charlie's doctor's appointment yesterday, he weighed in at 15lbs, 15.5oz. This is about .5oz ahead of where we thought he'd be, which is great. He's sitting at the 6th percentile and shooting up the charts. We're so proud of him. He also is going through a fairly barf-free time right now, which is great for his clothes, our floors, and my clothes. He's nice and chubby, warm and snuggly, and we love him so much.

This has been a fairly random blog update. So, a random song! 'Rollin' with my homies' - I've been rollin' with some of my pretty awesome homies lately, all of whom come to see my rather then making me drag the NG stuff all over the place - thanks for making me feel like I belong in the world again.

Rollin' with the homeis - Coolio

Saturday morning, take the train for a ride
The sun is up, I got my homies by my side
Rollin' down the street with my sixteen speakers
... on the beach, daddy dippin'
I hang a light at the right, ready to have fun
Then I bust a left for the 121
Pull it into park and lay it on the grass
I roll back the ride, so I can see some ass
Clock one sista, fifteens in the rear
Bump a forty, leaves me gawkin' here
I hits 'em up for the circle, that's how I'm livin'
Crowbars in the house and got us on a mission
You can be Blood, or you can see Cryppin' fool
But I ain't trippin'
My homie Snoop kicks the dinner juice and that's alright,
But a-Coolio with the flow seems to yak all night

Rollin' with my homies ('said we yak all night, yeah)
'Said we yak all night (I got us on the way in the CBT, and it's alright)
Yak all night...
Rollin' with my homies ('said we yak all night, yeah)
'Said we yak all night (I got us on the way in the CBT, and it's alright)
Yak all night...