The Alphabet Song

I promise I'll update more from now on. I've been getting complaints from people who I didn't even know read this blog (hi, Lynn!) so I will try to be better at keeping everyone updated.

Things are normal, which is amazing. I had a flu (which I am pretty sure I got from charlie - it seemed the same as whatever hell-fire illness he has in September) for Thanksgiving, and it was a sad dinner around here. Then, I got a cold which I am just getting over now, and I'm pretty sure Charlie is picking it up. And charlie's g-tube site had an infection which we are finally seeing the end of now.

The g-tube thing has been an interesting experience - Charlie's site started looking iffy a couple weeks ago. We just monitored it, but when it started looking really gross, we called the hospital and needed up taking him to Emergency (not our local emergency, because the docs there would have said, "WOW! A g-tube! Haven't seen one of those since medical school! So...what's the problem?") but the emergency department at Sick Kids, OUR hospital. As trips to the emergency ward go, it was a stellar experience, but it was still 4 hours of germs, late hours and waiting. We ended up on an antibiotic, but the spot kept getting worse. We ended up taking him BACK down this past Monday, after the 'spot' exploded (sorry if you just ate) and we were assured it would now go away on it's own with some TLC. Just one of the many gross things are having a tube.

Charlie has been lifting my shirt, looking for MY tube. And so begins the careful dance to make Charlie realize that no, not everyone has a tube, and while you need it now, you WON'T need to have yours forever - without making him feel shame about having one. When I ask him if he has a tube, he pulls up his shirt and points and says "Nooooo....". Oh boy.

All of that aside, though, it has been strikingly normal. Charlie is eating well (with the help of some somewhat distracting toys). He is gaining a lot of weight (yay!). Sick Kids is happy with how he is doing. He goes to daycare one half-day a week so that I can train in the pool for the triathlon. He went through the 'mamamama' phase - I could not be out of his SIGHT or he would lose his shit and start screaming 'MAMAMAMAMAMA!'. His dad was heartbroken - but this morning, Charlie woke up with a 'DADADADADADADA!' so I think we are over it now (hopefully. It was an annoying phase). So, even though we are ill, it's all been very, very normal.

The Alphabet!

 

I can't wait for Christmas, but I don't think that's news. ;)

The Alphabet Song

A, B, C, D, E, F, G, H, I, J, K, L, M, N, O, P, Q, R, S, T, U, V, W, X, Y, Z.

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Time

One year ago today, we received devastating news about Charlie. He had a huge heart, a huge liver, was retaining fluid, and things didn't look good. We were admitted and this secondary journey - the journey parallel to being a parent - began.

A year later, we are grateful to have Charlie in our lives, alive and well. His boundless energy and never-ending smiles, his tantrums and mood swings, naps and feeding schedules - its all a blessing and we cherish each and every moment. The other night, Charlie woke up at 4am and started to cry. I went in to rock him, and as I sat down, and turned to me with still-sleepy eyes and kissed me on the mouth. He then tucked his head into my shoulder and went back to sleep. He just wanted a kiss! And a year ago, while he was so sick,that kind of magical moment seemed out of reach and improbable at best.

He has a huge heart, and a good heart. He goes for echos and ECGs and Holters and has lots of nurses who would like to adopt him and/or be his girlfriend. Charlie is remarkable, adorable, frustrating, trying, intelligent and emotional. He is everything we wanted and more. I can't imagine a more different place from a year ago today. I am thankful for the support of good friends and family. And we look forward to continuing to share each moment with our special little boy.

 

Time - Pink Floyd

Ticking away the moments that make up a dull day

You fritter and waste the hours in an off-hand way

Kicking around on a piece of ground in your home town

Waiting for someone or something to show you the way

Tired of lying in the sunshine staying home to watch the rain

You are young and life is long and there is time to kill today

And then the one day you find ten years have got behind you

No one told you when to run, you missed the starting gun

And you run and you run to catch up with the sun, but it's sinking

And racing around to come up behind you again

The sun is the same in the relative way, but you're older

And shorter of breath and one day closer to death

Every year is getting shorter, never seem to find the time

Plans that either come to naught or half a page of scribbled lines

Hanging on in quiet desparation is the English way

The time is gone the song is over, thought I'd something more to say

Home, home again

I like to be here when I can

When I come home cold and tired

It's good to warm my bones beside the fire

Far away, across the field, tolling on the iron bell

Calls the faithful to their knees

And hear the softly spoken magic spell

 

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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

Here Comes the Sun

It's important for me to remember that yes, Charlie has a heart condition and yes, we have to be careful about things like getting sick, overexertion, and heart failure. It's just as important for me to remember that we are lucky, lucky, lucky to have such a beautfiul baby boy who is happy and content most of the time, sleeps through the night, and is a social butterfly. It's also just as important for us to get out as a family and do normal family stuff - like a trip to the pumpkin patch!

It's Thanksgiving here (us Canadians have it 6 weeks before our American friends) and after mounds of turkey and potatoes last night, we took a trip to the pumpkin patch today with some good friends. Cuteness abounds (see below for proof)! Charlie had a great time, and for the first time in a long time (be warned: upcoming cliche), the sun felt warm on my face and it was wonderful to be out in the real world. DCM crossed my mind while we were there, but I felt very zen about it. Charlie is doing well right now, and really, any of us could get hit by a bus tomorrow, so today is really all we've got. Heck, this minute is all we've got. For a while there (and I'm sure I'll slip back into this mindset from time to time), all of those cliches like 'food doesn't taste as good' or 'the sun isn't warm to me' really applied. Now, the sun is coming out from behind some dark clouds, ever so briefly, and I remember how lucky we truly are. This ismaking us better parents. It's not great, but it's alright.

Mummy and Charlie, today.

Charlie and his friend, Grayson.

Charlie enjoying his first sit in the hay.

Here Comes the Sun - The Beatles

Here comes the sun, here comes the sun,
and I say it's all right

Little darling, it's been a long cold lonely winter
Little darling, it feels like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right

Little darling, the smiles returning to the faces
Little darling, it seems like years since it's been here
Here comes the sun, here comes the sun
and I say it's all right

Sun, sun, sun, here it comes...
Sun, sun, sun, here it comes...
Sun, sun, sun, here it comes...
Sun, sun, sun, here it comes...
Sun, sun, sun, here it comes...

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since it's been clear
Here comes the sun, here comes the sun,
and I say it's all right
It's all right