Charlie's Blog

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

Monday, October 24, 2011


I'm feeling much better, after a few days of being as sad as I've been about Charlie's DCM. It's really difficult not to become completely nihllistic (sp?) and completely give up. But then, how can you give up in the face of such beauty? This child is amazing.

So, a new day, a new page. We were trying to swtich Charlie from 5 feeds a day to 4, which completely did not work. He stopped eating - our NP's think that he can only handle 150mls at a time because of the blood flow needed to digest. I have to say, I have learned more in the past 2 months about human biology then I did throughout high school. So, back to 5 bottles a day we will go. Oh, and he's handling a little more cereal now (1 tsp at a time!) pre-bottle, and is enjoying eating, seemingly. Sometimes I have to dance and sing to get him to open his mouth, but once it's in there he laps it up. Good for now, I suppose. He's back to eating a third- to a half- of each bottle, and I'm not forcing him to eat anymore. I think it's important that each eating experience is a good one, so if he puts the bottle back in hs mouth to chew the nipple, I'm cool with it, but as soon as he gives me the 'I'm done' face, he's done. It's going pretty well these days.

If you want, a YouTube video of Charlie eating. It's pretty ridiculous - and so is my reaction. Click here.

The other exciting news around here is that Charlie's first tooth has broken through! He had been tonguing this certain spot on his lip for a few days and I pulled down the lip to see what was going on - and there was a white, glistening tooth! He keeps playing with it and doesn't like anyone to touch it - but if you put your finger nears his face, he'll grab it and pull it in, and then you can have a real good feel. It's SO sharp! He's going to look so different in a week or so when it grows in and he no longer has an exclusively gummy smile.

Well, it's bottle time around here, like it always is. Enjoy today's song: Survivor, by Beyonce and crew. Because that's what Charlie, and is going to be. I'm aware that the lyrics don't match our situation at all (I am so not breaking up with Charlie, ever) but the overall tone is certainly applicable. Perhaps we can think of it in relation to when DCM in no longer in the forefront of our minds?

Survivor - Destiny's Child

Now that you're out of my life
I'm so much better
You thought that I'd be weak without you
But I'm stronger
You thought that I'd be broke without you
But I'm richer
You thought that I'd be sad without you
I laugh harder
You thought I wouldn't grow without you
Now I'm wiser
Though that I'd be helpless without you
But I'm smarter
You thought that I'd be stressed without you
But I'm chillin'
You thought I wouldn't sell without you
Sold 9 million

I'm a survivor (What?)
I'm not gon give up (What?)
I'm not gon stop (What?)
I'm gon work harder (What?)
I'm a survivor (What?)
I'm gonna make it (What?)
I will survive (What?)
Keep on survivin' (What?)

I'm a survivor (What?)
I'm not gon give up (What?)
I'm not gon stop (What?)
I'm gon work harder (What?)
I'm a survivor (What?)
I'm gonna make it (What?)
I will survive (What?)
Keep on survivin' (What?)

Thought I couldn't breathe without
I'm inhaling
You thought I couldn't see without you
Perfect vision
You thought I couldn't last without you
But I'm lastin'
You thought that I would die without you
But I'm livin'
Thought that I would fail without you
But I'm on top
Thought it would be over by now
But it won't stop
Thought that I would self destruct
But I'm still here
Even in my years to come
I'm still gon be here

I'm a survivor (What?)
I'm not gon give up (What?)
I'm not gon stop (What?)
I'm gon work harder (What?)
I'm a survivor (What?)
I'm gonna make it (What?)
I will survive (What?)
Keep on survivin' (What?)

Wednesday, October 19, 2011

Everybody Hurts

I'm sorry I haven't written in a few days; things have been crazy around here. Well, that's a lie. I've just been enjoying being a mum, being home with Charlie. I haven't had the inclination or the time, seemingly, to write anything worthwhile. But today, I do.

Coming home from the hospital was fine. Charlie rocked the new medication, or so the staff at Sick Kids told us, and our time there was actually really boring. It made me realize how much adrenaline I was running on for that week back in August. I felt constantly being back then - this time, it felt like a lot of hurry up and wait. So, upon discharge, we were very happy to leave the hospital behind, even for just a few days. They told us on Sunday that this week might be the week we got the OK to only come once every two weeks instead of once every week, so we had that to look forward to.

I'm feeling pretty sorry for myself tonight. It's a combination of things: I'm overtired (5 hours of sleep last night combined with no nap today makes Kristina an unhappy girl), I'm a bit panicked that we don't go back to the hospital for 16 days, Charlie isn't eating well these days, Dr. D.'s tone made me think Charlie isn't doing as well as we think he is, Charlie goes for another echo on Nov. 4th (the next appointment date), and I have a generally bad feeling at the moment. Let's go through these, one by one.

1. I'm overtired. Must take more naps? Solution: No solution for this one, and am thus not going to whine about it.

2. We don't go back to the hospital for 16 days: This is the least of my issues. We have a nurse visit once a week, so there'll be two of those before heading back to Sick Kids. Solution: Not going is a good thing, because he is stable.

3. Charlie isn't eating well these days: this kid drives me nuts sometimes. He isn't eating very much right now, although he is eating a bit more cereal. I wonder if it's that he's figured out that he gets full (somehow) even if he doesn't eat much, or does he not feel well right now? He seems fine, behaviour-wise. He goes through fits and starts, and right now we're in a fit. Solution: No solution here, either, other then patience.

4. Dr. D.'s tone: like I said in my previous entry, her strong suit is not compassion. Her words said "How's he eating? Not well. OK." Her tone said "He's not eating well? That's a sign that things aren't right. Let's keep an eye on this." Now, Judith (NP) said not to worry about it, that it's really good he's taking even some, and that it's really good he's having cereal now. Trust the highly educated doctor or the nurse that sees Charlie all the time? Tone misread? Not even there? I should have said something. Solution: Will call tomorrow to discuss with Judith or Kristen.

5. The echo: I am worried about this echo because no one has told me not to worry about it. The first one was scheduled so far in advance, and they told us right away not to expect anything at that one. I am so worried that this one should show some improvement but won't. All of my hope from the magic '17' number from before is gone. Solution: wait and see, I guess.

6. My bad feeling: I don't know if this is separate from all of these things or a combination factor from all of them. I just have a bad feeling about things right now. In the past I didn't trust my mother's instinct, and now that I always do I don't want to, because it is telling me that something is wrong. That things aren't going as well as I thought they were. That a transplant is not only likely but inevitable. That I'll only have 15 or 20 years with my boy. Solution: Fuck, wait and see. Again.

This didn't really make me feel better. There is a lot of wait and see 'solutions', which aren't solutions at all. Never before have I wished for a time machine, just a glimpse into the future to see if Charlie will be all right, or not. I know I should stay positive, that I should think of only good things and butterflies and rainbows, but it's impossible. I often think of the worst. For tonight, I think all I can hope is that tomorrow is a better day.

Everybody Hurts - REM

When the day is long and the night, the night is yours alone,
When you're sure you've had enough of this life, well hang on
Don't let yourself go, 'cause everybody cries and everybody hurts sometimes

Sometimes everything is wrong. Now it's time to sing along
When your day is night alone, (hold on, hold on)
If you feel like letting go, (hold on)
When you think you've had too much of this life, well hang on

'Cause everybody hurts. Take comfort in your friends
Everybody hurts. Don't throw your hand. Oh, no. Don't throw your hand
If you feel like you're alone, no, no, no, you are not alone

If you're on your own in this life, the days and nights are long,
When you think you've had too much of this life to hang on

Well, everybody hurts sometimes,
Everybody cries. And everybody hurts sometimes
And everybody hurts sometimes. So, hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts. You are not alone

Saturday, October 15, 2011

Beautiful Boy (Darling Boy)

So, we've spend the last few days in this hospital getting Charlie's final med started and monitored. The good news is that he has taken to it well (as we expected) and we get to go home tomorrow! His blood pressure (which is what they were monitoring), has stayed fairly level even with the full dose, and so we are finally on his entire protocol of medications. He now takes 6 different types every day, two of which are vitamins or non-DCM related, and four that are helping his heart. He's been in a great mood while we've been here - picking up his mad flirting skills right where he left off. He now has three (!) different nurses who all think THEY are his girlfriend. Man, there's gonna be some hearts broken in Ward 4D...

So, our next challenge is continuing to gain weight and getting him down to 4 feeds a day - what a dream! Then, we'll have more time to fit in cereal and other foods, which we are going to start in the next few weeks. I finally get to break out the Babea (Google it - the most amazing baby appliance you'll ever see) and make some real baby food!

Being in the hospital reminds me of a letter a close friend sent me upon becoming aware of Charlie's situation:

"There will always be a fluttering somewhere in the back of your mind. That is panic. You will always know where it is. Sometimes it will be delicate and faraway, and you will be able to to ignore it and check emails, make phone calls and eat food that you may even taste. Sometimes it will be present, but quiet, and you will fidget and fuss over blankets and the set-up of chairs and worry about useless things like showers and sleep. And sometimes the fluttering worry will be like a storm on the other side of a thin sheet of glass, and all you will be able to do is remember to breathe. The glass will not shatter. It may seem like it will, but you will be able to withstand more than you ever imagined you could, more than you ever imagined was possible to know, more than you will ever be able to explain to anyone. The fluttering is most dangerous when it is quiet. It will sneak up on you unawares, and swell and fill your consciousness and suddenly you will be in that storm, unable to breathe for the sheer panic of the moment. " Being in the hospital, surrounded by adept medical staff, keeps the panic "delicate and far away". The perspective here is skewed, too - I just finished having a conversation with a mom who is celebrating her son's longest morphine-induced nap ever. Charlie goes home tomorrow to continue his essentially normal baby-life. I can't imagine that mothers panic. Mine is manageable, especially here.

In honour of Charlie and his amazing spirit while we are here in the boring, boring hospital, Lennon's 'Beautiful Boy (Darling Boy)' is our song of choice for today. We are exhausted and bored and panicked, and yet somehow Charlie's smile makes everything better. He is an amazing, beautiful boy.

Beautiful Boy (Darling Boy)

Close your eyes,
Have no fear,
The monsters gone,
He's on the run and your daddy's here,

Beautiful, beautiful,
Beautiful Boy,

Before you go to sleep,
Say a little prayer,
Every day in every way,
It's getting better and better,

Beautiful, beautiful,
Beautiful Boy,

Out on the ocean sailing away,
I can hardly wait,
To see you to come of age,
But I guess we'll both,
Just have to be patient,
Yes it's a long way to go,
But in the meantime,

Before you cross the street,
Take my hand,
Life is just what happens to you,
While your busy making other plans,

Beautiful, beautiful,
Beautiful Boy,

Monday, October 10, 2011

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

Saturday, October 8, 2011

A Cheat

It's been a good week. Charlie is doing well. I'm waiting for the other shoe to drop, but right now, I am feeling as positive as I have so far. He seems happy, feedings are going well (or we've just gotten used to the 'new normal'), he is eating a bit of cereal, tummy time is going well, he can sit (!), he is napping well, etc. :)

This is a cheat. I wrote this about Charlie for Facebook a while back, pre-diagnosis, but for those of you who didn't see it, here it is. We just love him so much.

*Sunday, 8am update: other shoe dropped. Double barf. :(

I need to share something. Since I had Charlie, I've realized how much of who we are comes with us right out of the womb. I used to be one of those people who thought you learned everything from your parents ; I was the 'nurture' side in the 'nature vs. nurture' argument time and time again. How could your parents NOT completely shape who you are and who you've become? They are your original role models and, obviously, are the only people you really take after.

But Charlie shows so much of his own personality and person-ness already, and we haven't had any time to shape him yet. He's stubborn, willful, has a good sense of humor, likes to laugh, likes to sleep and other nuance to numerous to list here. He has personality twitches, too, like the fact that he wrinkles his nose when he starts to giggle, or that he smiles crookedly when he knows you're trying to be funny but he just doesn't get it. He observes everything. I can't believe how much of a person he already is. And to think we _all_ came out already people, already ready to's astonishing.

This is not to say parents don't matter - I think we're going to get to shape who Charlie becomes - in kindness, in generosity, in acceptance. We'll get to teach him to steer clear of silly things like cigarettes and dirt bikes, and more dangerous things like drugs and binge drinking. We'll get to help him become the best version of himself - but that self-ness is already there, just waiting to come out each and every day.

I don't want this to be some ramble about how amazing my child is. Matt and I have accepted that since we are very average people, the chances os him being an NBA star or being the next Bill Gates are pretty slim. But he'll be _him_, this brand new person we're coming to know and already love, and that is just so cool.

Tuesday, October 4, 2011

Fix You

We've had a few good days in a row. By 'good days' I mean Charlie hasn't barfed since Friday. Yep, non-barf days are good ones. The past couple of days, Charlie's had some trouble pooping, but with three big poops today I'm hoping the strain-days are over.
I've been meaning for a while now to write about the amazing staff at Sick Kids. We had the best nurses and doctors, I think, that OHIP could offer. Below, please find a small list and explanation of each person who touched our lives and affected us so greatly.

Dr. D. - Not to be confused with Dr. A., the moronic pediatrician, Dr. D. is our cardiologist. She is amazing. She is blunt without being harsh and, although sometimes lacking in true compassion, is always willing to listen to our questions and answer them fully without treating us like idiots. Her kids happen to be gifted and thus may end up in Matt's History classes one day, where they automatically earn a 90%.

Kristen & Judith - Our Nurse Practitioners (N.P.s) - Kristen is a lovely little sprite of a woman who makes up for the clinical atmosphere of the hospital (although you can't really fault them on that at Sick Kids, either - the whole place is built around kids, so it's not exactly 'clinical' feeling). She is compassionate, warm, and well-informed on all things cardio and cardiomyopathy. Judith is wonderful, too - she is also warm, compassionate and educated. She answers all of our questions and gives us information we ask for, even when we should't necessarily have it (i.e. last week's EF numbers). I think the role of N.P.s is to take what the doctor says, filter it down to you, and deal with the aftermath. They are there to deal with you on a human level - something that is greatly needed in time like this.

Shelley - my favourite nurse from the cardiac ward. Shelley is like a really nice, popular cheerleader. She has a way of treating Charlie that rivals mine. I'm pretty sure he smiled at her more. She is gorgeous and kind.

Mahalini - Another one of our cardiac nurses, I think Charlie liked her the best. I'm really bad with accents, so it took me a while to get to used to Mahalini's, but once I was used to it, she quickly became one of my favourites on the ward. She wears 'healing beads' and does juice fasts to cleanse herself, and Charlie loved all of her stories and her long, beautiful hair.

Karen - A night cardiac nurse when we were there, Karen look good care of all of us in the beginning days when we were learning about the meds, and the I.V., and the feeding tube, all without complaint and with patience. I appreciate her candor and upbeatness.

...there are too many more staff to mention, including a doctor we have yet to meet (Dr. G.) but have spoken to many times on the phone, and other nurses who have lent a helping hand or been there for the overnight shift. I appreciate all the work they do more then they could ever know.

Today's song is 'Fix You' by Coldplay, because that's exactly what the staff is doing for Charlie.

Fix you - Coldplay

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse

And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth

Lights will guide you home
And ignite your bones
And I will try to fix you

Tears stream down on your face
When you lose something you cannot replace
Tears stream down on your face
And I...

Tears stream down on your face
I promise you I will learn from my mistakes
Tears stream down on your face
And I...

Lights will guide you home
And ignite your bones
And I will try to fix you

Sunday, October 2, 2011

Song for the hopeful

I was going to write an entry about the expectations we had for Charlie as he was born - we thought athletics were going to be a forte, swimming, lifeguarding, maybe some piano, definitely encouraging music in high school, or art, an early reader and good learner - and as I tried to start the post several times, I realized that the only thing that has changed in that list is the athletics. The kids can't play contact sports. Oh well. Our expectations haven't changed in that regard, I suppose, at all.

Really, by 'expectations', I meant that we assumed that Charlie would be around for as long as we were. Which, for any parent, isn't always a safe thing to assume. It's horrible to think about, but none of us know how long we are here for, or when we'll depart. I think it's the worst thing about life - not knowing when it's going to be over. I guess, though, that if we did know, life wouldn't be as much fun. Philosophically, perhaps it would be more fun - if you knew you weren't going to die bunggee jumping, maybe we'd all have more fun along the way. Specifically, near the end.

The hospital has warned us that they expect that Charlie will have to have a heart transplant at some point in his life. Now, I am hopeful that it won't come to that, but what if it does? The average life expectancy after transplant is 15 - 20 years. Then, you can have another or there might be some sort of new technology that is out by that point that will extend your life further. I wonder what will be around during Charlie's lifetime - the one drug he's on has only been recently approved in Canada, and in the UK it's known as a wonder drug. I hope (hope is an understatement) that during Charlie's lifetime there is a miraculous heart technology advancement. They can make phones that are as big as your thumbnail, but they can't fix hearts so they run for 100 years?

I know it's early, but I am beginning to grasp how important extending quality life is, and how important it is to enjoy each other while we're here. Don't worry, I'm not sinking into a pit of despair or anything - I firmly believe, in my heart of hearts, that Charlie is going to get through this with flying colours. But this situation has certainly got me thinking about life and death, time with family and friends, and what matters most. Forever, Charlie is what matters most, and spending time with him and extending his life is a newly found purpose in mine.

Lyrics to Song For The Hopeful :
(Harry Connick, Jr.)

People with hope
Have a special prayer,
A louder drum,
A brighter flare.
This is a song for the hopeful.
May God hear it sung.

People with faith
Are the lucky kind.
They'll be the ones
With peace of mind.
This is a song for the faithful.
May God hear it sung.

There's a song for the doubtful.
There's a song for the lost.
There's a song for the desert
Barren, but crossed.
But for those who are strong of spirit,
Maybe they don't need to hear it.
But still, a song for them.
A simple song for them.

Nothing can shade
A seasoned soul.
It's all the loss
That makes it whole.
This is a song for the hopeful.
This is a song for the faithful.
This is a song for the hopeful.
May God hear it sung.
May God hear it sung.