Momo Fali's: Special, Indeed

Sunday, September 7, 2008

Special, Indeed

My six year old son was born with multiple heart defects, one of which is very rare. It is called Cor Triatrium Dexter and has to do with the trabeculated anterior, sinoatrial orifice, crista terminalis, and the super-cali-fragil-istic-expi-ali-docious.

Basically, the right side of his heart is jacked up.

For the first year of his life, he was cyanotic a lot. For people who are fortunate enough not to understand that term...it means that he was blue. He often had discolored skin around his mouth, which was a constant reminder that his blood didn't have enough oxygen in it.

When he was 13 months old, he had angioplasty and valvuloplasty. This wasn't because he was eating too much butter and bacon, but rather because this one weird defect had created a blockage, and that's why he looked like Violet Beauregarde from Willy Wonka and the Chocolate Factory.

The benefit of the surgery was that he suddenly had energy he never had before. The downside is, that in stretching out the valve the cardiologist created a leak. Not because he messed up, but because that is what happens when you expand a valve.

And that means in the near future my kid will need open heart surgery.

One good thing? Well, he's always been too young to understand just how messed up his ticker really is. He knows there is something different about him...and how could he not? He may as well have a stethoscope permanently affixed to his chest. But, we never talk to him about having any limitations.

The other night, we saw that he has grasped what we've been telling him all along. Because when my daughter was upset and crying hard (Note to Dad: Let's not tell the nine year old that someday her dog will die), my son walked over to his sister and said, "It's okay. Don't cry. I love you. I love you with all of my special heart."

And if that doesn't warm your cockles, I don't know what will.

Labels: Family Life, Kids, Prematurity, Ramblings

# posted by Momo Fali : 5:31 PM

Comments:

Consider my cockles warmed!

# posted by

Melisa Wells : September 7, 2008 at 6:36 PM

For crying out loud Momo, this post made me misty.

I love it when you write this way ~xo

# posted by

Anonymous : September 7, 2008 at 6:58 PM

I am sitting here feeling. feeling a lot. thanks babe. Yr kids are so lucky to have you.

# posted by

amy turn sharp : September 7, 2008 at 7:23 PM

Awwww. He'll really go places. I can't wait to see where. What a special guy. Thanks for sharing again

# posted by

Birdie : September 7, 2008 at 7:52 PM

Someone get me a tissue. That's one great kid you got there.

At first I thought it read "warm your cookies." God, I'm pathetic.

# posted by

Kathy : September 7, 2008 at 7:53 PM

Just when you thought all he could come with was smart and witty one-liners he does this to us.....

# posted by

Unknown : September 7, 2008 at 8:00 PM

Now that is as sweet as sweet can be.

# posted by

Putting the FUN in DysFUNctional : September 7, 2008 at 8:24 PM

Ok, no fair. I wasn't expecting the part about needing open-heart surgery.
Please promise you'll let us know in advance.
You know how much we love that boy! ( me and chels)

# posted by

isla : September 7, 2008 at 9:07 PM

Very warmed indeed!

# posted by

Anonymous : September 7, 2008 at 9:36 PM

I admire you for never discussing his limitations. That's not easy.

# posted by

blackbird : September 7, 2008 at 9:42 PM

That is way, way sweet. Good parenting, yo.

# posted by

feather nester : September 7, 2008 at 9:51 PM

My cockles, although I don't know where or what these are, are warmer than they've ever been right now.

# posted by

Anonymous : September 7, 2008 at 10:02 PM

God, your kids are so freaking special! You are doing such a wonderful job as a mom!!

Your husband...well, if he's going to tell the kids that the dog is going to die, might not be getting A+!!

This made me tear...nope cry!

# posted by

Unknown : September 7, 2008 at 10:05 PM

I just welled up.

My oldest was also born with a CHD. He had surgery at 5 days old. Unfortunately, he has limitations, not because of his heart, this seems, knock wood, to be okay. But because of the surgery he is unable to participate in contact sports (the breastbone is wired closed so it would not be good to say, get a helmet to the chest). He's a skinny boy, so football, hockey, etc. never was really an option anyway. But when he wanted to do karate...we had to tell him why he couldn't. It broke MY heart.

# posted by

Mrs. Schmitty : September 7, 2008 at 10:09 PM

I love the picture! (Surprise, surprise it's a beach shot!) :)
We have known so many kids to go thru open heart surgery. Just last year one of my 13 yr. old son's had to go in AGAIN. He also had surgery as a baby and they needed to do more now that he's grown. It is so frightening for the parents. It is amazing though how far medicine has come and how well these procedures seem to go. We will wishing your family all the best!

# posted by

Anonymous : September 7, 2008 at 10:15 PM

I love him to pieces from here--give them all a hug from me, wouldja? Please? Thanks. (And what a beautiful beach shot.)

# posted by

Anonymous : September 7, 2008 at 10:38 PM

You're very lucky Momo to have such a special little boy. I'm sure the next surgery will be another great success, and you guys are often in my thoughts.

# posted by

Anonymous : September 8, 2008 at 12:20 AM

*sniffle and snort and teary eyes*

Damn. That is one amazing little man.
And you. God Bless you and your ability to raise practical, intelligent, snarky ass little people.

# posted by

Rachel : September 8, 2008 at 12:27 AM

That was beautiful.
What a precious little guy you have!

# posted by

Anonymous : September 8, 2008 at 3:00 AM

That is so sweet. I hope that all goes well with his health and everything get fixed someday.
Also, Does Hubby have a laser burn mark seared into his forehead from where you gave him 'the look' after he told 9 year old that the dog will die someday?

# posted by

WeaselMomma : September 8, 2008 at 7:13 AM

I'm sitting in a coffee shop trying pretend that the tears on my cheek are due to something stuck in my eye. I love how you manage to spin what could be a "feel sorry for my child" story into a "wow, there's beauty in the world" one.

# posted by

Sadia : September 8, 2008 at 9:20 AM

I love that shot of them !!

#1

# posted by

Anonymous : September 8, 2008 at 10:07 AM

Thank you - I needed a good warm-hearted cry this morning!

# posted by

MamaMo : September 8, 2008 at 10:08 AM

Oh, crap. Stop making me cry on a Monday morning....

# posted by

Maureen : September 8, 2008 at 10:58 AM

I was fine until I got to the part about the open heart surgery *sob*

# posted by

Anonymous : September 8, 2008 at 11:22 AM

I don't want to be your inner child's nanny, I want to be your child's nany. No, I think I want to be his mom. Wanna trade? Mine's a little older but the medical bills are much lower I bet.

Seriously, I love your son. Does anything not perfect ever come out of his mouth? Even when he does fully understand the life he's been handed I bet he takes it in stride. You are very fortunate to have him and your inner child just needs to take a few pointers on outlook from him.

You are all in my thoughts and prayers.

# posted by

Anonymous : September 8, 2008 at 12:24 PM

WOW that is touching!

# posted by

The Mom Jen : September 8, 2008 at 12:50 PM

My cockles are practically on fire from that story!

# posted by

Jennifer : September 8, 2008 at 1:43 PM

THAT is awesome.

# posted by

The Laundress : September 8, 2008 at 1:52 PM

I need to take my cockles off the fire now, because I don't want to overcook them. They're juuuuuuust right.

# posted by

LiteralDan : September 8, 2008 at 1:52 PM

Oh my--I want to hug that little guy :)

# posted by

Miss Lisa : September 8, 2008 at 2:28 PM

Cockles appropriately (as opposed to inappropriately) warmed.

# posted by

Mama Dawg : September 8, 2008 at 2:28 PM

What a precious little guy. I'm sorry to hear about the complications...but I will keep him and all of you in my prayers. I'm sure his special heart will be just fine. :)

# posted by

Jaina : September 8, 2008 at 2:41 PM

Wiping away the tears here....

# posted by

Kori : September 8, 2008 at 2:47 PM

Oh that really is special. What a sweet boy. And WOW I can't imagine the stress you have been under with all of the medical issues your child goes through. I hope his special heart grows and grows healthy.

# posted by

Heidi : September 8, 2008 at 4:13 PM

Awww, what a special boy, and he has a pretty special mom too. (His Dad is apparently a doof, but what man isn't? j/k)

# posted by

Have the T-shirt : September 8, 2008 at 4:17 PM

Aww that is so sweet!!!

# posted by

María : September 8, 2008 at 4:45 PM

Oh my cockles are so warm I have melted.

# posted by

Jo Beaufoix : September 8, 2008 at 4:59 PM

Consider my cockles warmed and slightly toasted.

(And FABULOUS picture!)

# posted by

Anonymous : September 8, 2008 at 5:54 PM

What a special little boy! It's amazing what miracles doctors can perform these days.

I'm sure when the day comes for him to have surgery he will come through with flying colors!

# posted by

Caffeine Court : September 8, 2008 at 7:49 PM

He has come SO far. Bless his special little heart.

LOVE the picture!! LOVE it. I think I know where you'll put it in your house. Just a guess.

# posted by

Bean : September 8, 2008 at 8:05 PM

Oh wow! Made me all tingley inside.

# posted by

Mimi : September 8, 2008 at 8:12 PM

Very Very Sweet.

# posted by

Kat : September 8, 2008 at 8:24 PM

Awwww very warmed:) How sweet!

# posted by

Anonymous : September 8, 2008 at 9:17 PM

I just *heart* that son of yours!

# posted by

MammaDawg : September 8, 2008 at 9:27 PM

Sending unreasonable amounts of love your way.

# posted by

patty : September 8, 2008 at 10:55 PM

Seriously that boy of yours really is special!!

# posted by

Amy : September 8, 2008 at 11:23 PM

AAH! stop it Momo! You already make me *laugh* hysterically at your posts. Now this? (don't tell anyone I am a total softie when it comes to cockle-warming kid things)

# posted by

BusyDad : September 9, 2008 at 12:59 AM

Jesus, you totally caught me off guard and now there's something suspicious in my throat.

Oh, and how sweet of him. Seriously. Very sweet. (Write that down somewhere. Not that you'll forget it.)

# posted by

Anonymous : September 9, 2008 at 1:34 AM

cockles officially warmed ... and eyes officially teary.

# posted by

the planet of janet : September 9, 2008 at 2:31 AM

Awww shucks, now I have warm cockles. For every funny thing he says, he's got something just as sweet!

# posted by

chefmom : September 9, 2008 at 11:06 AM

I love you with all of my special heart."

Awww....... I have TEARS running down my face. I cant even handle your son's awesomeness.

# posted by

Anonymous : September 9, 2008 at 1:07 PM

I thought that said 'warm your cookies'. COckles, cookies? They are both warmed.

# posted by

Anonymous : September 9, 2008 at 3:58 PM

Aw, dammit. Now you've gone and made me all sentimental! What a little sweetheart! Bless his little special heart...

# posted by

Colleen - Mommy Always Wins : September 9, 2008 at 4:01 PM

what i'm learning about little boys is that they will destroy your house and throw crap everywhere. but if someone's hurting their sister, they do something about it.

case in point.

if i shout at my 9yo daughter, 3yo son will butt in and go "i not happy! no shout at (queen of hearts)!" as he walks over and gives her a hug.

then i ground the both of them.

# posted by

holly : September 9, 2008 at 6:35 PM

You've got a special little guy there.

# posted by

musingwoman : September 9, 2008 at 7:12 PM

"loved this"

and that picture to go along with it is just perfect..

# posted by

Anonymous : September 16, 2008 at 10:26 PM

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Special, Indeed

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