Red for our Hero

This dude.

  Yep, this one.

He ROCKED his Electrophysiology appointment today.

Rocked it.

Satting 94% and grew another inch.

Still at 39 pounds, but at this point, he's been that weight for so long, I'm assuming he'll be 6'4" and 39 pounds as a fully grown adult. 

But as far as the heart stuff, he's looking good.

He's complicated.

Really complicated.

Complicated like a super difficult version of Sudoku where you have an open spot that could have any 1 of 9 numbers, but really can only use one and you have to look 9 different ways to make sure everything else is coordinating appropriately. Oh, and whatever number you do put in will change approximately 9,958,789 numbers elsewhere on the board. 

But we already knew that.

We're extra thankful today for a brilliant Electrophysiologist who can think around the parameters of Bodie's complex little heart (as he said today, Bodie's pacer issues are so complex, it's sort of like adding a 3rd major complication in - 1) HLHS, 2) CPVT, and 3) Pacer issues. Awesome.). 

But, with a lot of patience and brainpower, thankfully, he figured out a way to make it all work.

Surgery is still on the horizon (not open-heart, but heart surgery nonetheless, to clip the nerve that sends adrenaline to his heart). And it has a huge potential upside for Bodie. But we're all in agreement that it's not the right time for it now.

Bodie's in a good spot right now. Thriving. Living his life. Making big strides socially at school. So we're going to leave him be and let these strides keep happening. It's a sweet spot to be in.

Please help us honor our sweet little dude, and all of his heart buddies here and in Heaven by wearing red, along with us, on Friday, February 6th, National Wear Red Day. (Yeah, yeah, I know - that's national wear red for women's heart disease or something like that - but, what can I say, until CHD has its own day, that's as close as we're getting, so we're taking it.)

Please grab that red shirt or sweatshirt, throw it on and think proudly of Bodie next Friday! And pass the word along so that others can participate as well! And email me pics here or on Facebook or text (whatever way you have to get ahold of me) - and let me know where you're wearing your red. And I'll put together a video like we did last year! 

And if you need a little inspiration, check out this gem I made for Make a Wish. We were recently invited to a Make a Wish event to share our story, and I made this video for that event. Enjoy.


 (if you can't see it, the video can be found here)

Wear Red for Bodie!

Why I don't like CHD Awareness Week

CHD awareness week is coming up February 7th. Everyone in the heart community is getting their ducks in a row. They're buying their heart shirts, they're making their Facebook banners, they're getting their blogposts ready. They're SUPER excited, planning really cool stuff, getting ready.

And I'm over here in the corner, hunkering down in my shirt, just staring into my lap, wishing it to speed on by.

Sigh.

I think that's sort of blasphemy to say in the heart community. 

I hope I don't lose my heart mom card for saying that.

But it's just the truth.

I DON'T LIKE CHD AWARENESS WEEK.

I never used to mind it. Used to love it and get all on board. But not this year. 

Here's why. 

For the first time in my son's life, he's really and truly doing WELL.  Not just doing well in spite of crappy sats or arrhythmias, not doing well even with super blue lips and nail beds. Not doing well even though he can't walk across the room without being out of breath. But, really and truly doing well by all barometers of "doing well."

He's hitting milestones.

We're making plans.

He's living a typical life.

All things we didn't know we'd get to do.

I want to bury my head in the sand and pretend everyone has this outcome. 

I want to look away from the CHD community and pretend it'll always be this way. 

I want to pretend that this ½ a heart, with its crazy new circulation, will last forever. 

I want to ignore the reality that, at 4, this may be the best my son's body will ever be.

Because that's easier.

But then, CHD awareness week comes along and yanks me out of the sand and says "LOOK AT ME! Look at CHD! Look how awful it is! Look what it does to poor, unsuspecting families! Look at the children who don't live to see their first birthdays! Look at the kids who were doing great one day and in the ICU the next. Look at adults who ran out of their "borrowed time!" CHD is awful and no one is ever safe. And you never will be either. Your son's battle with CHD will never be over; he will never be fixed."

And then I have to think about it. 

I think about it every day, anyway. 

That's a part of being in the heart community, of reaching out and providing support to one another. 

And this is where I've been called, so it's where I happily stay. I love my heart community.

But I think about it in small doses each time. 

I have time to absorb each individual loss, the pain, the staggering number of children who lose their battle with CHD. And, somehow, it becomes a tiny bit more manageable that way. But then, CHD awareness week comes along and I have to try and absorb it all at once. 

And it's too much. 

Because CHD is awful. 

Just plain awful.

Kids and adults are taken way too soon.

I can't even breathe when I think of the sweet souls I've known who've lost their battles. 

Travis. Wyatt. Isaac. 

My list goes on and on and on. Those were just the first I knew personally. 

For the ones who are still fighting, far too many days, weeks, months, years are spent in hospitals because of CHD. 

And even when you're not in the thick of it, you're still in it. 

I can't look at a parent at their child's bedside in the hospital without thinking "when will that be me and Bodie again?" Because it will. That's just a fact. 

I can't pretend that I don't sneak into Bodie's bedroom every night, lay my hand on his heart and whisper "Please, God. Please let me keep him. Please. Please." 

CHD robs families of so, so much. 

So yes, I'd like to hide my head in the sand. 

But I can't. 

And I won't. 

Because CHD awareness is too important. 

I will continue to support CHD families, during CHD awareness week, and every other week of the year. And I will lean on them for support when Bodie's journey takes us back to the dark places. 

And I will continue to spout facts like my life depends on it. Because someone's child's might. 

And I will continue to push for funding for more research. 

 Because, with awareness comes funding. With funding comes research. With research comes options. 

And options are what changes EVERYTHING. 

So, this year, during CHD awareness week, you'll see me. 

I wouldn't miss it for the world.

Snow Birds

The last time we went to the snow, this was about how it went.

Suffice it to say, Bodie was not a fan.

I'm happy to report that today's trip was much more successful!

We love our little snowbirds!

In Celebration of Life

We're going on a family trip to Mexico in February (oh my goodness!!!), so we realized we needed to get our passports in order. Dusk and I needed to renew ours, and we needed to get the kids passports. In the hustle and bustle of pulling everything together for that process,

 (on a side note, have you ever had to renew or apply for a passport? Holy Toledo, they do NOT make the process easy. Pages and pages of application, but hey that's government for you. But I digress…)

I realized we didn't have a birth certificate for Bodie. As in, we had never gotten one. We had a certificate of live birth from the hospital, but not an authorized certificate from the county. 

I don't know how other states do it, but in California, it's not an automatic thing. You actually have to apply for the certificate. It's usually done in the hospital after birth, but, yeah, well, we had other things on our minds at the time.

Dusk said to me "What do you mean, we don't have it? How did we miss that?"

I just stared at him blankly.

 Was he kidding? Was he not there when Bodie was born?

He paused for long moment, and then quietly said "Yeah, I guess when you don't know if your child is going to live a week, you don't exactly worry about things like a birth certificate."

Yeah.

Boy did that ever throw me back to how awful things were with Bodie in the early days, and how touch and go things were for so long. (and if you haven't been following our journey for very long, let me just say, things were very rough for a good 7 months or so). 

He's so robust now, so amazing and full of life. If it weren't for the purple tinge his lips get on colder days, or the scars that mark his chest, I could almost forget everything he went through. 

It could almost be someone else's story.

Almost.

So, to pick up his birth certificate today was, just, so. So. So everything. 

The 45 minute wait at the courthouse couldn't even take the joy out of the moment.

To us, this is so much more than a birth certificate. 

It is a celebration of birth, yes. 

But also a celebration of fight, of endurance, of tenacity beyond measure. 

What a great way to end 2014, with such a symbol of celebration.

2014, you have not been altogether kind to us. 

But even so, you have blessed us.

Happy New Year's Eve.

Christmas Blessings

It is so true, what they tell you when you're first diagnosed with HLHS - "Be careful reading blogs. A large majority of the people who blog are the ones whose kids are struggling. The ones who are doing well - they don't blog. They're out there living life." 

Yep, that's us. Living life. We're still here and Bodie is doing great. We're so blessed. Just haven't had a free second to blog. Life has been crazy!!!

First off, WE MOVED BACK HOME last month! Praise God! And things have been moving at lightning speed since then!

Here's what we've been up to:

Kicking butt at cardiology appointments. 

Everything looks great, we weaned off his middle of the day med, and we don't have to go back for 3 months. Yay!

Bodie with his beloved Dr. Kim:

Losing a front tooth 

(and, in true Bennett fashion, she wouldn't pull it out herself, but her bestie, Anna, accidentally head butted her at Bodie's school Christmas pageant and that thing popped right out! We didn't exactly expect to be dealing with blood and a brand new Christmas dress, but hey, at the least the tooth was out!)

Oh wait, no - losing BOTH of our front teeth.

(I think those things popped out within 5 days of each other!)

Trimming our tree 

- with "Engine Turtle" (as Bodie calls them) ornaments. ;-) 

Spreading Christmas love with our besties.

Sierra with Anna and McKenzie at their school Christmas play.

Bodie and one of his favorite preschool teachers, Miss Missy. (Miss Missy also heads up the children's choir that Bodie is a part of. The last time the choir sang in front of the church, Bodie got up there, turned his back to us and stood that way for the whole dang thing. Dusk and I were fairly well mortified. This time, he got up there, looked right at me and sang his little heart out - I was SO SO SO stinking proud!)

 The kiddos with Cameron and McKenzie. Could they be any cuter???

Getting some pretty cool gifts.

Sierra got her first SEWING MACHINE!!!

Can you handle this excitement???

And her first project was an adorable skirt for her American Girl doll, Caroline.

Impressing the pants off of everyone at church.

Sierra read a particularly long Bible passage at the Christmas Eve service at church. I cannot begin to tell you how proud we were of her! We had so many people telling us afterwards what a great job she did! (We also had people talking about Bodie - that he was busy, that he was a bruiser, that he had "so much energy," that he reminded them of Dennis the Menace (true story), etc. etc. - I know I'm not supposed to say this, but it's just the truth - we were a little more proud of child #1 than #2 that night!) 

Whew! Like I said, we've been busy! 

It is blowing my mind how "normal" our holidays were this year, after everything we have been through. We have so many friends who are sitting in the hospital with children recovering from open-heart surgery. Or home with empty arms, wishing their child was still here to fight. So many, many hurting hearts this holiday season. They are never far from my hearts and prayers. 

So I am feeling so profoundly grateful for where we are today. My heart is full and my cup runneth over indeed. 

Hope you and yours had a wonderful Christmas season!

Blessings from our home to yours,

Dusk, Amy & the kiddos

Grateful Hearts

Sometimes, a picture really is worth a thousand words.

Our hearts are overflowing this Thanksgiving.

Thank you, Lord, for your abundant blessings on our family. 

Healing and growing

A year ago…

Bodie was honored at a Cal Poly football game. He was honorary team captain and led the team down the hill and participated in the coin toss. He was also running a fever, too shy to make eye contact with many people and had oxygen saturations in the low 70s.

This year, we took him to a Cal Poly football game and this kid knocked my socks off. He grinned from the beginning of the tailgate to the end of the game (well, ok, to the part where he passed out in my arms at the beginning of the 3rd quarter.)

He was happy, boisterous and FULL OF ENERGY. 

When I said "Do you remember last year? You were running a fever and were so sick!" he replied with "Oh no! How sad!!!" Silly boy.

(Yep, this happened - a certain little girl was REMEMBERED by the cheerleaders, and they stunted her! She was in 7th Heaven!!!)

(This kid partied so hard, he fell asleep in my arms at the beginning of the 3rd quarter, slept through the rest of the game, through us walking around the field, standing and waiting while the band walked 5 feet in front of us PLAYING, walking all the way back to the car, going home, being undressed and put to bed! And then, had the nerve to get really upset and accuse Sierra of lying the next morning when she told him he slept through the game! Hahahaha!)

A year ago…

Bodie went to his school Halloween party a little blueberry and cried his eyes out. Would barely pose for pictures and wouldn't let me leave his side. He kept begging to go home.

This year, he was as PINK as could be  

and ran straight over to his best friend Annika and gave her the BIGGEST hug ever. 

And proceeded to smile and run around with his friends the rest of the party.

A year ago…

Bodie went out trick or treating, but had to stop for a breath between each and every house. And by the 3rd house, I was carrying him.

This year, along with the most beautiful Elsa ever

Bodie donned his SWAT team uniform

and showed Trick or Treating who was boss.

I kept having to say "Slow down, Bodie! We need to wait for the other kids!" as he was running from house to house at the front of the pack. I was blown away.

Today, we went to a Star Wars themed birthday party for a friend. The kids got Jedi costumes and got to meet Darth Vader and Luke Skywalker!

(Pretty amaze balls, yes?)

But the most amazing part was right when we first got there. Bodie got suited up in his costume, grabbed his light saber and literally ran straight into the group of boys fighting. He didn't know any of the boys. None of them knew about his heart.

 

In that moment, there was not a single thing fragile about that kid.

And in that moment, all I could think was "I wish I could have seen this moment. 5 years ago, when I was anxiously awaiting his arrival, I wish I could have known this moment was coming, that it was ok to hope for it."

There isn't a "a year ago" for that moment. It was too magnificent to have ever imagined a year ago. 

It is mind blowing how far Bodie has come just in the past year. 

Today, he is strong, he is robust. 

Words we weren't sure we'd ever get to use to describe our boy. 

Today, we are praising God for how far He has brought our boy. 

On the Inside

I don't think about it much, really. It certainly doesn't dictate our days and our nights like it did at this time last year.

But then, something will happen. It will sneak up on me, out of nowhere. 

Like a freight train.

So maybe not so sneaky, but it turns out, I'm super adept at pretending like it's not there.

But then it is - the reminder of just how damn scary it is raising a medically fragile child. 

Just how much he has been through.

Last week, I was picking Bodie up from preschool and lingered on the playground for a bit, just watching him play. I watched the kids swirl around him in dizzying circles, up and over the playground structure, around the sandbox, running with effortless ease. Laughing and calling to one another in high pitched toddler squeals. Kids, truly, without a care in the world.

I looked over to my sweet boy, watching him climb up and down the play structure, full of life. And yet without the same boisterous energy of his playmates. He has energy for miles, but it's a different kind of energy. A heavier energy. Perhaps an energy born of a lifetime of experiences no one should ever have to endure. An energy honed after 4½ years of literally fighting for his life. And I was sad for him, sad for how hard he has fought just to play on the playground like other kids.  

And I found myself angry. Angry at a group of 3 and 4-year olds. Seriously. Ridiculous, right? Bodie has the sweetest classmates and I love them. But, in that moment, I was angry. And sad. And I was resentful of their sweet lives, void of pokes and prods, and horrific procedures. 

The feeling passed quickly, but it surprised me. I honestly haven't felt that way in a long time. Maybe the last time I felt this way was watching all the other babies breastfeeding when Bodie was unable to. Something like that. Definitely a long time ago. 

I was surprised to find those feelings still lingering. 

You know, I don't often feel like Bodie has "missed out" on much in life. We really do try very hard to let him live as typical of a life as possible. It's possible I'm in denial (feel free to hit me up and let me know if that's the case), but really, other than when his heart has necessitated special treatment (pulling him out of school before procedures, his Make a Wish trip, etc.), we have made every effort for Bodie to have a normal life. He goes to preschool, he "plays" (as long as it's a very loose interpretation of that word) sports, he loves to color and crash his cars, he has chores just like his sister. By most accounts, he lives a rich life. 

And yet, sometimes, the reality of what he's been through still hits me.

So what I would say to those who watch from the sidelines and wonder how we do it, is this - this life is tough on the inside. 

Not always. Sometimes it's amazing, and the blessings are overflowing. And 100% of the time, I am confident this is where God has called our family.

But even so, sometimes it is freaking scary. 

Of course it is when you're in the hospital and in survival mode. That's kind of a no-brainer, right? Everyone can see that.

But sometimes it's hard even when it doesn't look like it. 

Times when the familiar pit sets into your stomach the week before routine cardiology appointments, when your mind races back to appointments that ended in unexpected hospitalizations, ripe for triggering the boatloads of PTSD compliments of having almost lost him more than once. And your mind races forward to the inevitable - will this be the appointment where we finally start to see his heart function decreasing or his body not liking his circulation?

Times when sweet chubby little hands reach out for medications, as much a part of life for him as playing with his little cars. And times when he can name all of his medications without skipping a beat.

Times when a new pediatrician stops short upon walking into the room, saying "Wow. I just read his file, and this was not the child I expected to see."

Or times when you watch him play on the playground, and realize that his life is so, so much bigger than any 4-year old's should be, his worries deeper, his life experiences more colorful. 

And it hits you again, almost as much a sucker punch as that initial moment of diagnosis. For just a moment, the clarity of it all, of everything he has been through, hits you. And it brings you to your knees.

For those of you on the outside, I say thank you for still keeping those of us on the inside grounded. Thanks for sticking around. Thank you for asking me how I'm doing, how Dusk is doing, and how Bodie is doing, and how his sweet heart healthy sister Sierra is doing. 

Thank you for recognizing that this journey isn't always easy, but that this is the journey we've been called to.

Thank you for praying for us up close and from afar. Thank you for interceding on our behalf when we're too tired to, or too scared to. 

Thank you for not making it all about Bodie's heart, because it's not always all about his heart. Someday, his heart will dictate decisions he makes in his life. 

That day, it will be all about his heart.

But today is not that day. 

Today, he just wants to be a boy, playing on the playground.  

Thanks for letting him be that kid.

Oh, and thanks for putting up with my crazy. I know I don't make it easy. And thanks for keeping it under wraps for me, so that my boy can just focus on being a kid.