What's in a name?

A little over six years ago, we gave birth to a brave little dude that we named Bodie Isaac Bennett.

The day he was born, we posted this:

"Bodie...a small mining town in the Eastern Sierra Nevadas - shows our love for the mountains and matches his big sister's name Sierra perfectly.

Isaac - in the Bible, God asked Abraham to sacrifice his only, long awaited for, son. Abraham willingly did so, and God rescued Isaac at the last minute and rewarded Abraham for his faithfulness. We chose this name as a constant reminder that our children are not ours, but a gift from God, to be consecrated to Him and to His purposes.

May Bodie Isaac glorify God through his life."

Over the years, we have been asked about Bodie's name, why it's spelled the way it is and what it means. We have always explained that he was named after Bodie, CA. But he had never been to his namesake. Bodie, California sits at 8,375 feet above sea level and comes with all sorts of travel advisories about the thin air, the elevation, etc. And those are advisories for healthy people! 

So, between his single ventricle heart and his asthma, we have never attempted it with Bodie. But, since he's now done 5 summer trips to Tahoe without many issues, and handles Reno well, we figured it was time to try. So, as part of our epic road trip the past 2 weeks, we did a day in Bodie!

As Dusk told Bodie (Bennett) while we surveyed the town of Bodie (California):
"We named you after a town we never thought you'd see."

Needless to say, there were a few tears choked back during our visit.

If you haven't ever been to Bodie, or heard its story, check it out. Very interesting. In its prime, it was a bustling mining town, supported by a really busy stamp mill. But its heyday was short lived, with residents fleeing after the boom. Remarkably, the town has been preserved as it was when its residents left, down to dishes on the tables and sheets on the beds. It's like taking a step back in time! And it is beyond beautiful.

Bodie surveying his kingdom.

Bodie needed a few lifts (we could definitely feel the altitude - the guide told us he has on average one person faint on the stamp mill tour a week!).

 

 Doing gymnastics at 8,300ft???

 So many cool sites! 

An old general store (you could see the goods on the shelves still!)

An abandoned truck

Peeking in the old hotel

 

 Getting to take this little dude to his namesake was a big deal for our family. 

 And for him.

It was really a recognition of how blessed we are, and how we take nothing for granted on this journey we've found ourselves on. 

Family days

This morning, Facebook reminded me that I had posted this picture 6 years ago today.

My caption read "Our FIRST family picture!!!"

At that point, Bodie had been in the hospital for approximately 9,999,999 days, and he had about that many to go before he would be finally discharged. When this picture was taken, he was inpatient following MRSA in his bloodstream. And this was the first picture we finally got of our whole family together. I remember being relieved, and happy, and scared, and exhausted.

So, pretty much how I feel every day now. I just wasn't used to it then. ;-)

In any case, that photo just shook my heart right up when I saw it this morning. We had had a rough morning, where Bodie was losing his mind and sobbing nonstop because (and I am not kidding here), we asked him to eat 1/2 a pancake that Dusk had made (which he actually liked once he tried it - duh) - and 2 itty bitty pieces of sausage.  I know, the audacity of Dusk and I, right??? Anyway, I was D.O.N.E. with Bodie. As in, like ready to drive him to the "family store" (where he can pick out a brand new family!) myself.

And then I saw this picture and it shook me to the core. 

I was reminded again of just how far we have come, and how unbelievably blessed we are to be where we are today. God's hand on our family has been extraordinary. Even if our son is a pain in the butt when it comes to eating. 

I'm not certain if it was in response to this picture, or just cosmic coincidence, but we spent today having the BEST, most full day we have ever had up here at Lake Tahoe (after the aforementioned sausage meltdown of 2016).

We started the day by playing racketball, but I don't have any pictures of that, so I'll throw in an oldie from last winter. It was pretty much how racketball today went.

We "rafted" (meaning, Daddy pushed us out 30 yards from shore, where the water was approximately 2 feet deep), staring up at the most breathtaking scenery.

 We explored 2 different parks. 

 We climbed rocks.

We went on a water slide and swam in a pool.

We ate dinner at one of our most favorite Tahoe haunts, complete with ice cream afterwards. 

 We made wishes on really big dandelions.

 We walked on the beach at sunset and made new friends.

Truth? We're all sunburnt (we may or may not have forgotten to reapply sunscreen), exhausted and spent after today. But you know what? I love this family and I loved this day. 

 THIS family is older (for sure) and wiser (depends on who you're asking and on what day), and has come a hell of a long way from this little family. 

And if we weren't sure about that, today sure reminded us. 

Raising "Technology less" kids in a "Technology more" World

I have a confession to make. Our kids don't have electronics. At 9 and 6, they don't have phones. And they won't be getting them anytime soon. They don't have iPads. They don't do gaming. They don't even have a kindle. We have one (yes ONE) "family iPad." It's actually dad's, but he let's us borrow it for really long doctor's appointments. And for hospital stays.

We have a TV, and we have Hulu for tv shows and DVD's for movies. We don't have cable. And (gasp), we don't have Netflix. 

We still read printed books.

True story.

We have computers and I'm constantly battling my own phone addiction, but as a family, weren't just not that heavily into electronics. We didn't set out to isolate our children, for them to be social pariahs because they didn't know who Miley Cyrus is or the latest dance craze. It just sort of happened. Part of it is because we're just cheap. We're not buying the coolest newest phones for our kids when we don't even buy them for ourselves. 

But it honestly has become intentional. We want them to be kids as long as possible. And there's just SO MUCH on the other side of technology, a whole new world they'll be spending the rest of their lives trying to navigate. Our kids have been through so much, had so much of their childhood taken from them, that if we can control this one little thing, why the heck not. Why not let them hold onto their childhood just a little bit longer? 

Our kids like to watch movies, they will absolutely play games on my phone if I let them, and they love to keep up with their friends via mom's Facebook account. 

But, you know what happens when kids aren't given the first choice of electronics? 

They play. 

They really freaking play.

And their imaginations run wild. We are told all the time that our kids have really active imaginations and I think a lot of it is because they're not given technology as a first choice. When I ask my kids what they want to do, the answer is usually "play Legos, do art, play outside or read books." They can play for hours making up all sorts of scenarios. Last summer, we were listening to The Magic Treehouse on audio cd in the car, and the kids were constantly running around the house, pretending to be Jack and Annie on various adventures. It was messy, but super cool. 

Today, we were at the park and they were pretending to be on a pirate ship, running all over and having me be their prisoner. 

The really cool thing about giving less technologically savvy options is that the kids don't rely on them as much. Last summer, on our roadtrip, we brought our DVD player in the car, and the kids never asked for it. Not once. They just wanted to listen to the Little House on the Prairie series, which we were listening to as a family. And we got to talk about it, which wouldn't have happened if they had been watching their own movies in the backseat wearing headphones while we were listening to music in the front. 

There is a time and a place for technology. Although we've started bringing Lego's to longer doctor's appointments instead, there are many times where the iPad is the only thing that gets us through hospital stays (there are only so many ways to entertain a young kid confined to a hospital bed). But we try to maintain a balance away from so much technology where we can. It is not easy, but if you're intentional about it, you can do it. 

I know technology less isn't the right choice for everyone, but as we head into summer, I encourage to check out your kids' summer activities and figure out if there might be ways to spend a little more time outdoors, exploring - and a little less time in front of a screen. You never know what sort of magic might emerge. (And don't worry about them missing out on all the Miley Cyrus garbage - they'll get it at school anyway!)

Back to the OR

Our sweet, crazy, full of life, brave little boy is heading back into the OR this summer.

And this is exactly how I feel about it.

(By the way, this crying fit was in response to Daddy killing a caterpillar he had just found eating plants inside our house. Bodie was unaware of the caterpillar's existence until Daddy killed it, but even so, they apparently shared such an intense bond that 20 minutes of heaving sobs was warranted.) 

But I digress.

We knew this surgery was coming. But we just didn't expect it to be this summer. If we had, I wouldn't have jam packed our summer with awesome plans already!!! But there's been some changes in his rhythm lately that are all telling us that it's time.

He will be having a left cardiac denervation, also known as a sympathectomy. Feel free to google it (really, it's loads of fun, especially when they talk about the potential side effects and complications). In simple terms, they'll be going in through his side to clip the nerves that send adrenaline to the heart. Which, in Bodie's case, is a good thing. Thanks to the CPVT he inherited from Dusk, his body sends too much adrenaline to his heart. The consequences, as we've seen with Dusk twice in the last year, are grave. So, we're doing what we can to reduce the likelihood that Bodie will have a serious episode.

The good news is that the surgery has a pretty good likelihood of working. It's becoming more and more successful in treating CPVT. And the great news is that they can do it laparoscopically (and they probably will when it comes Dusk's time for this surgery). The really, really, really NOT fun news is that Bodie has too much scar tissue for them to do it laparoscopically. Which means they'll have to go in via a thorocotomy, which will mean going in through his side and spreading his ribs. 

According to Wikipedia, "Thoracotomies are thought to be one of the most difficult surgical incisions to deal with post-operatively, because they are extremely painful and the pain can prevent the patient from breathing effectively, leading to atelectasis or pneumonia." 

Which means, at the tender age of 6, our son will be able to tell you whether a sternotomy (having your chest cracked open) or a thoracotomy (having your ribs spread apart) is more painful. This straight up sucks. And really, really, really makes my mama's heart hurt. 

Again, let me refer you back to "Exhibit A: Amy's feelings on the matter."

And "Exhibit B. I.just.can't.even."

My poor baby.

Thankfully, setting aside the pain issue, this surgery should be less invasive and complicated than any of his previous heart surgeries. He'll probably be in the hospital 3-5 days (at least 1 of those in the Cardio Thoracic ICU) and then, once we have his pain managed well, he'll be home resting for a couple more weeks after that and then should be good to go. We are grateful for that, and we're hopeful that when all is said and done, this will just be another blip on his really noisy radar.

We appreciate your prayers heading into this surgery. Prayers that we can shift our summer plans around to fit this in. Prayers for Dusk and I. As any parent who has been through this will tell you, having heart surgery looming over your head is no joke. It's hard, the worry is always there and it takes a good deal of effort to shove the worry down and choose to focus on God and trust in Him. Because, at the end of the day, it is a CHOICE. And we're trying to daily choose to trust God and His plans for our special boy. 

And please pray for Sierra. This is hard for her, too. Her best-friend-slash-arch-enemy is about to have another surgery and she's worried for him. And she'll need to be flexible since she tends to get passed around to family and friends when Bodie is in the hospital. 

We don't know yet when Bodie's surgery will be. We're still managing schedules at this point, but it will likely be either mid July or early August. So please just cover us in prayer as we head into this summer. Thanks!

Gifts in unconventional packaging

Parenting a medically fragile child bites.

I mean it really sucks in a million different ways.

We live a pretty "typical" life, but even so...

I could list all the ways it sucks for you.

The moment we were diagnosed and our entire world shifted on its axis. The hospitalizations. The surgeries (duh). The medications with side effects that would keep you up at night thinking about. The things you're a witness to. The pain you watch your child go through. The pain you participate in, holding your child down for repeated blood draws and other procedures. The brave children you pass in the hallways, in the elevators. The ones you know and love personally who earn their angel wings far too soon. 

But that's really just the tip of the iceberg.

Everything underneath that.

That's where the scary stuff really starts. 

I could try to explain it to you.

But the thing is, if you haven't been there, you wouldn't understand.

You try and we LOVE you for that effort. 

Please, please keep trying. 

We need you to keep trying.

But unless you have been there, you cannot begin to understand how sitting in a hospital bed next to a truly, truly sick child changes you, your mind, your outlook on life, how it hits your soul. How it literally crushes your heart and forever alters it. 

What it's like to watch your child suffer. And to suffer in a way that you could never make better no matter how much you tried.

What it's like to wonder whether your child will get to grow up, whether you're parenting for the here and now or for the future. 

What it's like to look at their siblings and wonder how this journey is changing them now, how it will change them in the future. 

Every parent worries. 

But the thing is...but when you have a medically fragile child, they're not just crazy overreacting typical parent worries. We fear what we've already seen and know can happen. It's literally like holding a ticking time bomb. One that could go off at any moment. So you hold on for dear life. And pray for more days.

This past week has been tough for us, with conversations about Bodie we weren't quite ready to have. (He's fine cardiac wise, but his rhythm stuff is giving us a run for our money.) 

Lots of feelings coming up. 

And not the good kind. 

So I've been in a funk the past few days, just processing it all. 

Hating CHD. 

Wishing with every ounce of my being that my sweet, silly boy had been born with a whole functioning heart. Just wishing for the hundredth (millionth?) time that I could take it away from him.

And then today, as we were riding home from school and stopped at a stoplight, I looked back to see this. 

And I stopped, struck by his smile. 

And I realized how lucky I am. 

I get to see this smile on a regular basis. A smile that literally lights up his entire being. And reminds me how uniquely amazing God made him. 

You know what that smile was for? Because I had gotten him Reeses peanut butter cups as a snack.

I mean. 

Reeses peanut butter cups are pretty amazing, but even so...to be this excited? 

And you know what this smile a few weeks ago was for? 

Because he found a ladybug. 

A freaking ladybug.

What an incredible approach to life. 

Couldn't we all use a little bit of that?

Man, the world is a better place because this kid is in it.

I know his joy is not larger than life because of his heart, but the two go hand in hand. We get the beauty in the imperfect package. 

In his imperfect heart, our family has experienced perfect joy.

Because of his trials, we have rejoiced at quiet, happy moments.

Because of his perfectly imperfect future (but aren't ours all?), we have been forced into the here and now.

Here's the thing. A medically fragile child pulls you off autopilot. They bring you into the land of the HERE and the NOW. The land of childhood, of laughter and pillow fights, of snuggling in bed and extra stories. Of taking a little extra time.  Of rejoicing over Reeses Peanut Butter cups. 

So, yeah, this medically fragile journey thing sucks times infinity, but the beauty and joy it brings is also times infinity. 

What a gift, even if wrapped in unconventional packaging.

Nine.

Oh, my sweet girl. 

NINE?

How are you already halfway to being an adult? Yowza!!!

We love you SO MUCH. 

And we are so so grateful to be your mommy and daddy. 

You know what, Sierra? 

You are a good kid. 

You really are.

You're sweet and you're kind (well, except to your brother sometimes. But in all fairness, he sometimes makes it pretty hard to love him, what with all the piss and vinegar he throws in your general direction). 

And you're one of the bravest kids I know. 

You're not afraid - of anything. (well, except spiders and bugs, but that's really just self preservation and good common sense to be scared of those suckers. You won't find me holding that against you.) 

But you're not scared of LIFE and that's what we love so much about you. 

We have this picture of you from your third birthday party, which totally encapsulates EVERYTHING about who you are. Messy, sweet and OH SO EXCITED. 

You dive in feet first, screaming in excitement. Whether it is ballet, or swimming, or going somewhere new, all I have to say is "hey, do you want to try - " and your answer is an emphatic "YES!!!" before I've even completed my sentence. And whatever it is we end up doing, you always have so much fun.

That is such a gift, baby girl. Because someday God will speak deep into your heart, and He will call you to go somewhere scary, somewhere uncomfortable, for His sake. And, with every beat of your excited heart, you'll jump to say "YES, Lord! Send me! I can't wait!" (and I'll be scared to death, but oh, so proud, of you.) Don't ever lose that love of adventure, of life, of looking expectantly down the lane at what's coming next, just knowing it will be good. It will make your life so amazing.

I know our life has been tough, but even through it, you have prevailed. You have kept pushing on, over the obstacles and the hurtles. Eight was a bittersweet year for you. It saw your best friend move away, with a little bit of your heart (and mine) with her. But it also saw so much good. Learning to play the clarinet, an exponential increase in your reading and writing abilities, an increased self confidence in your ability to handle stressful situations, and a newfound love of spelling lists, Nancy Drew and karate. 

We have loved watching you grow. The past 9 years have been amazing. We've watched you learn to talk, to crawl, to walk, to read and write. We've helped you learn math and social studies (and sometimes science, but, well, let's just say that's not really our forte in the Bennett household).  

But the next 9 will bring so much more. 

Tonight, we snuggled and I stroked your hair as we talked of what the next 9 years will bring - boys (eeeeek!!! I'm not gonna lie - that was a sigh of relief you heard come out of my mouth when you swore you'd never marry and that boys were kinda icky), learning so.much.more, driving a car, going to high school and picking a college. 

All of these are such wonderful things, but my heart is already a little sad in anticipation of the natural separation you'll start to have from us as you grow. So I'm milking this time for all it's worth - extra snuggles, extra reading, extra talks. Just extra "us" time. Now. You know, when you still think we're cool. 

So many fun adventures ahead. We're so grateful to be here with you, watching you start to spread your wings and grow. 

We love you, girlie. Every last fearless inch of you. 

Happy 9th birthday.

Love,

Mommy & Daddy (& Bodie, who adores you even if it doesn't always seem like it)