Monday, June 27, 2016

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. 

Saturday, June 4, 2016

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!)

Wednesday, June 1, 2016

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!