Sunday, January 31, 2016

Red for our Hero 2016

It's that time of year again - time to wear RED to honor our sweet heart dude and all of his buddies (and, hey, I think we'll also be honoring daddy this year)!
Please help us honor our sweet little dude, his daddy, and all of their heart buddies here and in Heaven by wearing red, along with us, this Friday, February 5th, National Wear Red Day. 
(Yeah, yeah, I know - that's apparently 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 and Dusk on 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 do every year! 

Thank you so much for participating - we cannot tell you how it fills our hearts to see so many supporters showing their love for Bodie and everyone affected by congenital heart defects. 

P.S. If Bodie finds out that you didn't wear red for him and Dusk, there's a pretty good chance that this will be his reaction. 
If you want that on your conscience, that's totally your choice. 
Just sayin.'


Tuesday, January 26, 2016

Working 9 to 5...

The kiddos had "Career Day" at school today. I was so proud of Sierra. In true multitasking free spirit fashion, she chose to dress as a 
"Ballet dancing mother"

I mean, could you die from the cuteness? 
We do love our Ergos in our house.

I just love that she wanted to represent her dream of being BOTH a ballet dancer AND a mama. I am so grateful that, even at 8, she feels a calling to be a mother AND pursue her own dreams, that she understands that the two are not necessarily mutually exclusive. I think that means I'm doing something right. I hope.

And Bodie was there, too. 
As a paramedic. 
Which has been his dream for at least 2 years now. 
It's so adorable.
He's obsessed with ambulances and really wants to be a paramedic. 
(Or, you know, probably more likely the ambulance driver, what with his endurance issues, but hey, we're not killing his dreams at the tender age of 5.)

So, paramedic it was. Except we don't have a paramedic costume. 
So, we just recommissioned his swat team uniform from Halloween 2014. Which totally worked.
Well, sort of. 
Poor kid.

What can I say? He's kid #2. 
I suppose the upside is that we have empirical proof that the kid who refuses to eat is, in fact, growing. 

Friday, January 22, 2016

Working on my average

About a year and a half ago, I wrote a post about being an average mom. Still one of my favorite posts to date. If you want to make yourself feel like a stellar parent (trust me, it'll be like a late Christmas gift to yourself), you can check out the blogpost here. I'd love to say I've moved into the B (or heck, I'd take a B-) category, but I don't think I have. But it's not for a lack of an effort!

For instance, this is my "light reading" stack on my bedside table. 
(To be fair, I've actually finished the top 4. I can wholeheartedly recommend all 4- really great books. Oh, and I also read "Where'd you Go Bernadette," but can't find it at the moment. Also, a fantastic read.

But I digress. I have found a reoccurring thing in two of the books so far (in For the Love and Love Does). While they equally inspire me and make me feel like the most lackadaisical parent on the planet because I'm not trekking my kids to London on their 10th birthdays, one inspiring thought keeps hitting me. 

What inspires my children? Not "what do I think inspires them, but what truly sets their hearts on fire?" 

Because the latter is a different kind of question than the former. The former we dream of from the moment we find out we're pregnant, going to be bringing another soul into the world. We imagine they'll be like us, and that what inspires us will inspire them. Because after all, I am a perfectly reasonable and cool human being, so why wouldn't my children be exactly like me?

But then, somewhere in the child rearing experience - somewhere between birth and 5 or 6, you start to see a new person emerging, someone who has their own likes and dislikes (ok, that starts approximately 5 seconds after they've exited the womb), but also someone who in inspired by things maybe you are not inspired by. And that lesson comes later.

So I've been really trying hard to listen to my kids, to do that whole intentional parenting thing everyone is raving about (which is apparently a thing and super important, but also kind of stinking hard to actually do it). I've been listening to the things my kids are saying about what they're interested in and inspire them.

I'll be honest - for a 5 year old boy, that list is pretty short. Star Wars and Legos. I'm serious. That's it.

But as I've been digging deeper, I'm seeing a real interest in the fine arts, by both of my kids. Nice that they inherited it from Daddy, since they certainly weren't getting that from me! But Bodie loves art and really spends a LOT of time on it. I can remember his preschool teacher telling me she would always have to make sure Bodie started his art with the earlier group of kids, because he would always be so meticulous and make sure his was exactly the way he wanted that he would take the most time. 

And this week, his teacher showed me this.
Pretty cool, huh? Not sure whether the heart on the chest was intentional was not, but I'm pretty much digging that.

And Sierra LOVES art, and ballet, and is becoming quite the clarinet player. We're having so much fun watching that part of her blossom.

So this week, when the kids had the day off school, I decided to take them to the Art Museum. And let me tell you, the kids were in utter bliss. 
I was worried Bodie wouldn't do so well, since he doesn't quite get the whole "look with your eyes, not with your hands" concept. But, I tell ya, he so did. Didn't touch a thing he wasn't supposed to, and kept running from exhibit to exhibit, loving them all. And Sierra wanted to stay in every room a bit longer, talking about the artists she is learning about in school.

And both of my kiddos were really taken in with the modern art exhibit. Which I stumbled into. On accident. Because that's the only way you're getting me in a modern art exhibit. So not my gig. Seriously. Clearly not in my genes.
I mean, c'mon - a giant comb. Why? Just…why?

They were obsessed with the color light exhibit (as was I - totally amaze balls)
(for the record, this is the only place Bodie is allowed to be this blue.)

and the children's art center, where they got to paint something themselves.
The kids were brimming over with excitement and cannot wait to go back. I was sort of blown away - I'm not sure what I was expecting, but it wasn't that. I guess it just goes to say - a little bit of intentional parenting goes a long way. Because these kids walked away inspired and moved. And I walked away with a little better appreciation of what inspires and moves them.

If you have kids, take some time to look inside them and find out what inspires THEM. Not just what you think inspires them, or what they're good at. Sometimes what they're good at IS what inspires them. But sometimes it's NOT. And part of our job as parents is to help them discern between the two. Except it's hard to remember in-between getting homework and extracurriculars managed, getting kids fed, vitamins in and teeth brushed, and kids to bed at a decent hour. Sometimes, we get so boggled down by the day to day mundane that we forget that we are actually raising people, who yes, need to be able to prioritize schedules and get along with others and wipe their own butts after going to the bathroom for Pete's sake. But, somewhere along the way, we need to also teach them how to figure out what inspires them, shapes them and will ultimately guide their lives. 

Kind of a tough job for us average parents, but I think we can do it. I hope.

I'll leave you with this quote from Love Does, which spoke right to my heart and inspired me. I hope it does for you as well.

"I think that's because, He (God) has the same kind of relationship in mind for us that I had in mind for my kids. I think a father's job, when it's done best, is to get down on both knees, lean over his children's lives, and whisper, 'Where do you want to go?'" 
- Bob Goff, Love Does


Thursday, January 14, 2016

The kid's got rhythm…and I've got PTSD.

Dusk and I have a ritual. There is a Wendy's across the street from CHLA. Every time Bodie has a surgery, once we have sent him off to the OR and know there will be no updates for a couple of hours, we pull ourselves together and head over to Wendy's, where we eat lunch - usually around 10am. (In our defense, Bodie is usually first case, so by the time we've gotten up at the crack of dawn, driven up to CHLA, spent a couple of hours in pre-op and been completely traumatized by handing our son over, it feels like lunchtime. Actually it mostly feels like vodka and a meltdown time, but that's a whole 'nother Oprah. So we settle on Wendy's.) 
Anyway, Wendy's.

Bodie had an appointment at CHLA today with his electrophysiologist and as we drove by Wendy's, I had this rush of emotion and blurted out "I HATE THAT WENDY'S!!! I mean I really HATE that place!" For real. Can you say ptsd much? I mean, really, what is there not to love about Wendy's? Amazing chicken sandwiches, great salads, and don't get me started on the Frosty's. But, yeah, that one apparently has waaaaay too much anxiety associated with it to be on my favorite list.

The thing is, I've driven by that Wendy's 100 times, and never had any sort of reaction. I think that's because we've always been so connected to CHLA, with regular doctor's visits and Family Advisory Council meetings. But we haven't been there much lately. For a variety of reasons, I've backed off from my Family Advisory Council role for some time now. And Bodie is in a good place. A really good place. We're only up at CHLA for bi-annual electrophysiology and pulmonology appointments right now. Not bad for a kid who spent his first 5 months inpatient and was in and out of the hospital after his last surgery. I think now, being in a good spot physically, we're just not there as much and my mind is having time to actually have PTSD (as opposed to what I lovingly refer to as "DTSD" or DURING Traumatic Stress Syndrome). This might be the first time someone is excited to have PTSD. 

So, there you go. 
Apparently I have PTSD, hate Wendy's and like Vodka. 
Little known facts about me.

But I digress.

As for this little dude's appointment, it went fantastic. 
His heart rhythm looked great, he's pacing most of the time (91%, which means he's tachycardic less than 9% of the time). As recently as a year or two ago, he was tachycardic for 25-50% of the day, so this is HUGE. His med cocktail is working, he's growing, and his rhythms are good. We know surgery WILL be happening sometime in the future (not open-heart, but heart surgery nonetheless to disconnect the nerve that runs adrenaline to his heart, to reduce the risk of serious adrenaline induced tachycardia), but for right now, it's still on the back burner. When it moves to the forefront and with how much urgency will really depend on Bodie's heart and when we start to see indicators of increased unwanted ventricular activity. And we're ok with that. 

And then we all just stood around in awkward silence, trying to figure out what to do when we didn't have crazy rhythm issues to discuss for an hour. 

So, pretty much the best end to an appointment ever. 
We seriously love Bodie's team so much.
We're super blessed to have such smarty pants minds managing Bodie's rhythm issues. 
And the fact that they all loved his shirt just makes us love them even more.
(for the record, it reads 
"Suck it, natural selection
I'm still here."
I'd say that about covers it.)