Wednesday, July 29, 2015

Thoughts on Boston

Bodie is currently on his second morning of testing here in Boston, and in between the appointments, the kids and I have been having a ball here in Boston, doing just about every big touristy thing we can! Yesterday alone, we walked over 9 miles! Needless to say, we will be dragging ourselves onto the plane to South Carolina this afternoon!

Lots more on our Boston experience later (when I can wrestle the laptop away from Sierra!), but a few initial thoughts on Boston:

1. This city is beautiful. I mean, absolutely gorgeous. The history, the landscape, everything is breathtaking. I understand why people come here for school or a job and never leave.

2. The people of Boston are amazingly nice. I did not expect that, to be honest (not sure why, I just didn't - maybe because you hear about the "hospitality of the south" more than the northeast?). They have so much pride in their city (kind of the polar opposite of Los Angeles, where the cool thing is to complain about it!). The excitement at the Red Sox game last night was palatable - it was impossible not to be giddy with everyone else! And everyone who helped us (the servers at restaurants, cashiers at stores, etc.) Were so so nice and accommodating - they Really went out of our way to make sure we were happy and taken care of. And people actually let you in traffic (I know, crazy, right??? I'm used to LA, where you risk life and limb just trying to merge!)!

3. Ok, guys, notwithstanding points 1 and 2 above, would it kill you to have street signs??? I'm not afraid of traffic (thanks to years of LA traffic), but it is freaking impossible to drive in Boston. Even WITH GPS and my maps app, I still got lost multiple times. My GPS would be telling me to turn, but there'd be no street sign to confirm that I was in fact turning onto the street I was supposed to be turning onto! Ha!

4. "It's not the heat, it's the humidity." <- clearly spoken with the City of Boston in mind. Enough said.

All things considered, we have loved Boston and it has for sure been one of the highlights in an already great summer!

Friday, July 24, 2015

The scars you don't see

“Scars have the strange power to remind us that our past is real.” 
― Cormac McCarthy, All the Pretty Horses

We were at the fair yesterday, me and the kids - and I grabbed Bodie's hand to try to keep him from running away from me. I looked down at his little hand, seeing the light glinting off his little hands and wrists. And once again I saw the faint lines on his wrists, a nonchalant reminder of so, so many hospital stays.
An untrained eye probably wouldn't even look for them, let alone know what they were if they saw them. But a parent who has been there knows. A parent who has held tiny hands connected to tubes and wires. I see the tiny lines. And I remember the cuts that made them. The cuts that brought life-saving drugs into my child's body, time and time again.

They're cut-down lines. At least I think that's the term (or maybe not - but I heard it somewhere in reference to his lines). Whatever it's called, it's where iv's and lines have been placed and removed. Bodie has them in his wrists, in his groin, in his neck. Heck, probably other places I've never thought to look. But his wrists are the most prominent. 

Everyone knows about Bodie's central incision scar, and his chest tubes (those honestly are worse than the central incision!) and pacemaker scar. And, thanks to consistent use of doTERRA essential oils and good ole fashioned time, they're looking pretty darn awesome.

But it occurred to me as I looked at his wrists that he has so many other scars that aren't so obvious. The  tiny marks on his wrists, neck, shoulder and groin. The ones on the inside - where his heart has been broken and mended, where it has been cauterized chasing an arrhythmia that wouldn't be caught. The ones on his mind, on his soul. The ones we can't see, but we're trying fervently to help him heal. Nothing like going in blind, right? 
So.Many.Scars on Such.A.Little.Body. 

We leave tomorrow morning for Boston, to take the next step in working on healing some of the scars we can't see. 

Tonight at dinner, we talked about it. And Bodie looked all over his body, trying to find more scars. And we talked about what scars are - just proof of something he has battled, something he BEAT
We'll take that any day. 

And besides, chicks dig scars
Thank goodness for that.

Monday, July 20, 2015

Boston Bound

As the parent of a medically fragile child, I feel like the battle to advocate for your child never really ends, even when it's not at the forefront of your mind. This is one of those times.

You may have heard that the kids and I are headed to Boston this weekend and it's true. We're headed to Boston Children's, to have some specialized testing done on Bodie, and then heading from there to South Carolina, to catch up on some much needed time with some very, very dear friends!

I have had several people ask me why we're flying all the way to Boston to have Bodie tested, when he's doing so well. And if it means we're leaving CHLA or are somehow unhappy with our team there. And those are totally legit questions. He IS doing well. Really, really well. Physically, we're on good even ground. He's on a 3 month visit schedule with his cardiologist and weaning down nicely off of his Sildenafil. He's even in a good space electrically, with less EAT than we saw a few months ago. Things are nice right now.

But he's headed into kindergarten, and, for a lot of complex chders, the school age years are where the rubber meets the road, where the physical issues fade to the background (for a time, at least), while the emotional and intellectual issues take the focus. Sisters by Heart recently shared a wonderful article written about this very subject, which you can read here and which gives you a really good idea of some of the things Bodie is up against. 

But for us, it's more than a risk. Bodie is such a sweet kid - and so stinking smart. And very, very funny. We love him so much. But, we have seen things with Bodie that are red flags for us - impulsiveness, anxiety, low frustration tolerance, and on and on. Honestly, all of what we see in Bodie could be normal 5-year old boy stuff. But all of it also lines right up with what you expect to see in children who have been through what Bodie has been through. Heck, it's stuff you expect to see in kids who have been through less than Bodie.

Luckily for us, and many heart families like us, programs are sprouting up across the country that deal with exactly this - the neurological and emotional impact of complex congenital heart disease. There is a growing body of evidence suggesting that the complexities of children with complex congenital heart defects are often missed by traditional therapists, so the focus is amazing. Programs that provide evaluation, and support, and resources just for kids like Bodie! It's exciting and wonderful that these resources exist. 

Unfortunately, we don't have any such programs out here near us yet. So, we have to travel to have Bodie evaluated. And, since we have to travel anyway, we figured we'd go to the best, which is Boston Children's. 

So, Bodie is going to be evaluated by BCH's Cardiac Neurodevelopmental Program next week, which provides comprehensive, evidence-based neurodevelopmental assessment, second opinions, consultation and intervention services by a team of specialists, all of whom are focused solely on cardiac kids like Bodie. 

We're really excited to hear what they have to say, and, more than anything, to walk away with some concrete suggestions of areas they expect Bodie to struggle in school and HOW specifically we can help him, how we can discipline him effectively, and how he can best thrive. How great is that???

And why are we doing this now? Partly because right at the cusp of his educational career made the most sense. Why not get ahead of the ball and set him up early for success, rather than waiting until he's been struggling for a few years? And, honestly, partly because, thanks to Dusk's heart attack, we've already hit our out of pocket insurance maximum for the year, so why not? We have to take the good where we can get it! Ha!

We leave Saturday and we appreciate prayers for travel mercies and sanity for me (I am traveling alone with the kids while Dusk mans the fort back home!), that Bodie is cooperative during testing (please oh please oh please) and that we get some answers for our little man! We have worked so hard to get Bodie to this point. We've fought for his life - now it's our turn to help him make that life the best it can be. 


Wednesday, July 15, 2015

Our Karin

So, this is Karin.
I'm sorry, let me correct that. This is OUR Karin.

She's kind of amaze balls. I mean, totally. 
She loves our kids. They love her. She loves us. We love her. It's really one big love fest.
No, seriously. She came to us on recommendation 3 years ago as a babysitter. And, over the course of the past 3 years has become so, so much more. Yes, she babysat our kids so we could go out on dates. And anniversary trips out of town (if you know Dusk and I, you know we don't trust many people to watch our kids overnight, but Karin is at the top of the (very short) list). 

But she also was one of Bodie's first sitters when I went back to work, encouraging him to be ok with mommy leaving, and loving on him a little more when he wasn't.

And she also took Sierra to the American Girl store for lunch. And shared her love of the dolls and stories. 

She taught our kids about Jesus, and read them Bible stories, and sang praise songs with them. 

And spent the night at our house before Bodie's recent dental surgery so that Sierra didn't have to get shipped off to a friend's house at our call time of 4:30am (yeah, Karin - sorry she jumped in bed with you!). 

And visited Bodie in the hospital when he was recovering from the Fontan, and blessedly distracted Bodie while I went into the bathroom to cry because they were putting him back on oxygen.

And came and played with the kids and swam with them in the pool at the hotel days after our fire, when our heads were spinning and Dusk and I didn't know up from down.

And watched our kids and held them together when Dusk and I were at the OB's office, getting ready for my D&C last summer.

She has been our safety net, the calm in the midst of the ridiculous number of storms thrown at us over the past few years. We thank God so much for placing her into our lives exactly when He knew we would need her most.

She has gotten to know our kids, their likes and dislikes, strengths and weaknesses.

She has gotten to know me and my eccentricities, which is probably a harder task than getting to know the kids. (Anyone who knows me knows I'm not kidding - I once refolded a load of laundry in front of my mom because she didn't fold it the way I usually do - perhaps eccentricities is too nice a word. Control freak might be more fitting? But I digress…Let's just say that I never had to refold Karin's folding jobs! Ha!)
Last summer, when we were in a rental home and dealing with the aftermath of the fire and things were overwhelming, she kept our household running on days I went to work. She just intuitively knew what I needed, what our family needed, and was THERE.

I think everyone in Karin's life feels like she's "their" Karin. She has that special gift, that way of making people feel like the most important people in the world.

But we know the truth - she's really ours

We love Karin. And she's leaving us. 

We had our last dinner with her tonight. 

In LA, everybody leaves. It's the big giant ball of fun that living in LA is. 

But she's leaving for NOT the typical reasons (you know, not wanting to live in a shoebox, not wanting to sit in the car for days on end, etc etc.). 

She's leaving because God has called her and she said "yes." She is leaving to homeschool missionary families in Mozambique.

How amazing is that???

This beautiful young lady is taking a year out of her life to go heed God's call. We can only hope our kids will have such a love of God and His calling when they grow up. 

And we couldn't be more proud of her or excited for what lies ahead.

And, ok, more than a little sad because we won't have her here.

Please join us in wishing Karin well and praying for her in the year ahead. Pray for God's guidance, for travel mercies, for peace - and for Him to bring her back to us soon! 

We love you, Karin!