Wednesday, July 27, 2016

Making good on a promise

Right before Bodie was born, I made him a baby quilt. It was adorable, a mix of greens and yellows, since we didn't find out his gender until he was born. Sometime over the course of his first 5 months of life (almost entirely spent in the ICU), we lost that quilt. 

Bodie did know now the quilt existed, or that it had been lost. Until last weekend when we had some friends visiting who were remarking about a quilt I had made for their (now almost 11 year old old!) son when he was born. In the context of the conversation, Bodie learned about his quilt and was devastated that it had been lost. When he suggested going back to the hospital to look for it, I suggested instead that I just make him a new one, and he could use it for this hospital stay. He was over the moon when I promised him that I would make him a new quilt for his next hospital stay.

Apparently, my son is like me - put an idea in his head and you better push it through to fruition as soon as humanly possible (preferably sooner). So I told him to go look through my fabric remnants and pick out some fabrics he liked. He did. 

He came back with something totally appropriate...for a newborn baby. Think pastels, sailboats, duckies, rabbits. What can I say? I haven't quilted much in about 6 years. 6 years ago, my friends were deep in baby shower mode.

But baby fabrics weren't fit for a brave 6 year old heading into his 6th heart surgery. So I put out a call into my local mom's group and one super generous mom had tons of cool fabric Superhero scraps she sent my way! The entire front of his quilt was made from her scraps - all Bodie had to do was pick out a design (from the 5 I actually know how to do), and pick out fabric for the back and batting and we were good to go. 

I finished it last night, a little less than a week after picking up the fabrics (and we had company in from out of town three of those days). Think that might be my fastest quilt yet. But this face was my best motivation yet.
I'm a perfectionist. The fabric on the back was stretchy and something I hadn't worked with before. It puckered, it pulled and the borders ended up looking pretty darn awful. I had to resist the urge to pull the stitches all out and start again.

But then, Bodie woke up this morning and said "Mama!!! You finished!!! This day could not get any better now that I have my quilt!" I LOVE IT!!! It is the best quilt ever!" 
I'll take that. 
All of the sudden my criticisms of the quilt fell by the wayside. 
All that mattered was that HE loved it. 
And he DOES.
 The best quilt ever for the bravest boy ever. 
This was a promise I didn't mind making good on. 

When I laid it over him last night as he slept, I couldn't help but pray over him, and ask God to grant him some extra superhero powers for this upcoming surgery. 

Monday, July 18, 2016

The OR is calling

I wish it was something cool, like "the mountains are calling." 
And, I suppose, they, too, are calling.
But at the moment, the call to the OR is stronger and apparently, it must be answered. 
Proper etiquette and all.
Screw proper etiquette.

To reiterate my prior post about this surgery, this is how we all feel about it. 
Bodie's surgical date is Tuesday, August 23rd.

(As a reminder,  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.)

It's a summer surgical date, so we of course take it with a grain of salt (remember Bodie's Fontan was rescheduled 4 times!), but that's the date we have, so that's the date we're going with.

We're getting everything lined up now, just so we know we're covered. Popo Alan and Grandma Jan are coming out from Reno to be with Sierra that week, so we can know she is well taken care of, and she can come to the hospital and visit Bodie (thank you so so so much, Jan and Alan - we're so blessed by your help!). 

If you'd like to help, we actually could use a few things:

1. Bodie will be having a thoracotomy (an incision into his side), which will be a very painful recovery from what we have been told. He will have at least 1 chest tube, but even so, pneumonia is a known complication from thoracatomies, since breathing is so painful. To ease his recovery, we're trying to find some sort of chest support (think, like a post pregnancy girdle, but that can fit around a child's chest), to provide support to his chest while it heals, and to hopefully enable him to breathe easier. If you are a physical therapist or know someone who is who might know if such a thing exists and where I can get one, please please let me know! This is my #1 goal for between now and surgery.

2. Please pray for Bodie's emotional well being. If you can believe it, he is excited about surgery and to get to play in the playroom at the hospital. We are very lucky that he has a very positive life experience with medical things. Even so, it has been 3 years since his last surgery - that's literally was a half a lifetime ago for him. This is big for him. And the pain will be no joke. Please pray that he's able to maintain his sweet, silly disposition that he's known for - and that we'll be able to make this experience as positive as possible for him.
3. Please help us keep Bodie's spirits up. Unfortunately, in all of its "family friendly" rhetoric, the cardiac unit at CHLA does not allow visitors under the age of 12, other than siblings. Which means that Bodie cannot have any friends visit him. He's super bummed about that. But, he would LOVE cards (he's especially a fan of any cards with Legos or Teenage Mutant Ninja turtles on them, singing cards, and the dancing underwear cards (do they even still make them???)). Feel free to email me for at for an address to send them to. I'd love to get a collection to take with us to the hospital, for him to open up at the hospital, to know how much he's loved. Also, he loves videos and FaceTiming - so if you have funny videos you want to send our way, that would be awesome as well. And if you're a friend he/we know personally, I'm certain he would love the opportunity to FaceTime as well! 

3. Please pray for NO complications. Bodie's surgery is at the end of summer, just 2 weeks before school starts. We did this intentionally, so that he could really enjoy summer before being out of commission for a bit. But it also means that complications could make starting school tough. His doctors seem to think being back at school 2 weeks after this surgery is doable. But Bodie doesn't always like to do things the easy way. Please pray for the easy path to be the one he takes this time!
Please pray for the rest of the family. We're all a little uneasy. Of course, saying we're a "little" uneasy is like saying Death Valley is a "little" hot in the summer. We're a lot uneasy. Although we should be very practiced at this whole sending a kid into the OR business, the truth is that it is scary every.single.time. We love Bodie so so so much and cannot bear to think of him having complications. He is our crazy, silly, pain in our butt but we love him SO much we wouldn't want him any other way kid - and we're praying like crazy that the Bodie we send into the OR will be the Bodie that comes out of the OR.
This is hard, guys,
This is, so, so hard.
I try not to talk about it, because, well, it's just not easy to talk about. But my heart is hurting for my sweet boy.

Please pray for peace for Dusk, Sierra and I. Pray for us to daily remember that all of this is in God's hands and that we need to be practicing turning it over to Him daily. We're working on remembering it, but it's not always easy when you're facing big things like this. Of course, we DO know this, we have always known this, particularly when it comes to Bodie. But sometimes there's a little disconnect between the heart and the head. So we'll be spending the next 5 weeks or so working on strengthening that bond. Any prayers you can send our way in that regard would be much, much appreciated. (And, I guess I should specifically say to please pray for God to remind us gently to turn it over to him, not in any huge ole things like our house burning down (his response to my prayers to learn to declutter our house) or sending us another kiddo with a major health crisis (his response when I asked for him to use our family in the Sanctity of Life movement). Sorry, but it had to be said. We've learned our lesson with the big prayers. Ha!)

In the meantime, we plan to continue enjoying the heck out of summer, being so busy that we (almost) forget that we have major surgery coming up! 

Wednesday, July 13, 2016

The Mountains We Climb

As part of our epic road trip, we decided to take a detour to Yosemite. Dusk and I have been multiple times, and absolutely love it there, but the kids had never been. 

When we got there, I thought for sure we were doomed. The only thing this one was excited about was the "Bodie sized stop sign!"
Other than that, he whined and moaned about walking around even the valley floor. I thought for sure we were doomed. But Dusk felt strongly that we should attempt a hike. I voted for an easy hike, like Yosemite Falls. 

But Dusk was insistent that we try a "real" hike, Vernal Falls. 
All I could say was "are you kidding???" 
You see the top of that waterfall in the background of that pic? That's the top of Vernal Falls. If you haven't hiked Vernal Falls, it's not a hard hike per se, and it's not that long, but it's pretty much 1.5 miles straight up. The Yosemite trail maps call it "strenuous" and say it should take around 3 hours. but, if you can make it up, the views are pretty spectacular. Considering we couldn't even take a leisurely walk around the valley, I figured there was no way we'd get up to the top of Vernal. So we figured we'd go as far as we could get and call it a day.  
But wouldn't you know that this kid (who is always in the business of impressing us), and and the rest of us, made it to the top of Vernal Falls???
Granted, he spent some of the hike like this.
And some of it on Dusk or my shoulders.
And we took an inordinate amount of breaks along the way.
But, honestly, he hiked most of it himself. 
He got to the top and said "I MADE IT!!!" (He was apparently as surprised as we were.) 
We could not be more proud of this sweet kid, with his half a heart and asthma and all, trucking along and hiking his way up what must have seemed an unsurmountable mountain. 
The really cool part is that, along the way, we met the sweetest group of high school girls out from New York as part of a camp. They ended up hiking alongside us for much of the hike and were pretty enraptured with Bodie. As they passed us, they would chant "Go Bodie! You can do it!!!" 

At one point on the hike, as I overhead them talking about how Bodie was their inspiration, I gave them a little of his history. They were pretty impressed, to say the least. Bodie was so excited everytime he saw his "friends." At the end of the hike, one of the girls stopped to tell me that she was so impressed with Bodie, and with Dusk and I as parents, that we took him on a hike like that, to give him that experience. I honestly don't take the credit - I think it's more a function of his amazing medical team. They have always encouraged us to let Bodie live his life. We are so indebted to them for that encouragement.

And we are beyond grateful that Bodie is doing as well as he is physically, so that we can push him physically and give him these sorts of opportunities. Tonight, I learned of a sweet girl his age with his same heart condition, Helena, who passed away. I had followed her journey since she and Bodie were both babies. The sadness is overwhelming. These kids are so fragile. It is never lost on me that every moment we get in good physical health with Bodie is a blessing.

And this girl??? 
The reason I don't have many pics of her is that she was about this far in front of us the entire time - and that was only because we wouldn't let her sprint further ahead. 
This girl. A born climber. Not one complaint (other than that we were all going too slowly). This girl has her daddy's genes, that's for sure. 

This girl is going to be hiking Half-Dome someday. The only question is who will be hiking it alongside her - me or my dad (who has already hiked Half Dome multiple times!). 

The moral of our story, if there was one, would be to let your kids lead the way. To challenge them, to never assume they can't do amazing things and inspire you. 
Ours sure did. 
I can't wait to see what they do next. 

Monday, July 11, 2016

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.