Sunday, August 31, 2014

The Tally.


11 years of marriage. 
7 miscarriages.
5 heart surgeries.
3 pacemaker placements.
3 houses.
3 church "homes."
3 weeks unexpectedly spent in a hotel.
2 kids.
2 preschools.
2 hip replacements. 
2 sets of ear tubes.
1 massive house fire.
A GOD WHO KEEPS BINDING US TOGETHER.

This marriage thing is tricky, but, I tell ya, if you have God at the center of it, it's a whole lot less tricky.

Someone once told me they didn't believe there was a "right one" for everyone; but instead, the one you choose to "work to make it right with."

Thanks for choosing on August 31, 2003, and re-choosing every day since then, to work to make it right with me, babe. I love you. 
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Monday, August 18, 2014

Pictures DO lie.

You know those days, where there is no word to describe you but "DONE"? I had one of those days today.

To be truthful, I probably rolled out of bed already "done," but let's not talk about the sugar detox Dusk and I just started. But today was as if the universe conspired against me to make it a mass day of chaos.

We started with dental appointments. Both kiddos did great. The dentist did mention something about a "sliding bite" and "possible future orthodontia" for Bodie. But, as far as I'm concerned if the kiddos are brushing their own teeth 90% of the time (i.e. I don't have to manhandle the toothbrush to get them to do it) and they don't have cavities, it's a successful visit. 

We then went from there to back to school haircuts and shopping. It seemed like a good idea. I swear, it really did. Maybe it was the lack of sugar that made it seem like a good idea to take both kiddos out school shopping, knowing full well I could have bought everything online - and that Bodie, just going into pre-K, wouldn't actually need any school supplies, so would be asked to come along and watch me buy tons of stuff for Sierra, and nothing for him. But, like I said, it seemed like a good idea, so we decided to try it.

So we braved Supercuts, Target, Office Depot, and Old Navy…all in the search of 
- New school uniforms for Sierra (whose legs, apparently, are 2 inches longer than the average size 7 child, so she'll be starting the year already in violation of the dress code in skirts that barely pass her thigh. Awesome.). 
- A new backpack. Which is fine, except that she's decided she has to have a rolling backpack. Which is fine, except that no one around here has them. Thankfully, we finally found one, but honestly, it was after going to 6 different stores in the last week. (Again, why didn't I just flipping try Amazon???)
- A laundry list of school supplies, located in the back of each store, past (of course) the HALLOWEEN costumes, forcing us to have a discussion (i.e. fight) about Halloween costumes. In August. C'mon peeps. Cut the moms a break. Can we get through the back to school chaos before we have to start thinking about Halloween costumes? Puhlease. 

We eventually found everything we needed, but not without buying a few things for Bodie that he didn't need. And without me just about having a breakdown in the middle of the Old Navy dressing room, trying simultaneously to wrestle Sierra into a button down shirt and steal a Teenage Mutant Ninja Turtle ball away from Bodie, who was throwing it against the walls of the dressing room nonstop. Can I stop to ask WHY Old Navy carries random balls, or WHY they make you pass every possible toy or random junk in the store to get to the fitting room? 

Wait, I know why.

To kill mothers like me. 

Moms who are just, 100%, unequivocally, done before they ever even get to the checkout lane lined with even more crap no one on the planet actually needs, but which apparently is ABSOLUTELY NECESSARY TO THE EXISTENCE of 4-year olds and 7-year olds.

So, there I was. Sitting in the dressing room with both kids, thinking how nice it would be to be transported somewhere else, just for a second. Or, heck, at least maybe they could serve wine in the fitting rooms? Really - is that too much to ask? 

I was D.O.N.E.

And then, as if they could sense that mom was about to lose it, Sierra sat down on my lap and Bodie jumped in behind me, to give me the biggest hug ever.
Best.Moment.Ever.

And what I love so much about pictures is that, years from now, when I look at this picture, I won't remember that Bodie was being BEYOND annoying, or that Sierra was being persnickety and not wanting to try anything on. Or that I just wanted a freaking candy bar.

 I will remember how excited they were to be school shopping, Sierra all abuzz about starting 2nd grade, and Bodie obsessed with "Teenage Mutant Engine Turtles" as he calls them.  

I will remember how lucky I was that my husband worked so hard that I could stay home with the kids, and not miss these moments. 

I will remember how lucky I was that both of my kiddos were alive, and thriving, and happy - with enough energy to love back to school shopping. 

So, as it turns out, sometimes pictures DO lie. 

And that is totally OK.
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Wednesday, August 6, 2014

Make a Wish, Part 4. Family Takeaways


I wanted to wrap up this series with a few notes about exactly what Bodie's wish trip meant for us.

But I am stumped. 

Because it's so hard to put into words what it meant.

Bodie has spent so much of his life in the hospital. Although we have made every effort to give him as "normal" of a life as possible; and by most measures, he leads a typical life, his life includes so much that his peers lives simply do not. 6 daily medications, twice a day. Holter monitors and blood draws. Inpatient stays to change medications. Open freaking heart surgery. Times 5. Cardiac catheterizations. Again, times 5.  Regular appointments with his Pulmonologist, ENT, Cardiologist and Electrophysiologist. 

So, to have something celebrating Bodie and everything he's been through, but not have it be medically focused was HUGE. And humbling. And, just, amazing for us.

Sure, we focused a bit on the medical side of things. That's inevitable with Bodie. Like, on our first night there, when he was so excited after meeting Pluto that he ran off, tripped and face planted, causing a big ole fat lip and hematoma under it. True story. Nurses visit, check.

Or, a few nights in, when he woke up at 5am burning up, shivering and shaking. It was clear he was running a fever, but, for the first trip ever, I had forgotten his thermometer and we were down in Anaheim without any sort of transportation for me to run out. So we called the Disney nurse. He didn't have a thermometer (if you're a benefactor and would like to donate to a worthy cause, apparently, giving thermometers to the Disney's nurses is a good once, since it seems like a given that they'd have them, right???), so we didn't know how high it was. So they opened up the hotel store so that we could grab some Motrin and bring the fever down.

So, we had our moments where we needed to focus on the medical side of things. 

But, really, this trip was about so much more. It was about celebrating this boy, who against all odds, is still here with us, thriving and loving life.
 
And, our whole family.
Because, really, it wasn't just Bodie that's been through all of this. 
Yes, he's the one with the physical scars.
But, we all bear the emotional scars.
The scars of fear in watching everything Bodie has gone through, of having our world turned upside down, of being separated as a family for months on end. 

So, to have this time, as a family, to focus on one another, to watch our children shriek with joy, to make memories together, to JUST BE, was incredible. To have the weight lifted of the last 5 years, if even just temporarily, was tremendously healing.
Such a gift.
Every ride we went on where this little guy had his hands up, just loving the moment and life, I had to catch my breath. 
I remember thinking "I just want to remember this moment forever." 
Because, really, that's what Make a Wish is all about. 

We let Bodie pick the last ride of the trip. 
He picked the Ferris Wheel (much to my chagrin; as much as I love roller coasters, ferris wheels push me over the edge - the constant stopping, hanging there and just waiting to fall out is just too much for me). 
He chose to sit with me, and Sierra sat with Daddy.
I thought it was so fitting that he chose me for his last ride of his Make a Wish trip.
Bodie and I have spent countless (and I do mean countless) hours together during his medical journey. I have been the primary parent by the bedside, while Dusk kept everything handled at home and made sure Sierra was faring well.

So, as we rode around and around that ferris wheel, my mind spun with images of times spent at Bodie's bedside in the hospital. And then I looked down and saw his bright eyes and eager smile looking up at me and I knew.
 THIS is what Make a Wish is all about.

Thank you, Make a Wish for this extraordinary experience.

We will never forget it. 


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Monday, August 4, 2014

Make a Wish, Part 3. The Make a Wish Touch

(Sierra's badge, glammed up by one of the stores)

When we realized Bodie's wish was a trip to Disneyland, less than an hour away from us and a place we had taken the kids to before, Dusk and I were a bit hesitant. We honestly wondered whether there would be something special and unique about this trip, something we couldn't provide him ourselves. To us, the whole point of the Make a Wish trip was to give a child something spectacular that the family couldn't provide, an experience the child would never forget.

An experience of a lifetime.

Make a Wish delivered that, and more.

There were a million things about this trip that made it unforgettable, that made us never want to leave.

For one thing, the special pass we got, that enabled us to go in the exits and bypass most lines. That pass alone made this trip unlike any other. When we first heard about it, I thought "I'm not sure we'll need that. I mean, Bodie can stand in line." But, honestly, I was wrong. It was hot, and a lot of the lines don't give much shade from the heat. The poor kid was already pretty done by the end of the trip; I can't imagine him standing outside in the lines all day long with his cardiac condition. He wouldn't have made it. It's that simple. To be able to flash that pass and bypass the lines was incredible; for our sweet boy, after all his struggles in life, to be able to just hop on any ride he wanted was one of the most incredible things we've ever seen. 
THANK YOU, Make a Wish.

Beyond that, there were a lot of other neat touches. 

For one thing, our hotel. Make a Wish put us up in a Disney resort property overlooking California Adventure. We've never stayed at a Disney resort before. I don't know if we ever will again. So, for our kids to get that opportunity, the special touches of everything being Disney themed, was so so cool. 

And, I mean. This view. Bodie about peed his pants when he realized this was the view from our hotel room.
It looks like a postcard, right?!? 

And Make a Wish arranged for a few special meals for us, including dinner the night we got there at Goofy's Kitchen, where the kids got to see some of their favorite characters. It was the PERFECT way to kick off this amazing vacation - it got the kids super excited!
(Princess Jasmine actually escorted the kids over to the dessert table and helped them pick out their desserts - I don't know who was more excited - Bodie, Sierra - or ME!)

And breakfast one morning at Mickey's Cafe. 

Make a Wish also gave us spending money for all of our meals…and souvenirs for the kids. This was HUGE, since we don't often buy souvenirs for our kids. I'm not sure why, except that we just don't. So, for them to have their own spending money to buy ANY souvenir they wanted, was just such a cool experience for them. 

Sierra picked out an adorable tank top (with a matching one for mommy!), an Elsa shirt and an Elsa doll.
(again, that view from our hotel room?!? Perfect viewing of the color show at California Adventure!)

With his souvenir money, Bodie went to a store at Downtown Disney and created his own Mater, to match the Lightning McQueen wish grantors had brought him when they told him about his wish!
(I didn't get the whole process; something about tires and rims and a chassis and everyone clapping when he was all done - but let me tell you, this kid was IN HEAVEN).

Our wish passes also allowed us to bypass the lines for character meet and greets, which was amazing in and of itself.
(anyone who knows Sierra well knows that Tigger has been her lovey since she was 8 months old, and her constant companion as she falls off to sleep at night, sucking her thumb; so this picture was pretty flipping awesome)
(We had a VIP pass at Knott's to allow us faster rides and Meet & Greets as well!)

And the creme de la creme of the character meet & greets? 
This.
Yep, this happened. 

We had been warned that our wish passes wouldn't work for Anna and Elsa, and to expect a 1-3 hour wait. I had heard from others at the park that it was more like 3-4 hours. So, we had managed Sierra's expectations before the trip, letting her know we might not actually get to meet Anna and Elsa. 

So, at the end of the day on Tuesday, I stopped by the Anna and Elsa Hut (the line was closed for the day, but they were finishing up the last 20 or so people in line) to find out what time it opened on Thursday so we could figure out whether we wanted to attempt it. Well, as it turned out, they had enough time left that they actually did accommodate our wish passes, and the kids were able to see them after all!!! 

Bodie was BEYOND excited to see them and squealed "I GET TO MEET ELSA???" seconds before they opened the door for us; and then he promptly threw himself into my arms and refused to even look at them for the remainder of the meet & greet. 
Ah, well, I guess it was just too much for him. 
As Elsa kindly told him, "It's ok. Sometimes, I freeze up, too." 

But Sierra was in seventh Heaven. 

Finally, at Disneyland, Make a Wish arranged for a transformation for both kids. Bodie transformed into a Knight, and Sierra into a princess. Again, this is something we would have never done on our own, so what an amazing gift for our kids.

Bodie glimpsing himself for the first time.
Sierra glimpsing herself for the first time (with a photo bomber in the background!).
Our newly minted knight and princess.

And there is so much more that MAW did for us! 
Like the limo ride to Anaheim and back! 
And the chocolate dipped Mickey Ears in our hotel room on the first night.
And the VIP treatment at Disneyland, California Adventure and Knott's Berry Farm just from our association with Make a Wish.
I could go on and on. 
So, so many little touches that made this trip spectacular.

I wish there was a way to thank Make a Wish for the incredible trip that we had.
For all the little things they did to bring these smiles to us.

Thank you, Make a Wish.
We are eternally grateful.
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Sunday, August 3, 2014

Make a Wish, Part 2. Our Adrenaline Junkie

From the stunts that Bodie pulls on a regular basis, we had a suspicion that he liked fast things, but Holy Toledo, we had no idea just what an adrenaline junkie this kid is!
I mean, seriously.

One of the amazing things about the Make a Wish trips to Disney is that you get a pass that allows you to bypass most of the lines and sometimes stay on the rides to ride them again. So we really had an opportunity to find out what Bodie liked to ride. 

Which was pretty much everything.

The bigger, the faster, with the biggest drops, the better. 

This kid (and Sierra) went on every single ride he was tall enough to ride (ok'd by both cardio and EP before the trip)! He is still bummed he wasn't tall enough for Indiana Jones (Sierra went with daddy on that one and loved it!)! 

Both of the kiddos loved Thunder Mountain (I mean, who wouldn't?!? So awesome!). I think we rode it 3 (4?) times in a row before we had to stop because Daddy was getting too dizzy. But if it had been up to the kids, we'd have ridden it 4 more times!

He LOVED Splash Mountain, and insisted on riding in the front.
 
(as you can see, he wasn't alone in his love of roller coasters!!!)

And, the epitome of roller coasters, SPACE MOUNTAIN!!! My favorite roller coaster…on.the.planet.

Daddy isn't a fan of Space Mountain, so we weren't going to attempt it. 

But then, Daddy had to run back to the hotel for something, and, really, is it MY fault that my feet took us, totally not of my volition, to the entrance of Space Mountain? And, since we were there, we should at least try it, right??? Totally not my fault. At all.

So we did.

The kids beforehand - they were super excited.
About ½ way through, I leaned over to make sure Bodie was ok. I was a little worried it may have been too much for him. I asked him if he was doing ok. All I could hear back was "AGAIN!!!!!!" as loud as he could. And the HUGEST grin when we got in. 

He is so my kid. Such a roller coaster fan. And riding these big ole rides at 4½? Color me impressed. 

And Sierra? She rode ALONE on Space Mountain (at 7½), since it was a 2-seater and I rode with Bodie. And she wasn't scared AT ALL. Mostly just irritated that I had my hand on her shoulder the whole time! Ha!

This was on a "flyer" at Knott's Berry Farm. As in, lying on his belly, being raised in the air and flying around in a circle. And he COULD NOT GET ENOUGH OF IT. Loved it. 
Also at Knott's Berry Farm, on a roller coaster with Sissy. I went on it once, and I'm pretty sure every internal organ got a massage (they apparently are serious about that whole 5'9" height limit!). But he was such a big boy and totally didn't need Dusk or I next to him.
Our fourth time in a row on the log ride at Knott's. I'm pretty sure Bodie is pouting because Sierra got to ride in the front that time. 
You know how they say one person always gets drenched on those water rides? Yep, it was Bodie. And he was thrilled!
Finally, I'll leave you with this ditty. Our hotel had a pool, with a waterside. Which the kids went on. Over and over and over again - pretty much until the lifeguard stopped Bodie to ask if he was cold because his lips were pretty purple (something about being on a water slide at 8pm on a windy day!). This video was taken his first time on it (or any water slide, for that matter). He LOVED it.
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Seeing how much Bodie LOVED the roller coasters, and LOVED everything Cars themed completely affirmed for us his decision to have picked Disneyland and Cars Land for his wish trip. What a phenomenal vacation for him (and all of us)!

Stay tuned for more about our amazing trip tomorrow!

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Make a Wish, Part 1. Bodie, Meet Lightning McQueen


Bodie had his wish trip last week! It was AMAZING. I mean, seriously, completely and totally amazeballs.

To be honest, his Meet and Greet with Lightning McQueen and Mater ended up not even being the highlight of the trip, because the rest of it was just so dang amazing, but I have to start somewhere in blogging about it, so I figured his actual wish was as good a place as any to start!

Bodie's wish was "To Meet Lightning McQueen and Mater." And meet them, he did.

We got to Anaheim on Monday afternoon (so time to play at Downtown Disney!) and Bodie's meet and greet was Tuesday morning. There was a little miscommunication at California Adventure, and they weren't expecting us at the front gate when we got there at our call time of 7:30am. But after a few conversations and phone calls, we were let in and away from the crowds over to Cars Land. If you haven't been there, Cars Land is INCREDIBLE. As in, you feel like you're stepping onto the movie set itself!!! Bodie was sorta beside himself, and the rest of us were pretty psyched as well.
(waiting with eager anticipation for his Meet and Greet)

We were there with one other wish family whose son also wanted to meet Lightning McQueen. While we were waiting for the Meet & Greet, both boys (and the families) were let on to the Mater Tractor Tipping ride. Since we were the only ones (outside of cast members) in Cars Land at the time, that part was super fun! (I mean really, to have a ride all to yourself at Disney??? We kind of had to pinch ourselves!)
(Bodie and daddy on the ride)
And then Mater and Lightning McQueen rolled in, and Bodie was in Heaven. He got up close and personal with both of them, and took lots and lots of pictures. 
Then, Bodie discovered that Mater had a plush Lightning McQueen and Mater for Bodie on the back of the tractor. Bodie was SO excited - those stuffed guys didn't leave his side for the duration of the trip! (It's amazing we were able to keep track of them!

I think we had about 10 or 15 minutes with the cars before Cars Land opened to the general public, which was a pretty cool experience. Then, we got to watch them "open" Cars Land, which is a sight in and of itself (they have all the guests and cast members behind a rope and march through Cars Land). 

And then we were off to enjoy the parks!
Even though his wish was technically "over" at that point, it was really just the start of an incredible vacation that was so much more than meeting Lightning McQueen and Mater!!! More pictures and stories to come!!!

(Bodie with "Far Away Stanley" as he calls him - he had been asking all week whether he'd get to meet him, so I was thrilled to see that he would be able to!) 
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