Tuesday, December 30, 2014

In Celebration of Life

We're going on a family trip to Mexico in February (oh my goodness!!!), so we realized we needed to get our passports in order. Dusk and I needed to renew ours, and we needed to get the kids passports. In the hustle and bustle of pulling everything together for that process,

 (on a side note, have you ever had to renew or apply for a passport? Holy Toledo, they do NOT make the process easy. Pages and pages of application, but hey that's government for you. But I digress…)

I realized we didn't have a birth certificate for Bodie. As in, we had never gotten one. We had a certificate of live birth from the hospital, but not an authorized certificate from the county. 

I don't know how other states do it, but in California, it's not an automatic thing. You actually have to apply for the certificate. It's usually done in the hospital after birth, but, yeah, well, we had other things on our minds at the time.

Dusk said to me "What do you mean, we don't have it? How did we miss that?"

I just stared at him blankly.
 Was he kidding? Was he not there when Bodie was born?

He paused for long moment, and then quietly said "Yeah, I guess when you don't know if your child is going to live a week, you don't exactly worry about things like a birth certificate."


Boy did that ever throw me back to how awful things were with Bodie in the early days, and how touch and go things were for so long. (and if you haven't been following our journey for very long, let me just say, things were very rough for a good 7 months or so). 

He's so robust now, so amazing and full of life. If it weren't for the purple tinge his lips get on colder days, or the scars that mark his chest, I could almost forget everything he went through. 
It could almost be someone else's story.


So, to pick up his birth certificate today was, just, so. So. So everything. 
The 45 minute wait at the courthouse couldn't even take the joy out of the moment.

To us, this is so much more than a birth certificate. 

It is a celebration of birth, yes. 
But also a celebration of fight, of endurance, of tenacity beyond measure. 

What a great way to end 2014, with such a symbol of celebration.

2014, you have not been altogether kind to us. 
But even so, you have blessed us.

Happy New Year's Eve.

Sunday, December 28, 2014

Christmas Blessings

It is so true, what they tell you when you're first diagnosed with HLHS - "Be careful reading blogs. A large majority of the people who blog are the ones whose kids are struggling. The ones who are doing well - they don't blog. They're out there living life." 

Yep, that's us. Living life. We're still here and Bodie is doing great. We're so blessed. Just haven't had a free second to blog. Life has been crazy!!!

First off, WE MOVED BACK HOME last month! Praise God! And things have been moving at lightning speed since then!

Here's what we've been up to:

Kicking butt at cardiology appointments. 
Everything looks great, we weaned off his middle of the day med, and we don't have to go back for 3 months. Yay!
Bodie with his beloved Dr. Kim:

Losing a front tooth 
(and, in true Bennett fashion, she wouldn't pull it out herself, but her bestie, Anna, accidentally head butted her at Bodie's school Christmas pageant and that thing popped right out! We didn't exactly expect to be dealing with blood and a brand new Christmas dress, but hey, at the least the tooth was out!)
Oh wait, no - losing BOTH of our front teeth.
(I think those things popped out within 5 days of each other!)

Trimming our tree 
- with "Engine Turtle" (as Bodie calls them) ornaments. ;-) 

Spreading Christmas love with our besties.
Sierra with Anna and McKenzie at their school Christmas play.
Bodie and one of his favorite preschool teachers, Miss Missy. (Miss Missy also heads up the children's choir that Bodie is a part of. The last time the choir sang in front of the church, Bodie got up there, turned his back to us and stood that way for the whole dang thing. Dusk and I were fairly well mortified. This time, he got up there, looked right at me and sang his little heart out - I was SO SO SO stinking proud!)
 The kiddos with Cameron and McKenzie. Could they be any cuter???

Getting some pretty cool gifts.
Sierra got her first SEWING MACHINE!!!
Can you handle this excitement???
And her first project was an adorable skirt for her American Girl doll, Caroline.

Impressing the pants off of everyone at church.
Sierra read a particularly long Bible passage at the Christmas Eve service at church. I cannot begin to tell you how proud we were of her! We had so many people telling us afterwards what a great job she did! (We also had people talking about Bodie - that he was busy, that he was a bruiser, that he had "so much energy," that he reminded them of Dennis the Menace (true story), etc. etc. - I know I'm not supposed to say this, but it's just the truth - we were a little more proud of child #1 than #2 that night!) 

Whew! Like I said, we've been busy! 
It is blowing my mind how "normal" our holidays were this year, after everything we have been through. We have so many friends who are sitting in the hospital with children recovering from open-heart surgery. Or home with empty arms, wishing their child was still here to fight. So many, many hurting hearts this holiday season. They are never far from my hearts and prayers. 

So I am feeling so profoundly grateful for where we are today. My heart is full and my cup runneth over indeed. 

Hope you and yours had a wonderful Christmas season!

Blessings from our home to yours,
Dusk, Amy & the kiddos

Thursday, November 27, 2014

Grateful Hearts

Sometimes, a picture really is worth a thousand words.

Our hearts are overflowing this Thanksgiving.

Thank you, Lord, for your abundant blessings on our family. 

Sunday, November 2, 2014

Healing and growing

A year ago…
Bodie was honored at a Cal Poly football game. He was honorary team captain and led the team down the hill and participated in the coin toss. He was also running a fever, too shy to make eye contact with many people and had oxygen saturations in the low 70s.

This year, we took him to a Cal Poly football game and this kid knocked my socks off. He grinned from the beginning of the tailgate to the end of the game (well, ok, to the part where he passed out in my arms at the beginning of the 3rd quarter.)

He was happy, boisterous and FULL OF ENERGY. 
When I said "Do you remember last year? You were running a fever and were so sick!" he replied with "Oh no! How sad!!!" Silly boy.
(Yep, this happened - a certain little girl was REMEMBERED by the cheerleaders, and they stunted her! She was in 7th Heaven!!!)

(This kid partied so hard, he fell asleep in my arms at the beginning of the 3rd quarter, slept through the rest of the game, through us walking around the field, standing and waiting while the band walked 5 feet in front of us PLAYING, walking all the way back to the car, going home, being undressed and put to bed! And then, had the nerve to get really upset and accuse Sierra of lying the next morning when she told him he slept through the game! Hahahaha!)

A year ago…
Bodie went to his school Halloween party a little blueberry and cried his eyes out. Would barely pose for pictures and wouldn't let me leave his side. He kept begging to go home.

This year, he was as PINK as could be  
and ran straight over to his best friend Annika and gave her the BIGGEST hug ever. 
And proceeded to smile and run around with his friends the rest of the party.

A year ago…
Bodie went out trick or treating, but had to stop for a breath between each and every house. And by the 3rd house, I was carrying him.

This year, along with the most beautiful Elsa ever
Bodie donned his SWAT team uniform
and showed Trick or Treating who was boss.
I kept having to say "Slow down, Bodie! We need to wait for the other kids!" as he was running from house to house at the front of the pack. I was blown away.

Today, we went to a Star Wars themed birthday party for a friend. The kids got Jedi costumes and got to meet Darth Vader and Luke Skywalker!
(Pretty amaze balls, yes?)

But the most amazing part was right when we first got there. Bodie got suited up in his costume, grabbed his light saber and literally ran straight into the group of boys fighting. He didn't know any of the boys. None of them knew about his heart.

In that moment, there was not a single thing fragile about that kid.

And in that moment, all I could think was "I wish I could have seen this moment. 5 years ago, when I was anxiously awaiting his arrival, I wish I could have known this moment was coming, that it was ok to hope for it."

There isn't a "a year ago" for that moment. It was too magnificent to have ever imagined a year ago. 

It is mind blowing how far Bodie has come just in the past year. 
Today, he is strong, he is robust. 
Words we weren't sure we'd ever get to use to describe our boy. 

Today, we are praising God for how far He has brought our boy. 

Tuesday, October 7, 2014

On the Inside

I don't think about it much, really. It certainly doesn't dictate our days and our nights like it did at this time last year.

But then, something will happen. It will sneak up on me, out of nowhere. 
Like a freight train.
So maybe not so sneaky, but it turns out, I'm super adept at pretending like it's not there.

But then it is - the reminder of just how damn scary it is raising a medically fragile child. 
Just how much he has been through.

Last week, I was picking Bodie up from preschool and lingered on the playground for a bit, just watching him play. I watched the kids swirl around him in dizzying circles, up and over the playground structure, around the sandbox, running with effortless ease. Laughing and calling to one another in high pitched toddler squeals. Kids, truly, without a care in the world.

I looked over to my sweet boy, watching him climb up and down the play structure, full of life. And yet without the same boisterous energy of his playmates. He has energy for miles, but it's a different kind of energy. A heavier energy. Perhaps an energy born of a lifetime of experiences no one should ever have to endure. An energy honed after 4½ years of literally fighting for his life. And I was sad for him, sad for how hard he has fought just to play on the playground like other kids.  

And I found myself angry. Angry at a group of 3 and 4-year olds. Seriously. Ridiculous, right? Bodie has the sweetest classmates and I love them. But, in that moment, I was angry. And sad. And I was resentful of their sweet lives, void of pokes and prods, and horrific procedures. 

The feeling passed quickly, but it surprised me. I honestly haven't felt that way in a long time. Maybe the last time I felt this way was watching all the other babies breastfeeding when Bodie was unable to. Something like that. Definitely a long time ago. 

I was surprised to find those feelings still lingering. 

You know, I don't often feel like Bodie has "missed out" on much in life. We really do try very hard to let him live as typical of a life as possible. It's possible I'm in denial (feel free to hit me up and let me know if that's the case), but really, other than when his heart has necessitated special treatment (pulling him out of school before procedures, his Make a Wish trip, etc.), we have made every effort for Bodie to have a normal life. He goes to preschool, he "plays" (as long as it's a very loose interpretation of that word) sports, he loves to color and crash his cars, he has chores just like his sister. By most accounts, he lives a rich life. 

And yet, sometimes, the reality of what he's been through still hits me.

So what I would say to those who watch from the sidelines and wonder how we do it, is this - this life is tough on the inside. 

Not always. Sometimes it's amazing, and the blessings are overflowing. And 100% of the time, I am confident this is where God has called our family.

But even so, sometimes it is freaking scary. 

Of course it is when you're in the hospital and in survival mode. That's kind of a no-brainer, right? Everyone can see that.

But sometimes it's hard even when it doesn't look like it. 

Times when the familiar pit sets into your stomach the week before routine cardiology appointments, when your mind races back to appointments that ended in unexpected hospitalizations, ripe for triggering the boatloads of PTSD compliments of having almost lost him more than once. And your mind races forward to the inevitable - will this be the appointment where we finally start to see his heart function decreasing or his body not liking his circulation?

Times when sweet chubby little hands reach out for medications, as much a part of life for him as playing with his little cars. And times when he can name all of his medications without skipping a beat.

Times when a new pediatrician stops short upon walking into the room, saying "Wow. I just read his file, and this was not the child I expected to see."

Or times when you watch him play on the playground, and realize that his life is so, so much bigger than any 4-year old's should be, his worries deeper, his life experiences more colorful. 

And it hits you again, almost as much a sucker punch as that initial moment of diagnosis. For just a moment, the clarity of it all, of everything he has been through, hits you. And it brings you to your knees.

For those of you on the outside, I say thank you for still keeping those of us on the inside grounded. Thanks for sticking around. Thank you for asking me how I'm doing, how Dusk is doing, and how Bodie is doing, and how his sweet heart healthy sister Sierra is doing. 

Thank you for recognizing that this journey isn't always easy, but that this is the journey we've been called to.

Thank you for praying for us up close and from afar. Thank you for interceding on our behalf when we're too tired to, or too scared to. 

Thank you for not making it all about Bodie's heart, because it's not always all about his heart. Someday, his heart will dictate decisions he makes in his life. 
That day, it will be all about his heart.

But today is not that day. 

Today, he just wants to be a boy, playing on the playground.  

Thanks for letting him be that kid.
Oh, and thanks for putting up with my crazy. I know I don't make it easy. And thanks for keeping it under wraps for me, so that my boy can just focus on being a kid. 

Saturday, September 13, 2014

The One We Never Saw Coming...

I guess that's not entirely true. We always saw this coming. Just not now. And definitely not in the way it did.

Bodie has never really shown much PTSD, which has always surprised us. With everything he's been through - I mean, not just the heart stuff, but everything - the burglary, the fire, Dusk's health issues and the heart stuff - we figured the PTSD had to be there somewhere, lurking under the surface. We had been warned, by more seasoned heart parents, and by our medical team, that most of these kids suffer PTSD to one degree or another. 

But Bodie never really did.

I mean, he has always been an emotional kid. And, well, a giant pain in the butt from time to time. And that could have something to do with everything he's been through. Or, you know, his gene pool. There's that.

But no real definable PTSD.

Until July.

The last week of July (the day before we left for Bodie's Make-a-Wish trip, actually), the kids and I were at a heart family picnic at a park. While we were there, a storm started. Bodie has been in storms many, many times in his life with no issue. He's always thought they were cool and loves to play in the rain and jump in puddles. 

But this storm was different. He freaked out. As in, he heard the first clap of thunder and completely lost it, shaking and screaming about needing to get back in the car and go home. I comforted him and sort of laughed as we hurriedly gathered our things back into the car. After all, Bodie is a pretty dramatic kid, but it was pretty out of character even for him - and it seemed like a pretty silly thing to get so worked up over. (As an aside, a lightning bolt from that same storm killed a young man on the beach 25 miles away…but Bodie couldn't have possibly known that.)

We thought it would pass, this new fear. But it didn't. Over the past 6 weeks, it has turned into a full scale phobia. It comes and goes, but when it comes, it's terrible. He will refuse to go outside, out of fear it's going to storm. Mind you, that's when it's 90+ degrees outside without a cloud in the sky. It's the thought of the storm that scares him.

He hears loud noises and asks if it's thunder. Over and over. Which is super awesome since we live in the flight pattern, and jet planes sound exactly like thunder.

He feels the wind and immediately tenses up, asking me in a panic "Is it gonna storm, mama? Is it? Can we go inside, please please please?" 

When I went to pick him up from preschool on Friday, he was in the Office, playing with the Assistant Director - he had been too scared to go outside for afternoon playtime on the playground.

Last week when I asked him to come outside and swim with Sierra and I, he said "No thanks, mama. I'm just not an outside boy."

I cried.

His swim teacher asked if he was an agoraphobic (swim lessons are in an outdoor pool).

I cried then, too.

This fear, this phobia, is affecting his life in ways I never could have anticipated. He comes inside and is 100% fine, happy as can be. But as soon as we go outside, he's scared. This crazy, irrational fear is taking my boy, my sweet fearless crazy boy, and turning him into a kid who's desperately afraid of the sky, and the wind, and rain. 

Which is super awesome since this is supposed to be another El Nino year.

But I digress.

In many ways, this has been one of the harder things we've dealt with in our journey. It's completely out of our hands, and totally unreasonable and unexpected. We talk to him about this fear. We pray with him and over him. We talk to him about how God promises to protect him, and is always with him.

But he's still so so scared. It's so hard to look into his eyes and see such fear. It's as though all of the PTSD that's likely been lurking beneath the surface is being channelled into this fear of storms. And it's gut wrenching to watch.

We're currently interviewing therapists for him, since we know that's his next best step. We know this is very likely PTSD and he needs specialized intervention. 

So tonight, we're frustrated and we're sad. 

Honestly, this is really hard. 

Our sweet boy has been through so much, it seems so unfair for him to go through more. He's otherwise, doing so, so well right now. This is sort of a sucker punch to the gut. We know it's not the worst thing we could be dealing with. And for that, we are immensely grateful. But it would sure be great to not be dealing with this either.

Tonight, we ask for prayer. Prayer for peace for our sweet boy. 

And prayers for knowledge and wisdom for Dusk and I, to find the right therapist for Bodie. The therapist who will help Bodie find his way out of this fear and get back to the life he loved. 

And if you have any favorite Bible verses about fear, we'd love to hear 'em. Verses that speak to you when you're at your most scared. I'm creating a book for Bodie to work on memorizing verses about fear and about God protecting him.

Thank you for always praying for our sweet boy. 


Wednesday, September 3, 2014

Back to School…back to reality

After the most incredible summer, with more packed it than our past 3 summers combined, today was officially back to school for these 2 silly kiddos.

I'm not one of those moms who counts down the days till her kids go back to school, and drops them off with a huge sigh of relief that school is back in session. Nah. I'm one of those moms who sends them off wistfully, wishing we could have just one more week of summer, just one more late night movie followed by a lazy morning in our pi's, just one more snuggle. Of course we had our moments where they were pushing me over.the.edge, but I loved having them home. I love the laughter, the closeness, the time spent seeing what is going on in their little minds. I don't love sending them away from me, and I certainly don't love the commute to get them there! But I love how excited they are to see their friends, to learn, to experience life - and, to do what kids do best. GROW. And we are so, so blessed that our children have the opportunity to do just that. 

If they could do it just a little bit more slowly, my mama's heart could do this whole 1st day of school thing a little easier. :-)


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.

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. 

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.

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.

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.