Thursday, May 19, 2016

Gifts in unconventional packaging

Parenting a medically fragile child bites.
I mean it really sucks in a million different ways.
We live a pretty "typical" life, but even so...

I could list all the ways it sucks for you.
The moment we were diagnosed and our entire world shifted on its axis. The hospitalizations. The surgeries (duh). The medications with side effects that would keep you up at night thinking about. The things you're a witness to. The pain you watch your child go through. The pain you participate in, holding your child down for repeated blood draws and other procedures. The brave children you pass in the hallways, in the elevators. The ones you know and love personally who earn their angel wings far too soon. 

But that's really just the tip of the iceberg.
Everything underneath that.
That's where the scary stuff really starts. 
I could try to explain it to you.

But the thing is, if you haven't been there, you wouldn't understand.
You try and we LOVE you for that effort. 
Please, please keep trying. 
We need you to keep trying.

But unless you have been there, you cannot begin to understand how sitting in a hospital bed next to a truly, truly sick child changes you, your mind, your outlook on life, how it hits your soul. How it literally crushes your heart and forever alters it. 
What it's like to watch your child suffer. And to suffer in a way that you could never make better no matter how much you tried.
What it's like to wonder whether your child will get to grow up, whether you're parenting for the here and now or for the future. 
What it's like to look at their siblings and wonder how this journey is changing them now, how it will change them in the future. 

Every parent worries. 
But the thing is...but when you have a medically fragile child, they're not just crazy overreacting typical parent worries. We fear what we've already seen and know can happen. It's literally like holding a ticking time bomb. One that could go off at any moment. So you hold on for dear life. And pray for more days.

This past week has been tough for us, with conversations about Bodie we weren't quite ready to have. (He's fine cardiac wise, but his rhythm stuff is giving us a run for our money.) 
Lots of feelings coming up. 
And not the good kind. 

So I've been in a funk the past few days, just processing it all. 
Hating CHD. 
Wishing with every ounce of my being that my sweet, silly boy had been born with a whole functioning heart. Just wishing for the hundredth (millionth?) time that I could take it away from him.

And then today, as we were riding home from school and stopped at a stoplight, I looked back to see this. 
And I stopped, struck by his smile. 
And I realized how lucky I am. 
I get to see this smile on a regular basis. A smile that literally lights up his entire being. And reminds me how uniquely amazing God made him. 
You know what that smile was for? Because I had gotten him Reeses peanut butter cups as a snack.
I mean. 
Reeses peanut butter cups are pretty amazing, but even so...to be this excited? 

And you know what this smile a few weeks ago was for? 
Because he found a ladybug. 
A freaking ladybug.

What an incredible approach to life. 
Couldn't we all use a little bit of that?
Man, the world is a better place because this kid is in it.

I know his joy is not larger than life because of his heart, but the two go hand in hand. We get the beauty in the imperfect package. 
In his imperfect heart, our family has experienced perfect joy.
Because of his trials, we have rejoiced at quiet, happy moments.
Because of his perfectly imperfect future (but aren't ours all?), we have been forced into the here and now.

Here's the thing. A medically fragile child pulls you off autopilot. They bring you into the land of the HERE and the NOW. The land of childhood, of laughter and pillow fights, of snuggling in bed and extra stories. Of taking a little extra time.  Of rejoicing over Reeses Peanut Butter cups. 

So, yeah, this medically fragile journey thing sucks times infinity, but the beauty and joy it brings is also times infinity. 

What a gift, even if wrapped in unconventional packaging.

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Sunday, April 24, 2016

Nine.

Oh, my sweet girl. 
NINE?
How are you already halfway to being an adult? Yowza!!!

We love you SO MUCH. 
And we are so so grateful to be your mommy and daddy. 

You know what, Sierra? 
You are a good kid. 
You really are.
You're sweet and you're kind (well, except to your brother sometimes. But in all fairness, he sometimes makes it pretty hard to love him, what with all the piss and vinegar he throws in your general direction). 

And you're one of the bravest kids I know. 
You're not afraid - of anything. (well, except spiders and bugs, but that's really just self preservation and good common sense to be scared of those suckers. You won't find me holding that against you.) 
But you're not scared of LIFE and that's what we love so much about you. 

We have this picture of you from your third birthday party, which totally encapsulates EVERYTHING about who you are. Messy, sweet and OH SO EXCITED. 
You dive in feet first, screaming in excitement. Whether it is ballet, or swimming, or going somewhere new, all I have to say is "hey, do you want to try - " and your answer is an emphatic "YES!!!" before I've even completed my sentence. And whatever it is we end up doing, you always have so much fun.

That is such a gift, baby girl. Because someday God will speak deep into your heart, and He will call you to go somewhere scary, somewhere uncomfortable, for His sake. And, with every beat of your excited heart, you'll jump to say "YES, Lord! Send me! I can't wait!" (and I'll be scared to death, but oh, so proud, of you.) Don't ever lose that love of adventure, of life, of looking expectantly down the lane at what's coming next, just knowing it will be good. It will make your life so amazing.

I know our life has been tough, but even through it, you have prevailed. You have kept pushing on, over the obstacles and the hurtles. Eight was a bittersweet year for you. It saw your best friend move away, with a little bit of your heart (and mine) with her. But it also saw so much good. Learning to play the clarinet, an exponential increase in your reading and writing abilities, an increased self confidence in your ability to handle stressful situations, and a newfound love of spelling lists, Nancy Drew and karate. 

We have loved watching you grow. The past 9 years have been amazing. We've watched you learn to talk, to crawl, to walk, to read and write. We've helped you learn math and social studies (and sometimes science, but, well, let's just say that's not really our forte in the Bennett household).  

But the next 9 will bring so much more. 
Tonight, we snuggled and I stroked your hair as we talked of what the next 9 years will bring - boys (eeeeek!!! I'm not gonna lie - that was a sigh of relief you heard come out of my mouth when you swore you'd never marry and that boys were kinda icky), learning so.much.more, driving a car, going to high school and picking a college. 

All of these are such wonderful things, but my heart is already a little sad in anticipation of the natural separation you'll start to have from us as you grow. So I'm milking this time for all it's worth - extra snuggles, extra reading, extra talks. Just extra "us" time. Now. You know, when you still think we're cool. 

So many fun adventures ahead. We're so grateful to be here with you, watching you start to spread your wings and grow. 

We love you, girlie. Every last fearless inch of you. 
Happy 9th birthday.

Love,
Mommy & Daddy (& Bodie, who adores you even if it doesn't always seem like it)
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Tuesday, March 29, 2016

We need help.

Friends.

We need your help.

We have seen your help work in the past in so many ways, in your prayers for all of Bodie’s multiple heart surgeries and Dusk’s surgeries and heart attacks. We have seen it work in how quickly you mobilized to come alongside us and rebuild our lives after our house burned down. Today, we need it in a way we never envisioned asking for it. 

We need the power of social media.

As you may know, Dusk had to have both of his hips replaced at the age of 39 due to a bad reaction to 6 days on Prednisone for an inner-ear imbalance. We have not discussed the aftermath of his first surgery on social media, because, to be honest, we have never wanted to publicly disparage the surgeon involved. We understand the power of social media, and have never wanted to use it to disadvantage someone. But we have no choice at this point.

The surgeon who replaced Dusk’s first hip was Jonathan Nissanoff. He represented prior to surgery that he was a Blue Cross PPO Preferred Provider. After the surgery, we were billed from a different office that was NOT a Preferred Provider. His office and our insurance company fought for almost 2 years before coming to an agreement. During that time, Dusk underwent a particularly difficult recovery due to the way the surgery was done (and still has significant pain to this day), and we had tremendous issues dealing with the office, among other problems.  You can read about some of our issues here and here

Some time after the insurance company and the doctor’s office came to their agreement, we were verbally told by the office that our balance was paid. Shortly after that conversation, Dusk updated an already unfavorable Yelp review about Dr. Nissanoff. 

Since that time, we have been sent a cease and desist letter based on the Yelp review, a collections agency has been sent after us for what we believe to be a fabricated balance, and we are now being sued for over $14,000. 

We offered to take down the Yelp review.

The doctor did not budge, claiming the lawsuit has nothing to do with the Yelp review.

Earlier this week, someone else posted a negative Yelp review. We did not write the review. Despite us indicating so, the doctor’s attorney has now subpoenaed Dusk’s IP address as well as the IP address of the negative Yelp reviewer, because they believe they are the same. Even though the case "isn’t about the Yelp review." I wish I was making this up. 

You guys. 
We are being harassed. 
I wish we had money for days to fight all of this off, but, unlike the doctor’s insurance company, we don’t. We are just a family living in Los Angeles, just trying to survive,  trying to make ends meet. A family who has been through way too much already. If you’re new to our blog, you may not be familiar with our story. I’ll summarize it below.

In the last 9 years, Dusk and I have had 7 miscarriages; he had a bad reaction to a week on Prednisone, causing him to need both of his hips replaced at 39 years old; our son was born with a severe heart defect that has required 5 open-heart surgeries, 5 cardiac catheterizations, over 7 months spent in the hospital and countless other procedures (so far); Dusk has had 2 heart attacks and his knees are shot; our house was burglarized and burned down a year later. Oh, and I am looking at surgery for a herniated disc in my back.

(As an aside, I wish I was also making all of that up.)

The doctor knows ALL of this, and is choosing to pursue this lawsuit anyway. It is really beyond unconscionable. His office had the nerve to send the collections agency after us just a few months after our fire, as we were dealing with living in a rental home and trying to inventory the enormous losses in our home. We know he was aware of our situation as we made both his office and the collections agency aware of it.

We have tried being reasonable. We have tried to satisfy him. But it is clear he will not stop. We can’t keep fighting this, either monetarily or emotionally. This has to stop.

We don’t know what else to do other than to spread our story. 

Please help us. 

How you can help:
1. Share your opinion. 
If you don’t agree with the way we’re being treated and harassed, please go to Dr. Nisanoff’s Yelp page and share your concerns. Let him know that it’s not ok to take advantage of weakened people, especially people who have already been through so much. His Yelp page can be found here.

2. Spread the word. 
Share this post with your friends – forward it over email, share it via social media. However you get word out on issues that are important to you, please consider sharing our story. If you have media contacts, please reach out to them and share our story. Amy can be reached directly at amykbennett@gmail.com

3. Advocate. 
If you know friends in the Southern California area who are contemplating orthopedic surgery, particularly hip replacement, please steer them elsewhere. We personally recommend Dr. Joel Matta  in Santa Monica. He did Dusk’s second hip surgery and, if we could go back in time, we would have had him do his first. People travel from all over the world to see Dr. Matta. He is an incredibly talented surgeon, his bedside manner is wonderful, and his office is a dream to work with billing wise. Please help your friends and acquaintances avoid finding themselves in the situation we have found ourselves in.

4. Pray. 
Please pray for our family. All of this, culminating in the lawsuit, has brought so much stress into our lives, which are already much more stressful than they need to be. Please pray in particular for Dusk, as his arrhythmias are adrenaline induced and can be exacerbated by stress. It is hard to believe that no cardiac events for years and years – and now 2 in the last year, since all of this harassment has started – is simply a coincidence. At a time when we are trying desperately to identify and eliminate stress inducers, we have no ability to control this one. Please pray for health for all of us.

As a final note, if you are in the Southern California area and find yourself in need of a good litigator attorney, we highly recommend James Johnson. He has been enormously helpful to us in this stressful time. 


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Tuesday, March 22, 2016

The Courage of a Lion

When Bodie was 18 months old(ish), we enrolled him with an amazing company called Beads of Courage, who provides beads to children who've been through medical trauma, so that they can "record, tell and own their stories of survival." At that time, Bodie received beads for his first 3 surgeries and accompanying hospital stays. You can read about that (and his massive collection of beads) here. It was amazing, we all ooh'ed and aah'ed. And promptly put them in the bag they came in. And left them on his dresser.

And then totally freaked out when we thought we lost them in the fire.
And then found them again.
And then left them in the bag again (in my defense, we kind of had a lot going on).

Fast forward to last month, when Bodie wanted me to help him share his Beads of Courage with his kindergarten class (so.stinking.cute) during CHD Awareness Week. 
Which was about when I realized "holy crap, he only has 3 open-heart surgery beads on here. We haven't updated them since he was 18 months old!!!"


So, I tallied his procedures from 18 months until now. Ok, I estimated, because we all know I have waaaaaaaayyyy too much PTSD to actually remember everything that happened. But whatever, it's the thought that counts, right? 

His beads arrived last week and he and Sierra (and Dusk and I) got busy stringing them. 
And he had too many beads to fill the strings allotted (again!), so we'll have to get more. But we strung what we had and I'm kinda loving them.  We put the 2 new strings right up with the rest of them (now on his wall, so I'm not worried about losing them anymore).
The string with his name on it is his first string, which includes all 3 of his first open-heart surgeries. We put his Fontan string right above it (you can tell it's his Fontan string, since it has 2 open-hearts on it (the red hearts - duh, right?) and a new special bead, made just for him with a sweet message (the lobster one).
(for the record, his "what the heck happened?" string (i.e. not his Fontan string, but where all the other beads from the past few years went) is on the bottom right of the picture of all of his beads.)

I tried to do a "then and now" photo op, but I'm pretty sure this is officially classified as a Pinterest Fail.
Whatev. Nailed it.

And, if you're counting, his bead total now includes 5 cardiac catheterizations, 17 central line and PICC placement & removals, 42 clinic visits, 100 nights spent in the CardioThorasic ICU, 15 days spent on TPN, 50 dressing changes, 61 echocardiograms, 4 emergency/unusual occurences, 26 antibiotic infusions, 53 nights spent in the step-down unit, 75 days spent in isolation, 7 different instances of learning new medications, 170 IV Starts and blood draws, 185 CT scans, EKGs, MRIs & X-rays, 6 tranfusions, 28 NG, chest tube & foley catheter insertions and removals, 22 days spent on a ventilator, 65 visits from PT/OT/Nutrition, 3 extraordinary experiences, 5 cardiac surgeries and 11 hospital discharges.

For all of that, and the privilege of seeing how far he has come, I'll gladly take a million pinterest fails. 


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Tuesday, March 8, 2016

On rising up...

Two years ago, at almost this exact time, our house looked like this.
(as an interesting aside, this picture was taken by a mom in my local moms group - she posted it in our group asking what was going on. I saw it later that night. Cannot explain how crazy it is to see a picture of YOUR house on fire on social media before you have even had a chance to tell anyone yet.)

 By the next morning, our home would look like this, and our life would be forever changed.
It's amazing to look at these pictures. It almost feels like it happened to someone else, like a bad dream. Looking back, I can't believe that actually happened to US.

Tonight, we celebrated how far we have come as a family since that night, and how much God has done for us, and protected our family. We celebrated with dinner at one of our favorite local haunts. 
 And lest you think that picture is bad, this was my other option. 
(better known as the mug shot and poltergeist boy, with some random girls behind them.)

Whether we should "celebrate" or just pretend this day never happened was a bit of debate between Dusk and I (and apparently everyone else in the human race - with me falling on the lone side of believing that we should indeed celebrate). But I think it is SO important that our kids understand that we rise up from experiences like this, that we live through them, that we fight through them, that they shape who we are, but that they do not define us. So, we recognize the day and celebrate that today is NOT that day, that today our house did NOT burn down. (As it turns out, I may have a slightly lower than typical threshold for things that require celebrating.) At any rate, we ultimately used it as an opportunity to reflect on God's abundant blessings on our family, and the beauty amidst the tragedy. 

May you also find beauty amidst the tragedies of your lives. 
Or, you know, just celebrate because your house didn't burn down today.
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Thursday, March 3, 2016

Embracing the chaos

We made a pretty big change to our family this week. We added a pet! 
I know, for most families that's not such a big deal. But for our family, it's huge - and here's why. 

Our family has been living in chaos. 
Pretty much forever at this point.
In fact, I don't remember a time when our family wasn't marking time from trauma to trauma.

Dusk and I both grew up with pets. We absolutely fundamentally understand how good pets are for kids. But, with all the trauma in our life, we just couldn't bring ourselves to bring a pet into our home. (And I don't just mean because of Bodie's heart defect - we know tons of HLHSers with pets. It's because of everything else - Dusk's medical issues, the fire, and just everything else. We just didn't think we could handle a pet on top of everything.) That wouldn't have been fair to the pet - or to us. 

But this past weekend, Dusk and I decided that we were ready, that the kids were ready. That maybe our life wasn't ever going to be free of trauma and chaos, that maybe this is just the season God has called us to. So maybe, instead of waiting for things to be perfect, we just needed to make the most of this season we're in and add a pet. (But just a cat - a cat we could do. A dog we're not quite ready for.)

So we put ourselves on all the local shelter lists for (what they so eloquently described as) "a bombproof, sweet cat" that could handle a household that runs on chaos. We walked into our local no-kill shelter on Tuesday afternoon, and wanted a male, orange tabby kitten or maybe a 1-2 year old (so basically either one we could mold, or one who had been manhandled a lot and could handle us). 

And we walked out with this.
A beautiful, sweet 6 ½ year old, white, female kitty.

She wasn't at all what we wanted. 
But, as it turned out, she was exactly what we needed.
An unbelievably sweet and mellow kitty, who can't help but purr the second you start petting her. 

Dusk and I are both in love.
She loved me…until she met Dusk…and then it was over.
 
I'm not even kidding when I say that. 
The kids and I were home tonight and she had run under the bed. She had been under there for awhile. Within minutes of Dusk coming home, she was out on the bed, purring away, just waiting for him. 
I'm pretty sure I'm going to have to remind her that he is MY husband on a regular basis. 
But I'm ok with it, because if someone in this family needs some pet therapy, it's Dusk.

And the kiddos absolutely love her…which she tolerates, for the most part. 
She's getting better. She opened up to Dusk and I really quickly, sleeps on our bed already and loves to lie next to us. She acclimated very quickly for any cat, let alone a rescue kitty. It's taking a little longer to warm up to the kids. She likes them, but will only let them pet her for a short period of time. Yesterday, she shot under the bed the second they got home from school. But today was better and she let them pet her for a bit. They were over the moon.
She's opening up to Sierra and definitely vibes with her more mellow side.
Bodie…well, he's a whole nother Oprah. He is obsessed with her and she is pretty scared of his crazy energy. He's trying to learn to be calm (which is GREAT for him), but is a hard lesson. He's taking it pretty personally that she looks like a deer in the headlights when she hears him running down the hall. 

I was feeling so bad for him tonight when he was crying about it. I was almost regretting the whole cat thing. And then I walked into our bedroom to see Bodie hanging out with Dusk and the kitty was right by his side. For the first time, she was cool hanging near him. 
(Yeah, I know, she looks pissed in this picture. But his face is priceless.) We're so hopeful that the more she adjusts, the more she'll bond with the kiddos.

So for now, we're embracing the chaos in our life. And this sweet little kitty is helping us do just that. 
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Tuesday, February 16, 2016

SIX!!!

Our sweet Bodie,

Six.
S.I.X.
Wow.
Your first two handed birthday. I know you had a hard time understanding what we meant by that when we said it, but you'll just have to trust us, it's pretty cool.

Wasn't it just yesterday that I was pregnant with you, that we were learning about how there was something wrong with your tiny, walnut sized heart? When we toured the cardiac ICU for the first time and thought "how will we ever survive this, spending even one night in here?" 

And yet, here we are, 6 years (and many, many nights - and days - spent in that cardiac ICU) later. And here you are, the bravest little boy we know. We are so blessed we get to call you ours.

I know as parents, we're supposed to be the ones teaching. And we have. 

Or, at least we've tried. 
You can strip a bed really well now, although remaking it still continues to be your Mt. Everest. And at least twice a week you magically forget how to put on your socks and shoes (somehow, it becomes a task fit only only for an individual celebrating a double digit birthday). But you have finally mastered underwear, so there's that. 

And yet somehow, you have taught us even more. In your early years, your infancy and toddlerhood, you taught us resilience. You taught us fight and bravery. You taught us to trust God with this tiny human being, and to trust others to help you when we couldn't. You taught us to revel in the beauty of life, to find the magic in every day. You taught us what our limits were, how far we could be frustrated before we could break (and, well, let's be honest, you're still teaching us that - you're kind of an expert in that area).

The past year, you have taught us even more, maybe even more than you did in your entire first 5 years of life. This was the year where you started to move outside the protective confines of our family, of a preschool, and out, just a bit, into the real world. Where you weren't the kid to be treated with kid gloves, the kid with a heart condition. You were just another kid. A little boy obsessed with Legos, Star Wars and paramedics.

When we got back from Boston last August, we weren't sure where this year was going to go, how you would do in school. The challenges before you seemed so daunting. But I remember daddy telling me 

"Just give him a chance. He's always risen to the occasion. I have no reason to think he won't this time, too."

And you know what, Bodie? He was right. You have totally risen to the occasion this last year. You have stretched and grown this year. So, so much. You have shown us that, no matter what you bring to the table, no matter what happened to you before you got there, you bring your A game and do the best you can. And you enjoy the heck out of it while you're doing it. 
Gah. Your joy for life is unreal, kiddo. I don't know where you got it from, but I thank God for it every.single.day.
This was the first year that you didn't have a birthday party where we invited a bunch of heart families and reveled in what a miracle you are. Because, of course, you are, but you don't need to dwell on that too much these days, lest you think it's an excuse on the whole socks and shoes thing. Instead we did a joint birthday party with your friend Garret, and invited only school friends and just did a regular kid birthday party. 
And it was pretty awesome. 
You're starting to grow up on us, just a little bit. 
Last night, you told me "mama, I don't want to be 6. I like 5." 

I know, buddy. Change is weird and unfamiliar. Tell me about it, kid. If daddy and I thought 5 was hard, where the statistics and survival rates stopped for kids with your heart condition, 6 is even harder. We're kind of into this weird abyss, where we don't have survival rates anymore and things might be really great or they might not. So, you know "go have fun and live life." It's weird and unsettling for sure. 

But you know what? It's also so so amazing. You're our pioneer. We get to watch you do things we didn't know you would ever do. And we can't even put into words the pride we feel when we see you doing those things. 
And we love every inch of you. 
Well, except for the inches that won't help clean the house or put your socks and shoes on. 
Because, seriously, dude. I don't care how many heart surgeries you've had, you can't walk around barefoot forever. 
We love you so much, buddy.

Love,
Mommy & daddy
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Sunday, February 14, 2016

Change of plans

Dusk had another episode earlier this week. Thankfully, it was much less severe, but it bumped up the timeline of his surgery. So his surgery is now scheduled for this Thursday (Sierra was super happy to realize that meant her dental procedure was getting bumped because of it!). So if you could keep our family in your prayers this week, we'd much appreciate it.

In the meantime, we're celebrating Valentine's Day this year by trying to stay OUT of the hospital! 
Valentine's Day, 2015
Palomar Medical Center
Hours after Dusk's cardiac arrest 
(& subsequently having to leave his best friend's wedding in an ambulance an hour before it was supposed to start)
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Tuesday, February 9, 2016

Surgery #…oh I don't know, I've lost count...

Dusk and I met with his cardiologist this morning and reviewed all of the tests run during his stay at UCLA last week and have a plan going forward. He has surgery scheduled for Monday, February 29th  to replace his current ICD/pacemaker with a more robust bi-ventricular device. 

His current device was only really intended to be a defibrillator, an insurance policy if you will, to shock him out of an arrhythmia back into sinus rhythm. And thank God for that, since that's exactly what it has done twice now. But it was never really designed to pace him for any significant amount of time. His heartrate has always been low, but when they implanted his device, it was not so low that it was causing him problems. As a result, they only put one lead to his heart, intended to provide very minimal pacing and be available to provide a shock if needed.

For reasons we don't fully (or heck, even partially) understand, his baseline heartrate has gravitated lower in the past year or so, and his need for pacing has amped up considerably since November. While he used to be paced hardly at all, he is now being paced upwards of 70% of the time. Which isn't ideal with a simple single lead pacemaker, since pacing from a single lead causes the heart to beat in a pretty funky rhythm. 

That funky rhythm alone puts him at a higher risk for more arythmias. His low heart rate puts him at a higher risk of arythmias. The medications he is on to treat his arythmias put him at a higher risk for more arythmias, particularly when combined with a lower heartrate and funky rhythms.

Did you follow all that?

The long and short of it is that his current device isn't helping his heart or protecting him particularly well, so, they will be doing surgery to remove that device and put one in that provides leads to 3 different places in the heart, allowing it to pace him more effectively. 

The surgery should be a relatively quick one. But, if you've been following our blog for any length of time, you know that Dusk's body doesn't always respond particularly well to medical intervention. So we're expecting at least one night in the hospital. We would appreciate prayers that it's ONLY that one night. 

And, while you're praying for our family, please keep Sierra in your prayers, as she has a dental procedure next Thursday. It's not a huge one, but because she struggles with dental procedures in general, it will have to be done under anesthesia. Please pray for a smooth procedure and recovery for our sweet girl.

Thanks, and, you know, Happy CHD Week!

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Thursday, February 4, 2016

When my journey becomes his journey

If you've read my blog, you know I'm an open book. Blogging is my therapy. (and thank God for that, because, otherwise, with what we've been through, we'd have to take out a second mortgage on our house to cover my therapy costs.)

But I digress. Like I said, I'm open. I've openly blogged the good and bad parts of our journey.  I share our journey in the hopes that it can help others, inspire them,  give them hope in their own journeys. And I have a daughter just like me, who loves to talk about our hardships, our celebrations, how we're coping. 

And I have a son not like me. 
A kid who has a half a heart who would be totally cool with the world never knowing.
This sweet boy has such a big heart, but such a sensitive soul. And he hates being the center of attention.

So this week, before I asked everyone to wear red for him on Go Red! Day, I checked in with him, to make sure he was ok with it. And he was. And so I began asking people. And I had the awesome opportunity to speak before his school at Chapel yesterday about why we wear red on the first Friday in February and Congenital Heart Defects in general. Knowing how sensitive he is to being the center of attention, I tried to steer my talk to congenital heart defects in general, mentioning him a few times, but really trying very hard not to make it all about him.

Even so, he hid his face the entire time. And then told me afterwards

"I'm not wearing red on Friday."

Guys. His entire school is wearing red on Friday, for CHD awareness. But in reality, for him. Because for most of the kids, he's the first person they've ever met with a CHD.

My heart broke a little when I saw him hiding his face, and a little more when he told me he didn't want to wear red.

Of course he'll wear red. 
Even if I have to bribe him. 
Because the train has already left the station for this year's CHD Awareness Week. And the Bennetts are on it. 

But my heart broke because I know why he reacted that way. Because he's shy. Because, already, at the tender age of 5, he doesn't want to be known as the miracle kid, the kid who has survived insurmountable odds to still be here despite 5 open-heart surgeries and countless other procedures. 

Because he is all those things. And more. But he doesn't want to be defined by that. I knew this day would come. I have been warned of it by adult CHDers, by parents of older CHDers. That for a lot of kids (not all, but most), a day comes when they don't want to be a poster child for CHD. That they just want to be regular kids. 
I just didn't expect that day to come at 5 years old.

But then, Bodie's different than most kids. He has very big emotions for such a little guy. I guess I would too if I'd been through what he's been through. So, our journey is changing a little. We're starting to hit the parts of the journey where I pass the baton to him, where it's less about me and more about what HE wants, how open HE wants his journey to be.

So, we (all 4 of us) are wearing RED tomorrow (and really hope you will too, for Dusk AND for Bodie, and for heart disease and defect survivors and angels worldwide), and we'll be putting together a video showing our supporters (so please send me your pictures, tag me in them, etc.!!!). 

And at least 3 of us will be super excited to do so. 
It may look a little like this.

But we may not do it next year. 

It will all depend on Bodie and where HE's at, and how HE is feeling at that point. So, if we're quiet during CHD Awareness Week next year, know it's because I've passed the baton to my son and it was his choice to be quiet about it. 
(And that my therapy bills will likely have increased at that point.)

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