It will get better

The evening of March 8, 2014, our home looked like this. 

As we hit the anniversary of our fire, I read back through my blogposts from the night of the fire and the weeks following. It was honestly so hard to read those posts, to be brought back to that night, to the shock and the fear, to the days afterward. So much I had forgotten. 

On March 8, 2017, a family in our local community lost their home to a house fire. A family with 2 little boys and a dog. A family who never saw it coming. A family who is now living in a hotel and trying to find a rental home, with estimates that it will take a year to rebuild their home.

I don't know this family personally yet. But our local community is so amazing, and I have seen Facebook posts and emails and meal chains about and for this family. I have watched our local moms come alongside this family and support this family as they face the unthinkable.

I wanted to share some words with this family, and to any family going through something similar.

IT WILL GET BETTER. 

I promise.

Right now you are overwhelmed. 

Your life has changed on an axis and will never, ever, EVER be the same.

It's ok to grieve that.

It's ok to walk through what remains of your house and think "Oh.my.gosh. My house looks like I live in a war torn country. How did I NOT realize this is what a house looks like after a fire?"

It's ok to hate the smell of burned plastic and ash that inhabits your house. It's ok to have every sad emotion in your body triggered by that smell for a very long time. It's ok to hate crossing the threshold into your home because that is all you will smell. 

It's ok to suddenly realize you have lost something irreplaceable (for us, it was our entire ornament collection, both the ones my husband and I made as children, and the ones our sweet kids made for us in preschool). It's ok to suddenly feel an enormous loss and pain over that. It's ok to cry buckets over this. Actually, it's ok to cry buckets over every single facet of this experience. It sucks. There's sort of no getting around that. 

It's ok to stand in what was your bedroom and cry, thinking "How on earth can I possibly try to categorize what was here and what is salvageable or not?" 

It's ok to survey your house, speechless, the house where your children may have been brought home from the hospital, and learned to walk and talk and eat that first birthday cake - and to know that it will never, ever, be the same.

It is ok to be overwhelmed and to grieve.

But it will get better. I know it doesn't seem like it, but it will.

There will be a time when your house is rebuilt and it becomes your HOME again, where you will again see it as a safe sanctuary. (Just fyi, it won't be right away. I distinctly remember our first night back in our rebuilt home, turning to my husband and saying "I have this fear the house is going to burn down tonight." I expected him to say "you don't need to worry, it won't." Instead, he said "yeah, I have the same fear." That was, shall we say, super not at all helpful.) But, it WILL happen. The time will come where it's NOT the first thing on your mind when you walk in the front door - or the second or the third - or even on the list at all.

There will be a time where the burned plastic smell will be just a distant memory (seriously!)

There will be a time where your friends will come alongside you and create NEW precious family heirlooms (for us, it was when my inlaws had my kids make new Christmas ornaments for us - and when other friends sent us ornaments for our tree that first Christmas after the fire).

There will be a time when you will finally, blessedly, be DONE with inventorying all of your belongings. And you will realize that, at the end of the day, it was just STUFF. You are safe. Your children are safe. That is all that matters.

There will be a time when the days you spent in the hotel, and the rental home, will be fun memories. Right now they are stressful and you wonder if you are somehow ruining your children's childhood (because, unfortunately, no one has written a book on "How to make it fun and not traumatic for your kids when your house burns down suddenly").

But the times you're spending now and in the near future - in a hotel and a rental home - they will be a time of bonding and your kids will have such great memories. My children still talk of when we got to stay at the Embassy Suites and swim in the pool every night - and all the fun we had in the rental house. 

(This was at the hotel, 3 nights after the fire.)

Right now, this seems like the most critical thing that will ever happen to you. And right now, it is. But there will come a day when it will just be a part of the fabric of your children's childhood, that makes them stronger and more resilient. I know this for a fact. I have already seen this with my kids. And we're only 3 years out.

(My kids now - resilient and happy).

It will get better. I promise. 

You're in the super sucky part right now and I'm so so sorry for that. Just keep pushing through. 

Lean on your friends and family. And the kindness of strangers. Even if you're not good at asking for or receiving help (preaching to the choir here), you NEED it right now. It's ok to take the help. 

Finally, if you're blessed enough to have a relationship with Jesus Christ, lean deep into that relationship. It will sustain you in a way that nothing on earth can. And if you don't, get to church and get going on that one. :-)

Taking the good where we can find it

Bodie had an appointment with the heart failure team today. 

(It had been rescheduled twice due to the plague that hit our house, but everyone is finally well now (thank God!), so we were finally able to get in today).

The good news is that his BNP, or measure of heart inflammation, has continued to drop, from 285 in mid-January down to 230 today! This is very good news and means that his current cocktail of meds is effectively taking enough workload off of his heart so that it isn't as stressed from the dysfunction. 

Unfortunately, his heart function just has not improved. At all. We were very hopeful that it would. But, at the end of the day, it just hasn't. 

So what does this mean for Bodie? 

Despite his severe dysfunction on echo, he looks pretty good all things considered. I mean, he doesn't look good compared to kid with a perfectly healthy heart and good heart function - he's not running any marathons or anything. But for a kid with severe heart failure, he looks pretty darn good. His energy is good, he is eating well, he grew a bit and he's enjoying life. He's in school, and, on his good days, he's really not that symptomatic. There are a lot of days where you wouldn't even know.

But, on his bad days, it's very hard to keep sight of how good he looks on his good days. For Bodie, his heart failure shows up almost entirely in GI symptoms. On his bad days, he wakes up nauseas, and sometimes throws up mid-morning (usually at school, unfortunately - yay for Bodie, who now gets to be that kid who barfs at school - as if he hasn't been dealt an unfair hand enough already). He usually perks up later in the day and is fine by evening. But the bad days are hard to predict and often leave him sad. And some days we can make it 2 weeks before he has a bad day. And other weeks, he'll have 2 bad days just a few days apart.  It's frustrating for Bodie and heartbreaking for us. 

He cannot sustain this up and down indefinitely. Honestly, it's working for now, but it's no way for a 7 year old to live life. We tell Bodie all the time that this season won't last forever - either his heart will recover - or it won't, and he'll get a new one that will work much better for him. That said, he's currently stable enough that the heart failure doctor is comfortable waiting 3 months to see us again (a 3 month pass is pretty fantastic for a kid in severe heart failure!). If his heart function still has not started to rebound by then, then it's likely we'll having the transplant discussion. 

This does not mean he will be listed for a heart in 3 months. What it means is that we will have a discussion about evaluating him for transplant in 3 months. If, based on where he looks in 3 months, we decide to proceed with that, THEN we will start the transplant evaluation process at that time. The process itself takes some time. Even then, the decision may be to hold off on listing him if he otherwise looks ok and is compensating well. Or, the evaluation may reveal that he really needs to be listed ASAP. We don't know at this juncture. So, transplant, while still on the table, is still a bit off for Bodie - as of right now, at least.  

But all of that is a conversation for another day. We covet your prayers that that day is a bit further off even than it seems right now. Your prayers have brought our boy this far and we know God has the ability to heal and we covet your prayers that He will continue to heal our sweet boy. 

Today was a good day. Bodie is having a GREAT day symptom wise and his appointment was good. His function has not gotten any worse and his bloodwork continues to improve.  He got back to school in time to enjoy his school's annual Game Day with his classmates and is having a playdate this afternoon with one of his best friends. In a life of constant fluctuations with his health, we will take days like today any day. And pray for many, many more of them.

I will leave you with this. 

In case you're wondering what brave looks like, here it is. After a blood draw, ekg, echo and consult with the heart failure doctor, he brushed it off and headed back to school and into Game Day with a huge smile and dressed in orange just like every other kid in his class. 

Today was a good day indeed. 

Sick little dude

We have one sick little boy on our hands right now.

Some nasty bug has hit his 1st and 2nd grade class and taken down all but 2 of the kids (at latest count, at least). And it took them all down within 4 days. Crazy.

He has been out of school since Tuesday, with a fever and coughing, and some congestion.

By all accounts, although it's hanging on, it's not the worst virus in the world. Manageable symptoms - for a healthy kid. He's tolerating it well, thankfully. 

Tuesday night, his heartrate was running in the 160s and his sats were in the high 80s (both NOT good for any kid, let alone ours), but we managed to eek it out at home and haven't seen anything that drastic since then. His heartrate is a little high, but his oxygen saturations seem to be holding steady, for the most part. He doesn't have labored breathing, he's not retracting. He's just uncomfortable and tired, and we're managing it with Motrin and Tylenol. He still has an appetite, so continues to eat well. He seems to be managing it like every other kid in his class. Up and down, but really just making him a little more tired and cranky. He's been watching movies, doing puzzles and building Legos. Like any typical sick 7-year old.

Except that he's not.

He has half a heart.

And his function is severely depressed.

I cannot stress enough how lucky we are to be able to manage this at home.

Many of our friends don't know this, but most kids with the degree of heart dysfunction he has end up inpatient for every virus, particularly if they're respiratory in nature. 

So this virus has me on edge.

Bodie has always had a robust immune system. 

When he was 4 months old in the hospital recovering from both c-diff and MRSA in his bloodstream at the same time, the cardiac team consulted immunology. The immunologist walked in and said "I'm happy to test this kid. But bottom line, a Norwood single ventricle infant who is still alive after battling both MRSA and c-diff at the same time clearly does not have any issues with his immune system."

And that doctor was right. 

Although Bodie has caught a lot of bugs over the years (particularly when his oxygen saturations were lower, making it harder for his body to fight stuff off in general), he never had to be hospitalized for viruses or bacterial infections. He just kinda powers through them. We have been exceedingly blessed.

But heart failure changes the picture.

When Bodie was diagnosed with heart failure in early December, the doctor told us "this cold and flu season will tell us how soon he needs to be listed for transplant. If he is inpatient every time he gets sick, then his body will clearly be telling us that it's time." I am pretty sure, based on the condition of his heart, she expected him to be inpatient most of cold and flu season.

And yet, he is holding strong at home. 

We are so blessed.

If it takes him a couple more days than his peers to get past this, then I will consider it an incredible blessing.

But the more prolonged the virus is, the greater the likelihood that his heart will grow tired and we'll end up needing to take him to the hospital.

So please pray for our little dude. 

Pray that we're nearing the end of the virus, and that we can get back to life as normal (well, life as normal as it is with a half a heart that's not functioning too well.)

We were supposed to see the heart failure team this week, but rescheduled due to Bodie being sick. We aren't interested in bringing his germs into the cardiology clinic, particularly to the heart failure team, who deal with kids in heart failure (who can't handle viruses due to weakened heart function) and transplant kiddos (who can't handle viruses due to immune systems wiped out to prevent rejection of their new hearts). They have tentatively rescheduled us for next week. Please pray Bodie is well enough to go and that we get good news.

Birthday blessings

This morning, Dusk and I were lamenting how tough things have been lately, with this never ending lawsuit and our refrigerator that decided it's not working again. And then, like God always does, he nudged me a bit via a Facebook reminder of what was happening 7 years ago at that exact time in the morning. We were sending our 6 day old son back for his first open-heart surgery.

Ok, God, I got it. 

This, everything else we're dealing with, it's the small stuff (well, except for the health stuff - there's nothing small about the health issues Dusk and Bodie are facing). But everything else is annoying and overwhelming at times, but still just little stuff. 

And that seemed like the perfect time to share some pics of Bodie's birthday party this weekend. 

Bodie picked a skateboarding theme. I did my best, but the kid gave me a run for my money this time. But we played "pin the wheel on the skateboard" and had skateboarding coloring pages and mini-ramps for the kids to decorate. So I think I earned at least a little mom cred on this one.

But really the coolest part of the party was the cake. I'm not gonna lie.

The cake was phenomenal.

We went through Icing Smiles again, an incredible nonprofit organization that works with bakers across the country to provide birthday cakes completely free of charge to families impacted by the critical illness of a child. So we asked for a skateboarding cake and boy, did they deliver.

Look at this cake!

Amazing. 

And SO SO good. 

Bodie was not the only one who couldn't get enough of it (and I may or may not be eating leftovers every night after the kids are in bed!)

Here's the coolest part. 

Icing Smiles works with a network of bakers. 

So you give them your request and they put out the call to the bakers in your region, asking if anyone is available to do a cake with a particular theme on a particular date. And you get whatever baker is available. 

Well, the baker this time was the EXACT same baker who did Bodie's cake the last time we used Icing Smiles (when she made an amazing minion cake for his 4th birthday)!!! It was so wonderful to have the same baker, and to give her a hug and for her to see how much Bodie has grown. 

I cannot tell you how much I cherish this:

AND she even brought a set of books for Sierra!!! 

I know, amazing, right?!?

Christine is truly an angel - I kind of feel like she's our personal sugar angel!!! 

If you'd like to give Christine some love (and seriously, you should - she is an incredible human being), you can check out her Facebook page here. 

Anyway, the party was so fun. A wonderful celebration of our sweet, brave boy. With 20 kids running through our tiny little house, it was a bit chaotic (and it took my introverted self 2 days to fully recover!), but so worth it. Kids were running around and chasing each other and having so much fun. 

Bodie didn't hate having the girls fighting over who got to sit next to him. 

And Grandma Jan and Popo Alan even flew out for the celebration and got to stay a couple of extra days, which proved to be icing on the cake for us!

I'll leave you with one final picture. Because I think it encapsulates who our son is.

In case you're wondering what hope looks like, this is it. Half a heart, currently in heart failure, running around barefoot, clobbering a pinata at his 7th birthday party. If this picture doesn't capture this kid's indomnitable spirit, I don't know what does.

The Big 7

To our sweet Bodie,

Happy Birthday! 

I cannot believe you're 7 - how is that even possible??? 

(I know you refuse to accept that you turned 7 today, and are insisting that you are 6 until your party on Saturday, but since I was actually there the day you were born, I'm gonna go with my recollection on the date.)

I know this wasn't the best day for you.

I know that CHD doesn't take a break just because it's your birthday, that heart failure doesn't look for a "good date" on your schedule to rear its lovely head and throw symptoms your way. 

I know you put a brave face on it and muddled through a long school day even though you were tired and nauseas and thought you might throw up.

I know all of that.

It's unfair and it sucks.

But here's the really important part that your daddy and I want you to know.

You are amazing, kiddo.

You really are.

I know every parent thinks that, but honestly, there is just something special about you.

When I was 17 weeks pregnant and Dr. Kim told me you would be born with half a heart, we realized we weren't promised any birthdays with you. And yet, we've already celebrated 7! 7!! And here you are, currently sitting in a rough patch, but thriving nonetheless. 

You're doing all these things a "regular" 7-year old kid would do. You're reading (you really really are! It's slow, but it's there and we couldn't be prouder!). You're building Legos allllll the time. You love art and Star Wars and Dr. Seuss Books. You are obsessed with MacGuyver (ok, maybe that's not a typical 7-year old thing - you can blame that on a dad who grew up in the 80s. We'd like to think you're learning good survival skills by watching it with dad). You're thisclose to testing for your next belt test in karate (and usually grumble about having to go - like any other 7 year old). But you are NOT a typical 7 year old. You have been so so much in your life - and yet, are such a typical kid. I know you don't get how incredible that is - and that's ok. It's probably better that you don't. 

But you should know, you are funny. So so funny. And you have this amazing, magnetic personality. Kids your own age may not necessarily be drawn to you, but it makes them put up with your shenanigans, which is pretty darn helpful for getting through childhood. But kids younger and older, and especially adults, are totally drawn to you. People are often telling me how much they love talking to you, how funny and sweet your stories are. That is God's gift to you - and to us, really. He has given you this sweet, engaging personality. So the physical body he gave you might not be all it's cracked up to be. But there's a lot more to life than having a good physical exterior. That part just gets old anyway. But what's on the inside - the sweet, funny, tenacious personality - that's there to stay, buddy. And that's an incredible gift to have.

And your love for life blows us all away. You have been through so stinking much, and yet still have a smile on your face and silly laughter in your voice. That is a gift. Tonight, as you were eating KFC and Rice a Roni for dinner in your underwear (you're welcome for not sharing that pic, buddy - also, I don't want CPS to take you away because I posted a pic of you in your underwear, so there's that), I was just marveling at you. At your insightful questions. At your idea to run around the table and have everyone give you 7 hugs. At you recounting all the kids at recess following you around as you ran around in your new eagle wings (by the way, buddy, I was thisclose to not buying those for you - clearly getting them was a good call, so thank you for the constant begging me to get them for you). 

You, my sweet boy, are a gift.

In so many, many ways.

Please don't ever lose sight of that fact.

God is going to do amazing things with you.

He's already doing them. 

He's already done so much in 7 short years.

We don't know the path that will get us from 7 to 8. But we pray it will just be the first of many of the next 77 years with you.

We love you, buddy. To the moon and back a million bajillion quadrillion times.

And then some.

Happy Birthday, big guy. 

CHD Awareness Week - and a way to help us!

Congenital Heart Defect awareness week runs February 7-14. 

Which means we're right in the middle of it. 

I've been fairly quiet this year during CHD Awareness week, and I had an opportunity to share in a piece for The Mighty about why. You can see that post here - 

A Mom's Plea During Congenital Heart Defect Awareness Week 

(I write from time to time for The Mighty, a disease and disability community - I typically write about CHD, but occasionally branch out to ADHD and other topics as well.) 

Please take a moment to read this and share with others. 

Additionally, many of you have asked how you can tangibly help us. 

In December, two of my fellow heart moms came alongside me and asked how they could help. They suggested a GoFundMe account and I said no. I kept thinking things would get better, that the pressures would diminish, that we wouldn't need help. So we opted instead for the GrubHub and Target "gift card train," which has been so so helpful! But here we are 2 months later and as you know from my last blogpost, if anything, we're under more pressure than before. So when my dear friends Lillian and Shannon asked me again recently, I relented. We're not good at asking for help. We would so so much rather be on the giving than the receiving end. But if God is teaching us anything in this time of trial, it is that we need to say yes - to prayers and to offers of help. We are learning.

So, please pray for our family, and, if you are so led, contribute to alleviating some of the pressures we are facing. You can find the link to our gofund me account here - Bennett Family. 

We are so profoundly grateful for your love and support. ♡♡

Under Pressure

I love Jen Hatmaker's books. 

In one of her books, she makes a reference to having a pie and everyone wanting a slice of it. Whoever is asking for a slice doesn't think they're asking for much - I mean, you have a whole pie, so they're really not taking much. But they can't see that everyone is asking for the same thing - and by the end, you have nothing left. 

That's how I'm feeling about life right now.

Most people who know us and what we're going through feel sorry for us, and pray for us.

The thing is, most of them only see one of the slices of pie that we're dealing with - or maybe two. 

Most don't realize just how much stress is piling up for us right now. 

That's why I want to share this here.

To give you a better idea of everything we're dealing with and beg you to pray for us. 

You guys know I reach for joy in the midst of struggle. 

That's how I was raised, that's how I'm wired, and that's how I live life. 

I have had so many people lately telling me how strong I seem and how well we're handling it.

Friends, it is so an illusion.

We're barely hanging on.

You know that song "Under Pressure"? 

That is us every minute of the day.

We've been able to manage all of this fairly well so far, but it just keeps adding up and we are feeling it.

Bodie is doing ok. 

Definitely not as good as he looked a month ago.

He's had a rough couple of days, and we are struggling with the question of whether he suddenly doesn't want to eat again and is tired and having stomachaches because of the natural ebb and flow of his heart failure. OR if it's a reaction to this newest medication. If it IS a reaction to the medication, then we need to stop it (even though it seems to be helping lower his heartrate). But if it's NOT a reaction to the medication, then we need to keep him on it to give his heart the best chance to heal. And we don't want to throw in the towel prematurely if his symptoms are just coincidental. We need prayers for his body to heal, and for this new medicine to help him, not hurt him, and for the path to be clear with this new medicine.

But it's more than just Bodie's heart. 

Even most of our closest friends don't even realize just how much we're dealing with.

1. We're dealing with Bodie, of course. That is our biggest stressor.

2. But Dusk is also in constant daily pain from his hip replacement a few years ago. He has to get regular therapy just to keep the pain manageable. And we are in a nasty lawsuit with the doctor who did that hip replacement. You may recall that Dusk wrote a negative yelp review about his experience and the doctor went after us to remove the review. He can't sue us for that, so instead he's suing us under a contract issue (he warranted that he was in network, but billed from an out of network office, and is suing us for the amount the insurance won't cover). Because it's not an open and shut case (from an ethical position, it absolutely is, but thanks to lots of legal loopholes, it's not as clear), we are now in the unenviable position of paying him $15K now to settle (talk about a huge stressor), or risk going to court and losing - and having to pay hundreds of thousands of dollars. The amount of stress this is giving us is off the charts and we covet prayers for an immediate and peaceful solution to this. We need to get this off our plates. I cannot stress this enough. Our family has been through too much to have to worry about this right now. PLEASE PRAY FOR A SOLUTION TO THIS.

3. I have a badly herniated disc in my lumbar spine, and did epidural injections a year ago to try to ward off surgery. Thankfully, the injections got me out of enough pain that I have been able to do twice a week physical therapy since last spring and have made a lot of progress in strengthening my core. However, when I am not doing regular therapy (which I wasn't able to do for much of December), my back stiffens up fairly quickly. And stress makes it so.much.worse. My back is definitely suffering the effects of the recent stress build up (so is my GI tract for that matter, but I won't bore you with those gory details). I can usually handle stress pretty well, but this is all getting a bit much for me, and I'm seeing it playing out in my body. The last 2 months with Bodie's health have rocked me. They've forced me to come face to face with something we always knew was coming, but that I had successfully put out of my mind. And it's terrifying. I am struggling to manage my anxiety as a result. It's not pretty.

4. We found out this week that Sierra has a plantar's wart on her foot. Not a big deal in the grand scheme of things, but we need to get her into a podiatrist to see her. I laughed when the doctor suggested that - and said "Sure, I'll get right on that. Right after I get my thyroid ultrasound done" (In have a benign growth in my thyroid that has to be monitored - I have scheduled and canceled that ultrasound twice since early December, since both days Bodie was in the hospital). When you're in crisis mode for so long, other "non crisis" events which really wouldn't be a big deal any other time get pushed to the bottom - and accumulate quickly. :-( But in the meantime, the poor girlie is in a fair amount of pain (oh, and has some fungal infection on her leg and impetigo on her face from chapped lips - fun stuff)!!

5. Last week, my car had an unfortunate run in with a rather large concrete column. I have no defense except that clearly I wasn't paying attention as well as one might have hoped. There is some fairly serious damage to the side of my car. We really should just file it with the insurance company and get it fixed. But we're very cognizant of the fact that we had 2 large claims within 11 months (the burglary and then the house fire) and we really don't want to put ourselves in a position where the insurance company drops us because we're just too expensive to insure. :-( So, we're just leaving it alone for now. And if you happen to see me driving the van, you'll at least understand why we're not getting it fixed just yet. Can I blame it on my ADD??? Cause I totally will.

6. Oh and let's not forget that the IRS is still holding onto our (not small) 2014 tax refund due to some identity theft issue. The "non-identity theft" division says there's no hold up and it should have been released. They keep sending requests to the "non-identity theft" division to release it. I'm sure they'll get right on that. 

7. We're starting to realize Bodie is significantly behind in reading. We knew he was a little behind, but didn't realize until this week just how far behind. He's a smart kid. We think the last few months have just been TOO MUCH for him and he's just D.O.N.E. He's not really interested in doing anything that's going to require much effort. Which I get. But the kid still has to learn to read. So I'm trying to build that intense focus into our schedule (and battling my own mommy guilt that he's not already reading super well). And we stopped his speech therapy in December because I just couldn't do one more thing. So he's still struggling with his speech (he has a lisp and has pronunciation issues). I know we need to get that restarted. I know we do. But I just can't right now.

I know there's more. 

Mostly all the normal stuff that families with school age kids deal with. 

The usual stressors of busy schedules, making sure everyone is fed, birthday gifts for friends are purchased, spelling bee words are studied, bills are paid, etc. Just a lot.

I'd say we're pretty much tapped out with life stresses.

My purpose in sharing all of this was two fold. 

Firstly, just to let you know how much we're dealing with. Many of our close friends know some of what we're struggling with. But very few know we have been dealing with all of these issues. So when we don't reply to emails, or rsvp to events and show up 2 hours late, it's not because we don't care. I promise. It's because we just can't even with life anymore. 

And secondly, to ask, no - to beg, for prayer.

We're in a rough spot.

The pressures are building up, from all sides it seems.

We're leaning into God.

That's what we're supposed to do, and that's what we do when things get tough.

But, at this point, we've leaned so far into Him, we're pretty much lying face down on the floor. We are totally depleted and don't have much effort to keep leaning in. This is where you come in. 

Please pray for us.

Pray for Bodie's heart, his health, his stamina. Pray for miraculous healing for him.

Pray for this lawsuit, for it to just go away. We need it to stop weighing us down.

Pray for a break from all of this drama. From all of the hits we keep getting. We need more than a week of normalcy. We need a long stretch of good to come to us. We need health and we need healing. And we need time so that we can get all of the other stuff taken care of. 

And we need you to intercede on our behalf. 

Please, when you pray, pray for us. 

Meh

Today's appointment was...interesting.

The good news is that Bodie's heart function hasn't gotten any worse.

The not so good news is that it also hasn't improved at all. 

The heart failure doctor said he was really trying to find improvement on the echo, but he really didn't see any.

(We don't know what his bloodwork looks like yet, since we did that at the end of the day.) 

Man, this kid is SO good at compensating.

I'll be honest.

I'm bummed. 

I had really hoped we'd see an improvement on his echo. 

He just looks SO GOOD from the outside.

But his heart failure doctor (and heart failure docs are negative by nature) actually said that a month just isn't much time to see change. We need to see how he does over the next 3-6 months to really determine whether the heart will rebound. I needed to hear that today.

The fact that he DOES look so good from the outside is a very, very good sign. We are all encouraged by that. Because he is stable on the inside and looks so good on the outside, we have tabled the transplant discussion for now.

However, if Bodie's heart function doesn't start to pick up fairly quickly here, that conversation will be front and center. For now, it's just the elephant sitting in the corner, just breathing heavy and giving us dirty looks, while we all smile and pretend it's not there. And see the heart failure team again a month from now.

So we wait and pray.

We're getting pretty good at that.

We also made one medication change.

Bodie is having persistently high heart rates, sitting usually in the 130s to 140s. That's not dangerous to him now, but isn't good for the heart in the long term. Sitting at those rates day in and day out wears on the heart and can cause further heart dysfunction. His electrophysiologist just isn't comfortable leaving him like that. So, we're starting him on Carvedilol, a medication commonly used to treat heart failure, which has the added benefit of a small beta blocker component. We know a number of heart friends on it who've seen significant improvement in heart function while on it, so we are hopeful.

To say that we're nervous going back on beta blockers is the understatement of the century. BUT he is starting out at a very low dose (unlike the very high doses of Nadalol he was on when he went into sudden heart failure). So we're hopeful that a small dose will be just enough to bring his heartrates down without triggering further heart failure. And the bottom line is that we trust his team and know that if they are recommending it, it is because they believe it is in Bodie's best interest.

So, lots of prayers tonight:

1. Pray that Bodie tolerates the new medication well, and that it HELPS his heart function and brings his heartrate down without causing further heart failure or negative side effects.

2. Pray that he continues to feel really good, as he has lately. Pray that his energy stays up and he continues to eat like a teenage boy. 

3. Pray for peace for all of us. Today was a reminder that this heart failure is not just a quick little detour off of our journey, but a place we're meant to stay for some time. And it's an exhausting place to stay. We're all worn out by the last few months, and the promise of it continuing doesn't exactly help replenish our reserves. Please pray for us to find ways to find respite amongst a really exhausting journey.

Bodie looks good from the outside. 

He really really does.

I was marveling at him during his echo today, thinking of what an amazing kid he is and how far God has brought him with this crappy little half a heart. 

We are so, so blessed.

When we got home tonight, he went to change his clothes and got quite a start when he pulled his shirt off and remembered that he didn't let me take any of his stickers off at the hospital.

He picked them all off himself (he also takes out his own IV's these days) and found a much better place for them.

Also known as our bedroom door.

As you can see, he's still got his sense of humor intact. 

Thank GOD for that! 

Holding steady...maybe

I've been getting a lot of questions lately about how Bodie's doing, and the answer is, we don't know. 

From the oustide, he looks good. Actually great. Definitely better than he has in months. In some ways, better than he has looked ever. 

He has so much energy. 

His color is so much better.

His sats are back to baseline (typically mid 90's, with dips down to the low 90's here and there).

He is still eating us out of house and home. His first words every.single.morning are "I'M STARVING!!!" and he walks in the door after school asking what's for dinner and when we're eating it. It's sort of like having a teenage boy in the house. It's amazing and something we have NEVER experienced with Bodie. He told us he was hungry more in the first 2 weeks after this last hospital discharge than in the first 6 1/2 years of his life combined. We don't really have an explanation, other than to assume that the beta blockers he had been on since infancy had been stunting his appetite.

He just looks better all the way around.

We could almost convince ourselves that his heart function must have rebounded.

Almost.

But he had a rough week last week, where he wasn't feeling well again, complaining of tummy aches and being tired. His heart rate was running higher and his sats were running lower.  He has bounced back now and seems better, so we're just assuming he had the tummy bug that had been going around school. But it was a not so subtle reminder that things aren't back to baseline for Bodie, and that his reduced heart function makes it that much harder for him to fight off bugs.

And his heartrate continues to be really erratic. It doesn't seem to be bothering him nearly as much as it used to, but it's not good for him long-term. We don't have any answers on that yet.

And, in truth, we have NO idea how things are looking on the inside. We HOPE that because they're looking better on the outside, that correlates to an improvement on the inside. But, if we know nothing about our son, it's that he's good at compensating. So it's entirely possible that nothing has improved on the inside. We just don't know.

We have a battery of tests and appointments on Thursday up at CHLA, and we'll be seeing both the Electrophysiologist and the Heart Failure team. And we will know more then. 

We covet your prayers for that appointment. 

Please pray boldly that his heart function has completely rebounded. 

Pray that damage they thought a month ago to be irreversible has actually reversed itself. 

If not that, then at least some improvement. 

PLEASE pray for improvement. 

WE NEED TO SEE IMPROVEMENT.

Pray for his BNP (measure of heart failure via blood test) to have continued trending downward. 

Pray for his heart function (measured by echo) to have improved. 

Please pray for our boy.

So much is riding on this appointment. 

And we really have no idea what we're going to find. 

So you can probably guess how high nerves are running in our house right now. 

Please pray for peace for us all going into this appointment. 

And just pray for our little rockstar. 

How we define "Inspire"

Since Bodie was diagnosed with heart failure, I have been in such a rough place, emotionally.

Outside of the fear of the unknown, which obviously is a big factor, it was more.

Bodie has always been such an inspiration to other families of children fighting with congenital heart disease. I didn't even realize how much of an inspiration he was until he got sick in November and people started coming out of the woodwork to tell me how much our journey had affected theirs, how much HOPE Bodie had given them as they started their own CHD journeys. 

Bodie has always been a kid who has suffered complications, but has pushed through and had a pretty amazing quality of life in spite of his hardships. He has provided so much hope to newly diagnosed families, who could look at Bodie and say "wow, look at him! You'd never know he was sick  - he looks like a regular kid and lives a regular life. If he can, maybe my child can too!"

But the heart failure changed all of that on a dime.  I kept watching Bodie struggle, thinking "how can we give hope to newly diagnosed families anymore? No newly diagnosed family wants to hear that a 6 year old HLHSer suddenly goes into heart failure and is in and out of the hospital and that his parents are scared out of their minds."

I was really struggling with trying to reconcile this sudden shift for Bodie.

And then an amazing veteran heart mom reminded me that hope is "living with half a heart and waking up to find joy and optimism and be kind another day. That's really all it is. That's hope. It's not about perfect health. It's not about perfect labs or perfect test results or straight A's or being able to play sports...my son wakes up every day and chooses joy, optimism and kindness and that, is what hope looks like."

And I realized she was right. 

I am always grateful for this mom and her wisdom (her HLHSer is an adult now, so she has lots of it!). 

But I was especially grateful for her words on that day. 

I needed to hear them.

Things are still scary for us.

We spent all day Wednesday in the ER with Bodie, with what we were afraid was worsening heart failure. It turned out his heart is stable, maybe even improving just a bit (thank God!), and what he had was just a bug. 

He seems to have bounced back and is on the upswing again, thankfully. We are so grateful for that.

We are on a roller coaster, to be sure. 

But, even so, my friend is right. 

There is still so much HOPE and INSPIRATION to be found even in this part of the journey.

Today, on the last day of an unquestionably rough year for our family, we hope newly diagnosed families can look to find HOPE in this.

Our boy is HAPPY.

The day after being in the ER all day, he was touring a space museum with his grandparents and family, running and laughing.

Instead of having grandma and grandpa here because we needed help while he was in the hospital (which we did), for that moment, we got to be a family just going to the museum with grandparents in town for the holidays.  

That night, he hit another regular 6-year old milestone, by losing another tooth!

Yesterday, he was able to take a hike and explore God's beautiful creation.

Because we're so close to this, walking day in and day out in this very scary place, I sometimes forget to take a step back and look at the big picture.

My son has a half a heart.

A half a heart.

And that heart has some serious communication issues with itself.

But, thanks to the the power of prayer and modern medicine, he is still here with us, bringing us more joy than we thought possible.

At the end of the day, this journey is scary and the turns are bumpy and unexpected. 

BUT our son, even so, is happy. 

He wakes up and chooses to embrace life. 

He is funny, he is smart, he is happy. 

He knows Jesus and understands the importance of that relationship.

We are blessed every day by him. 

Big picture here. 

We are so so blessed. 

Fighting to find joy and happiness and gratitude despite the difficulties we face.

That, my friends, is what inspiration looks like.

This 6-year old should inspire you. 

He inspires us.

The gift of generosity

We have now been home a few days and Bodie (from the outside at least) is doing well. Really well. His rhythms are still not improving (which worries me considerably), but he has great energy and is eating better than he has probably in his entire life. We are feeling very blessed, but still very much in need of prayer that all of this somehow is translating to an improvement in his heart function.

I just want to take a moment to thank those of you who have so generously given to our family over the past month. We are overwhelmed by the generosity of our close friends and family, and even complete strangers who have been touched by Bodie's story.

To Becky and Cami, thank you a million times over for coming to our house, picking up all of our Christmas presents, wrapping them with unbelievably sweet extra touches, and dropping them back off. It truly was like having little Christmas elves!!! 

To the countless local Westchester moms and school friends who sent Legos Bodie's way, THANK YOU (another separate post about that coming soon). You helped Bodie feel like a little boy - instead of a kid stuck in a hospital!

To Lucy and Julia, who came to the hospital to sit with me and bring stuff for the kids - and see beyond my "I don't know how to ask for or accept help" to figure out a brilliant way to help our family. Thank you for your compassion and love.

To Yasuko and Brittany, who took Sierra without even questioning it (even when she had a fever and was probably infecting your kids), thank you. And thank you to those who so generously offered to help with Sierra. It means more to me than I can say to know that my sweet girl is being loved on even when I can't be there. 

To Alexander's entire family - getting the opportunity to walk beside a fellow fragile heart warrior and to see him rebound 100,000% from a heart transplant meant more to me than I can say. At a time when we are being asked to think more concretely about transplant, and possibly being thrust into a world we weren't prepared to enter for some time, we so needed that. I needed to see a post- transplant kid fly through recovery and get home at 19 days post transplant, doing far better than he ever did before. I know he was going to do incredible regardless - but thank you for letting me witness his journey. Thank you for letting me into the wonderful side of transplant.

To all of Bodie's classmates and teachers who sent cards, thank you. Bodie's face lit up as he went through the cards - and I shed a few tears. Thank you for being an open, loving community even when it's scary. Especially when it's scary. We are beyond blessed to be a part of your community.

To Shannon and all of the women who showed up to pray with me and over me and share your love for our family on Wednesday night, thank you. I was profoundly touched and strengthened by the time I spent with you all. I am so grateful to have such wonderful Christian women in my life.

To Michelle, who sent a cleaning company out to clean our house when I was too paralyzed by anxiety to do it, thank you. To be able to come home to a clean home after a hospital stay meant so so much.

To everyone who has donated money or gift cards, THANK YOU. That truly is our most tangible need right now. Many of you know I work part time - I do accounting consulting work. I freelance. Which means, if I'm not working, I'm not getting paid. We depend on my income to keep our bills paid. When Bodie is in the hospital, I'm not working. When he has been in heart failure for month prior to that admission and had lots of extra hospital appointments, I am not able to work as much. When he gets out of the hospital 6 days before Christmas, it is hard to fit in extra work hours amidst catching up on life and the holiday business. Combine that with the fact that I was SO on the ball this month that I made sure to pay our home mortgage not one, but TWICE. (Yes, you read that right.) And, because this is Los Angeles, and mortgages are over the top, it was a very costly error to our bank account. Needless to say, Christmas was looking lean. So, to have the outpouring of Target and Grubhub giftcards and checks come in unexpectedly meant more to me than I can say. It truly was God answering my unspoken (but very very deeply felt) prayer. THANK YOU. 

If you would still like to help our family, we do very much need and welcome help. My dear friends Lucy and Julia have articulated some wonderful ways to help here. (If you are unable to access it, please just let us know and we'll repost it.)

To all of you who have prayed constantly for our boy and our family. We know this is why he is here, running around full of energy. THANK YOU. God hears our prayers. Please, please, please keep praying.

Our Christmas Miracle

Bodie was discharged this evening! What a beautiful early Christmas gift! 

We didn't tell Sierra Bodie was getting discharged until she showed up at the hospital and saw us standing out front. She jumped out of the car and ran to him and he flew into her arms. There was a group of women standing behind us and they all started crying. It really was perfect.

Truthfully, we hesitate to use the word miracle, because we don't know yet what all this means. Bodie's labs this morning showed a significantly improved BNP (measure of heart failure). To put it in perspective, the week before his cath, it was over 900 - and this morning, it was 369!!! We still want it to continue to lower, but this was a significant movement in the right direction. However, his echo doesn't show much improvement. We are very, very hopeful that we will see improvement as time goes by, but we do not have a guarantee on that. 

Bodie looks good, the be sure. Actually, he looks fantastic. The most energy and highest oxygen saturations we have seen since before he went into heart failure. He has been squealing and chattering nonstop with Sierra in the backseat as we drive home. Clearly, the changes we made this week have been good for his body. But whether those changes will help us avoid transplant for now is anyone's guess. We covet your prayers for his function to continue to improve.

He continues to have a higher heart rate than we would like, but because he is stable and otherwise looks so good, the team felt it was safe to manage the rhythm issues on an outpatient basis. Please pray that, as his heart heals, his rhythm issues will lessen as well.

Tonight, as we find ourselves 5 days from Christmas, we are overwhelmed with gratitude to have our little family back together and home. We are so grateful to celebrate our Savior's birth together. 

We don't know if our son is getting the Christmas "miracle" we prayed specifically for, but he did indeed see miracles happen this week. He had a cardiac catheterization that showed his Fontan conduit to be working well. He had a single solitary seizure that left behind no neurological deficits and instead lit a clear path for us going forward.  And he sits with us now, looking better than he has in over a month. However, you define "miracle," we have indeed witnessed them this week.

We thank you for your love and support during an extrordinarily difficult week. Please continue to pray for Bodie and our family as we enter this new season of uncertainty, watching and waiting to see whether his heart function will rebound. 

Uncertainty is not easy for anyone, and we are so grateful during this Advent season for the constant reminders of the certainty our Savior provides. 

Merry Christmas from the Bennetts. 

The Honest Truth

This is about to get real here.

Super honest.

But first - Bodie is doing better-ish. Symptom wise, his nausea is coming and going, but he hasn't thrown up since yesterday morning. His energy is better. Both great things. But we're not making much progress on the rhythm end. A little. But really his heartrate is continuing to stay significantly higher than we want (in EAT), and we seem to be caught between a rock and a hard place - he needs beta blockers to bring his rate down, but beta blockers are causing heart failure and hypoglycemia. We should know more about what the next steps are when the electrophsysiologist comes in tomorrow. Please continue to pray for him (Bodie, not the electrophysiologist - although I suppose he could use your prayers as well, as he attempts to figure out the conundrum that is Bodie).

Ok, now for the honest part.

This journey of life with a medically fragile child is HARD.

After I wrote that last blogpost, I was done. 

More than done. 

I was tired of being here, worried sick for my poor boy and missing my sweet girl.

I am usually pretty good at staying strong and positive. It's sort of my "role" in our family and one I relish and wear well.

But on Friday, I finally cracked.

My friends who I was texting because I couldn't trust myself to talk without crying (and didn't want to cry when Bodie was awake) could see it.

Dusk could see it. 

I'm pretty sure anyone within 10 feet of me could see it. 

I guarantee you the nurses who saw me lying in bed with Bodie all Friday afternoon and crying everytime he fell asleep could see it. 

Friday was just an all around rough day.

I needed a break, to get away, to regroup, to see my girl, and to get myself in a better space to stay positive for my sweet boy. (And, the severely herniated disc in my back really needed me to get in a better space if I wanted to continue to be able to walk after sleeping on a hospital couch for a week.)

So, Dusk came up Saturday and spent the night and the better part of today with Bodie. 

I was able to get away, and spend some much needed time with Sierra. 

It worked out really well.

We had BIG plans, of going out to dinner and getting lots of snuggle time in. 

In reality, we were both too tired to do much of anything but Taco Bell. 

And we did eventually get the snuggle time in, but first we got in a run to urgent care, because my sweet girl has a raging case of tonsillitis. And then we got in a run to CVS to wait for a prescription to be filled. And then we finally got home and got the first dose of meds in her - only to have her throwing up an hour later. 

So, if you're counting, I managed to deal with both kids' vomiting in a 12 hour period - and dad missed them both! I call it the "power of dad." It's a thing.

But I digress. Being home was rejuvenating and I was so glad to be there for my girl when she was sick. Because, at the end of the day, when you're sick, isn't mommy who you always want?

Sierra is doing better now that the antibiotics are onboard. But this morning, she broke down when I wouldn't buy her a water bottle at Target (in my defense, she didn't realize she wanted it until AFTER we had already checked out and the person working behind the counter at the "We're too healthy to continue to offer the really yummy Pizza Hut pizza anymore so now we offer some healthy crap you'd never actually eat" place was taking for-freaking-ever.). 

I knew it wasn't about the water. 

She's a good kid.

But, like me, she is DONE.

She's DONE with her family being separated.

She's DONE with being scared her brother's not coming home (I know it's only been a week that he's been in the hospital, but a lot longer we've been dealing with the heart failure issue).

She's DONE with being jealous at all the attention he's getting and then feeling immediately guilty for feeling jealous.

She's 9 years old, guys.

This is stuff that's hard for us adults to wrap our minds around.

Unlike me, she doesn't have a bunch of heart mom friends she can vent to.  So she sat in my lap and she vented to me. And she cried and said she couldn't be brave and strong anymore. And we talked about how hard it is to be brave and strong. And about how we don't know what God is doing here, but that He is doing SOMETHING. And that it's our job to let His light shine through our lives. That it's ok to be afraid and it's ok to be angry and it's ok to be frustrated.  But that the Bible has so so so many verses telling us not to worry. And how maybe someday God is going to use her to minister to other heart siblings, just like he has used mommy to minister to other heart parents. And we prayed. 

And I realized that me coming home wasn't just about me, but it was about her and that moment. Because that moment so needed to happen. And I was so grateful God had orchestrated that moment in that busy Target parking lot.

And these moments - where the kids were able to see each other. 

(Yesterday, when Dusk and Sierra came to the hospital and Bodie and I saw them from his window. You can see them standing on the street below. It was a total day-maker moment for Bodie.)

(And this afternoon, when Sierra and I returned and Dusk and Bodie saw us (you can see their heads in the window between the trees on the second floor).)

They miss each other so much and were over the moon to be able to see one another.

I had two amazing heart mom friends stop by the hospital this afternoon, and sit with me a bit and love on me and give me sweet gifts for the kids and me. I was totally humbled and overjoyed by their presence. 

So, tonight, my spirit is replenished and I'm think I'm ready for the week ahead and whatever it may bring. 

I hope.

So tonight, please continue praying for our family. Pray for Bodie, for healing, for his heart rhythms to get under control so that we can GO HOME. Pray for Dusk and I, for continued strength and positive energy. And pray for Sierra, for her to continue to rebound physically, and for peace and security amidst a pretty tumultuous time.