On love and loss...again.

We don't talk about it much, you know...those of us who have been through it.

Especially those of us who have been through it multiple times.

Sure, we're brought out of the shadows when a new mom goes through it and needs an outstretched hand, a softly whispered "I've been there and I made it through. You will too. Healthy children can come after loss."

But then we fade back into the shadows, the experiences to the recesses of our minds. 

I don't know why it is. I don't know why there's such a stigma.

And yet there is.

Pregnancy loss.

Dusk and I experienced a miscarriage last week. The pregnancy had been a wonderful surprise and had been going well. And then last week, we were almost 10 weeks along and the baby just inexplicably stopped growing. No heartbeat. No growth. I had a d&c this morning. 

Yes, another miscarriage. Sigh.

For the record, this is our 7th. Yes, the seventh child taken from us before we even had the chance to meet him or her.

If you've never had a miscarriage, you're thinking "oh, that's too bad. But miscarriage happens. They can try again.  At least they weren't too far along."

And you would be right about all of those things.

But once you've been through it, you realize it's so much more than that. You know what a deeply painful experience pregnancy loss is. You, too, would have been surprised at how emotionally jarring it is, how deep the pain goes. How, no matter how much everyone tells you not to get too excited at "just" a positive pregnancy test, you can't help yourself. How, in the days and weeks after that positive test, as your body starts to change, your heart starts to dream about this new life, starts to imagine bringing this new child into your family, finding their space among their siblings. 

Almost against your own will, you start to imagine a future. 

And then, one day as swiftly as that dream began, it is over. Snatched from you.

The loss knocks the wind out of you.

And recurrent miscarriage loss is an entirely different ballgame. Maybe the shock is less severe each time, the healing quicker; but the pain is still there. The absolute loss of a life so dearly wanted.

We've had losses at all different stages. The two losses we had before we had kids were shocking and fraught with concern over whether we would ever be able to have children. Then, the two losses between our children were tinged with worry that we might not have our kids as close together as we would like, that somehow our children wouldn't be close. The three losses we've had since Bodie, now, with me being almost 38, at what are ostensibly the end of my childbearing years, are different. There's a different sense of loss in realizing that your childbearing experience will end with such sadness.  There's a profound sense of grief in that single realization.

So today, my heart is heavy.

And yet, through it all, there is HOPE. 

We have 2 beautiful children living here on Earth with us, and we're given the privilege of loving them and raising them. So so so much joy in this one fact.

(and, as an aside, I find it comical now that I ever worried they wouldn't be close). 

We have 7 beautiful children in Heaven, being raised by Jesus himself. I cannot imagine the party that takes place up there. I mean, seriously. We've had enough references to being a modern day Job this year to realize any kid that gets to bypass Earth with the Bennetts to go straight to Heaven is a darn lucky kid. Bodie and Sierra have been talking about their brothers and sisters in Heaven and how they can't wait to meet them someday. I could not agree more. What an incredible gift, to know that the pain of loss here on earth is only temporary. 

We don't know what's in store for our family here on Earth. Yes, there is sadness today. But so much hope and joy for the future. 

So, if you've experienced pregnancy loss, take it from an "expert" (not something I ever wanted to be an expert in, but by this point, it's kind of undeniable), it DOES get better. The pain DOES lesson. Joy returns. Love returns. Hope returns. And all of it - the joy, the love, and hope, comes to you in spades when you rely on Jesus Christ to get you through. If you know Him, cling to Him. You can weather anything with Him. And if you don't know Him, get your hiney to church and meet him. Or ask a friend who knows Him all about Him. Heck, ask me. Just know that you don't have to weather it alone.

And if you know someone going through pregnancy loss, share this blog with them. Let them know they are NOT alone. Give them a hug. Come alongside them and comfort them. And let them know there is HOPE. 

Even through the pain. Even through the tears and sadness. Even through the loss. Hope.

Always HOPE.

Breathing Again

A month ago today, Bodie had his cath.

It seems like a million years ago.

Really.

It is impossible to explain how much his life, and by extension, ours, have changed because of that cath. 

From the moment Bodie was diagnosed on October 1, 2009, our lives changed forever. We began a journey of fear, of worry, of constantly being focused on his heart, on his next surgery, his next procedure. 

That was the day we started holding our breath. 

And May 13, 2014 was the day we started to let that breath out. 

Bodie is doing so incredibly well. Better than he ever has, by far. His oxygen saturations are typically in the mid 90's, sometimes even a bit higher. He's never winded, and we only see tinges of blue when he's really cool, which hardly happens these days. 

He can do things he never could before.

He wears shorts and tee shirts to preschool, instead of the requisite long pants, long sleeved shirts and sweatshirts in an attempt to try and help his little body stay warm.

He's HAPPY. 

For the first time since starting this school year, he is loving school. He skips away from me to play with his friends at drop off (most days, at least), and bubbles over with excitement to tell me all the fun things he did with his friends that day when I pick him up. He is LOVING swim lessons, jumping into the pool and under the water absolutely as fast as he can. 

You can just tell he feels better. Have you ever had altitude sickness? One of his doctors once told me that kids who are chronically cyanotic feel like healthy people feel when they go to high altitude...except that their bodies never adjust, so they always feel a little "off." This kid has felt that way his entire life. He's never known how a body is supposed to feel. It's little wonder that he was always a little edgy and unhappy. 

He's just...BETTER. Life is BETTER. Life was good before. But it's off the charts great now.

It doesn't mean we don't still worry. He's not "healed." We know the future holds more cardiac interventions, more surgeries, and very likely a heart transplant. It doesn't mean I'm not worried going into his next cardiology appointment, for the echo to hopefully tell us he looks as good on the inside as he does on the outside. 

It doesn't mean we're not still scared about the giant beast Bodie will fight against his entire life. 

But it DOES mean that, for today, his heart ISN'T the focus of our family. He is happy. He is thriving. There are days we just don't think about his heart. At all. 

And today, we're rejoicing and thanking the Lord for his provision for our son. 

And we're going to enjoy this space for as long as we get to be here.

Just...breathing again. 

This girl...

This one...

 (the one on the right, with the cute gap-toothed grin - not the exhausted mama on the left)

Her daddy and I could not be prouder of her. She had her awards ceremony at school yesterday and won 2 awards - a church attendance award (I LOVE that her school does that!) and a Merit Roll award.

So, here's the thing. I know to some families, this might not be a big deal. I mean, I grew up in a household where, if you weren't going to get A's, you might as well be getting F's (in my parents' defense, they claim there was no such emphasis on grades in our household - but somehow that's how I remember it. Ha!), so Merit Roll and Honor Roll were just a given. 

But in our household, it's a big huge ole hunking deal.  

Here's why.

We (and by "we," I kind of mean all 4 of us, but in this particular scenario, Sierra) have some issues paying attention. For Sierra, that translates to difficulty staying on task in school, focusing on finishing her classwork during the day and her homework at night. That means that schoolwork does NOT come easily to her. She expends a lot of time trying to reel her energy in so that she can focus, which doesn't always leave a lot of extra time to actually learn the task at hand. 

For kids (and adults, for that matter) with attention issues, a strict schedule and good routines are some of the best recommendations for thriving. 

Yeah...so, while Sierra needed a strict schedule and good routines, she got...

*a brother recovering from open heart surgery when the school year started.

*a brother bouncing in and out of the hospital for the first 2 months of school.

*a house fire.

*2 nights living in one hotel, followed by 3 weeks at a different hotel.

*moving into a rental home, having lost all of her furniture and a good portion of her belongings.

Need I say more? This poor kid was practically set up for failure.

And yet, she tried. She pushed through, despite the rather large obstacles in her way.

And she made the freaking merit role.

So today, we're going to shout from the rooftops just how stinking proud of this little girl we are.

You go, Sierra.

California lovin'

Today, the kids and I went to the annual California Heart Connection picnic. We missed it Bodie's first year, since he was still in the hospital, but have been every year since. It is one of our favorite events. There's nothing quite like seeing a bunch of heart kids running around and loving life. As I get further connected to the heart community, the picnic gets more fun each year, as I end up seeing so many people I know.

This year, I don't think we made it 5 minutes in before I had already hugged 4 different people I knew and waved to a handful more.  The.love.was.awesome.

But I will say that Bodie seriously cramped my social style, since I couldn't talk to anyone for more than about 30 seconds before I'd have to chase him down again. I knew the picnic was going to be different this year with Bodie finally being post-Fontan and satting well. But I had no idea how different. This kid is crazy. I swear, he's like that dog in "Funny Farm" that runs away and they show periodically throughout the movie still running. He's like that. He NEVER stops. I was literally chasing him all over the place and having to run to the far parts of the park to gather him back up and ask him to at least stay where I could see him. That's what a little oxygen will do for ya!

Thankfully, for the last hour or so of the picnic, the kids settled into the park area, and those of us moms and dads that were still there just got to relax and chat. It was amazing to have that time. 

Among the special friends we got to hang with today were this little one right here, Zoe, and her mom and dad.

How adorable is she??? She has HLHS like Bodie, and is also a CHLA kiddo. I adore her mom and spend lots of time emailing and texting her, but it had been a couple of years since we'd actually seen each other - and even longer since the kiddos had seen each other! Today was AWESOME watching them hang together - and maybe even cuter was seeing Sierra leading Zoe around by the hand and playing with her. Zoe is Fontanning in July - please keep this cutie in your prayers.

This is Trevor, who is a Rady's kiddo and is post-Fontan as well. 

Trevor is the coolest little dude and always has such a great and happy disposition, and one of the greatest moms around. Today, Bodie, Trevor and another little guy, Tanner, were running around and playing nonstop on the playground, playing all sorts of pretend games together. Although adults generally seem to find Bodie super cute and funny, he doesn't always play that well with kids his own age. Not sure why - probably just because he's been through so much and doesn't know how to relate. I hate to say my kid is the weird one, but yeah, sometimes he is with kids his own age. But to see him playing with those 2 kiddos today, like a typical kid, and totally able to keep up with them, was so good for my heart. I literally could have cried. 

Bodie and his Jeni, our amazing adult HLHS survivor.

We love Jeni. Enough said. Oh, and that she's coming up on a pretty big pacemaker surgery in June. Please pray that it goes successfully.

A small contingent of our LA Heart Moms. 

I love these mamas and love getting together with them!

You know, some days are tough, being a part of the heart community. There's a lot of loss. There's a lot of fear. A lot of reminders that our battle with CHD will never be over. 

But days like today make it so worth it. 

Days like today make me SO blessed and humbled to be a part of such an incredible community.

Letting loose.

Loving life.

Celebrating what CHD has brought into our lives.

H.O.M.E.

This little dude is home. He's a little tired, a lot puffy (typical for him, post cath) and surprisingly angry he didn't "get" to stay overnight in the hospital. But, he's pink and he's home! And we're all going to bed - for perhaps the first good night of sleep since the Fontan.

Pink is the new black

Bodie's fenestration was successfully closed and he is now back in recovery! He is satting comfortably in the mid 90s and, for the first time in his life, is unbelievably and beautifully PINK!

Cath is underway

After a fun morning (seriously, this kid is such a ray of sunshine even amidst the scariest situations - we are so blessed) and a healthy dose of Versed that sent him back to the cath lab giggling and smiling, Bodie is officially in the cath lab now. Please pray for a successful procedure!

Will update as we know more.

A Cathing we will go

This kid? 

He is SO ready for tomorrow. He's woken up every day for the past week, excitedly asking "is TODAY the day I get to have my cath???" and then being disappointed as I counted off the days remaining. On the list of reasons he is MOST excited about the cath are: (1) getting to leave "in the middle of the night" (i.e. 5:15am); (2) getting to stay overnight; and (3) getting to watch the vacuum tube system (for transferring meds and notes from the pharmacy and nurses' stations to each other). 

So yeah, this is kid is so excited he can hardly contain himself.

And sissie is super excited to get to spend some extra time with her bestie while mommy and daddy are at the hospital with Bodie.

Me? Not so much. 

More like petrified. 

Sigh. 

So much is riding on his cath. It has the potential to really make this Fontan physiology work well for Bodie. But it is just so.stinking.scary handing your precious child over to be put under anesthesia, with all of its attendant risks, for a procedure that may or may not work. I can usually more or less hold my cool through all of Bodie's heart stuff, but I'm not gonna lie - my stomach has pretty much been in my throat for the past few days. 

Please keep our boy in your prayers. We have to be at the hospital at 6am, so start those prayers early!

1. Pray that he tolerates the sedation well.

2. Pray that he has NO complications.

3. Pray that his pressures are low enough to test occlude his fenestration.

4. Pray that they are able to successfully close his fenestration.

5. Pray for an uneventful recovery.

6. Pray for peace for Dusk and I throughout the next couple of days, but especially when Bodie is in the cath lab. Those hours are always really nervewracking.

Just pray, please. We know that God is in control, but our nerves are still pretty frayed. 

I know you all follow him and love him, but...this little sunshine right here is our baby and we're scared. This CHD journey is no joke, folks.

We covet your prayers heading into tomorrow. 

Right time, right place

This week has been hard, on a lot of levels. The days leading up to any procedure are always stressful, and next week's cardiac catheterization is no exception. So many questions, lots of thoughts racing about the long-term effects on Bodie's liver if they are able to close the fenestration - and the short-term effects on the rest of his body if they are not able to close it. And the worries of putting a kid with a half of heart under anesthesia for any length of time. 

So emotions are already running high. 

On Tuesday, we got the long awaited (and fought for) results of Dusk's genetic testing done back in December. More on that later (it's a lot to take in and we're still processing the implications of it for not just Dusk, but possibly Bodie and Sierra as well), but suffice it to say, it's amped up the stress level a bit. Add to that Sierra's 3 tests and a school project due this week, and let's just say, it hasn't been pretty around here.

So the timing was pretty incredible today to be receiving a package from Icing Smiles. Icing Smiles is the organization that provided both kids' birthday cakes the year Bodie turned 1, and Bodie's incredible Minion cake earlier this year. I knew they occasionally send treats to their recipients, but we'd never received one. Until now.

In the package was this box.

And inside was this note.

Along with a dozen of the most adorable Minion cookies I have ever seen.

Bodie was thrilled.

I cried. 

Actually, I kinda cried buckets. Right there on the kitchen floor.  Bodie looked at me in confusion, saying "Are you crying mama? Why? It's ok - I'll share them with you!" and handing me a cookie.

Have I mentioned how much I love this kid?

But seriously. How incredible for someone who's never even met our family, or our son, to reach out like this? To feel the calling on their heart to reach out to our family and send the most incredible gift at this exact moment in time? I mean, the timing was absolutely perfect. Between the fire, Bodie's upcoming cath and the genetic results, we were desperately in need of some loving right about now. Clearly this package and its timing was God orchestrated. That package had time to get sent to our old house and then get rerouted to our new house to arrive on the most perfect day. 

I know, I know - it was just cookies. Big deal. But it IS a big deal. And we are profoundly grateful. 

Right place, right time. 

Thank you so much to Icing Smiles, Mike, Annika, Elissa, Hannah and Audrey for being our right time and right place today.

The aftermath

So, I am great at pushing on through trials and tribulations, acting like everything is normal. I mean, we're talking I am super at it. As in, if they gave an Olympic Medal for "biggest faker and best at acting like everything is totally fine when it's not even close to totally fine" I would so be up on that podium, singing my national anthem and basking in all my glory. Yup, that's me.

My "everything has to continue on like our lives didn't just bottom out underneath us" attitude has been in overdrive, since the fire, really. It's the same attitude, by the way, that drove me, the night of the fire, to search through the kids waterlogged, ash filled and ruined bedroom for 45 minutes to find Bodie's missing t-ball cleat because "he has his first t-ball game tomorrow and he's NOT missing it." True story. In my quest for life to continue on as normally as possible, I wasn't even giving us a chance to acknowledge that our lives were not going to be normal again for a very long time. And that it was ok. It was not making excuses.  

Anyway, I digress. This trait of mine, it's kept us at this full throttle speed toward keeping up a sense of "normalcy" for us, without acknowledging that a slower pace would be totally acceptable right now. So, the kids are at their t-ball and softball games, we're at church on Sundays, we're having birthday parties and making summer plans. You know, just like everything is normal. 

So, I shouldn't have been surprised when my mom was in town last weekend and casually asked why people were still bringing us meals when really, we have this amazingly beautiful, working kitchen now.

(and it's totally a legit question. I mean, really, it's beautiful, right?) 

But, I gotta say, our lives still aren't normal. There is so much aftermath to a fire that you don't even think about.

Like the fact that I only last week got my printer back. Having a home printer isn't a big deal - unless you work from home - and you're used to having it. Everything requiring a printer kind of slid to the back of my (already overflowing) plate. SO glad to have my printer, but I have SO much to do now!

Or the fact that we have random bugs around here (pincher bugs, a cockroach or two, lots o' spiders, etc.). And we have Terminix on it. But because we didn't plan this move and all of our stuff was put in boxes, moved to a warehouse with other people's stuff in boxes and then brought into this house, we don't know - did we bring the bugs somehow from our house? Were they already here? Did we pick them up in the warehouse? Is it just an isolated thing or are we about to be facing an invasion of bugs? FUN stuff! 

Or the fact that we put in a permanent change of address with the post office (because you have to specify an end date for a temporary hold and we don't have a specific end date yet), figuring they'll forward for up to a year, so we're good and don't have to actually switch our address with anyone....except that the post office, unbenownst to us, sent out change of address notifications to some (but not all!) of the people sending us mail. And we get to guess who got the notifications! SUPER awesome. Can we pause for a moment and send good thoughts and prayers that the DMV is not on the list of the lucky recipients?

And speaking of not having an end date, they haven't started reconstruction of the house yet. Actually, they haven't even pulled the permits yet. They're close, from what we hear. But, even so, LA County is looking at 8-12 weeks for permit review. And then they can start reconstruction, which should be 6-8 months.

And what about pictures? Do we bother putting up pictures in a house we're moving out of maybe 10 months from now? We want it homey, but, really, who wants to be trying to fill nail holes when we're moving back into our old house at the same time?

Or my favorite. The kids' bunk beds. One of the very few items the salvage company is attempting to salvage. We just got it back on Thursday. SO exciting! But, we had to replace all of our mattresses, including the kids. Which was fine. Except...

We didn't have the bunk bed when we ordered our mattresses, so ended up with mattresses a bit higher than even the railing on the bunk bed. It's like a perfect launch pad to send Sierra hurtling to the floor (you know, if she can make it past the ceiling fan first). Super safe, right? Who would have thought we'd end up with THAT problem?

So, Dusk went right to work trying to create a solution...

Oh, and by the way, see that boot on his right foot? Yeah, he broke it a couple of weeks ago. We found out by having x-rays done at the chiropractor I've been seeing. Turns out my lower back is badly compressed and I've started spinal decompression. Fun times.

Our lives are kind of a hot mess right now, no pun intended. Anyone who knows us knows that we were already at our max prior to the fire, and didn't exactly have any margin left for major, life changing events. (I've never had much margin (you know, extra s in your life?) - I'm not sure I would know what margin was if it slapped me in the face.)

And the aftermath of a fire is just plain huge. It affects everything. Our local pet store caught fire last week. Everytime I drive past the boarded windows, I draw in my breath, reliving that moment of watching my home on fire, the flames driving up into the sky. That feeling of utter helplessness. That moment changes you forever. And the days afterward, sifting through the rubble that was your life before. I know a fire of a business is different than a home, but even so, my heart goes out to the owners and the employees as they embark on the rebuilding journey.

We're a little further along the journey and working through it. And we'll be fine. We'll keep trucking on, because, at the end of the day, this is just life and that's what we do. But, yeah, people are still bringing us dinner (through tomorrow) - and we're pretty darn grateful. Because it allows me to focus my attention on, you know, more important things like acting like everything is totally normal in our lives. ;-) 

No filter

So, I often use filters on my pictures when Bodie is particularly blue. I can usually get the blueness out. But over the past week and a half, he has been so blue that no amount of filtering was working. Key point is this pic, taken last week...

I have been noticing the blueness more and more, and then today, when he gave me this

and this

I decided enough was enough, and sent the pictures over to his cardiologist, who responded right away that while she wasn't necessarily super concerned, if I was concerned, she was concerned and "when can I see him?" (Can we pause for a moment to talk about how awesome she is?)

She squeezed us in this afternoon, where she confirmed that yeah, the kid is freaking bluer than a blueberry right now. His sats were high 60's to low 70's in the office. But his echo looked great (not a heart function or valve issue) and his ekg was normal (not an EAT/rhythm issue). So, where does that leave us? We're not really sure. All that we know is that he's using his fenestration a lot. The question is whether he's using it because he really, truly needs it, or because, well it's there, so why the heck not.

We're still on track for his cath to check things out and hopefully close his fenestration on Tuesday, May 13th. I asked her whether he could wait that long. She replied that, if she didn't think he could wait 2 weeks, she'd want him admitted immediately. And we then watched Bodie run laps around the exam room, and climb up and down on top of the exam table repeatedly, laughing and squealing the whole time. He was happy and had tons of energy.

Obviously not a kid that should be admitted right now.

So, we're status quo for now. Looks like we're just going to have a blueberry until the 13th. Whether we'll have a blueberry after that, or a nice, pink boy, we really don't know. And I'll admit it, I'm pretty flipping nervous about it. His Fontan pressures were higher than I had thought (based on his last cath report, they're still within the normal range, from what I understand, but on the higher end), which could mean he won't tolerate the fenestration closure well. During the cath, they'll check all his pressures, test occlude his fenestration and then check his pressures again. If they don't like his new pressures, they'll hold off closing the fenestration and we'll have to game plan how to get his lungs to relax. We do have some options (maxing out his current pulmonary hypertension med and adding a second one) and of course, 02 is always an option. But we both agreed that we'd prefer to take that off the table as an option if at all possible. Bodie is crazy and never stops moving. The kid won't even tolerate oxygen on while he sleeps - I can't imagine trying to get in on him during the day. He's not such a good candidate for that!

So, tonight, I'm a little more unsettled than I had been, going into this cath. We could definitely use some prayers:

1. That Bodie pinks up a little over the next couple of weeks, with no major issues.

2. That his pressures are better now than they were in October.

3. That he tolerates the fenestration closure well.

4. That he has no other issues during or after the cath.

5. That Amy chills out a little bit (ok, who am I kidding, a lot).

I'll leave you with this little gem tonight. While i was on the computer earlier, Bodie was furiously drawing away. This is what he brought me:

with this explanation - "That's daddy, then Bodie and Sissy, then mommy, then the ladybug - and her EKG."

Melt.my.heart.

Lucky 7's

Tomorrow, our sweet girl turns 7. Man, it seems impossible that it was really 7 years ago that she came springing into our lives after 27 hours of labor (the last 4 1/2 hours of which were pushing!). 

We had no idea just how much this little peanut would change our lives - how she would just crack our hearts wide open and race in to to fill every bit we never knew had been empty.

We love you so much, Sierra, and couldn't be prouder of you. You've had so much thrown at you the past year, and, through it all, you've shined. You haven't just kept up in life despite some pretty hefty changes and roadblocks, you've charged forward. You've learned and grown so much in the past year. A year ago, you could barely remember how to write your letters, and now you're writing notes and stories - and reading entire books. You are learning in leaps and bounds and have such an excitement for anything new. We have so loved watching you enthusiastically take on ballet, and gymnastics, and swimming, and volleyball and softball. 

Sweetheart, as you're heading into 7, daddy and I want you to know what we admire most about who you are RIGHT NOW. I think what we love the most about you is your sincere interest in others. You always (and I mean, ALWAYS) have to know what everyone is doing at all times. It's such a gift, and one that will serve you well as God nudges you toward those crossing your path who will most need your love and support. In the meantime, let's spend year 7 working on harnessing that gift and knowing when it should and should not (i.e. maybe not every single second of every single minutes of 1st grade!) be used.

And we so admire your willingness to try ANYTHING new and take it on with a smile. That's a gift your mommy has never had - I've never been able to try new things without an inkling of fear unsettling my stomach. I adore watching you jump in with both feet and a huge grin on your face. Please, please, don't ever lose that fearlessness. Let God use that for His purposes. It will take you far.

Happy 7th birthday to the sunshine in our lives. We love you so much and can't wait for many more years to love on you (but can we go somewhere other than Hometown Buffet for next year's Birthday dinner, pretty please?) 

Love, 

Daddy, Mommy and Bodie