Saturday, August 15, 2015

An anniversary

2 years ago, today, we took handed off our sweet boy who looked like this…
And hours later, were given back a boy who looked like this…
And so began a tumultuous recovery from what should have been his "final" open-heart surgery for the foreseeable future. A year that included an additional open-heart surgery 3 days later, a pacemaker site infection 5 ½ weeks after that, repeated hospital stays, a 6-week course of iv antibiotics and 2 cardiac catheterizations before he was finally thriving. Not the result we expected from his Fontan.

But even so, we celebrate Bodie's "Fontanniversary." Because the Fontan was the final planned step to get him to where he is today. Because we always knew it was coming, from the moment we found out about his special heart when I was 17 weeks pregnant. Because it was a journey to get to it. Because we thank God that Bodie was a candidate for the Fontan, that he thrived in spite of a year of struggling post-Fontan, and that his body is tolerating the Fontan circulation so well now.

And because way too many of his friends haven't made it this far. Friends like sweet Joshua, who would have turned 5 tomorrow, but lost his battle with HLHS way way too early; and gorgeous Hayden, who went to be with Jesus unexpectedly following his Glenn surgery 3 years ago today. 

And because other friends have had their Fontan, and have struggled. Friends who are struggling across the country right now. Friends like Xavier and Hughes. And friends who struggle just to get to their Fontan and may not be eligible once they get there. Friends like Tyler and Michael.

We celebrate every step in Bodie's journey. Because we know we cannot take any of them for granted. And we don't.

Today, we celebrate Bodie's Fontanniversary. 
With a big, fat ice cream sundae after dinner at Soup Plantation (which, thankfully he was swayed toward, after initially choosing McDonald's!) 
Which was only after the fresh baked cookies they brought us when they heard what we were celebrating.

Bodie, we love you SO SO MUCH. And we will always be here to support you and love you, wherever this CHD journey takes you.
And we are so proud of you (even if you did embarrass the crap out of your mama yesterday when you yelled "I have LIIIIIIIIIICE!" at the top of your lungs as a war cry as you cannonballed into the public swimming pool!) 
Thanks for keeping us on our toes! 

Sunday, August 2, 2015

Wide, open spaces

The kids and I are wrapping up a whirlwind trip to Boston and South Carolina. This trip has been wonderful, challenging, and, more than anything, eye-opening.
Bodie's evaluation at Boston was both reassuring and overwhelming. We're choosing not to share the details of his results here, both because we'd like to try to keep some things private - and because, quite frankly, we're still processing it all. In a nutshell, Bodie looks really good for what he has been through. But frankly, he still has a ways to go. Kindergarten, and to a degree, probably all formal schooling, will be a challenge for him - for us all. But Boston gave us a lot of recommendations for ways we can make his transition smoother, and come alongside him. (That said, fellow heart moms, if you'd like to know the specifics of what we've seen with Bodie, and what we learned in Boston, feel free to email me at - I am more than happy to share what we can to make your journeys with your heart warriors a little easier.)

But the aha moments for us didn't stop at the clinic in Boston. They have continued down the coast to South Carolina, in long car rides, over bottles of wine with one of the wisest women I'm privileged to call my friend and "closest thing to a sister I have," Valerie (more on that in a separate blogpost!). 

Probably my biggest takeaway from this trip is how much both of our kids, but especially Bodie, need time to decompress. I have seen huge differences in the kids when they are given some time to themselves, to stop and process things. 
I have been running our family at a breakneck speed for as long as I can remember. I say "I" and not "we," because it truly is all me. Dusk has been asking me to slow down for almost as long as I have been running - and I always say "I don't have time to slow down - later" over my shoulder. 

Our son was born with a massive heart defect. 
I slowed down because I was forced to, but picked right back up THE SECOND things leveled out.
Our house burned down. 
I sped up.
Dusk had a heart attack. 
He slowed down. But not me. 

After his heart attack, Dusk sat me down and told me I NEEDED to slow down. That he wasn't sure why God was asking our family to slow down, but that He most definitely was. It took a heart attack for Dusk to understand that and slow down. 
I remember Dusk saying 
"It took a heart attack for me to slow down. WHAT will it take for you to slow down???"

I think we just found the answer.
It took a trip across the country.
It took two days of tests and a 2 hour conversation with a doctor telling me how deeply my son is struggling.
It took observing my children 24/7.
It took hugs and snuggles and lazy days. 
It took breaking up more backseat fights that I can count.
It took a long, hard look at myself. 

But I get the message.

Our family needs a slower pace of life. Wide, open spaces to just BE. 
Less over scheduling. Less activities. Less trips out of town (if you know us, you know the kids and I are out of town at least once, if not 2-3 weekends a month, even during the school year). Since school got out in mid-June, we have been home 1 weekend

We live in a big city. Right now, we can't give our kids wide-open spaces, room to run. But we CAN give them wide-open spaces in our schedule. Space to be. Space to read the Bible, and draw closer to one another and to God. Space to play. Space to decompress. Space to stop running from whatever it is we're running from.

So, when we fly back this week, we'll be embarking on a new adventure for the Bennetts. One that, to be honest, is uncomfortable for me. I'm used to going nonstop, but we won't be. I don't even know how to say "no," but I'll have to learn. We don't know exactly what it will look like yet, but we know for sure we won't be taking family trips out of town for quite awhile. We'll be working on readying our family for the school year ahead, on carving out space for our sweet boy to do what he needs to do, how he needs to do it, to heal emotionally from everything he has been through. 

This a space God has been calling our family to for some time. It's just that, for the first time, I'm finally hearing it. I cannot wait to see what God will teach us through this.