It’s rare that I update this frequently, but there’s a few things I wanted to tell you about, not the least of which was our vacation! Well, it was an overnight trip, at least. Thanks to the generosity of friends and “strangers”, we went down to Chattanooga for a night and it was glorious!
We’ve tried so hard in recent months to find ways to just breathe as a family, to enjoy each other, to relax and to laugh. Those moments have seemed elusive at best. There hasn’t been much levity in our home and the older children have been more than patient, as we spend so much time managing the logistics of Pearl’s care. They don’t complain. They just adapt and occasionally ask the in home therapist to take a look at their LEGO creations. There are times when its tough to watch your children having to figure out ways to navigate waters they maybe shouldn’t have to navigate.
So we got away…and they played. And we laughed. And they went swimming and we ate everything in sight. We went to the hotel arcade and stayed up late in our hotel room. We even made it the aquarium! It was just what we all needed. I feel like we’ve all come home refreshed and ready to tackle this next milestone in Pearl’s life on Wednesday!
The plan right now is for her to go in on the morning of the 23rd, and they will perform a Nissen fundoplication and also put a mickey button in her belly so that she will no longer have a feeding tube down her throat. As of Friday, everything seemed good to go, but they were quick to tell us that if anything seems concerning to anesthesiology when we get there on Wednesday, then we will bail on the idea for the time being. There’s always risk associated with any operation, and since Pearl is Pearl, if they aren’t comfortable proceeding, then we are completely willing to heed their advice. The last thing any of us want is for them to attempt something they aren’t entirely comfortable with. Everyone that we’ve met thus far seems more than competent, and wants to serve Pearl in the best way they can. I don’t know if she could be in more capable hands. They’ve told us that we can’t really know what to expect in terms of in-patient recovery. It could be as quick as 3 or 4 days but also as long as a couple of weeks if there are complications. Please pray for discernment for the team, for an uncomplicated procedure, for quick recovery, and for the family to maintain perspective, gratitude, and joy through this season of parental shift changes and hospital stays. I will say that this hospital stay is very different than previous ones. This is the first time when we are going not because her survival may be in question, but because she is surviving well and we are looking at a way to help her thrive! We are grateful for that.
And speaking of gratitude, I want to quickly hit on my previous post… There’s a lot of ungratefulness and frustration tucked in there. I don’t know, maybe it’s not “tucked in there,” as I’d like to think. Maybe it’s blatant and screaming loud. Maybe offensively so, I don’t know. But here’s something I don’t want you to miss. Yeah, I get frustrated all the time. I sometimes have weeks on end where reception is fuzzy and everything appears through a dark, hazy, and sometimes-angry lens, and it gets pretty dark in my heart.
But here’s what doesn’t happen. God doesn’t quit. He doesn’t stop carrying my family. He doesn’t stop pursuing me. He doesn’t pin me against the wall and remind me that he has given me everything that we all prayed for. He doesn’t hang me out to dry, stewing in my own self-righteous entitlement. No, he calms my heart. He leads me beside still waters. He wipes the filth off of my lens, sends a plethora of perspective adjustments, and then sends me on an overnight with my family. Sure he finds me guilty of all of these things, but he did that a long time ago, right before he picked up the tab for that, too. He’s relentless in his pursuit. He allows me to sink below the water but never allows me to drown completely.
All that to say, if you hang around me for more than 10 minutes, you’re going to watch me throw all my cards on the table and maybe you’ll see that I bent one of the card corners. It’s a mess inside my heart, but God is good. He never lets go, and my heart does not intimidate him. He knows what to expect from his sheep. That’s why he carries a rod and a staff. So you’ve seen that maybe my faith isn’t all it’s cracked up to be according to what you may have read in articles. Instead, it’s whom that miniscule amount of faith is directed towards that is more than he’s ever cracked up to be. There’s the good news. I’ll boast about that.