Though I haven’t updated here in quite a while, life has been moving full steam ahead. Each time I try to write, the emotional weight of all the things I’m currently juggling is too much to process — not to mention, there is always laundry to do. What a year it has been for all of us, right? I can’t speak for you, but I know our circle has definitely gotten a lot smaller this year — In some ways, we’ve returned to older ways of living, slower ways of living, and there is both joy and loss in that. We have lost family members and friends (some to COVID and some to other tragedies), but also added a new baby to our little brood. We are in the very middle of building a house that we designed ourselves, as well as our first year of homeschooling. We are preparing ourselves to possibly hear that Sunley needs surgery soon, and all of the above in a very turbulent society during a global pandemic that has somehow become politically charged.

Maybe you’re like me and feel completely overwhelmed. But the beauty of this is that Jesus is always there to lift us out of our drowning, just as He did for Peter. And many days, I am definitely drowning. I start out eager, like Peter, and then quickly lose my footing. There’s been a lot of repenting, refocusing, and restarting in my days. And I think it’s ok for me to just sit in this space of an unknown future, as long as I keep Jesus there with me.

On that note, we are seeing just the very beginning stages of Sunley’s body starting to struggle again. I don’t want to say it out loud, as if saying it will somehow speed up the process, but there it is. I very much underestimated how gut-wrenching every little desaturation episode would be. The next surgery is coming — it will happen, sooner or later, and it was always the plan. But she’s not a baby anymore. Sunley is a RIDICULOUSLY spunky 2 year old who wrestles her brother, sings at the tops of her lungs, and tells tall tales about snakes biting her neck. She sprints to the door when I come home from a meeting with our builder (that is LITERALLY the only place I go), and comes out of her room at bedtime approximately 6,402 times a night, and tells us she will take a spanking instead of a nap, please. It was hard to send my baby to her surgeries, but something about this is harder. I don’t know if it’s just that she’s older, or that this is really the last “big” thing doctors can do for her heart — and that’s a reminder that this will never go away.

I’m rambling.

To summarize, I have a lot of big feelings about her impending “decline,” and I am not ready to be done with having a next-step plan. I fully expect the Fontan to go well. But if it doesn’t go absolutely perfectly, with her hitting 90s saturations, I’m not sure how I will process that, and I’m really not sure what that would mean, medically.

For other heart moms reading this, her only current symptoms right now are increased cyanosis, and desaturations while walking or playing. It’s obviously impossible to get a read during movement, but I’ve caught her immediately afterwards as low as 58, but usually in the mid to high sixties. She always very quickly pops back up to her normal 78-81, so we aren’t using any oxygen with her. And for any not-heart moms reading that, President Trump had to go to the hospital when his oxygen was at 95. Sunley is wrestling her brother with 60s. That concept always amazes me. She isn’t showing any symptoms of being tired or not being able to keep up with her siblings, which has to be a good sign! Will you please plead with God alongside us to give us one more year before we have to do the Fontan? We are so hoping for that news in March at her next Houston check-up.\! We will gladly do whatever is best for her, but for her sake and ours, I would love to be able to wait until she is 4, Davie Lu is weaned, and I especially would love to wait until after the medical world has a better handle on this pandemic. Right now, most children’s hospitals are (understandably) not allowing siblings in as visitors. I know that sounds like a small thing, but the less separation we can have with our kids, the better. The separation trauma they experienced was real, and has had lasting consequences, and I’d like them to relive that as little as possible! I won’t go into a lot of detail about the Fontan, mostly because I am still learning about it, but it has a lot of drawbacks. Necessary, obviously, but it really beats on the liver while helping the heart. Another reason I’m not looking forward to it, though am also grateful for it!

All of that may seem very heavy and sound doom-y, but there’s something very beautiful about being allowed to see the brokenness of the world. My daughter is perfect. Allow me to reiterate as a non-biased observer: She is PERFECT. And this world has so much pure vileness. It’s not perfect enough to serve her heart as it was formed. There’s something about being in this world of CHD that makes the wholeness of God and His promises so much nearer and so much more glorious. I’ve described it before as forever living in a “thin place” — a place where the veil between heaven and earth is thin — so thin that one can sense it, and almost hear the songs in heaven. I am constantly thinking about the day when Jesus finally takes us all home. Won’t that be such a relief?

And when Satan tries to whisper fear, hatred, or bitterness, God’s promises are fulfilled by the Scripture that He has written on my heart. I have an answer for every lie with which Satan tries to distract me, and that answer is always wrapped up in a story of victory.

I am struggling this year, and I know I’m not alone in that. I’ve had more just “emotionally bad days” this year than any other year I can recall. But I’m struggling with Jesus, and not without Him. He hurts when I hurt, and He uses my conscience to correct me when I take out my stress on the wrong enemy. I am walking through hard days, but they will not last forever. And I am determined to not miss out on these sweet, slow days with our little family — in many ways, tucked away from the world and all of the emptiness it has to offer. There is fullness in our home. And much, much laundry. Always laundry.