"How is Sunley doing?" I never know how much information to give when people ask. Do they want a short answer? The whole schpiel?

All in all, Sunley is doing GREAT. And it makes me so happy to say that. We used to always say that you could never tell anything was wrong, except for her blue lips, or except for her low oxygen saturations of 74-ish. But now there is no "except." No one would be able to tell from her appearance or activity level that Sunley has such a severe heart condition. Her life is so full and so normal for a four year old. PRAISE. GOD. She is not cured of course, but Sunley has had a great outcome since her Fontan procedure in April.

It has been difficult for me emotionally since we've been home, but even that has improved. I feel like our life is finally settling in, and we are even planning a family trip to Great Wolf Lodge out of state soon. It will be our first time traveling without oxygen and I can't wait. It's strange to think about, but it is actually possible that Sunley will need only cardiology check ups for a very long time. That is our prayer.

And I'm giving myself grace in this, because I feel guilty when I brace myself for a different possible outcome. But that's ok, too. It's really difficult to believe wholeheartedly that things will turn out the way I want, even though I'm generally an optimistic person. I don't think God is asking me to believe in a perfect outcome; I think He only asks that I leave it in His hands. And I can do that.

He comes with me when my mind re-grieves her diagnosis, and He holds me up when I hurt for dear ones who have suffered different outcomes. He walks with me when I wander down a path of worry, and brings me back when I'm ready. He strengthens me when I try to do something about it all, and He picks me up when I fail.

With all of that said, we are already starting to see the side effects of Sunley living with a Fontan circulation. She has chronic leg and ankle pain, and she frequently will randomly blurt out with a groan, “I don’t feel good.” That is very hard on my momma heart, but it’s also something that I can’t react to all that much. Sunley is going to have a different heart than the rest of us for her whole life. Sometimes, that means that she won’t feel good. Sometimes, she will be in pain. And I can’t teach my 4 year old to give up with every ache and pain, because that would be doing her a disservice. (Trust me — In the moment, all I want to do is scoop up my baby and rock her for hours!) Are there exceptions to making her keep going? Absolutely. But for the most part, my job is to teach her how and when to push through the discomfort. And she’s doing it! Sunley is HAPPY, and completely living a full life with virtually no restrictions right now. Since the Fontan, she has battled COVID, a stomach bug, and two colds, and did it all without oxygen support. She is taking Jiu-Jitsu classes, going to a homeschool hybrid Pre-K program, playing outside, walking up stairs without losing her breath, etc. We will learn as a family how to navigate yet another new normal, and I know God will give us joy, strength, and peace as we do it.

*And for her grandmas reading this, don’t worry — if she really needs a break, I give it to her ;)