I am well acquainted now with letting go. I hold all things that I can touch very loosely. When Sunley received her fetal diagnosis of a very rare version of Hypoplastic Right Heart Syndrome, it felt like I had to give up nearly every tangible thing I had built. We left my hometown, sold our very funky midcentury modern house that I loved, and I abruptly quit my dream job as a traveling wedding photographer. Our older kids had to live with my parents in Midland for about 10 months, occasionally bouncing around to different relatives, while Derek and I did the hospital thing in Houston. We rarely were able to attend church that year. We gave away our family dog. We watched our tiny baby — and so many other babies — suffer and fight so hard just to keep their hearts beating.

We let go.

And the pain of all of that letting go emptied me. I discovered that only after the emptying could I be filled, and I’ve tried to find healthy ways since then to stay empty and available to the Lord.

But that was six years ago. I’m finding a new challenge in letting go now, and it may not make much sense — I’m trying to let go of my habit of daily bracing for the next emergency. Sunley hasn’t had an emergent hospital trip in 2 years now, after 4 years of being in and out of emergencies often. Her diagnosis is still the same — her care is still considered palliative. But I parent from a place of believing she will live and not expecting the bomb to drop at any moment. I can’t keep bracing myself, so I have a daily habit of (trying) to hand things over to the Lord, the Keeper of her days. It’s been a subtle change, and I still reserve the right to encounter big waves of grief whenever I please. It’s important to face reality. I daily hand over to Jesus what I can, and ask Him to gently take the rest.

In our house, we talk often about the hope of heaven. In our house, we dance on the hard days, and watch clouds on easy days. In our house, we welcome conversations about death as they meander their way in alongside conversations about Star Wars and Nerf guns and Barbies. In our house, we are counting up regardless of the fact that her heart counts down. When I’m on my deathbed, surrounded by all four of my living children, I don’t want to have missed opportunities to rest in the absolute JOY of having my family whole. What a victory it would be to go before any of my children.

We have had such huge milestones this year. Sunley turned SIX, a whole year older than she was originally expected to live. She completed Kindergarten, started taking piano lessons, and is learning to read. She also had her first check up at the Fontan Go Clinic in Houston, which will be part of her care from here on out.

I plan to post an update soon about that clinic and the amazing things it is doing for rare kids like Sunley! PLEASE consider hosting a lemonade stand this August through our nonprofit, Write With Light Project. Every little bit helps this clinic immensely! Click here for more information.