Sunley,

Your sweet, snuggly little chubby perfect 3 year old self is snuggled in my lap while I write this. You are strong. And I'm sorry that you have to be. When we were given your diagnosis, we prayerfully made the decision to fight for you before you could fight for yourself. We weren't always sure that we were making the right decision, but once you were born, it became clearer each day that we had chosen correctly, because of your fiery spirit. You too would have chosen to fight, if you'd had that choice. I will always give you the space to push yourself as far as you'd like. But anytime you don't feel like fighting, you can crawl back into my lap and I will do it for you. There is an unseen army fighting for you, and I call on them often.

Love, Momma

Sunley is not doing well, but we are still at home, thank the Lord! I visited with the TCH team today, and we all agreed that she wouldn't be getting anything at the hospital that we can't already do at home.

Most of you already know that two weeks ago, Sunley had 2 complex febrile seizures. We called an ambulance and went to OU Children's. We were only admitted for 24 hours, and they ran all the tests we needed to confirm febrile seizures, and not something more severe. She didn't have any more fever after that, but on Tuesday showed symptoms of a minor virus — runny nose and a little bit of a cough. Since then, her symptoms are basically gone, but her saturations have continued to get worse and worse.

Sunley typically has oxygen saturations between 72-82 (Healthy people stay around 97-100). Right now, if she walks across the room, she dips into the forties. We've seen as low as 35. This is with VERY low activity. So right now, she is on oxygen all day instead of spot oxygen, and any getting off of the couch is a planned activity. We get the oxygen turned up, and monitor her numbers the whole time. Going potty is a big event, too. All this because of an itty bitty virus that she picked up somewhere.

We are basically doing the hospital thing, but at home. And together is always better, so we are thankful for that. But we are tired. Sunley is frustrated. And I'm having to let go of perfect parenting again. So much tv, no cooking, and just no moving forward yet. Summer sports is on hold for Sunley, but not for Ruger and Hadelyn -- unfair for someone no matter how I handle it.

We need to see improvement soon for Sunley's numbers. I don't know what the plan will be if her numbers don't go up, and I don't want to know.

I've had to fight so much the mama bear urge to rip off all the cords, take this girl (who feels FINE) outside and let her play.

I never think about the before, but today I was in the middle of an adorable, giggly, diaper change with Davis and just blurted out "I want to go home," and burst into tears while Davis laughed at me. I thought about our first house in Midland, my lime green front door, the funky fireplace that I tried and failed to recreate in our new house, the add-on that we were planning on doing after baby number 3. I thought about how we could have brought Sunley home to that house and continued life as it was. I thought about what summer for a 3 year old "should" be. For a little bit, I just let myself feel sad and feel sorry for me and for Sunley.

And then I stopped crying. I said "okay" with a deep breath that felt more like a prayer, picked up my baby, and walked back to the couch to check Sunley's levels.

I wouldn't trade this for all the lime green front doors in the world. And that's the secret gift of being a heart mom. Deep sorrow. Deeper joy.