Well, the answer is two fold.
1. When Princess was still in the NICU and I was driving back and forth every day for 77 days to go see her and deliver breast milk, I would listen to Christian Radio. Usually this was either Air1 or KLOVE. Well, there were a few songs that seemed to play EVERY DAY that Princess was in the NICU. One of those songs was "We Won't be Shaken" by Building 429.
This song really kind of became the theme song to her being there and finally going home and even afterwards when we didn't know what was wrong it was still the song that seemed to bring me peace and hope. And even now, when I hear this song, my prayer is "Lord, what are you preparing me for?"
2. Because of Princess's PHA2, she has had bouts with hyperkalemia (high potassium). There really aren't any symptoms of it outside of heart arrhythmia, which we may never know she has. There's also the possibility of drowsiness, but she's never really shown symptoms of it before. Thankfully the medication she is on takes care of the high potassium level, along with a low potassium diet. But the only way to know her potassium level is high (or low) is to do a blood test. Well, I don't want to subject this child to random and frequent blood tests just to satisfy my curiosity. So, I have to have faith that the medication is at the correct dosage and working. I have to have faith between her labs that she's okay and if not, the doctor is going to call me and let me know to pick up the medication that will help her get rid of the potassium. I have to have faith that if her potassium is ever high, that we are already at the hospital when it happens because they'll take care of it. So what happens if her potassium is too high and it's not caught? Simple. She could die. So every day my prayer is to get one more day with her.
I have faith because the Lord has told me that He has her. He's told me this a couple different times. One way was through this verse:
For I know the plans I have for you,” declares the , “plans to prosper you and not to harm you, plans to give you hope and a future.
-- Jeremiah 29:11
Another was through the song above. And another was by literally telling me. I trust Him. He's got her, no matter what.