Still Small Voice

One thing I'm realizing about this journey is that it is so easy to get thrown into a tailspin by the many competing voices that are surrounding us. Yesterday morning's visit with Alicia was a good example of that.

We met Alicia's new doctor yesterday, and like all of Alicia's other doctors she came over, introduced herself and proceeded to give us an update on Alicia's condition. Pretty much all the facts she gave were the same. Alicia has gained weight, but she's still having trouble breathing when she eats, because - and this is the part that threw me for a loop - Alicia's digestive system isn't working well. When I heard this, I did a double take in my mind, wait what? She continued to talk, but I don't know if you've ever experienced this, but my mind kind of just got stuck. I got stuck on the "digestive system isn't working well" part so much that I didn't really hear the rest of what she said. So I had to clarify, what did she mean that her digestive system wasn't working well? The doctor said, "Well, when we feed her, the food stays in her stomach for a long time before it moves into the intestines and that causes her stomach to expand and press into her lungs." OK we knew that part. What I didn't get was, why this "situation" was suddenly something negative? I mean, yes, I know that the stomach expanding, pressing on the lungs making it hard to breathe is not good, but is this an indication that her digestive system isn't working well? Maybe you doctors can explain it to me. Cause in my mind, the doctors and nurses have been saying that Alicia is digesting her food well, she's pooping regularly, I mean so much so that I'm buying a new pack of diapers every week. She even had a blow out poopie diaper earlier in the week. So doesn't that mean that she's digesting?

This doctor also proceeded to warn us as other doctors have in the past that Alicia's circumstance is very special, and to not to expect her to be like children born at term. She'll probably have some problems that they don't have, especially since she's been on the ventilator so long. OK. This is developing into a pet-peeve of mine and I'm trying to be understanding about it. But why do doctors compare a preemie to a full-term child? Obviously, she's not a full-term child. And obviously, she's got some challenges to overcome. I guess it does help to have a point of reference. And I guess it does help to keep in mind that preemies do have struggles that full-term babies don't have. But honestly, if you are going to compare, please tell me how she is doing compared to other preemies. And so I asked her that and she said that Alicia's condition is worse off than other preemies. Another blow.

Immediately in my spirit, I began to fight. No. Not my baby. What do you mean worse off? And so I began to war in my spirit and pray and denounce the words that were spoken over her. Even now as I write this I'm really cloudy on the details of everything spoken and everything that I felt. All I remember is feeling, then fighting this overwhelming sense of defeat and disappointment. It took a conscious effort to turn my eyes upon God and to remember his promises to us. Alicia shall not die but live and proclaim what the Lord has done.

Speaking of which, the good news is that all the prognoses for Alicia right now seems more focused on her health. It doesn't seem like there's any doubt that she will live at this point, which is a huge praise. The focus now is quality of life - helping her to grow, helping her lungs to get healthier, checking the eyes, observation of motor skills, etc ... So we're thankful, our girl is here to stay.

As I struggled to process and to hear what the doctor was saying to us, I just felt God's gentle Spirit reminding me to focus on him and to focus on his promises to us. We are really thankful for the doctors and their care, because without it Alicia may not be here today, but at the same time, they are not God. God is all mighty, all powerful, he is the great physician. He is fully capable of giving Alicia an abundant and thriving life, and we believe that Alicia is going to be better than fine. She's going to thrive.

But as I started this blog by saying, it's so easy to start focusing on what the doctors are saying instead of keeping our eyes on our Jehovah Rapha, our healer.

It reminded me of the story in the Bible of Elijah meeting God on Mount Horeb. Elijah was suffering from depression after winning a great victory for the Lord. He went up to the mountain and hid out in a cave. God met him there and told him to step out of the cave and prepare himself because he was about to pass by. There was a powerful wind, an earthquake and a fire, but God was not in any of them. Then after the fire was a gentle whisper. When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave.

Now in the past, when reading this story, I imagined God whispering something after the fire. And in some biblical translations it refers to a "still small voice." But as I was researching this phrase this morning, I learned that actually a better translation for what happened after the fire is "silence." Wow.

So often in the midst of things, I sit here and wonder God why aren't you saying anything! But he is. Sometimes he speaks volumes without uttering a single word. Made me think of the song "When You Say Nothing At All." Funny thing is I've heard this song many times, but never thought of it in the context of God, but as I read the lyrics, as with many things that have been popping into my head suddenly these days, the words are oddly appropriate.

It’s amazing how you can speak right to my heart
Without saying a word you can light up the dark
Try as I may I could never explain
What I hear when you don’t say a thing

The smile on your face lets me know that you need me
There’s a truth in your eyes sayin’ you’ll never leave me
The touch of your hand says you’ll catch me if ever I fall
You say it best when you say nothing at all

All day long I can hear people talking out loud
But when you hold me near, you drown out the crowd
Old mr. webster could never define
What’s being said between your heart and mine

The smile on your face lets me know that you need me
There’s a truth in your eyes sayin’ you’ll never leave me
The touch of your hand says you’ll catch me if ever I fall
You say it best when you say nothing at all

The smile on your face lets me know that you need me
There’s a truth in your eyes sayin’ you’ll never leave me
The touch of your hand says you’ll catch me if ever I fall
You say it best when you say nothing at all



OK. So the one line about "needing me" doesn't quite fit with God. We could maybe change it to "want me" because he does want me. He wants to have me and to have a relationship with me. Which in and of itself is something amazing.

So the challenge is to keep my eyes and ears trained on God's promises and presence. To listen for the silence and the stillness. To just bask in his presence, and just to be with him. Sit as I sit with Linda sometimes, not saying a word, but taking comfort in each other's presence. Standing firm, despite what the doctor's tell us. Definitely not fooling ourselves and imagining that things are going to be hunky dory and picture-perfect. No. We still pray and we fight for our daughter, but we also stand firm and remember God's promises.

Alicia continues to do well, as of yesterday morning she's up to 724 grams and now she's eating 13cc per feeding instead of 12. (Again, why are they giving her more if her digestion is bad? What the doctor said, just doesn't make sense.) She's still struggling with her breathing. She has fewer apnea spells which is good. But she still struggles when she eats. We were reminded again yesterday that as of now Alicia has the lungs of a woman 80x her age. The damage to her lungs has been significant. But we just pray that she will heal quickly and that she can get off the ventilator as soon as possible.

Please continue to pray for her and ask the Lord to direct your prayers in terms of which area of her development to focus on. There really is a lot to pray for. But we have hope and we continue to move forward and fight for our daughter. She's our little warrior princess. God has a mighty plan for her. Can't wait to see what how it all plays out.