Monday, January 9, 2017

I don't have many answers, but I do know some things.

I finally got a chance to go to church Sunday evening.

I have only been to church a handful of times this year. It's just not doable in our current situation. It was Beau's night to stay at the hospital and my Houston friend, Amy, was leading worship. Of course, I had to go. I was glad I got to hear her beautiful voice.

Church is uncomfortable to me right now.

Don't mistake me saying that by thinking it has to do with my relationship with God. It doesn't.

It's uncomfortable to me because of me.

Two things ...
From the time the first chord is played or the first lyric sang, I fear I might crumble to the ground ... sobbing, snotting, moaning, barely breathing in a puddle of tears. I am and have always been a worshiper. I have lead many people in worship. It's something deep inside me. It's always been there. But, right now, I think worship may have to happen alone. I think it'd be way too overwhelming and distracting for those around me. So, I'm gonna have to keep that between God and me.

The other thing is I am not good at putting on a happy face. It's hard fro me to pretend everything's okay. And, I don't have the energy to tell people what's gone on and still going on. It's too much. Too much for me to tell and too much pressure for someone to know what to say or do. It's awkward and uncomfortable.

I long for church though.
I long, as I've said before, for community and relationships.
I know that it will all come some day when things are better. Hard to believe that things have to get better for church, community, and relationships, but it's just the way it is.
Thank God for my Houston Amy, her hubby, and the few who have reached out to us. It's hard for people. I get it.

It's easy to go to church and be a part of community when things are good. Much harder when they are not. Although, that's the time we need it the most.

I sat in this service, but didn't really engage. I didn't know a single song. I felt disconnected. It was a service not meant for me anyway, a younger crowd {we all know that's not me}. 
I disengaged after I heard the pastor say this: "God is moved by our faith, not by our need."

At first, it made sense. But, about two seconds later, it didn't.
I'm not convinced of this statement. In fact, I don't even think I agree with it AT ALL.

Of course, God is moved by our faith. 
But, if God is a good Father, kind-hearted, loving, and compassionate, how can He NOT be moved by the needs of His children?
Of course, He is. Just as an earthly father would give his child what he or she needed. If his child were sick, he would do everything in his power to help that child. I don't think any earthly father would not be moved by his child's needs, no matter what they may be. And, I have to believe it's the same with our Heavenly Father. He is moved by our needs. He desires to meet them.

I get it that He is moved by our faith ... that we believe and trust Him.
But, God just has to look down from heaven on my sweet girl, struggling, fighting, hurting and be moved. He just has to.

Jesus was moved by the needs of the people when He walked the earth. He had compassion on them. He healed them. He fed them. Even when there were those who did not believe, He was moved by their needs and met them. Not every single one of them. But, some. Why did He meet some needs and not all? 

I could get into all the questions of why some believers get healed here on earth and some don't ... why some believers prosper and others spend their whole life struggling ... why some believers just have a really hard life while others seem to have it made. But, I won't. Obviously, because I don't know. No one does. I'm learning to just accept that there are no answers to some questions. That's where faith comes in.

I must continue to trust in God, that His ways are higher than mine, that He loves my family, that He sees us, and that ... yes ... He is moved by our needs.

We ask that you lift our La Petite Belle up in prayer.
Tomorrow morning, she will be having her 7th upper GI scope done. You can imagine how nervous we are about this, seeing as we came close to losing her during the last scope she had in August. She's in a much better condition physically than she was back then, but, nonetheless, it's something we and the doctors don't take lightly.
All the tests that have been done on La Petite Belle's GI tract can only tell the doctors so much. Doing the scope is the best way to see what's really happening.

She has been put on new medications and her vomiting has decreased somewhat, but she still feels pretty bad most of the day. She's been sleeping a lot too due to the anti-nausea meds.

Another bit of info we got last week was that, after being negative for a while, she tested positive for HSV (typical cold sore virus). In an immune-compromised person, this can create all kinds of problems. She has it in her mouth now and think that it could be the cause of her throat and mouth pain. The doctors also suggested it could be in her esophagus and gut, which could be the cause of some of this. She was started on an anti-viral (which isn't great for the kidneys, but has to be used) to combat HSV.

La Petite Belle is still dealing with this hemolysis (breakdown of red blood cells), needing red blood transfusions more than before. The doctors are starting another round of the immune suppressant that was given during the last month. Hoping this will continue to slow this hemolysis down and it will eventually not be a problem for her.

Please pray with us that this scope will finally give the doctors the answers so desperately needed, and for the appropriate treatment to heal her gut once and for all. Also, pray that this virus would go and the hemolysis would stop. Please continue to pray for her kidneys and that she would be able to keep her strength up, even though we've been on this extended hospital stay.

Thank you for praying, standing, believing, and supporting us through this long journey. We are weary, but we know you won't stop praying. We appreciate every single prayer.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.