This is about the kids, right?

Friday started a weekend experience for the youth at our church called "Straight up Weekend". Our theme this year was doulos (bondservant in Greek). It was all about the importance of us becoming servants to others in the name of Christ. In order to serve effectively we can't focus on ourselves. There are so many things that can distract us from doing what we should to help others. Most of them can be quickly overcome if we want those obstacles out of the way. But we have to make a choice.

Through the weekend there were six girls in my group. Being a facilitator is sort of like being a youth leader through the weekend, all of the weekend to a very small group. We were able to really talk about and digest the messagess together. They really understood and absorbed what was being given to us this weekend. We had the blessing of getting to work on a service project together. We cleaned the home of a 94 yr. old man who had been up sewing clothing for migrant children most of the night. He showed us the clothing he had been making. Little jumpers, sun suits, shorts and shirts. He was really good at it. It was a blessing to be able help someone that was helping others. I can't go into much detail, but the girls in our group were great girls. We had so much fun together and they were so spiritually awakened by the weekend. They carry heavier burdens than we expect sometimes, but hopefully, they ended the weekend a little lighter. I sure did.

Haley started off the weekend feeling badly. On Friday afternoon she was crying in pain. This weekend she would be staying with a group of her friends and her Bible Fellowship (Sunday School) teacher. She wasn't going to miss it no matter how much pain she was in. Friday, she spent the day under a heating pad and took some extra pain medication. The girl was packed, ready to go and no pain would stop her. We had been praying for weeks that she would be pain free for the weekend. Either she stopped hurting or it didn't matter because she enjoyed the weekend so much. It was a gift to see God's grace help her through so that she could participate and even serve during the weekend. My kids all had a great time and learned so much.

Then there's me. Friday night I arrived at the church in tears, worried about Haley. Starting the weekend off with a distraction wasn't a good thing, my mind needed to be clear and ready to focus on what we were doing. Then Friday night's service started. First, there was great interpretive dance done by some really gifted girls, to the Brandon Heath song "Give Me Your Eyes". Then Matt Papa's band lead us in worship followed by Matt Speaking. We sang about God's mercy and power. At one point during worship, Matt spoke of worshipping God, and it being the end result of everything. It's what God longs for and what I should do more of. Then the message was about taking the focus off ourselves and putting it on God. We involve ourselves in self worship too often. We meaning "I". Without even knowing it. Throughout the evening, little truths kept adding up to a big one. This is big and it has changed me. Taking a weight off me that has been there as long as I can remember. Here goes.

Haley's problems are not something that God has "allowed" to happen. Haley's problems are part of God's plan. She came to us exactly the way God wanted her to be. The one thing that has been consistent no matter how painful or difficult things have been for Haley is God's faithfulness. He has shown His power, His mercy and His love for us in every situation, in every trial He has been faithful. He has been glorified in our darkest times. Haley is walking, talking evidence of God's care and kindness. I've always thought that there was something for me to learn, some growing that I needed to do. That the reason my daughter has all this stuff was about me needing to do something. Finally, it's not about me, or us. It's about God and His plan to demonstrate how wonderous He is. I think that's the plan. Haley isn't a victim of everything going on in her body. She is fearfully and wonderously made just the way she should be. It has taken forever for me to get it.

Well it's been a while...

This blog has been a bit neglected. It's pretty much just been here as a dumping ground, and I don't seem to visit unless something new is happening with Haley. Pretty much it's been more of the same for her. The good news is that the medication she has been on is still working. She sees her rheumatologist next week and he'll be letting us know what will happen next in that respect. Hopefully, he's found a few other pediatric Sjogren's patients somewhere that he could get a little more treatment information from. The thought of her on Prednisone for too much longer. It's pretty scary stuff. We'll see.

Yesterday was a visit to Shriner's Hospital. You all know (if there is even a "you"?) that I love the Shriners, they took good care of her again. Her curves have increased more than they'd like to see. Considering how little she's worn that brace, it's understandable. Everyone has a breaking point, and that brace has been hers. For now, they recommended water physical therapy. With her also having the Sjogren's, Ehlers Danlos syndrome and hypotonia (low muscle tone) the therapists there thought water therapy was the safest. So I'm looking. Haley's just glad she doesn't have to wear the brace for now.

Our next stop was to see Dr. L (aka, world's best dentist!) because I noticed a new cavity last week. Actually she had two. That's how fast things go badly in her mouth. Her amazing dentist fixed everything with the least pain and we were off. The dentist had printed me out an article about the oral issues of Sjogren's patients. I started to read it in the office but thankfully, finished it at home. It contained helpful information but also information that shook me pretty good. I've read this before but choose not to acknowledge it. Patients with Sjogren's syndrome have a "twenty-fold" increased chance of developing lymphoma. Not fun to read about your child. The patients studied are generally 40-60 years old, so no one knows what to expect with patients Haley's age. Again, I choose not to think about it. But for some reason, the thought has been creeping in more than I'd like it to. God has been so good to us, and He's given me the most peace that I think any parent of a "special edition" could have. I read Luke 12 today. Verses 22-26 really helped me. Wasting time worrying won't add an hour to anyone's life. That's a good lesson for me. My trust is in the Lord.