This morning the 4 of us were in our new van headed to church. It is rare that the 4 of us drive to church together because Brent is often at church before the girls are awake on Sunday mornings. Brent and I were talking about the GI appointment we have this week and what we needed to go over. I said one of the things we need to talk about is Lydia's poop. Jilli in chronically constipated, it is a part of the mystery but she uses daily laxatives so she is able to poop. It is not a perfect balance but over the last 4 years we have figured out a mix that has worked for her. Lydia's poop has always been ok. Its always been thicker then Jillian's but we have slowly noticed it becoming more of an issue. It is now March 12th and since the 1st she has only pooped 4 times and none of them have been normal for her. As Brent and I talked we knew what we need to discuss with the doctor. We have known for a while that this would likely happen at some point we were just happy how long it was holding out (this happened when Jilli was 4-5mo old and Lydia turns 9mo this week) but at the same time it still stinks. I was hoping it would hold out longer. I looked at Brent and said "It really stinks watching your kids' body systems each start to fail more." He looked at me and responded "we will just keep supporting the system as much as we can until there is a critical failure." Brent is a computer guy, the way he worded it is how his brain thinks. The reality is our children have multi system issues. Issues that are not getting better as they age. Some things we learn how to better support, some we learn how to put out the fire faster but we are not blind to it all and we realize the reality that our kids bodies struggle and sometimes the future really worries us.
We got to church and the message was about Psalm 78 where it talks about how God would provide for His people and then they would turn around and ask what God has done for them. It reality we all do this in different situations in our lives.
When Jilli first was hospitalized Brent and I sat down and had a serious conversation. We knew whatever was going on was something bigger then a quick fix. We looked at each other and decided that we could either live in sorrow or choose to find the joy. We choose joy. It is not always easy and it doesn't mean that we don't get frustrated and tired but we try to always set our eyes back to joy.
This has also shaped how we pray for the girls. After reading the Bible and discussion Brent and I chose to pray for the girls by asking God to use them for His glory. We do not pray for total physical healing. Let me explain why:
1. There will never be total healing here on earth until Jesus returns. The world is broken. That does not mean that we should not do everything in our power to live in alignment with God's will and live in such a way that points people back to Him (that includes taking care of the sick, orphans, widows, hurting ect) but it means that here is not going to be perfect.
2. We believe that God can use ALL things for His glory. This is not the same things as God going out to cause you pain, He is a loving God, His will is not for your harm, it is for you to know Him. But Romans 8:28 (side note that is one of my LEAST favorite Bible verses, not because I don't believe it, I fully do, but because of how people try to twist it) tells us that God works all things together for the good of those who love Him. God's definition of good and our definition of good do not always look the same and sometimes in the moment something does not look good to us but it is. We also tend to like to look at life as just about us and forget that everything we do impacts other people. We have seen over and over how God is using our girls right now to impact His kingdom and several of this things would not have occurred without their medical needs.
3. When you focus your eyes on one big resolution it can become easy to miss God in the everyday just like we talked about in Psalm 78 it, is easy for us to forget the things that is doing in our lives. I know me, and if I continuously prayed for healing then I would miss the things God is doing right now. The ways God is using the girls for His glory and I don't want to miss that. I don't want to get caught up that I miss all the amazing things He is doing, instead I want to continue to seek ways that I can be a tool He uses for His glory.
So what do we pray for:
1. Answers. We pray that God reveals answers that we need when we need them and that we have eyes, ears and hearts that are listening. I will fully admit that it frustrates me so much after genetics appointments when they tell us yet again they don't know what is going on but I try hard to focus myself back to God's timing. So we pray that God gives us the knowledge we need at the time that we need it to best care for the girls.
2. That He uses our lives for His will. This is a continuous thing. This is not an event that happens once but instead many small and large moments.
Now I don't want you to think that we don't care about the pain that our girls go through or that this all is easy. We care deeply for the girls and work hard to do everything that we can to help them. My full time job is their caretaker and advocate. 5:30 on Friday night I was talking with the wheelchair place asking them why in the world they are no farther along then writing her name on the form (ie nothing has been submitted to insurance, we still don't have the trial chair, they have not started making her chair) This week we see GI for Lydia and I will work with them on how to make pooping better for her, and the strange issues we are having with her stomach bile (it changed smells and is worrying everyone, stomach bile of someone who is NPO should not have a sweet chemical smell). It is not that we don't focus our prayers on healing because we don't love our children, no instead it is that we love our children so much that we pray that God uses them for His will and if healing is in His will then we will celebrate but even if there is not healing on this earth we will still celebrate because God is good and using us for His will.
This journey is not easy, the Bible does not say life will be, but we have God and many amazing people walking along side of us.
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| This peanut is working hard and figuring out how to crawl! |
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| Yesterday the train barn at the zoo was open for tours and Jilli had zoo class up there anyhow so we took time to look at one of her favorite things at the zoo |
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