Day 18 – post #1

Often when Kelli and I are walking into a situation where we are going to get some news I’ll talk her into preparing for the worst. It’s not that I’m not an optimistic person, in fact I really am. It’s just that aged old trick of expecting the worst, then when something better happens it actually feels like good news. I’m not sure that actually works, but it sounds good in theory. The opposite is rarely a good idea. It’s like the new movie that everyone is raving about. By the time you get to the theatre you’ve heard all the best lines from the movie and you’re so excited for this incredible experience. It seems to almost always be a disappointment. On this journey we’ve been careful to not get our hopes up too high; at the very least we’ve been prepared for anything. Each day we’ve been guardedly optimistic, but prepared for the worst.


The problem is today we came with higher than usual expectations. Like many of you we felt like God had spoken and we knew what was going to happen. Unfortunately this morning didn’t go as expected. We’re on our 18th day. I know some of you reading this have been in situations like this longer. But for us, it’s been a long haul. We were so hoping to find out we were on the downhill run. After all the excited emails we got from #TeamJustus the last thing I wanted to do was to bring anything but great news. But I’ve tried to be real since the beginning. I always want you to trust what I’m telling you. You all have faithfully supported this little boy for so long. But I just left his hospital room from a very tense conversation with the doctors.

The last I shared we were on the way down with the pentobarbital that is keeping Justus in a coma. Last night he dropped to 3.5 and he was scheduled to drop again to 3.0. After some early morning concern over blood pressure his level was dropped to 3.0 around noon. The EEG is showing a little too much irritability so they’ve decided they should slow down the weaning process. In fact they are going to take him back up to 4.0 in hopes of stabilizing what they are seeing. Disappointing, but we are standing strong for Justus’ sake! After all, he’s being so strong!

Concurrently to all of this, we are having a conversation regarding a test that just came back showing an elevated level of a thyroid antibody. There is a rare presentation of this disease that attacks the brain and they want to treat that condition, however rare. The hard part for Jason and Alyse, and the rest of #TeamJustus, is the treatment. It requires them to put a catheter in his leg and take a third of his blood out and literally scrub it and put it back in. They’ll do that every other day for five days. So for ten days we are going to watch him go through a pretty invasive treatment. There were a lot of tears as we considered what we were asking our little ninja warrior to go through! He is such a brave boy.

I don’t pretend to understand why God has us on this journey. I can tell you, and I have witnesses to prove it, that meeting was hard. I came close to saying things to the doctor that wouldn’t have been very honoring. I couldn’t believe that after making so much progress and feeling optimistic, this could be happening. Right after the meeting I thought here we go again with the tension of our faith journey. A part of me wanted to tell Jason and Alyse, “Tell them forget it, God will take it from here”; and part of me thought, but what if this treatment is how God plans to heal him. Jason and Alyse, broken for their little boy, knelt tearfully as we prayed for wisdom and peace. But in a very real way, it didn’t feel like we were praying as much for Justus as we were praying for us. I had this sense Justus was just fine. We were the ones who needed, once again, to trust that even with this turn of events, the moon is still round.

Please, please pray! He’s been in a coma for 11 days and now it’s going to be even longer. That is so hard on so many levels. Pray for the EEG – well actually pray for the brain the EEG is reporting on. We’re asking God to calm the irritation. And pray for this treatment. There is risk in all of this. But our trust is in God. I know some of you have been praying for Justus for 18 days. We are asking you to stay strong like he’s staying strong. If I’ve learned anything these last 2 weeks it’s this ~ prayer is powerful. More importantly, the God we are praying to is almighty! Going into a situation with low expectations is a clever strategy for protecting yourself from disappointment – but if you really want to be secure in any situation, put your trust in the Rock! It’s what we are leaning on right now. Our petition of the Lord is the same as it was on the first day. We are boldly approaching the throne of God and asking him to heal Justus completely and restore his brain. But we continue to say – your will be done.

#TeamJustus now is using XIV:XIV, or 14:14 because Exodus, Matthew, and John 14:14 are messages for us all!!! Thanks for praying #TeamJustus. Thank-you again for hanging in there with us on this journey. We love you.