Day 84-32 – T Minus 5 and Counting

I feel like maybe I should be writing T minus 5 days and counting, as we anticipate Justus’ next big event, the replacing of his bone flap. Ever since he’s been able to move his right arm he has clearly reached up to touch that spot on his head. It scares the bajeebers out of his parents to see him touching the area where he has no skull. But it certainly makes sense that he would want to touch it. You can tell he knows there is something wrong with his head. Of course I can’t imagine what it would feel like to have a piece of my skull missing (and I’m hoping never to find out!). When he touches his head, we’ve tried to be quick to say, “You have a big ouwey but it’s getting better and they are going to fix it soon.” Someone asked us if we thought he understood what we were saying. Honestly, we don’t know, but we’re sure it’s the right thing to do (Journalist for Jesus).

We continue to ask for prayer for his upcoming surgery. Maybe the bigger prayer is going to be moving him out of his room at Randall. If you remember when we had to move from the PICU to the 10th floor; moving our crew is no laughing matter (Moving Our Crew). But seriously I’m sure we’ll survive. The hope is for everything to go smoothly at Doernbecher and to return to Randall quickly and resume his rehab. We are trying not to get our hopes up, but we continue to hear about kids making big gains after they get their bone flap put back on. Based on how much of his attention the missing bone has garnered from him, it would certainly make sense to me, allowing him to feel normal could make a big difference. That’s certainly our prayer!

And please keep praying as Alyse and Jason continue to make decisions about work and rehab and managing the logistics of this next season of their life. I say that and immediately am reminded of how thankful we are to be in another season with Justus… so I’m not complaining, just asking for prayer for wisdom and grace throughout.

It’s rare for me to go very long without something making me think of #TeamJustus. Tonight was no exception. I had the privilege of doing something I had never done. I officiated (I think that’s still the right term) a renewal of vows ceremony for a couple in our church. Sonny and Joyy have a wonderful story of God’s faithfulness to their marriage and the perseverance it takes sometimes to make it through. But as part of the ceremony I read these verses from Philippians 2:3-4:

Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves, not looking to your own interests but each of you to the interests of the others.

We’ve talked a lot about community over the course of these last 84 days. I couldn’t help but think of all of you in #TeamJustus when I read these words. You all have looked at the interest of this little boy over your own interests. Some of you have sacrificed sleep, resources, time, and emotional energy… with no hope for some selfish ambition. No, you did it simply because it was the right thing to do. It’s how the bible says we should live our life; to think more highly of others! Talk about something that is so counter culture from the messages of entitlement we get today. I hope we will all remember what a blessing it has been for everyone to think about other people, instead of always being focused on ourself!

Of course in 5 days, I’m sure I’m going to be feeling a little selfish again as I’ll be asking for big prayers for Justus. The good news is, we don’t even need big prayers, what we need are prayers to a big God. And in those prayers, will you join me in asking for Justus’ head to be returned to normal. I can’t wait for him to reach up and touch his head and find it complete. It will be another step in the right direction. I better finish so I can post this before it is actually T minus 4 days!