Day 16 – post #2

For a day that started off with a little tension over blood pressure, we had a really great day. Justus’ numbers were high all day, but they didn’t really change. The concern from the get-go had to do more with what those numbers might be indicating rather than concern over the numbers themselves. While we don’t know for sure if something was going on, it certainly didn’t progress any further if it was. Those of us on-site were a little anxious all day. I should give you a little mental picture of life for our on-site crew. The PICU at Doernbechers has a very small waiting room. The group of us that have stayed all day every day (averaging around 20) can’t fit in the waiting room at one time. So, as you can imagine, when a bunch of us are in there, no one else tends to come in. Two things about that; first, there aren’t many folks that come to hang out for any length of time at the PICU anyway, and, second, whenever we notice someone, we do really try hard to invite them in. We offer them food and drinks and snacks (which, by the way, thanks to some of you, we have in abundance there). But we have only had a few takers in the 16 days we’ve been there. I know the hospital staff doesn’t know what to do with us. They’ve been great, but they aren’t used to large groups of people staying all day and all night. Kelli and I did get called into the principal’s office after one of the early days. It seems it’s against fire code to have people sleeping up and down the hallways! We promised we’d find other cubbies to sleep in and promised to be good. Again, they were very nice, just trying to do their job.


Lately, Kelli and I have been leaving the hospital at night (around 10:30pm) to get two of our granddaughters in bed. Then we return in the morning for the first shift. But half of the days, we’ve either slept in the waiting room on a chair, or been awakened from our sleep to rush back to the hospital. There have been multiple days when we went without showering or changing our clothes. And when we do change our clothes, we are rotating between 3 or 4 of our most comfortable outfits. My point is, oddly enough, no one seems too concerned about looking like a runway model. Suddenly, perspective has crept in and we’ve been forced to remember what’s most important. We all know this, but it’s easy to forget. We haven’t seen our house in over two weeks. I’ve probably driven my van a total of 40 miles in fourteen days. And our hair and lack of make up won’t be featured on any fashion magazine. All of a sudden, the size of our house or how nice our car is or what I wear becomes way less important. Obviously we’d trade any of those processions for a healthy Justus; most of you would, too. The point I want to make though is different.

Kelli and I have been blown away by the friends and family who have gathered around us during this storm we are in. Yes, I’d give up my house to walk out of here with Justus. But guess what, if I had to choose between all of my material possessions and the relationships we have… I’d choose relationships every time. I know there is a lot of pressure to keep up with everyone else, but I also know I have to work hard to guard against greed and selfishness when it comes to my material things. But we are created to be in relationship. It’s by design. God put into our very being a desire for community; a desire to be in a relationship, first with God and then with others. When I think of my own life, it hasn’t been rich with possessions, but I wouldn’t trade the relationships we have for all the riches in the world. And, can I add – especially at a time like this! So I feel like Justus has been a catalyst for us to titrate different parts of our life. Today I’m asking you to consider honoring Justus in the area of relationships. Is there a family member, a close friend, or maybe God, that you need to repair a relationship with? Why not? This has been the craziest journey to this point. Many of you are getting up in the middle of the night, looking at sunrises for the first time, praying like we never have before, even looking at Teenage Mutant Ninja Turtles differently… and all for a little boy you’ve potentially never even met! Could it be that it’s also time to reach out to someone and say,” I’m sorry”, or ” I forgive you”? Maybe the words need to be,” I miss you”, or just,” I love you!” I know I don’t want to take anything, especially the relationships in my life for granted ever again. I hope you won’t either.

And when you get this, I hope you will pray hard for Justus Sunday morning. The doctors believe we are approaching some critical times. One doctor last night said, “I’ve been at this a long time, he’s trying to wake up.” That’s not a diagnosis. That’s one man’s opinion. The important piece is, Justus is scheduled for an MRI in the morning at 8am. When you are in a medically induced coma with a hole in your skull, it is a very dangerous transport and procedure. But an MRI might just indicate that it’s time to begin the process of bringing him out of the coma. Obviously, there is a ton of anxiety for mom and dad. So please pray for safety, for peace for Jason and Alyse, and for positive signs from the MRI. Thanks again for being on this journey with us. I didn’t know it was going to be like this, but it has been such an honor to be taking this trip with all of you.

Today’s picture is from Christmas 2012. My boys took an old Little Tyke car and spray painted it black. Then we made Batman stickers for the side and voila, we had a Batmobile for Justus (18 months old). He loved it on Christmas morning until we told him he had to get out for the family picture. Then he refused. This was typically a pretty obedient child, but suddenly with this car he got stubborn. It was grammy and papa’s house, so we let him stay in the car and took the picture, anyway. I’m praying that stubborn streak comes out right now. We keep telling him he’s a strong boy and to never give up. Pray with me that he will be stubborn and never ever give up!!!