A Surreal Farewell to Youth

Caring Bridge - June 8, 2019:

We are so thankful to report that Asher’s surgery—installing a shunt in order to relieve pressure from his fourth ventricle of his brain—went well. We are thankful that he was able to breathe adequately on his own after surgery and didn’t need a ventilator. Asher also showed incredible patience having no food for 14 hours, and no fluid for 6 hours prior to going into surgery. He was released on Saturday afternoon, and we spent the evening in our room at Tri Delta Place with family. Again, we are so thankful to God for these things.

Some things you can pray about:

Pray for his breathing to improve. He’s been short of breath a lot over the last 24 hours.

Pray that the dizziness he is experiencing will go away. He’s felt very uneasy today. If you move him around at all, he becomes startled, and says he feels like he’s falling.

If all goes well, Asher will begin a clinical trial no later than Tuesday. Pray that it goes smoothly.

Pray that we would have some quality time with family over the next few weeks.

Finally, Pray for Asher’s heart and mind, and for us as parents in how we navigate hard things that continue to pop up occasionally. Asher has believed for some time that if he simply does what the doctors tell him, it will be okay, and that makes perfect sense. He’s explicitly said in the past that he does not want to be told if a doctor ever says “there’s nothing else we can do.” One of the reasons we’re here now for a clinical trial is to honor his desire to fight. But I sense some bewilderment from him as to where all of this fighting is getting him. After all, things have only gotten worse for his body over time. This evening, as he was watching his cousin play video games today (one of many things Asher has been unable to do for quite some time), he asked me why his tumor wasn’t shrinking. I told him that we’re doing everything we can, but that, as a child of God, he can be assured that one day he won’t have a tumor anymore. That’s what I had top-of-mind at that moment, and while I believe it to be true, pray that we can navigate these conversations with wisdom, gentleness, love, and grace.

I’m so grateful for each of you that continues to pray for us.

We all know kids ask direct and often tough questions. And to this day, I don’t know if I said all of the right things. But I’d like to think I was doing more than grasping at straws. I was grasping for hope; the kind of hope that’s firmly situated on a foundation of truth. I needed those things for my own heart just as much as I desperately wanted to communicate true hope to Asher.

I wrote this post the day before my 39th birthday. I have always seen the thirties as the last decade of “youth,” and so it seemed like such a surreal way to begin my final year of that decade. And yet it also felt somehow fitting. We often associate youth with innocence, and innocence certainly felt like it had given way to a front row seat to one of the worst horrors of the fallen world. Before the year was over I had added a significant amount of gray hair to my head. I had always imagined going gray would give me a sense of dignity like a wise old man who had life experience to share with the whippersnappers. Instead, I felt like a mark that terrible events had subtracted years from my life. I was reminded of a few of the United States presidents of my life time that had eight-year terms. Clinton, “Dubya” and Obama: if you search for photos of them at the beginning and end of their terms, you’ll see what I mean.