How we dealt with uncertainty, I think.

Myla will live.

No, she's going to die.

Wait, maybe she will live after all.

Such has been the epistemological ping-pong game that Melissa and I have found ourselves playing during the last several weeks. We simply don't know whether Myla will survive her cancer. In fact, no one knows besides God. And last I checked, we're not Him.

This entry is a clumsy attempt to share our experience in dealing with the high levels of uncertainty regarding Myla's condition. I'm sure Melissa's version would be different from mine, but I sense that it would be only slightly different. For the most part, we have had similar cognitive and emotional responses to Myla's condition and to the uncertainty that surrounds it. Being in sync with one another has made this journey a much easier one to walk.

Let's travel back to the day Myla was born. I was driving back to the hospital that evening when I took a self-portrait of me behind the steering wheel of my rental car. Sometimes I do this just because I'm playing around, but this time, I sensed that this was one of those key moments in my life. Earlier that afternoon, a doctor who visited our room suggested that Myla might have histiocytosis. So while I was driving, I was thinking through the implications of this diagnosis with such intensity that Doppler radar might have picked up a rotation.

After hearing about the impromptu diagnosis earlier in the afternoon, I did what many of you would do--I went online and read the descriptions of this disease from sources like Wikipedia and the Histiocytosis Association of America. Some descriptions were more graphic, like this one from the online Health Encyclopedia:

"The tumors produce a punched-out appearance on bone x-ray. Tumors in weight-bearing bones, such as the legs or spine, may fracture spontaneously. There is often systemic (whole body) involvement as well, causing rashes, lung problems, gum infiltration, lymph gland swelling, hormonal problems, enlargement of the spleen and liver, and anemia. Not surprisingly, with a disease that affects so many systems and organs, histiocytosis may be deadly."

Wow. A mere 13 hours ago, everything seemed fine. Now, I wasn't so sure. I was fairly sure that I wasn't feeling so fine, but that comes with being a human in a situation like this.

The article continued, "Young children, especially infants, are more likely to have systemic involvement and a fatal outcome."

Ouch.

Meanwhile, Melissa was back at the hospital doing the Myla thing, and even though Melissa had heard the word histiocytosis, she knew little about it. Sometimes, ignorance is bliss, and what a difference a few hours can make. I felt overwhelmed with devastation at the thought that our precious little Myla might have a disease described online in such ugly terms. Ironically, doctors would later tell us that we should hope Myla has histiocyctosis instead of leukemia.

To make a long story short, we lived the first three months of Myla's life not knowing whether she was going to live. Of course, we're all going to die, but you know what I mean. On the other hand, I was struck by the idea that ALL of us are dying from the moment we are born. Some of us will die sooner than others, but the outcome is inevitable.

Somehow, I found myself spending a fair amount of time taking pictures in various cemeteries as I processed Myla's prognosis. I know, that sounds morbid, and I haven't even told Melissa that I had done this. Really, I'm not a fan of cemeteries--"Dude, let's pack a lunch and head for the stones"--but I think I was drawn there in part just because I wanted to take pictures of various grave markers using an assortment of lenses. Another part of me, though, used this experience to confront the prospect of Myla's death head-on. I don't recommend this for others, but for me, it helped.

While spending a couple of hours alone in a large cemetery in Indianapolis, I found a toy truck that someone had left at the grave of an infant boy. Ironically, it was the monster truck called the Grave Digger. I didn't know whether to laugh, cry, or maybe both. Just how do you respond to something like this? Wow. Walking through this huge cemetery reminded me that others have faced the loss of a child. This nightmare that we are experiencing--it's nothing new to the human experience. People by the millions have experienced the loss of a child.

Then, there was this. This scene reminded me that Myla would either be fine, or we would stand here, someday soon. Too soon.

But that's the reality, and from the start Melissa and I accepted the possibility of both sides of Myla's prognosis. Neither of us played the mental game of denial, and I guess that partially explains why I took that picture of me driving. Like Melissa would do later, I was grappling at that moment with the very real prospects of Myla's death.

And speaking of the reality of death, is that all there is to it--a hole in the ground? If so, then I think the loss would be close to unbearable. As I toured that cemetery in Indy, I couldn't help but reflect on all the grief-stricken dramas that had been played out there. But for us, there was the hope that Myla's story would not end in a grave, but that she would be instantly in the presence of her Maker in heaven. So, from that standpoint, the jigsaw puzzle pieces of both Myla and a tragic death don't fit--at all.

I can imagine that people make similar statements as part of a mental mind game they play with themselves, and religion is often used as a psychological crutch for some in times of need--some way to deal with what Festinger called cognitive dissonance. But for Melissa and me, the application of deeply-held theological beliefs into our daily lives was nothing new. Myla's condition was just a new domain to apply them to. Believe me, if I were looking for some emotional tranquilizer, I wouldn't have been taking pictures among the dead. Nevertheless, there is great comfort to be found in the thought that Myla would be in heaven if we she were to die.

I also mentioned earlier that no one knows Myla's outcome but God. More than anything, it has been a shared sense of God's loving providence that has carried both Melissa and me through this trial. At a later time, I'll unpack the philosophical presuppositions that led Melissa and me to a belief in God, but for the time being, I'll just say that we never doubted God's goodness or power regarding Myla's situation. We have been so convinced of God's loving providence that we have been able to live with this potentially insane-causing level of uncertainty. We believe that God knows exactly what Myla's outcome will be. The prognosis isn't 50-50. In reality, it's 100-0.

Or, it's 0-100.

Either way, God knows the length of her life, He's loving, and He's in control of all things. I remember hearing a sermon back in my college days at Cedarville University by Dr. Erwin Lutzer, the senior pastor of the Moody Church in Chicago. The text was taken from Matthew 6 in the New Testament of the Bible, and topic was on worry. Lutzer stated that it makes no sense to worry, and he illustrated this by giving an example of man holding his suitcase while riding a bus because he thought the bus couldn't support both him and his suitcase. Worrying about Myla's outcome, as I see it, would be a lot like holding a heavy suitcase while riding a bus. Instead, we have worked to transfer our emotional baggage to the One who can bear all things.

Oh, and uh, that's NOT to say that we don't feel very real human emotions. We struggle, certainly. There are those moments, and there have been days I couldn't catch my breath. I recall one day in particular when we were convinced that Myla was going to die. Later that day I found myself alone in the baby section of Meijer shopping for something for Melissa had asked me to pick up. Surrounded by reminders of the cute and cuddly, I was struck by how radically far removed Myla's condition was from all these baby things that were soft and adorable. And for the first time in my life, I paid attention to parents shopping with their daughters. It seemed that all I could hear were the voices of children. That was a tough moment. So, Melissa and I are by no means immune to grief, but I don't think we will be paralyzed by it. (Actually, I did see one girl throw a MAJOR screaming fit in the shampoo aisle. I found myself thinking, "Well, maybe this thing isn't that bad after all." The things we think.) :)

I'll end with this. I believe that Myla's condition was not something that slipped through the cracks of divine providence. This didn't "just happen." I say that for several philosophical and theological reasons that I'll explore in later posts, but get this--the chances of Myla being born with AML are only 1 in 5,000,000. There were only about 3 million babies born in the United States last year, so a baby like Myla is born every couple of years. Further, most of the babies born with leukemia have ALL. Myla has a more rare form of leukemia known as AML--a cancer not generally found in infants, but in older men. I firmly believe that there is a reason for why Myla has this condition, but that's for another post.