I Never Want To Go Through That Again

During Nathaniel’s hospital stay, we had a very frank conversation with Dr. Acton, Nathaniel’s pulmonologist, about the possibility of Nathaniel having Cystic Fibrosis. The symptoms of CF are: 1. very salty tasting skin, 2. persistent coughing at times producing phlegm, 3. frequent lung infections like pneumonia or bronchitis, 4. wheezing or shortness of breath, 5. poor growth/weight gain in spite of good appetite, 6. frequent greasy or bulky stools, or difficulty with bowel movements, and 7. small growths in the nose called fleshy polyps.


Of those 7 symptoms, Nathaniel has 5. When he exerts himself, he sweats profusely, and his sweat is so salty that when it dries, it actually leaves a filmy residue on his skin. Salty skin. He coughs incessantly. He has had lung infections, considering the severe pneumonia he had a couple of weeks after his birth that caused his lung to collapse and the ongoing breathing issues with which he’s struggled. His wheezing sometimes is so loud that it can be heard from another room in the house. He’s a tank, so number 5 is ruled out. He doesn’t have so much the greasy, bulky stools, but he has very difficult bowel movements, and at times will go up to a week without pooping.

When we had the conversation with Dr. Acton, I could see the concern on his face, especially after I mentioned to him that his sweat seemed excessively salty to me. He told us that he would be tested the following morning with the golden measure “sweat test.” If Nathaniel’s sweat were excessively salty, that would be a positive test result.

I went home that night and researched CF. Nothing I read filled me with a lot of confidence. By 11:30 pm that night, I was so worried about this that I was literally physically sick. I went into the bathroom, threw up, and then I wrote the following:

I guess I'm preparing for the worst. Not really hoping for the best. I will not be surprised if the test comes back positive.


There was a time when a person with CF would not be expected to make it to kindergarten. Medical advances and better treatments have extended CF patients' lives into their 30's, sometimes early 40's. It depends on the severity level. Today, 45% of all people with CF are 18 years old or older. These statistics and information all came from the Cystic Fibrosis Foundation's website.


I'm beginning to think about what it will be like to have to bury my son. It might not happen for 40 years, but there is a level of certainty that comes from my gut that I will watch my son die.

After that last sentence, I could not write anymore.

Needless to say: I was a wreck that night.

I never want to go through that again.

But the reality is Nathaniel has severe hemophilia. Even with the factor infusions that he’s going to receive, there is no guarantee. A trauma (like a minor car accident) that might just mildly injure someone could cause in him a bleed severe enough to kill him. Teething could cause severe bleeds. He’s got 2 very active older siblings, with whom he’s going to try to keep up as they climb and jump and fall and sword fight with baseball bats. One good whack to the head could do him in.

There’s still a good chance just with the hemophilia that I will watch my son die.

I could say, “Been there, done that.” The night of July 3 to the morning of July 4. I have no doubt that night that Nathaniel could see the angels gathering around him to welcome him to heaven. We got to the ER before midnight, and it was 4:30 or 5 in the morning before we were told that our little boy was going to live. I’ve had nightmares about that night.

The Sunday immediately after that night, there was a baptism at Church. I dreamed that night that the baby that was baptized at Church was dead.

I have nightmares about it still.

I never want to go through that again, either.

But what do I do with this ongoing fear that Nathaniel will die before I do?

Why is it so different than the knowledge that my grandfather has terminal cancer? When I think about my Papa going to meet the Lord, I’m hurt, but I’m at peace. I’ve said all the things that I feel like I’ve needed to say. Our relationship is fulfilled. He knows that I love him and I’m at peace with his journey.

Maybe it’s the fear of the loss of the possibilities. Nathaniel’s life could be gone in 80 years, or it could be gone tomorrow. That doesn’t make him all that different than anybody else, really. Nathaniel forces me to look at the reality that life is fragile.

We, all of us, hang by a thread to things that could be gone to us in the blink of an eye. How empty the pursuit of these earthly things seems to me. How futile. What a monumental waste of time to spend our efforts and energy on anything other than that which will endure for eternity. “Do not store for yourselves treasures on earth, where moth and decay destroy, and thieves can break in and steal. But store up treasures in heaven, where neither moth nor decay destroys, nor thieves break in and steal. For where your treasure is, there also will your heart be.” Matthew 6:19-21.

And yet, I’m confronted by the practicality of living this life. If I give up the useless phone conferences at work over the changes they want to make in our client documentation computer program, I’d lose my job. Useless to the pursuit of the spiritual and eternal, but necessary if I’m going to put food on the table for my family. Providing for my family, though, is spiritual and eternal. I’m fulfilling the vocation to which God has called me as a husband and father.

In this context, the mundane, seemingly useless things in life become highly important. I sacrifice out of love for the greater good of my family this time and these efforts on activities that are mundane, useless, boring. By making this sacrifice, I provide for my family, and thus fulfill my spiritual calling.

It is in what we sacrifice here on earth that we store up our treasure in heaven.

Odds are that I am going to have to bury my son someday. God, please, if that time comes, please help me to offer him in a spirit of sacrifice, so that he will be among my treasures when I enter into eternity.

But, God, honestly, I never want to go through that again.