It's Been a Very Bad Year

Meditations on science, faith, God, and Satan

Two summers ago, while Amelia and Kirrily were in New Zealand (and before we knew anything about metachromatic leukodystrophy), I attended a mass where our priest gave one of those “why bad things happen to good people” homilies. He talked about knowing a family with a daughter who was quadriplegic, and how awful it seemed that she had to suffer like that.

But he pointed out that she had a brother, who was always taking care of her. He never complained, he treated her kindly, just like her parents did. The priest told us the boy was learning about unconditional love, and he’d carry that with him as he grew older. And his example was something that everyone in the parish and everyone he met later on would learn from. At he time, considering her suffering to be somebody else’s life lesson, I thought that was terribly unfair.

I still do.

People often tell Kirrily and me all the time that we’re doing a good job, that Amelia’s an inspiration.¹ I know they mean well, but it’s difficult to hear. I don’t want Amelia to be a teachable moment; I want her to have a normal, healthy life, and grow up to do all the things she dreamed of doing.

Science

Today (yesterday, by the time you read this) is exactly one year since we learned about Amelia’s disease. We obviously knew something was wrong before that; that’s why we were seeing a neurologist, after all. But looking at old videos and photos from the time, it’s painfully clear how much we’ve lost.

Amelia reading a book on her own in 2021

We tried everything medically possible to help her. Flew to Minnesota for an experimental gene therapy, but it was “too late” for her to even try it.² Reached out to researchers in Germany about CRISPR technology, but we’re too early for those trials. Saw MLD experts in Philadelphia, who could only offer managed decline. We even tried some alternative medicines, which at least seemed to help for a little while.

Last week, she finally had a feeding tube surgically inserted, just so she can get enough calories into her body.

Doctors pulled a loose tooth, so it wouldn’t come out during the surgery.

Faith

My parents tell me that some people have asked how they raised someone so religious as me. I don’t know that I was particularly religious before. When something like this happens, I think you either grow closer to God or reject God. There’s not really a whole lot of middle ground when faced with something as enormous as the loss of your child.

And so, we tried praying a novena for healing, taking a pilgrimage to Lourdes, visiting a shrine to Padre Pio. Our families, our friends, our fellow parishioners, even strangers from around the world are all praying for Amelia. The effect, as far as we can see physically, has been about the same as the medical treatments.

I wrote about the book of Job towards the end of the original novena, and after the Lourdes trip, both times quoting God’s line, “Where wast thou when I laid the foundations of the Earth?” The point being, Who are you to question me?

“The Lord Answering Job out of the Whirlwind” by William Blake

Which, fair enough. But God isn’t the only supernatural character in Job. Satan has a large part, as well.

Since we’re getting closer to Halloween, I re-watched The Exorcist. As you might imagine, I found a lot to identify with this time around.³

There’s a scene which was cut from the theatrical release, but restored in the longer version. I don’t know why it wasn’t in the original, because it’s probably the most important scene in a movie about the loss of faith:

Fr. Karras, who’s not even entirely sure he believes in God (at least at the start of the film) asks Fr. Merrin, who has no doubt whatsoever, why Satan chose this cute little girl to possess.

Merrin’s answer is… honestly, I don’t even know how to describe it—

I think that the point is to make us despair. To see ourselves as animal and ugly. To reject the possibility that God could love us.

Job questions God, but he never rejects God, the way Satan bets he will. Fr. Karras actually comes closer to God because of Satan’s scheme.

What’s the Point?

These are stories,⁴ which inherently have a lesson to teach. But life isn't necessarily like that. Sometimes shit happens.

Then again, I’ve seen a lot of people growing closer to God. I was surprised how many people came out to our Rosary Pilgrimage, to be with Amelia before the procedure. Friends volunteered to create a meal train afterwards, so we didn’t have to worry about making dinner while Amelia recovers from surgery.

Several friends tell me their kids remember to pray for Amelia every night. Students at Kirrily’s school have raised money with bake sales and lemonade stands. Amelia’s best friend Ella still wants to come around and visit, even though Amelia can’t really play anymore.

Amelia and Ella hanging out

They do all of these things because they believe God values Amelia as much as anyone.

What Else is There?

Tomorrow’s⁵ Gospel reading is the parable of The Unjust Judge, a.k.a. The Persistent Widow. A widow pleads for justice from a judge, but he rejects her. She continues to bother him, over and over, until he finally gives in.

I looked for a more dignified illustration of the parable, but I found this “talk to the hand” gesture too hilarious to pass up.

Jesus explains the point of the story pretty straightforwardly—

Will not God then secure the rights of his chosen ones
who call out to him day and night?
Will he be slow to answer them?
I tell you, he will see to it that justice is done for them speedily.

The point being, of course, that we should keep praying. It has been a year, so “speedily” doesn’t seem to apply in our case. Then again, who can grasp the time scale God is working at?

Jesus isn’t done—

But when the Son of Man comes, will he find faith on earth?

Do we have to keep praying to prove we have faith? Do we keep praying because we have faith? Do we keep praying in order to find faith?

At this point, I don’t know. Praying over and over again with no reply can make one feel a bit like Charlie Brown.

That’s not really a great point to end on, but that’s all I’ve got at this point. If Amelia wakes up miraculously cured, I’ll be sure to let you know. That should answer a lot of questions.

1. One guy even said we were doing “a hell of a job” at church, which, you know…

2. You may have heard of “compassionate use,” but it’s not what you think.

3. Which is not to say Amelia is possessed; in some ways, that might be easier, since there are known, workable treatments for that, as opposed to MLD.

4. There’s some disagreement on just how much of Job is historical fact, and how much is poetic license or parable.

5. Today’s. Man, it took me a long time to write this. I wonder why.