He can expect to live for 37 years
Jen wanted a girl. I wanted a girl too. Almost all of my friends have been girls, and most of those girls were close with their dads. Take the girl who, for whatever reason, decided at age 16 that Big Audio Dynamite was her favorite band. Big Audio Dynamite is no one’s favorite band, let alone a girl’s. Meeting such a girl was very confusing and intriguing. The girl in this example was very close with her dad.
I could have been the dad to such a girl! What an exciting prospect. Dashed.
During the pregnancy, there are all kinds of tests. You tend to lose track of all the tests. Your baby is positive for something and negative for something else and both these things are good. Your practitioner rattles through a new list of nonevents at every visit. You don’t understand most of it, but that’s okay. You aren’t really supposed to understand it until you need to understand it. You hold your breath until it’s clear that you don’t need to understand it, and then you stop listening. That’s how that works.
There are a few tests where you can watch what’s going on and figure out if you should be concerned or not. At one appointment, you go to an ultrasound place and they take maybe a hundred pictures of your fetus. The main reason they do this is to figure out if your kid has Down syndrome. Kids with Down syndrome have thicker necks, apparently. Just a couple of millimeters thicker, but those millimeters are the downy ones.
The technician at our ultrasound was silent throughout the procedure, which takes about 45 minutes. I would have greatly preferred she not be silent. “Maybe she is silent because she is such a professional, and accepts that her work is taking measurements, not diagnosing them. That’s probably what’s going on. Or maybe she’s from a culture that frowns on unnecessary speech. That’s probably it.” This is what I told myself. You discover your milder bigotries upon becoming a parent.
You’re not supposed to use your phone in the ultrasound room, so you excuse yourself to the bathroom and look up what the measurements are supposed to be. The measurement is called a “nuch luc” and it’s supposed to be around 2mm. Your baby’s nuch luc measurements have all been around 2mm. Whew. Thank god.
Lurking behind all of these tests is the prospect of an abortion. That word is never spoken, partially for the obvious political reasons, and partially because when you actually do want a baby you pretty much don’t want an abortion. But there might still be reasons you choose one. The results of these tests are those reasons.
Jen got genetic testing done. It was easy. It was just another yes in a series of yeses you are supposed to say yes to. Do you want genetic testing done? Sure. It’ll show if your child is at risk for an assortment of inherited diseases. Sure, sure, we already said sure. You’re already taking the blood for three other tests we said yes to. Sure. Send it to whoever wants it. Sure.
There are still moments where I wish we had a girl, but they are fewer and farther between. I love our son so much. He’s already a goof. I’m sure he’ll be an asshole for some stretch of his life, but hopefully just briefly. I hope if he’s briefly an asshole that he’ll at least be a funny asshole.
He’s already got my shit-eating grin. It’s going to get him in trouble, but that’s fine. That’s fine that’s fine that’s fine that’s fine.
There are plenty of moments where I forget that he has cystic fibrosis. Sometimes I forget because he is a screaming monster who cannot be calmed. Sometimes I forget because he’s flashing that shit-eating grin at me. Mostly I forget because remembering sucks.
Every article about cystic fibrosis goes like this:
A young [man/woman] in [boring suburb of boring city] is raising awareness of cystic fibrosis this weekend by [running/bicycling/walking] [some distance]. His [sibling/spouse] recently succumbed to the disease, for which there is no cure.
Cystic Fibrosis is a rare genetic disease that affects [number of persons] in [country of publication]. It causes the lungs and other organs to fill up with a thick, sticky mucus that, over time, will cut off breathing, eventually killing the sufferer. It requires lifelong treatment, and half of patients die before their 40th birthday. There is no cure.
I turned off Google Alerts about cystic fibrosis because these articles were getting extremely boring.
The actual average life expectancy is 37, and that average takes into account a really uncomfortable range of numbers. A lot of kids still die in their teens. More than you want to think about. And then there are all the lung transplants. You can stretch your life by a few years if you get one of those, but then you’ve got all the problems that come with having a lung transplant. “There’s been so much progress in the last couple decades!” is the first thing people who know anything will tell you when they try to comfort you. And it’s true. There has been so, so much progress. But a lot of kids still die in their teens. And then there are some assholes who live into their 70s.
Thirty-seven is the age they expect a kid born with cystic fibrosis today to live to. The median age at which current CF deaths occur is 29.
Thirty-seven is weird age to die at. Dying as a child is hopelessly sad. Dying as a teen is vaguely romantic. Die in your 20s and you are “cut down in your prime.” Die in your 30s and it’s just awkward for everyone. You might have had kids by then! Now they have to grow up without one of their parents. That’s so awkward.
When you get the diagnosis, the doctors tell you to check out the Cystic Fibrosis Foundation’s website and watch some of the videos they’ve produced. You can watch a video where parents talk about their reaction to the diagnosis. You can do this, if you want to.
You almost definitely don’t want to, because you don’t want your kid to have cystic fibrosis. You’d rather this not be the case. Those videos are for some Christian family to watch. For them and their little miracle. Not for you and your secular, healthy child.
“Today, people with cystic fibrosis are living into their 30s, 40s, and even 50s” is what that video tells you when you finally break down and watch it. Great.
That’s the first time you do the math. With luck, you and your kid might die at roughly the same time. You’ll be in your mid-70s, he’ll be in his late 30s. Neat.
There’s a guy in the video who talks about how he and his wife had genetic testing done before she got pregnant. The test didn’t pick up his particular CF mutation. There are a couple thousand mutations. One of them is very, very common. A few are not common, per se, but appear in significant numbers. The rest are very uncommon, shared by only a few hundred other people in the world.
So yeah, this guy’s mutation didn’t show up. He assumed he was fine. But then his kid had CF anyway. He looks really angry about this, and then he says out loud how angry he is about this. It’s nice to see that kind of anger in an official video about a terminal disease. You’re supposed to suffer in quiet dignity and always talk about how much hope you have. You’re supposed to be beautiful about the whole thing. It’s a tremendous amount of pressure. Being angry — just plain really angry — relieves some of that pressure. I’m glad the Cystic Fibrosis Foundation recognizes as much.
A lot of those girls I was friends with, their dads turned out to be distant, lost, sad. Quiet men who structured their lives to minimize time spent with their families. They took up hobbies. They took extremely circuitous routes to and from work. They wrote letters to local newspapers about the forces conspiring against them. Their daughters loved them. Idolized them. They did not appear to love their daughters. I would be sad to become such a dad.
We named our kid Dudley. It’s a tremendously unpopular name and that was one of the reasons we chose it.
At some point during the pregnancy that seemed like a really stupid reason to pick a name and I got cold feet about it. Also, everyone we mentioned it to really hated it. We’d say “Dudley” and a queasy look would pass over their faces. The look people get when they discover, after eating a yogurt, that it has expired.
“What about the nickname?” was one way people would try to fend us off the name. “I mean, you can’t call him Dud.”
We thought “Dud” was pretty funny and sorta cute, actually. There are certain perjoratives that are too silly to take seriously, and their only remaining usage is as a term of affection. I can’t imagine calling someone I don’t love a “butthead,” for example. Or a “dingus.” “Dud” seems to fall into that camp. Sorta. I don’t know.
Anyway, joke’s on him because he totally is a dud in the genetics department.
Dudley has no symptoms yet, which is great. His pancreas works. That’s pretty special. He is a very long baby. Most CF sufferers are on the shorter side. Each day I note that he takes up more of his crib and I feel satisfied.
I am sad that he is going to be in pain someday, and that I won’t be able to understand what that pain is like.
How will I explain CF to him? As a kind of morbid joke? Kids like jokes, right?
I don’t particularly want to think of myself as a “CF dad” and I don’t particularly want him to think of himself as a “CFer.” I guess that latter one is up to him, though.
I don’t particularly want Robert Downey Jr., say, to post a silly photo on Instagram in the name of cheering up my dying son. Mostly because I don’t want my son to be dying. I would sincerely prefer that not be the case. Again, though, these matters are between Robert Downey Jr. and Dudley. I will stay out of the way.
The Cystic Fibrosis Foundation is an incredible organization, and I would love to work for them in some capacity.
I’m excited for his life. I’m excited to hear what he has to say, once he’s discovered how to talk. I hope his troubles are mostly ordinary ones. School troubles, career troubles, relationship troubles, some minor scrapes with the law.
This sucks. This just sucks.
But it could be worse. There are worse things than a life half-as-long.
I don’t know.
I love you, Dudley.