Surfing

The place we visited in Mexico was this little beachside town Diana suggests we move to every time I have a bad meeting at work. It has everything I need: No movie theatre, no wifi, no Xbox, no comic book stores.

Every morning we would walk down the hill from our rental house and say hi to Bubby, this little mutt who didn’t seem to realize his name was Bubby. We’d then cruise past the dapper Mexican folks and dusty hippies and end up on the beach.

Diana would park on a blanket and entertain the parade of beach salesmen and women with her chipper “No gracias.” The boys and I would head to the water where I would slowly, every so slowly enter the cold water, which feels like needles on my pampered skin. The boys would already be engaged in their favorite game of getting pummeled by waves while was only up to my shins.

Eventually I would reach the boys and we’d watch the surfers while I sucked in my gut. We’d pick out the ones we thought were cutest and then scream, “Wipe out!” when they fell. They hated us.

On the last day, Luca asked if he could rent a boogie board and go surfing. We got one from a stoned surf shop owner who didn’t seem to care if or when we ever brought it back.

Once in the water, Luca got this was a serious, smooshed face mixed with utter joy. He would stand with the board and wait until a wave crashed over him, at which point he would jump on the board and get immediately thrown off.

He did this roughly 34 thousand times.

Since I’ve seen “Point Break” 14 times, I felt like I could instruct Luca how to boogie board. But I decided the best way to teach him was to think the lecture in my head, and then not say anything.

It went like this, in my head I would say, “Okay Luca. Now listen. You want to wait until just the right moment. Not when the wave is too high, but also not when its’ too low. Then wait until the perfectly right moment to jump on. No, you’re doing it wrong. No, wait. Not like that. Come on. You aren’t listening.”

But then out of my mouth I would say, “Yay Luca!”

Suddenly, every star aligned in the universe and Luca caught a wave, riding it all the way to the shore. He screamed and laughed the whole way in. I shrieked with dad-joy. It was the greatest moment in either one of our lives.

Sickness

Thank you, HamannEggs readers, for the outpouring of support for Diana’s eyeballs. She was genuinely touched by your kind words and offers to help. She is flying to New York next week to meet with a PXE expert and then to the Mayo Clinic in March to meet with other smart people. She has a fantastic outlook on her situation and almost never makes me fetch her snacks because “I’m blind.”

Now back to your regularly scheduled documentation of my failures as a parent.

After the diagnosis, we decided it was extra important for Diana’s one good eye to see some beaches, so we took the kids out of school and flew down to Mexico.

In the days leading up to our flight, Elijah was complaining he wasn’t feeling well. Like all terrible parents, we said he was a big fat faker and if he was so sick, maybe he shouldn’t watch screens.

The morning we left, our cab was set to pick us up at 5am. At 4:30am, I busied myself yelling at everyone to get their clothes on and give me your bags because what if we offended the cab driver by being 5 minutes late?

Luca, my anxiety clone, raced around checking and rechecking his bags. I popped my head into Eli’s room and Diana holding his head and looking at a thermometer.

“One oh one,” She said.

“Is that the thermometer we used to check Grover’s temp rectally?”

Eli tried to be a trooper. He put his t-shirt on grasping his bunkbed for support. I asked him if he thought he was okay enough to travel.

“I don’t think so,” he said through scratchy voice.

What to do? This trip was important. Defeatist things like “Maybe the last time she’ll see a beach” went over and over through my head. Then again, taking a sick kid on an airplane felt like a recipe for disaster. It also felt like the beginning of the movie “Outbreak.” I imagined that map of the world going red and Dustin Hoffman saying, “If only they had kept that child home!” through a bio hazard mask.

But whatevs, the beach is fun so we made him go.

Eli rallied and has enjoyed his time here in Mexico. He frolicked in the surf and ate 14 hamburgers and watched countless hours of Youtube on the AirBnB Wifi. His condition only seems to flare up when Diana and I want to eat at restaurants without hamburgers.

Plus, Diana got to see some beaches.

Eyeballs

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In my weepy New Year’s Eve post to Diana, I casually mentioned some vague eyeball woes. There was an immediate outpouring of concern from my (2) loyal readers, wondering just what these woes were. Did she see something horrible, like “Justice League?” Or something kind of disappointing like “The Last Jedi?” Unfortunately, the situation is worse than too much CGI.

When we first started dating 15 years ago, Diana told me she had a disorder called Pseudoxanthoma Elasticum (PXE). I totally ignored it and went back to trying to convince her to marry me, move to Evanston, have two kids, one dog and purchase an ugly Hybrid car.

For those of you reading this on parchment and not near an internet search engine, the National Library of Medicine says “Pseudoxanthoma Elasticum (PXE) is a progressive disorder that is characterized by the accumulation of deposits of calcium and other minerals (mineralization) in elastic fibers. Elastic fibers are a component of connective tissue, which provides strength and flexibility to structures throughout the body.”

For the last decade and a half, PXE caused a few little bumps on Diana’s skin. Diana barely noticed and paid it no mind. Just little bumps. No big deal. This evidently angered PXE, because it decided to escalate to the nuclear option: Diana’s eyes.

PXE attacks the eyes in two ways. First, it causes angiod streaks, which are too complicated for my advertising brain to understand. The results are bleeding and scaring, which leads to blindness. Yes, I wrote the B-word. The only way to treat this is to get repeated injections directly into your eyeballs. Let that sink in a little bit. To keep from going blind, Diana has to get a needle poked directly into her eye. Often. It’s as painful and uncomfortable as you think it is. It totally knocks Diana out for days and leaves big red bloody splotches in her eye.

If you thought that was bad, let me introduce you to atrophy of the eye. PXE can atrophy the retina (or the goop around the retina) and this also causes blindness. Blindness that can’t be prevented by painful shots in the eyeball. This is the bad one. Can’t be stopped. Can’t be slowed down. It’s The Terminator of PXE.

Unfortunately, it’s what got Diana’s left eye. Diana has permanent loss of her central vision in her left eye. The best way I explain it is make a fist in front of your eye. That’s what Diana sees. Nothing in the center, but kinda clear around the outside.

Now, punch that fist into your face and you’ll feel what Diana feels emotionally when the eye doctors say it might happen in her other eye as well.

Diana is taking it far better than any human should. She took one day to cry and drink wine. Now she is fighting back by darkening every PXE experts’ doorstep on planet earth. As of this writing, she is booking a trip to New York to see about some clinical trials.

The boys have taken the news well. It’s hard to understand partial blindness in your mom. I did use it to yell at them a few times when they were being jerks over break. Pulling the “your mom is going blind” card when trying to get them to put on their PJs is dirty, but I am more than willing to do it.

I’ll let you all know how things go. Send any spare good vibes Diana’s way when you get a moment