The Daddy Diary

“Sometimes the smallest things take up the most room in your heart” – Winnie the Pooh

On Sunday, we had planned on attending church in person for the first time since the pandemic. We even preregistered Ella for child care to make sure that we had a spot. One unfortunate consequence of the pandemic is that any time that you are sick, the rest of society can’t take a chance being within six feet of you because it might be coronavirus.

Well, Sunday morning we were sharing a family allergy attack that looked like we had scrambled eggs and COVID-19 for breakfast. We were sure that the church wouldn’t allow us inside because Ella was coughing up chunks of lung like someone who has been chain smoking since the Eisenhower administration, and my voice sounded like Christian Bales’ Batman doing an impression of Tone Loc.

So we had to watch church online, which meant not having to pack the family truckster and drive to church, and that gave me a little more time with my thoughts. I thought about the video of Audrey that I posted on Facebook last week (shown below).

I wrote “Taking some baby steps, literally and figuratively.” After thinking about it, I was wrong. I could not have been more wrong. People are probably tired of my writing about her two open-heart surgeries, nine other surgeries, and several other times when she has been under anesthesia. As if that wouldn’t make it difficult enough to think that she would ever walk, Audrey has another defect – she is missing part of her vestibular system. Semicircular canals are the fluid filled tubes in your ears that help you keep your balance. She doesn’t have them. It’s not as if hers are malfunctioning, she literally does not have them.

Everything I take for granted (walking, hearing, seeing, eating, breathing through my nose) is a monumental task for her.

I was so wrong. Those weren’t baby steps. Those were giant leaps, and they left permanent footprints on my heart.

There is one advantage to not having semicircular canals. The second video doesn’t do it justice, but when you are missing semicircular canals, you can spin around all day and never get motion sickness. In fact, CHARGE kids typically love spinning around, sometimes as fast as possible. When Audrey is old enough for Disney World, I’m calling dibs on the Mad Hatter Tea Party ride. Even though I will puke every time I ride it, I will ride with her as many times as she wants. If you are in the tea cup next to me, you better wear a pancho.

Our society seems obsessed with achieving success as early as humanly possible. Ella is three years old, and I’m learning that we should have signed her up for an elite sports league about three and a half years ago so she could focus on one sport. Apparently, if she isn’t traveling halfway across the country to play in tournaments by the time she’s 8, her childhood will have been a waste. Looking back, I would’ve chosen tennis, but I’m still not sure how to measure her grip size in utero.

The third place is a concept in community building that defines the third place where you spend your time. Home and work are the first and second places, sometimes not in that order, unfortunately. The third place could be a church, a park, a coffee shop, or a bar. In “Friends,” Central Perk was the third place. In Cheers, it was obviously a bar. I can relate to that. In my twenties, a bar was probably where I spent most of my time in my third place. I don’t do that as much now that I’m older. Those who have seen me shirtless know that the gym is not my third place. A buffet line would be a better guess.

Now things are different. For the last eighteen months, the children’s hospital has been my third place. During our extended stay in the ICU with Audrey, the children’s hospital felt like my second place. I would offer a nod of familiarity to the nurses and doctors just like I would when I entered an office building for work. Our stays in the hospital are not as long anymore, but I am here more than any other third place.

I’ve heard that you should live without any regrets, but I can’t do that.  I’ve done many things that I regret.  I wish I could take back every wardrobe choice I made from 1979-1989.  I wish I hadn’t taken that dare that I couldn’t eat two boxes of Girl Scout Do-Si-Do cookies in under five minutes.  It turns out that I could.  It also turns out that Girl Scout cookies taste much better going down than coming back up.  I regret paying fifteen dollars to see “Dude, Where’s my Car?” in the theater.  That’s fifteen bucks I’ll never get back.  Luckily, it wasn’t in IMAX.  That would’ve cost me $128.  $28 for the ticket and $100 worth of beer to make me forget that I was watching “Dude, Where’s my Car” in IMAX.  Also, I regret every last tequila shot I’ve ever taken.  I’ve never looked back the morning after and said, “I’m really glad I took that last tequila shot.  That was a good idea.”  And maybe it wasn’t a good idea that time in college when I let the really hot Theta that sat behind me borrow my calculator for the Electrical Engineering exam because she forgot hers.  I had to do all the calculations by hand because somehow my 20-year-old brain thought that generous gesture would give me a chance with her.  Shockingly, it didn’t. 

Things I’ve learned during the shelter in place:

1. People who own big, exotic cats are bats–t crazy, and Carol Baskin is guilty of murder.

2. The fact that people are hoarding toilet paper to deal with a respiratory virus makes me think that the vast majority of our country failed human biology in high school. If this were a gastrointestinal virus, I would be judging them a lot less.

3. People seem to like walking their dogs and riding their bikes all of a sudden.

4. It only takes a vigorous seven-mile run everyday to work off the calories of all the beer I’ve been drinking. Note: I’m not doing this for me, I’m just trying to support our local breweries. I’ve got your back, Peticolas and Community Brewery.

5. Virtual happy hours aren’t as much fun as in-person happy hours, but my tabs are much lower.

6. My bulldog must always keep a turd loaded in the chamber because he can fire off a revenge poop within 5 seconds anytime he feels like his authority is threatened. He’s even learned to fire one off whenever Ella gets put in timeout. I appreciate the fact that he wants to protect his sister and I wanted them to bond, but this isn’t what I had in mind.

“If it’s not Scottish, it’s Crap”

– Mike Myers

Many years ago I read a column in the newspaper written by the mother of a special needs child.  At that time, getting married and having a child, much less a special needs child, was the farthest thing from my mind.  Yet, for some reason, that column always stuck with me.

Random thoughts compiled since we brought Audrey home from the hospital:

I can handle anything with a lot of prayer and Velvet Hammer.

I’m tired. All the time.

If I could bottle the energy in my toddler, I could instantly wipe out the entire caffeine industry.

Sleep is something I only dream about (I have to day dream about it because I don’t get to sleep long enough at night to actually have a dream).

After reattaching the net 1483 times, it finally occurred to me that the Little Tyke toy basketball goal is designed for toddlers shooting layups, not Daddy draining 3’s from the dining room.

In sheer defiance of the laws of physics, geometry, and real estate, a 65-lb. bulldog will occupy more space on the bed than two grown adults.

We have three classifications of laundry in our house:

Sometimes it takes two tries to get it right. You might not get exactly what you want the first time, so you give it another go. That’s why there are starter homes, starter marriages, and Weekend at Bernie’s 2. Our first attempt to bring Audrey home lasted two days. Today we are bringing Audrey home again. We are hoping this one lasts a little longer.

Audrey seemed to enjoy her first stay at home. She was very relaxed and slept almost the whole time. We assumed it was because she was finally home and feeling the warmth of being surrounded by a loving family. It was either that or the fact that the doctors missed a decimal point on her take-home dosage and Mommy and Daddy were giving her 10x as much methadone as she should have been taking. (That little error got escalated pretty far up the medical food chain). Now, I’m afraid she won’t like it at home as much because Mommy and Daddy aren’t giving her the good stuff this time.

From Daddy Diary 1: Ella Tales ( from 2017)

I’ve noticed that we have lots of measurements about newborn babies.  We measure birth weight, discharge weight, length, APGAR (just google it if you don’t have children).  By the way, Ella got a solid 8 on the APGAR scale.  It should’ve been a 10, but the Hungarian judge screwed her on her Respiration score.  Also, I’ve noticed that everything about babies has to be measured as a percentile.  We as a society find it very important to compare our babies against every other baby ever born.  I think we use this framework so that parents will have at least one thing to brag about.   If your baby isn’t the biggest or longest or doesn’t have the biggest head, you can say, “My baby is in the 97% percentile for fingernail density.”   

94 days. 95 if you count the night in Presbyterian Hospital where she was born. Just think, we started writing this chapter before football season even started. At times I wasn’t sure if this book was going to be a comedy or tragedy. I’m beyond thankful that we avoided the latter. I’m not sure what genre includes the constant push and pull of hope and pain with a little comic relief thrown in whenever possible. I’ll call it a crymedy (it’s a thing). We are still writing the book, but this chapter is over. Ella and Audrey met each other today, and then we brought Audrey home.

Spoiler alert: In the next chapter we find out if there is a cure/treatment for her deafness and if/when we will be able to remove her feeding tube.