The Daddy Diary

The Disney Cruise had numerous events that we could’ve booked for the kids and/or adults, but we did not book many. We wanted to keep our schedules as open as possible and let the girls decide what they wanted to do. Disney does everything to perfection, but they do not do it cheaply. I didn’t want to prepay for something and then have Ella tell me that she had no desire to do it. And trust me, Ella is not shy about anything, including telling you she does not want to do something.

One exception to our plan was the Bibbidy Bobbidy Boutique, where the girls got to dress up as a Disney Princess. We knew that both girls would love this. One of Audrey’s favorite things is getting her nails done. When she sees someone bring out nail polish, she will spread both hands out on the table in anticipation of getting pretty nails. And she will sit patiently without moving while her nails are getting pretty. I knew that if she liked getting her nails painted, even when Daddy did it, this would probably blow her mind.

It was quite a process to watch my little girls get their hair, makeup, and nails done. After we entered the salon, the staff member showed us the pricing menu. You could purchase different packages, and with the top package, we could buy a princess dress to complete the experience. I knew going I was going to give my girls the Premium Package, no matter the cost. So, after I saw the pricing sheet, I called a few banks and acquired the necessary financing. All I had to pledge for collateral was my car, my brokerage account, and my left kidney.

Initially, Ella picked out a Rapunzel dress, but the sleeves were too itchy, so she switched to a Jasmine dress. Ella is nothing if not very particular in her preferences. Audrey went with Anna. I don’t think my girls have ever looked cuter. Money well spent. I am glad that we went in the morning because the girls loved walking around the ship for the rest of the day in their princess outfits.

The last day of vacation should be the saddest because it is the day of lasts.

• Last time to play in the kids’ club.
• Last time to see the sunrise and sunset over the water.
• Last time to eat all the ice cream that you can eat.
• Last time to turn down a $52 cocktail.

But I wasn’t sad that day. Partly because we had already talked about going on another cruise, but mostly because I just wanted to enjoy the “last” of everything in case it was our last cruise.

How many times in life do you do something without knowing in that moment that it would be the last time?

• The last time you have dinner with a particular friend.
• The last time you eat at your favorite restaurant.
• The last time you have a drink at your favorite bar.
• The last time you see Luka Doncic play for the Dallas Mavericks (yes, I went there).
• The last time you see your little girls dressed up as princesses on a Disney Cruise.

So, on our last day, in case it was our last day on a Disney Cruise, I took more pictures this day than any other previous day because I didn’t want to forget any detail. I took 92 pictures that day. Here are just a few of my little Princesses on our last day.

This was the day that we could leave the boat for an excursion into Mexico, but there weren’t many activities that would’ve worked well for us. I didn’t think Ella or Audrey would enjoy an 8-hour trek to check out the Mayan ruins. We decided to walk into town so Ella could buy a souvenir, and then we would spend the rest of the day on the boat.

It’s pretty nice if you don’t go on an excursion because the boat is much less crowded.  Micelle and I dropped the girls off at the kid’s club to give us a few hours to have some adult time.  We were worried about Audrey getting to use the kid’s club because they have two requirements that Audrey hasn’t met yet: be potty trained and be independent.  Once again, the service could not have been better.

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I woke up early on the second day, and I knew right away, it was going to be a challenging day.  I went out to our veranda to see the sunrise, and I saw 4-5 foot whitecapped waves as far as I could see.  Michelle and Ella get motion sickness, so patches were installed behind their ears, and Dramamine was administered. 

This is one area (and maybe the only one) where I don’t have to worry about Audrey. When we learned that she didn’t have a vestibular system, the doctors told us that she couldn’t get motion sickness.  I guess it is impossible for the fluid in your semicircular canals to get out of whack when you do not have semicircular canals. 

Every time the boat swayed, Audrey just giggled and laughed. I expected nothing less. She has faced much bigger waves than that in her life, and she has always met them with giggles and laughs. Why would this be different, even if she could get motion sickness?

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Getting onto the boat was quite an adventure. It seemed like we had to navigate an endless maze of roped-off waiting lines, security stops, and escalators before we finally made it onto the boat. We packed Audrey’s walker thinking it would be easier for her because it would be a long walk onto the ship. The problem is that Audrey treats all objects (including humans) as bumper car targets when she is cruising in her walker. After leveling three innocent bystanders, we took the walker away. We will not be packing the walker on our next Disney cruise (which we have already booked, by the way).

Ella could not wait to get on the boat.  As we walked through the boarding maze, she kept asking, “Are we on the boat yet?”  When we finally got to the ramp to the boat, I pointed to the top of the ramp and told her that as soon as she got to the top, she would be on the boat.  She immediately ran to the end of the ramp and jumped up and down.  Few things in life can match the joy of a child.

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It doesn’t matter if it goes well or not, a road trip is always an adventure. Ever since hunter/gatherer civilizations transported their families on foot, the goal for every father leading a road trip has been the same – make good time.  It never mattered where you were going. If you gave yourself 10 hours to make a 50-mile drive, you had to make good time. That is why I get pissed off every time an 18-wheeler cuts me off to pull around a slower vehicle. That move just cost me thirty seconds.

Before the information age, making good time was done mainly by feel, but things are different now. The information age changed everything. Now, Google Maps tells you the exact time that you should arrive after you type in your destination address.  Google might as well add “Double Dog Dare” after it lists your expected arrival time. Challenge accepted. 

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I mentioned in my last post that 95% of the time, I don’t think about Audrey’s disabilities. The 5% hurts. It hurts me more for Ella.

Ella has asked me if she can have a baby brother. I don’t know if she just wants another man in the house or if she wants a “normal” sibling. Ella is starting to understand that she and Audrey will never have a normal relationship. Last week she said, “I wish I could talk to my sister.” Audrey knows a few signs, and Ella is probably the best signer in the family, but I know what Ella meant. She sees how her friends interact with their siblings and wonders why she can’t do the same thing with Audrey. Sometimes you want things to be normal, but normal isn’t in the cards for us.

It’s just a cruelty of life that Ella is the most social kid I have ever met, and she has a sister who cannot communicate with her. Ella frequently walks through the house and asks, “Will someone play with me?” when Audrey is sitting in the next room.

I don’t know how to explain to a seven-year-old that her life will never be normal by society’s definition.

Ella is a great big sister to Audrey. Whenever she meets a stranger, the first thing she always mentions is, “I have a sister, and her name is Audrey.” She is everything you would want a big sister to be – protective, supportive, compassionate, loving, and understanding. I hope that never changes because reality is not lost on me. I had kids later in life, and Audrey will probably need someone to take care of her for most of her adult life after her parents are gone.

Ella is also too young to understand how living with Audrey affects her. Living with adversity makes you stronger. Being Audrey’s Dad has made me a better person. I’ve grown more as a person in the last five years than in the previous 47. Ella started this journey at age 2 and is already a better person than me. I can’t imagine how much better of a person she will be when she is my age.

One time, I asked her what she wanted to be when she grew up. She said, “I want to be an engineer.”

I was a little surprised because she doesn’t have the stereotypical personality of an engineer, but I replied, “That’s great. Why do you want to be an engineer?”

“Because I want to build things to help people like Audrey.”

You probably don’t get an answer like that when you are a member of a normal family.

Last week, Audrey fell and hurt her ankle. Later that day, Ella asked me to come into Audrey’s room. I saw Audrey’s room in a state of cleanliness that I had never seen before. There are usually piles of children’s books and stuffed animals on the floor, but it was immaculate. Ella said, “I cleaned Audrey’s room because she hurt her ankle, and I wanted to make it easier for her to walk so she doesn’t get hurt again. (Note: Ella has never voluntarily cleaned her own room, much less someone else’s). The love she has for her little sister is like nothing I have ever seen.

They do not have a typical sister relationship. They have something more special than typical.

P.S. I have taken thousands of pictures of my children, but this is my favorite. I use it as the wallpaper on my computer. No matter how bad things get at work, I can shut down all my windows and be reminded that nothing can ever minimize the joy these two bring me.

Normal: “conforming to a type, standard, or regular pattern: characterized by that which is considered usual, typical, or routine” – Merriam-Webster’s Dictionary

“Normal is just a setting on the washing machine.” – My cousin Craig

I’ve been asked a few times if I ever wish I had a normal life. The short answer is “No.” For the extended answer, keep reading.

When Michelle and I decided to have a second child, we had Ella as a frame of reference. We thought everything would be the same with Audrey. Normal.

All the books on parenting read like a pseudo-playbook for me. It listed all the things I was supposed to do as a parent and all the things I could expect to happen with my child.

We threw that playbook out before we brought Audrey home from the hospital. And here’s the thing, I hardly ever think about it.

Normal. I don’t even know what that word means anymore. I think my life is normal, it’s just that my definition is different from those who have asked me if I wish I had a normal life.

We have a routine with Audrey that is different from other parents. But then again, our routine with Ella is probably different from other parents.

Everybody has a routine to put their children down for bed. So do we, it just takes us a little longer. There are pills, shots, and getting her back into her torso brace before we put her in her bed. And I don’t even think about it.

I’m still changing diapers even though Audrey is five. And I will probably be changing diapers for several more years. And I don’t even think about it.

When we pack Audrey’s things for school, we have to pack a few more things than we do for Ella. And I don’t even think about it.

When we sit down to dinner we have to fill Audrey’s feeding pump with water to make sure she gets enough fluids for the day. And I don’t even think about it.

I probably have to do several other things for Audrey that are so commonplace for me that I couldn’t even think of them to write them down.

95% of the time, I don’t think about Audrey’s disabilities. Everything we have to do for her is just a part of our normal routine. I just think about how cute and funny she is. We’ll talk about the other 5% next time.

This is all normal to me. And I wouldn’t trade my normal for anyone else’s.

Craig was right. Merriam-Webster’s Dictionary was wrong.

Audrey’s 17th surgery is today. If Michelle hadn’t been writing them down, we wouldn’t have come up with the correct number. We had sixteen in our heads. I guess we forgot one.

In our world, this almost doesn’t count as surgery. Audrey is having tubes put in her ears again, and this is her fifth or sixth time. Once again, we lost count. Calling this surgery feels like calling the Dallas Cowboys a Super Bowl contender.

A business partner needed me to join a meeting this week, and I told him that I was available any day this week. “Isn’t Audrey having a procedure on Tuesday?” he asked.

“Yes, but it isn’t a big deal. Michelle can take her, but if I need to be there, I can take the meeting from the hospital. I’ve done it many times.”

I always surprise people when I tell them I can work from the hospital because surgery isn’t a big deal. They don’t seem to understand that this is just a normal day for us. What used to say “Audrey surgery” on my work calendar, now just says “Tuesday.”

Part of me feels like I’m a bad parent because I’m not really nervous about Audrey going into surgery today. Granted, this is very minor compared to what she has been through, but it’s still my kid going under anesthesia. I know I will feel differently the next time she has heart surgery. That is always a big deal.

So, this is just a normal day for our family. Normal. I’m not sure I know what that word means anymore. I have more thoughts on that topic, but more on that later.

To be continued . . .

Dear Santa,

I do not want any material items for Christmas this year, but I have a few requests. The list is fairly long, but you don’t get anything unless you ask, right? I realize that you are not a genie and many of these are beyond your pay grade, but you seem like a popular guy, so I would appreciate it if you would look through your LinkedIn contacts to find the capable parties and make the following requests for me.

I wish:

That our country can come together and stand as one, united in our firm conviction that the left lane is for passing only.

That Harry Potter and Dr. Oz can work together to come up with a solution so a man in his fifties can have six-pack abs without giving up beer.

That I can make enough money to ensure that Audrey will always be provided for financially after I am gone.

That a brilliant group of scientists will use their collective brainpower to change the molecular structure of Peanut M&Ms allowing them to have the same taste but with the nutritional value of broccoli.

That Ella will never stop amazing me with how smart she is.

That Pluto will be considered a planet again.

That Ella will never get tired of giving me hugs.

That all the women in the world will stand up and proclaim that there is nothing sexier than a middle-aged man chauffeuring two small children around in a minivan.

That a monumental medical breakthrough will finally find a cure for the most damaging physical ailment in human society – male pattern baldness.

That Audrey will never get tired of giving me hugs.

That Ella’s ballet teacher will set this year’s dance recital to Van Halen’s Greatest Hits.

That at least one politician will present a reasonable solution to a problem currently facing our country instead of simply blaming the opposing political party for causing all things evil in the world.

That my dog will not start barking whenever someone walks within 50 yards of our house.

That the Marvel Cinematic Universe will release a movie with the most powerful superhero ever– Meetings Man.  He has the ability to conquer all his enemies and villains by using his superpower of forcing them to sit in a company staff meeting until they lose the will to live and drop dead on the spot.

That Billy Joel will release another album.

That people will get as excited to go to church as they are to a football game. (Who says you can’t tailgate before a church service)?

That my baby girl will be able to say “Daddy” with her voice someday.

Sincerely,

Andy Hunt