The Daddy Diary

Life with a medically complex child is almost always more inconvenient than with a healthy child, but there is one exception – triage.

Walking into the ER at Children’s Medical Center with Audrey is like walking into the hottest ultra-douchey nightclub on Opening Night with Kylie Jenner. You bypass the line and go straight in to see the doctor.

We have been there with Audrey (the ER, not the ultra-douchey club) several times when her feeding tube came out. The doctors told us you have about an hour until the hole in her stomach starts to close, and that could mean surgery to reinsert the tube. When you tell the admissions desk her tube is out, you get to walk past a waiting room full of people with various states of medical need. I try not to make eye contact as I walk down the aisle to avoid the imaginary daggers being thrown at me. I don’t judge them because they don’t understand that if they knew the whole story, they would never want to change places with us.

Being a frequent visitor at the Children’s Hospital also makes the check-in process more entertaining when they are training someone new at the registration desk.

Trainee: Can I get the patient’s name and date of birth?

Daddy: Audrey Hunt, 8/27/2019

Trainee: “Has she been here before?”

Daddy: “Do you want to see our Rewards Member punch card? I think we get a free blood transfusion with this visit.”

Trainee: “Can you run down her medical history for me?”

Daddy: “When does your shift end? We are going to be here for a while.”

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Moving sucks. The packing. The lifting. The ensuing lower back pain. The stress. The arguing. 71% of all couples file for divorce the week after completing a move. Okay, I made that stat up, but it feels true. Actually, that number seems too low the more I think about it. But the worst part of moving is the morning after. Everything you own is packed up in boxes, and no matter how organized you are, you still can’t find anything. Even after writing the name of the room on the box and using color-coded tape, you realize that you should have just written “Miscellaneous” on every box.

There are always at least three boxes of your stuff that go missing and never return. The websites that have guidelines and tips on how to move never tell you about the gremlin who comes into your house at night and steals those boxes just to mess with you.

As usual, I was the first one awake in my household, so I did my best to maintain my morning ritual. I sat at the breakfast table stirring my coffee with a flathead screwdriver because I couldn’t find a spoon. And I enjoyed my breakfast of bread because God only knows which box contains the toaster. I read the morning paper on my computer, but I had to place my computer at the other end of the table because I have no idea where I packed my reading glasses.

I served Ella her morning milk in a beer mug because I couldn’t find the box with the cups. And then while submitting my application for the worst parent of the year, I sent my child to school without a jacket on a windy, 54-degree day. I had to make two additional trips to her school that day. One to deliver her backpack and another to deliver her jacket.

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It’s moving day in the Hunt household.  I’m finally making the inevitable trek to the suburbs. In all my previous moves, I looked for locations that were a short driving distance to my office and strategically located close to bars and restaurants.  Now, I look for proximity to good schools and streets that are quiet and look like they would be safe for riding bikes.  And now I give bonus points to any neighborhood where I can see other kids playing outside.  That used to be an automatic scratch.

I’ve moved many times in my life, and only one of them went well.  In the late 90’s, I was moving out of my apartment.  I had everything packed in boxes, and I came home from work one day and everything was gone.  Some scoundrels parked a fake moving van right outside my door and took everything.  My neighbors didn’t say anything because they knew I was moving.  The robbers took everything except for my furniture.  As much as that sucked, it was the best move ever.  I loaded up a couch, loveseat, and bed and moved to my new place. I got a check from the insurance company and bought all new stuff after I moved.

It was the best move ever, but not a method I would recommend.  After the burglary, I had to tell my boss that I couldn’t come to work that day because I didn’t have any clothes.  They could’ve at least left a pair of khakis and a button-down shirt.  Bastards.

In all my previous moves, I searched for locations that would shorten my drive to work and shorten my drive to a network of trendy bars and restaurants.  Now, I look for proximity to good schools and streets that are quiet and look like they would be safe for riding bikes.  And now I give bonus points to any neighborhood where I can see other kids playing outside.  That used to be an automatic scratch.

This move will not go as smoothly.  The last time we moved, Ella was three months old, and her only possessions were baby bottles, onesies, and stuffed animals.  Now, her wardrobe has expanded, and she has enough stuffed animals to start a legitimate stuffed animal zoo. I mean a San Diego-sized zoo that has a gondola system to alleviate foot traffic.  And don’t get me started on how many toys she has. 

You never realize how much crap you accumulate for your kids until you have to move it.  

Moving would be easier if I used this opportunity to purge things I no longer need, but I’m terrible at letting go.  I can’t let go of:

• My favorite pair of jeans from my twenties whose odds of my ever fitting into again are roughly the same odds of Vladmir Putin winning back-to-back Nobel Peace Prizes.
• A shoebox full of cassettes containing the greatest collection of mix tapes assembled during the 1980’s. The kind where half the songs begin with the dang DJ announcing the song over the intro music.
• My Superman lunchbox.  You can ask my sister why I can’t let this go.
• My CD collection.  I don’t own a CD player, but these are coming with me.
• Every piece of artwork that Ella has ever drawn at school.  I can’t even make out half the images, but I had to increase the storage capacity from the small to medium U-haul box because I can’t throw any of them away.

As many times as I’ve moved, I should be better at it.  I start with a plan, and I go in order.  I even use colored tape, so I know which box goes in which room. But there’s always that last box.  No matter how much planning I do, that last box always ends up being a smorgasbord of crap that couldn’t find its way into the appropriate box.  So, they all get thrown together as a collection of misfits so that these are the contents of the last box I packed:

• Three coat hangers (Two wire and one plastic)
• Three unmatched socks
• A Fork that doesn’t match any set of flatware that I have ever owned
• An assortment of extension cords of random lengths and colors
• A laptop that I used in grad school and hasn’t been booted up since Katy Perry kissed a girl
• A belt I haven’t worn since the Bush administration (I’m not even sure which Bush)
• 3 iPods that haven’t been charged since the release of the iPhone
• One red Solo cup

I always get a bittersweet feeling when I move.  The sweet part comes with 1000 extra square feet and the new house had me at walk-in pantry.  And every frustrating moment is trumped by Ella’s smile when she excitedly talks about having her own playroom.  The bitter part comes because I feel like I’m breaking up with someone.  We’ve outgrown this house and we have to move so both girls can be in the same school district. Even when a relationship no longer works or has run its course, you can’t deny the good times. From an architectural standpoint, there is nothing memorable about this house, but it will always be full of memories.

In pictures, this house is just a bunch of wood, bricks, and faux-granite countertops.  But that’s not what I see.

• It’s not a dining room.  It’s a dance floor where a chunky one-year-old danced to Taylor Swift while singing her own gibberish rendition of the lyrics.
• It’s not a windowsill.  It’s the resting place for a bulldog’s enormous melon head as he barked at the top of his lungs every time his dad approached the front door after his morning run.
• It’s not a kitchen sink.  It’s a bathtub for tiny babies.
• It’s not an area rug. It’s an undeveloped piece of land where an entire Lego village is about to be built.
• It’s not a bedroom, it’s a makeshift recovery center with an oxygen machine, rubber gloves, and syringes where a baby recovered from open-heart surgery.

You have to keep moving forward, but La Cabeza drive will always have a special place in my heart.

At 7:15 every morning, one of us grabs the backpack, and the other grabs the cutest three-year-old in the world. It goes without saying that the loser in this daily game gets the backpack. We carry our little child down the mildly sloping pavement that bisects the front yard. As we approach the sidewalk, the doors swing open welcoming us to a special place – the short bus.

I was a little hesitant the first day that we had to put Audrey on the bus because I rode the bus in junior high, and I don’t have many fond memories of those trips. I rode the bus with “normal” students, but my experience wasn’t as pleasant as Audrey’s. My daily entrance on the bus was met with a blast of nicotine and profanity from the bus driver, and most of my rides were spent dodging projectiles thrown at my head and insults thrown at my mother. (Note: None of the kids on that bus actually met my mother, it’s just that “Your Momma” jokes were prevalent in junior high during that era).

I was hesitant to put Audrey on the bus, but not as concerned as Michelle. She followed the bus to school in the van on Audrey’s first day because that’s what Momma Bear does. Our children might lack some things in life, but protection won’t be one of them

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As I sat with Ella at Braum’s last Friday, I looked around the room and realized that we weren’t the only ones there with a Braum’s story.

I see the elderly man who comes in every Friday at 4:45. He sits at the same tall table facing the window and eats dinner by himself. Then, he puts on a Braum’s apron and starts to work stocking shelves in the Fresh Market section. I don’t know his story. It seems sad to me, but that’s not fair to him. Maybe this is his happy place. Maybe he is alone now and Braum’s is all he has. Maybe he just wants to work, and what better to work than an ice cream parlor that makes kids happy?

And then I thought about the other places that house my memories.

I thought about Ferrell’s Ice Cream where we always had our family birthday parties when I was a kid.

I thought about Crystal’s Pizza where we had all our friend’s birthday parties when we were growing up.

I thought about the Spirit Grill, where my buddy Adrian bought me drinks after my dad died. And I remembered how he went running with me in the neighborhood around the bar even though he isn’t a runner. He knew I needed a run.

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When I pick up Ella from school, I walk into her classroom, and I’m typically met with a triple shot of “Daddy! Daddy! Daddy!” as she runs up to me to give me a hug. One Friday last year, I picked up Ella from school, and I could tell right away that something was wrong. Instead of her usual greeting, she slowly walked over to me with her head down the entire time. When we walked out of the room and closed the door, she grabbed my leg and started to cry.

“What’s wrong, Sweetheart?” I asked.

“Nobody wanted to play with me today.” she said.

It felt like a group of four-year-olds all grabbed part of the handle of a dagger and plunged it straight into my heart.  I don’t know what caused the situation. Sometimes kids just act like kids.  Heck, sometimes adults act like this, too. Maybe Ella said something mean to one of the kids. Maybe it was just a misunderstanding. I knew that the next day, it would be another kid’s turn to be ignored. The backstory didn’t matter in the moment because nothing hurts more than seeing my child in pain, even if it’s temporary, emotional pain.

I didn’t have any words to say which was probably a good thing because any words that would’ve come out of my mouth probably would have done more harm than good. I fought the instinct to try to simply fix the situation and explain how this pain was nothing and that she will experience much worse in her life.

Read more: Fridays at Braum’s

“Wait until someone you love breaks your heart.”

“Wait until someone close to you betrays you.”

“Wait until your football team fails to make the NFC championship, much less a Super Bowl, for 27 consecutive seasons.”

“Wait until greedy hedge fund managers decide that instead of selling or restructuring, they can make more money by closing and liquidating your favorite toy store.” (I obviously haven’t gotten over the closure of Toys R Us).

I kept my mouth shut because I’ve learned there’s no value in diminishing someone else’s feelings. All feelings are valid at the age of four., and being ignored by your friends is the worst thing imaginable at her age.

I didn’t know how to make her feel better, but I did know one truth – In some situations, the love of a parent can ease the pain. For everything else, there’s Braum’s.

In a brilliant move of corporate geographic planning, Braum’s placed a location about two hundred yards from Ella’s school. Every parent has to drive right by Braum’s to get to the main road from the school. Since we had to drive right by that magnificent palace of lactose-infused joy, I decided to stop and buy her some ice cream.

So, she and I just sat there and ate ice cream together. We didn’t say anything. Even having a few minutes to process the situation, I still didn’t have any words that would help. Sometimes all you need to wash away the pain is silence with someone who loves you and a scoop of chocolate ice cream in a waffle cone.

I said, “I know you had a bad day, but tell me what was the best part of your day?”

Ella said, “Sitting here with you.”

Daddy holds back tears because he’s in public.

Ella says, “Daddy, can we come back here next Friday?”

And that has become our little tradition. Every Friday, I pick Ella up from school and we have ice cream at Braum’s. It doesn’t matter if she had a good or bad day anymore. Fridays at Braum’s is our thing.

I hope someday she looks back on Fridays at Braum’s with the same fondness that I do. No matter where I am in town, whenever I drive by a Braum’s, I can feel my soul smile. And it has nothing to do with the fact that they always have Peanut Butter chunk ice cream readily available.

I know that as she turns the pages in the story of her life, Daddy will play a lesser role. There will come a day when hanging out with friends and boys will be more fun than having ice cream with Daddy. It’s going to kill me, but it’s okay.

We’ll always have Braum’s.

When you have a child with disabilities, you live your life in two places, Wonderland and Sadland. Wonderland is where I live when I’m with Audrey and she just giggles and laughs all the time.  Sadland is where I think about her disabilities and what could have been.  Sadland is also where the Dallas Cowboys play their playoff games.

After we got Audrey’s diagnosis, I spent most of my time in Sadland.  I kept thinking about how she was going to struggle with everyday activities and remembering Michelle’s first words after the doctors told us she had CHARGE Syndrome, “This isn’t what I wanted for her.”

As I’ve spent more time with Audrey and watched her amaze me with what she has accomplished, the ratio of time spent between Wonderland and Sadland has shifted. I spend the vast majority of my time in Wonderland now, but can’t seem to avoid those occasional trips to Sadland.

Wonderland is great.  When I’m there, Audrey lifts my spirits and warms my heart with simple actions like voluntarily getting down off the couch, grabbing her walker, and taking a few laps around the house. At one point, we weren’t sure if she would ever walk, so seeing her scoot around the house gets me more pumped up than watching the training montage from Rocky IV.

Sometimes it’s simpler than that. Watching Audrey shove forkfuls of scrambled eggs into her mouth until her cheeks puff out makes me smile every time.  Watching her eat brings me back to the vision of a desperate father sitting on a park bench outside of Cook’s Children’s Medical Center waiting on the results of Audrey’s swallow study. Just imagine waiting on the results of a test to see if your child would ever be able to swallow.

I think about how I celebrate the fact that she can walk an entire lap around the Galleria with her walker. That’s Wonderland.  Sadland is where I realize that I will never celebrate her running at a track meet.

Maybe every parent has the same thoughts about their children.  There’s a delicate balance between being completely happy with where they are and wanting more for them.

Whenever I put Audrey down in the middle of the girls’ bedroom, I like to watch and see which toy acts like a magnet and draws her in. I don’t have to watch the scene play out anymore because it’s the same toy every time – the guitar.

It doesn’t matter where the guitar is relative to where I set her down.  She will crawl over every other toy to get to the guitar, pick it up, and place it in her left-hand alignment just like Jimi Hendrix and her much less accomplished southpaw guitar-playing father. Then, she just strums away with a grin on her face.

Why does she love the guitar so much?  We still don’t know what or if she can hear. Does she hear the notes?  Does she just like the feel of the vibration of the strings? Or does she just know how cool she looks holding a guitar?

In Wonderland, I’m just happy seeing the smile on her face and knowing that she is happy in the moment.  Sometimes I look into the future and see Audrey playing in a band. As much as she has blown me away with what she has accomplished so far, I wouldn’t put it past her to be the first CHARGE Syndrome, deaf lead guitar player in a band.

But as I watch her strum the guitar, I find myself getting sad. I think maybe she could’ve been a great musician if she didn’t have her disability. And then, my mind keeps wandering down that path deeper into Sadland as I think about all the possibilities she won’t have because of her condition.

I think every parent wants their child to have a better life than they did.  It’s hard when that dream is taken away on day one.  I shouldn’t think that way because it’s not fair to Audrey.  She still might accomplish more than I ever did.  Heck, you could say she already has in some ways.

If you are ever looking for an exhausting and worthless activity, I highly recommend regretting something that cannot change. Just ask any parent of a child with disabilities. Or ask a Dallas Cowboys fan.

I don’t know why I find myself wandering off into Sadland.  Absolutely nothing positive comes from my trips there.  Fortunately, my visits don’t last very long anymore.  because every time I wander into that dreaded territory, I feel Audrey’s hands grab me and pull me back into Wonderland.  No matter how deeply I venture into Sadland, she always pulls me out.  She may be small, but her grip is unbelievably strong.

Twice last week, Ella asked if I would bring a stuffy (stuffed animal for those who don’t have kids under 6) when I picked her up from school.  Both times I said I would, and both times I forgot.  I seem to strive daily to uphold the time-honored tradition of disappointing your children.  So, today I wrote “Bring stuffy” in my calendar because that was the only way to ensure that I wouldn’t disappoint my daughter..

I used to have a steel trap memory, but I couldn’t tell you what I had for breakfast this morning.  Part of my memory loss is because I’m getting older, and part is because I don’t have to remember anything.  The latter part of that statement is what scares me.  Technology does all the memory work for me.  Neuroplasticity has proven that areas of the brain that get continual use actually grow.  During use, the brain forms synaptic connections that cause that part of the brain to grow.  I’m afraid the memory part of my brain has shrunk like George Costanza’s private parts in a cold swimming pool. 

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My last post got me thinking about New Year’s resolutions. There is something about turning the page on the calendar (for those who still have paper calendars) that makes me feel like I’m turning the page to a new chapter in my life. Every chapter is a story in itself, and I think maybe this chapter will be better than the last. I evaluate all the things I screwed up last year and how I can do better. It’s not original to say the new year gets me motivated. This is why New Year’s resolutions are so popular.  

I’ve read several articles about this topic over the last few weeks, and some “experts” say resolutions are bad because you are setting yourself up for failure.  I’m guessing it has something to do with the psychological effect of not achieving goals. I think part of the problem is that we try to go from zero to sixty, and we fall flat on our faces.  If you haven’t broken a sweat in 17 years, maybe it’s unrealistic to say you are going to run five miles every day as your resolution. Maybe working out three times a week is a better approach.

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“Being there” might be the most generic phrase in the English language.  I think it also might be the most important.

When I was 12 years old, my family had season passes to White Water, the greatest water park in the history of mankind.  Looking back, it probably sucked in terms of overall water park quality, but it was our park because we lived 10 minutes away which made it the best.

During the summers, I would ask my dad to take me just about every day.  So, every day my dad would come home from work, we would slam down a quick dinner and then head to White Water.  Dad always said “yes” when I asked him if we would take me.  He never hesitated.  Not once.  He never said was too busy.  He never said he was too tired. 

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