The Daddy Diary

As I stepped into Audrey’s room, one of the doctors asked me to wait outside.  She said that Audrey’s blood pressure was extremely low, and she was worried.  I learned that a positive correlation exists between the number of medical staff in your daughter’s hospital room and your resting heart rate. When I walked into Audrey’s room for the first time, I saw six people in scrubs scurrying around like ants right after somebody stepped on their ant pile.  My resting heart rate immediately shot from 71 to 3312. So, roughly 552 bps (beats per scrub). That is a rough estimate because the heart rate monitor on the Apple Watch Series IV only has three digits and was not designed for parents with children in the cardiac ICU.  Maybe the next series will have four digits. Can someone connected to Tim Cook please share this chapter with him?

I honestly do not remember what happened for the next two hours.  I just sat at the nurse’s station in a daze.  I guess I thought that this whole procedure would be smooth sailing because we caught the defect so early.  My Dad was on a fishing boat in the Gulf of Mexico when Hurricane Camille hit.  He said when they were coming back to shore, the waves crashing over the boat were about twenty feet high.  From what I could tell, that is what smooth sailing looks like in the CICU of a children’s hospital.   

When they finally stabilized Audrey’s blood pressure at an acceptable level, I walked into the room to see my baby.  I immediately noticed an inverse correlation exists between the size of the medical apparatus attached to your child and the size of your world. The bigger the apparatus, the smaller your world. With this particular apparatus, my world was immediately confined to the four walls of this hospital room.  Nothing that happened outside this room really mattered to me except Michelle and Ella, and they were covered by Presbyterian Hospital and Aunt Amy.

After a few hours of emotional decompressing, I checked in with my sister.  I learned that little Ella would not want to come home after being completely spoiled at Camp Evans.  That is what we call my sister’s house when Ella stays over because every day has a new adventure just like summer camp.  Based on the photos my sister sent, I could tell Aunt Amy bought Ella more clothes for her two-week stay than Mommy and Daddy bought for the first two years of her life.

Not only does this apparatus keep my daughter alive before and after her surgery, but we also used it to launch a satellite into space and take atmospheric readings of Mars.  I am sure this setup uses about the same amount of energy as the Clark Griswold Christmas light show in Christmas Vacation. I am just waiting for the insurance company to tell us that the electricity provider is technically out of network, and I am going to have to sell both cars and my left kidney to cover the bill. Luckily, I am already in a hospital so the kidney removal can be done onsite.

Lastly, there is a perfect correlation between the number of wires and tubes hooked up to my baby girl and the number of times I prayed to God that I could trade places with her.

The worst part of parenthood is seeing your child in pain when there is absolutely nothing you can do about it.

The best part about parenthood?  Everything else (except cleaning poop out of their hair).

I never would have imagined when I was reciting my lines using American Sign Language while performing “Children of a Lesser God” in high school that one day I would have to sign to communicate with my daughter. I hadn’t signed since high school, and surprisingly, it doesn’t stay with you. I think I had forgotten every word that I had ever learned. So, I took sign language classes at Audrey’s school last year, but I picked it up quickly.

Our instructor was about my age, and she said she learned sign language because there was a deaf girl in the school where she grew up. She said everyone in her class made fun of the girl, and nobody would talk to her so she had no friends. She sat in class with an interpreter, but none of the other kids tried to communicate with her. My instructor was not okay with that and decided she wanted to be friends with this girl. She started learning sign language by watching the interpreter during class and trying to memorize signs so she could speak with her new friend. One day, she walked up to her deaf classmate and tried to sign to her. The deaf girl laughed a little but appreciated the effort and ended up teaching her new friend sign language. They became friends and eventual roommates, and this wonderful person made her career as an interpreter for the hearing impaired.

She is the best of people.

One of the girls in our class was in fifth grade at the school where our lessons were being taught. She came to the class on her own accord because she had a deaf friend at the school, and she wanted to be able to communicate with her friend. She willingly gave up her Thursday nights to be a better friend to somebody, and her mother attended with her to support her daughter.

They are the best of people.

But when you spend time with the deaf community, you sometimes hear stories about the worst of people, and it goes deeper than the kids who made fun of a deaf girl. We began the first class by going around and introducing ourselves. We simply gave our names and why we were there. When I introduced myself, I said I was there because I wanted to be able to communicate with my daughter.

The instructor said, “It’s so great that you are here.”

I said, “No, it’s not great. I have to be here, and I want to be here. I want to communicate with my little girl. Learning how to communicate with someone is the least you can do to build a relationship. It’s not great. It’s just what you do.”

The instructor said, “You would be surprised how many parents of deaf children never learn sign language.”

I said, “What, seriously? How do they talk to their children”

She said that they don’t. She said they have students at the school who beg to stay at school after classes because they do not want to go home. Their parents won’t talk to them at home, so they would rather stay at school with people who will take the time to at least communicate with them.

I try really hard not to judge or criticize other people, especially other parents, but I’m going to fail on this one.

It’s probably not fair to call those parents “the worst of people.” I don’t have any idea what is going on in their world, and there are people in this world performing atrocities on a much larger scale.

The best of people. The worst of people.

Maybe those parents don’t belong in the second group, but they certainly don’t belong in the first group.

Four years ago, I sat in a pub with a few friends. I reached for my freshly (and perfectly) poured Guinness when Michelle called. I put down my pint of God-given nectar and answered the phone.

“Hey, my water just broke. You need to come home.”

I reached for my wallet to pay for a beer that I would never get to drink when my friends said,

“What the hell are you doing? We’ve got your tab. Go.”

I was so anxious and scared as I drove home because I knew that Audrey had a heart defect and would have to have open heart surgery after she was born. I thought at that time that she would have the surgery and we would head home after a couple of weeks for her to recover. I had no idea what we were in for. What I thought would be merely a lifelong relationship with a cardiologist and some hearing aids turned into fourteen surgeries, endless therapy sessions, and now relationships with an endocrinologist and nephrologist. But I also didn’t know that she would be the happiest little kid to ever grace this planet.

I wrote the following words while we were in the hospital after she was born. I’m reposting them to let her know that this journey was so much harder than I thought it would be at that time.

And I wouldn’t change a word.

Happy Birthday, Baby Girl!

The Winning Ticket

Anytime you buy a lottery ticket, you can see your chances.  When you look at the odds, there is always a “one in” listed before a number that contains the same number of digits as my Body Mass Index after eating nothing but Snickers bars and crappy pizza slices from the hospital cafeteria for three months.  And you think that “one” can be you even after you run the numbers and realize that your odds of winning are roughly the same as being struck by lightning twice during a shark attack while taking a picture of the Loch Ness Monster.

A kid is like a lottery ticket, just a random combination of numbers, and you never know what you are going to get. Everyone who is a parent or is even thinking about being a parent has seen the numbers – 1 in 10,000 chance of this, 1 in 1,000,000 chance of that.  You never think too much about it because the odds are so small.  You figure the “one” is a family in some remote area of a third-world country because you don’t know anyone with this defect or disease.  That “one” never comes up – until it does.  Somebody has to be that one.

And that “one” is not a number.  It is a life.  It is a baby.  It is a person.  It is an entire family dealing with a reality unlike everyone else whose number did not get picked.

For many people, there is a point in their life when they hear that their life is not going to be normal anymore.  It might be the day they hear that their cancer is inoperable.  It might be the day they find out that they have ALS.  For my dad, it was the day he was diagnosed with Parkinson’s.  Some people get this message late in life, some get it early.  My little girl got the message on day twelve.

CHARGE Syndrome, or any birth defect for that matter, is not something any parent would wish for their child.  No parent wants to see their child struggle.  I look at little Audrey and think, “How can something look so perfect on the outside, yet be so damaged on the inside?”  In the children’s hospital, the patients accumulate beads for various events – each night they spend in the hospital, each test they run, each surgery that is done, etc.  Audrey has just about cornered the market on beads.  If these beads were actual currency, I could buy and sell Jeff Bezos ten times over.  She has been to hell and back, and we can’t even define what “normal” means for us yet.

I am guessing no new parent wants or asks for a disabled child.  It’s not the lottery that anybody thinks they would want to win.  We don’t know where this road will lead, but I am happy to drive the whole way.  We know this journey is going to be difficult, but we have no idea how difficult.  I can’t even imagine how hard and stressful this will be or how much we will struggle as a family. 

But no matter what happens, I want Audrey to know just one thing –

I would pick these same six numbers again.

I haven’t posted in quite a while. Let me explain why.

I read the following article, and it punched me right in the chest.

https://www.yahoo.com/lifestyle/first-deaf-bachelor-contestant-abigail-heringer-disability-doesnt-define-her-200047127.html

I’ve never watched The Bachelor, so I was late to the game on this one, but the show had its’ first deaf contestant. The article discusses the fact that people with disabilities don’t want to be defined by their disability.

I have a tendency to define someone by one or two traits. I’m sure people do it to me as well. People have a hard time seeing past my incredible parallel parking skills, but I am more than just a guy with freakish spacial awareness.

An athlete is just someone who plays a sport. A musician is just someone who plays music. A Kardashian is just, well, you know. That’s why someone is okay telling Lebron James to “shut up and dribble.” After all, he is a basketball player and nothing more. He can’t possibly have a valuable opinion on anything other than basketball. I’m guilty of this, too. I’m always surprised when a former football player runs for political office. I assume he can’t do anything useful without a helmet on.

And a person with disabilities is just a person with disabilities. They are just a missing limb. They are just a wheelchair. They are just someone walking slowly in the mall and delaying my quest to double my cholesterol count at Cinnabon. Maybe they are people too. Maybe they have the same thoughts, frustrations, and worries that we all do. Everyone is wired differently, but we are alike in so many ways.

I had to ask myself if my writing was reducing Audrey down to her disabilities.

I write about how amazing she is with her walker or the fact that she is walking without it now. I write about how much joy I feel when I see her eat, hoping that one day we will be able to remove her feeding tube. I write about how amazing it is that a child with four heart defects only has to see the cardiologist once a year because her heart is doing so well. I write about how she still makes vocal noises (no actual words yet) and she probably would’ve stopped doing that by now if she couldn’t hear anything.

It took about a month to give myself a little grace and understanding. Part of the reason I write these stories about her is because I’m just trying to understand her. I’m trying to figure out what it’s like living in her world. What it is like to not be able to hear? What is it like to learn to walk without being able to naturally balance yourself? What is it like to have a feeding tube sewn to your stomach?

Despite those thoughts, the more I get to know her, the less I think about her disabilities. I just think she’s a normal kid. I guess I define “normal” differently than most people, but she’s still just a kid. I rarely think about all the surgeries in her past. I rarely think about her feeding tube (unless it pops out of her stomach, then it’s all I think about). I rarely think about the fact that she may not be able to hear me.

I just think about how her smile can brighten the darkest of rooms. I think about how her laugh can calm any emotional storm that I am experiencing. I think about how she gives hugs with all four of her limbs (if you have been the recipient of one of her hugs, you know what I mean). I think she’s a cute, funny kid who plays with toys and likes to climb on Daddy and loves a good tickle fight.

In so many ways, she is just like her “normal” sister. I try to teach her a sign so she can communicate just like I tried to teach Ella how to say words. Audrey’s first steps without the walker brought me the same amount of joy as Ella’s first steps. And I get frustrated with Audrey’s pickiness as an eater, just like I do with Ella.

People with disabilities have the same needs, wants, desires, and as the rest of us. They just have a tougher path to getting to the same destination.

These thoughts have kept me up at night for several weeks, but they made me realize something – disabilities don’t define you, they just reveal your true character. If you truly want to know someone with disabilities, don’t focus on the scar on their chest, focus on what’s behind it.

Dad would have been 80 years old today. Posting thoughts about Dad is always tough for me, not because I can’t think of any good stories but because I have too many. It’s not the writing that’s hard, it’s the editing.

We had the same problem when Scott, Amy, and I were working on his eulogy. We spent most of our time debating which stories to leave out. We had to leave out a lot of good stories because we only had one hour to fill. We easily could have made that funeral a Jerry Lewis telethon type of two-day event just entertaining people with stories about our Dad.

There was one story that I left out of the service, and I’ve always regretted it, not because it’s better than the stories that we did tell. It’s because when I look back, there are few stories that could encapsulate his character in just a few paragraphs.

Our church used to have an annual clean-up day. The church members would spend an entire Saturday every spring cleaning, painting, and landscaping. Of course, my dad always signed up to help. He usually signed up for the activity that nobody else wanted to do. You just haven’t lived until you’ve seen a 300-pound man climb a tall oak tree with a chainsaw in his hand trimming trees. One of my friends was astonished at Dad’s monkey-like agility and ability to navigate tree branches 30 feet above the ground.

But one year, Dad was out of town on a business trip that week. He made sure to catch a flight on Friday night to be back in time. Because of a series of flight cancellations and delays, he had to spend the night in an airport and didn’t make it home until Saturday morning. I picked Dad up at the airport at 6:30 that Saturday morning. The first thing he said when he got in the car was, “Take me straight to the church.”

I said, “Dad, you stayed up all night at an airport. Everyone will understand if you don’t come.”

He said, “That doesn’t matter. I said I’m going to be there, so I’m going to be there.”

That was my Dad. If he said he was going to do something, he always did it.

I’ve heard all the claims about the deleterious effects social media has on society. It doubles loneliness. It triples depression. I recently read an article in Forbes that claimed that social media has the same effect on our bodies as smoking 15 cigarettes a day. I guess I can blame Facebook for the fact that I’m short of breath all the time.

The U.S. Surgeon General also equated social media use to smoking. He was talking about the addictive nature of both. Okay, he probably has a point there. But hey, if you are going to be addicted to something, might as well make it something good, right? What’s wrong with being addicted to love or hooked on a feeling?

Read more: Smoke ‘Em if You’ve Got ‘Em Read More

Sometimes I feel like my job as a parent is to wrap my girls in my arms and never let go so that nothing bad will ever happen to them. It’s my job to keep them safe and safety is a good thing. Safety keeps you, well, safe. Safety pins keep us from getting poked. Safety glasses keep us from burning our eyes in chemistry class. And who doesn’t love “The Safety Dance” by Men Without Hats?

We’ve had to use many medications, devices, and contraptions to keep Audrey safe. Walking isn’t a safe activity when you don’t have a vestibular system, so she has to use a walker. I love the fact that when I put her in her walker, she takes off like she stole something and giggles and laughs as she runs around the house. I had pretty much accepted the fact that she was going to have to use a walker for the rest of her life, and I had made my peace with that. Apparently, Audrey didn’t get that memo.

Last week, I put her in her walker, and she didn’t take off running. She paused, and I could tell she was thinking about something. Then, she decided to take the road less traveled. The less safe path.

Read More

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.”

Read More

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.