The Daddy Diary

Dear Dad,

It was seven years ago today that you went to heaven. Sometimes it seems like forever ago, and sometimes it seems like yesterday. I will never forget that Thanksgiving day when Amy called me and said I needed to come to the hospital because we had to meet with hospice. Everyone knows what the word means. I couldn’t believe it was really happening, and part of me still can’t believe it seven years later. Thanksgiving is always a little tough because you aren’t here.

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I wrote this a couple of months ago, but I never posted it because I didn’t think it was good enough. It was just okay, but I wanted it to be perfect. I spent days trying to make it better, but I just couldn’t do it, so I just gave up. Last week, I finished reading “Hidden Potential” by Adam Grant, and he wrote that your goal should be excellence, not perfection. It reminded me of a quote by Voltaire – “Perfect is the enemy of the good.”

If “good” is the best you can do, then that is good enough. Even the best hitters don’t hit a home run every time they step up to the plate.

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Six years ago today, you made me a daddy. Anyone who says there is no such thing as love at first sight wasn’t there when you were born. My heart melted the first time I saw your face. You had me at hello. And even though I watched you change colors 16 times in the first two minutes of your life, I thought you were the most beautiful thing I had ever seen.

You started a new chapter in my life that was infinitely more enjoyable than the previous chapters. I haven’t experienced a dull moment in the past six years. You’re the one who stumps me with questions like, “Daddy, how do you eat ice cream if you don’t have a tongue?” and “Daddy, do mosquitos like music?

You keep me on my toes with questions like, “Daddy, can you drive faster so I don’t poop my panties?”

You show you are concerned about social etiquette when you ask, “Daddy, do you have to say excuse me if you toot in the bathroom?”

Your scientific curiosity never ends when you ask, “Daddy is there gravity in water?”

“Yes, sweetheart, there is gravity in water.”

“Then how do ducks float? you ask your daddy who was not prepared to explain buoyancy and displacement to a five-year-old.

You take songs that are a staple of childhood and make them more interesting with your version. Take, for example, “Head, Shoulders, Knees, and Toes. And Vagina.” I have no idea where you came up with that addition to that children’s classic, and I’m never going to ask.

Your steel trap memory keeps me honest. “Daddy, you promised last night that if I went to bed on time I could have chocolate cake for breakfast.” Yep, I did promise. And you had chocolate cake for breakfast.

You make me proud when I hear that a boy in your class got in trouble for talking in the lunch line, and you went up to your teacher later and said, “Mrs. Kloub, I was the one who was talking. I’m the one who should be in trouble.” Your honesty won’t help your poker game, but at least I know you’ll never be a politician.

I would totally understand if you harbored some resentment toward Audrey because she will always get more attention than you, but you do the exact opposite. Nobody shows Audrey more love than her big sister. You are the proudest big sister and love introducing everyone to Audrey, even when that person is a stranger at the mall walking in the opposite direction.

You are only six, but you have never met a stranger. You will walk up to anyone, introduce yourself, and start a conversation. It doesn’t even matter when that someone is the school Principal at the school picnic when he is talking on his cell phone. We will work on the social awareness skills later, but for now, I applaud your bold spirit.

And I have to thank you because I never wrote anything meaningful until I met you, and you give me so much great material that I don’t think I’m ever going to stop writing.

Happy Birthday, Ella!

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.

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