The Daddy Diary
Musings on Babies, Bulldogs, and Beer
Father’s Day
“What do you want to do for Father’s Day?” Michelle asked.
“Nothing,” I replied
This is my sixth year as a Father, but I don’t see Father’s Day as a day for me. It still feels like it’s supposed to be a day for my dad, and I haven’t been able to spend it with him for the last eight years.
I remember spending the week before his funeral at my parents’ house with Amy and Scott. Mom asked all three of us to speak at his funeral, and we spent many hours that week remembering and telling stories about our Dad. The hardest part about speaking at his funeral was knowing that we would have to leave out some of the best stories. If we took the time to tell all the great stories about him, we would still be talking. The man gave us endless material.
I didn’t share the following story that day, and I’ve always regretted it because it reveals so much about his character.
My dad was committed. When he invested in something, it was all or nothing. Our family and our church were his two biggest commitments. Every spring our church would have Service Day where the congregation would gather on a Saturday morning and spend all day doing various projects – repairs, landscaping, painting, or whatever was needed to preserve and beautify the campus.
It was the one day every year when the rest of the world got to experience my dad’s daredevil acts. He would always volunteer for the job that everyone else was too scared to do. One year, after I had finished a project, I walked around the corner to see a group of people standing in a semicircle with their gazes fixed to the sky. I looked up to match their gazes and saw my three-hundred-pound father thirty feet up in a tree trimming branches with a chainsaw.
As I approached the group, my friend Jeff saw me and said, “That was awesome. I don’t think a monkey could’ve climbed that tree any faster.” To them, they were witnessing something amazing. To me, I was just experiencing a typical Saturday with my Dad.
One year, Dad was flying back from a business trip on the day before Service Day. Due to a series of flight delays and cancellations, my Dad had to spend the night in an airport. His flight didn’t land until 6:00 am on Service Day. I picked him up at the airport that morning, and he said, “I didn’t get to eat breakfast, and I’m starving. Do you want to get something to eat?”
So, Dad and I went to Joe’s Coffee Shop where he ordered his standard steak and eggs. As we got in the car to go home, Dad said, “Let’s go straight to the church.”
“Dad, you just pulled an all-nighter in an airport. Everyone will understand if you don’t make it today.”
“That doesn’t matter,” he replied. “I said I was going to be there, and I’m going to be there.”
And that was my dad. He worked the entire day at the church with no sleep because he said he would be there.
I cannot think of a single instance in his life when he didn’t keep his word, even when it would’ve made sense not to.
Happy Father’s Day, Dad.
Brace Yourself
Frequently my mind goes back to the first few months we spent in hospital after Audrey was born. After each new diagnosis, I prayed, “Please let this be all for her.” Each time I prayed, I never got the answer that I wanted.
And I still don’t.
In addition to all her other issues, we recently learned that Audrey has a curvature of her spine, or two curvatures to be precise. This little girl doesn’t do anything halfway. The curvatures are bad enough that she has to wear a torso brace. If we are lucky, she will only have to wear it for about 10 years. It beats having to wear it for the rest of her life or have surgery, so I will take the ten years if we can get it. The only way I can deal with having a child with multiple disabilities is to take small victories when you can get them.
When I first saw the brace, my heart sank thinking that she would have to wear this thing twenty-one hours a day for at least ten years. It looks like the exoskeleton of a crustacean, but my little lobster wears it well. She can make anything look cute. I thought about how awful it would be to put on this hard plastic shell every day and go about your business like nothing was wrong, but that is exactly what Audrey did. When we first wedged her little body into this contraption, she just shrugged it off and started walking around like nothing happened. And she has acted that way every day since she started wearing it. She never complains or even acts like she notices that she is wearing it.
She has to wear a special shirt underneath the brace to keep her skin from chafing, so we bought a dozen little wife beaters to wear under the brace. Even a grey wife beater looks cute on her. Did I mention that she can make anything look cute? She hasn’t complained yet, but let’s see how she does during the summer when she has to wear a wife beater, a brace, and a t-shirt while she enjoys a nice, Texas summer which is similar to living for three months on the surface of the sun. I’m starting to sweat just thinking about it.
It felt like an engineering marvel to get this thing on her. They had to measure and cut, measure and trim, and repeat the process for half an hour to get the fit right. Then, they had to cut out a hole for the feeding tube so that we could access it without having to remove the brace.
I’m assuming (and hoping and praying) that the brace will work. Heck, knowing this little girl, if the brace doesn’t work she will just use her bionic powers to straighten the curvature herself. I’m not going to put anything past her. So, the worst part of her having to wear the brace is that I can’t tickle her ribs anymore during our tickle fights. A good rib tickle is the easiest way to bring about her belly laugh which will brighten even the darkest of moods. I live for those three hours a day when she doesn’t have to wear the brace so I can get in a day’s worth of rib tickles.
Despite my optimism, I’m asking again, “Please let this be all for her.”
I Saw the Sign
When I was single, my three biggest fears were:
- Driving a minivan
- Living in the suburbs
- Small children
I thought having any one of those would take away my soul. Now, I routinely drive a minivan through the suburbs chauffeuring around two small children. Instead of driving to meet friends at the local bar or restaurant, I now find myself driving to Kid’s Empire, KidMania, or Pinkberry. I remember dreading the day when I was going to have to tell my guy friends that we bought a minivan. Well, most of my guy friends are dads now, so when I told them about our new Chrysler Pacifica, they all said, “That’s a good idea. You are going to love it.” Boy, times have changed.
One year ago, we made the inevitable parental move to the suburbs. We were living in North Dallas at the time. It felt like the burbs, but I proudly told everyone that I still lived within the city limits of Dallas. It was the perfect situation for me because I could still be a dad and still think I was cool at the same time.
Having a deaf child changed all that. When we realized that Audrey would be in special education, I started asking my friends who worked in education for recommendations. My buddy Mike, a special ed teacher, said, “Go to Plano. They take special ed to another level.”
Then, one day the internet was out at our house, so I headed to a local bar to work. I had to find a location with free wifi. I could’ve gone to the library, but they don’t serve beer. Since it was early afternoon on a Tuesday, I was the only one sitting at the bar. So when a friend called, I picked up the phone and took the call since I didn’t have to worry about annoying any other patrons. My friend said he had heard about Audrey’s situation and asked about her condition. I spent the next several minutes explaining Audrey’s diagnosis. A few minutes later, the bar manager, Sarah, came over and said, “I didn’t mean to eavesdrop, but did I hear you say CHARGE Syndrome?”
I told her about Audrey, and she mentioned that she was a speech pathologist who had worked in deaf education for over twenty years. She said that she worked with a few kids who had CHARGE. Over the next several months, I occasionally stopped by the bar, and every time Sarah asked about Audrey. I always had a story and a video or two to share.
Then one time, she asked, “Where do you live?”
I replied, “Just a couple of miles west of here.”
She said, “Get to Plano. They have everything you will ever need for your daughter.”
So we did.
We thought it would be the best thing for both of our girls. Plano is a great school district, so we knew the move would be good for Ella as well. It was bittersweet leaving our old neighborhood. We loved it there, but I would move to Novosibirsk, Siberia if it was the best place for my children. Luckily, Plano has a better special education program than Novosibirsk.
Even though it felt like the right thing to do, sometimes it helps to get a sign that you’ve made the right decision.
On the first day of school, I carried little Audrey into her classroom, and who was the first person I saw? Sarah.
She smiled and said, “I’m back in the classroom this year, and I was so excited to see that Audrey was going to be in my class.”
I didn’t have to look too hard to see that sign.
Take My Advice
If I could give advice to anyone on how to get ahead in life it would be “Be Cute.” You can get away with anything if you are cute enough. I’m speaking from observation here, not experience.
Nobody used to tell me Gus was cute when they saw him.
But when Gus was a puppy, his cuteness was not a matter of opinion. You couldn’t help but gush over Gus.
When you look like that, you can get away with anything. When Gus was a puppy, there were countless incidents where he chewed or peed on something. Sometimes he would chew something and then pee on it. Sometimes he would pee on something and then chew it. Each time I wanted to strangle him, but how can you strangle that face? Maybe God made puppies cute so we wouldn’t kill them.
Most animals are cut when they are little. Heck, even chickens are cute when they are babies. We love small things. The smaller, the cuter. Maybe not down to the cellular level, but you know what I mean.
Audrey is so cute she could get away with murder. I hope I never have to find out if that statement is literally true, so for now, we’ll assume figurative murder. Last weekend, I did the girls’ laundry and placed all their clothes in nice, neat stacks on the couch. I had previously watched a YouTube video on methods for folding children’s clothing because watching videos about folding laundry is the kind of thing I do in my free time now. Those symmetrical stacks were my first attempt at my new method, and I was quite impressed with my newfound skills. Then, Audrey walked by and knocked over each stack, giggling louder with the toppling of each successive stack.
I told her “No” in sign language, but I just could not get mad, much less stay mad, at that precious little face.
We frequently take Audrey to the mall on Saturday mornings to walk. It’s good exercise for her to get better at walking and the long walkways allow Audrey to get her steps in without having to do 1437 laps around our house.
Everyone at the mall loves her. We see the same faithful group of mall walkers every week, and they all gush over Audrey. They comment on how fast she is going and how big she is getting. And when she is hugging the wall during a counterclockwise lap, nobody in the oncoming traffic complains. They just smile and move a few steps to their left to let her by.
But I can’t help but wonder, would they feel the same way if she was an adult? There’s nothing cuter than watching my tiny toddler scoot around the mall with her walker. But nobody says that when it’s an adult with disabilities trying to navigate a crowd with their walker or wheelchair. It’s not “How cute” it’s “How annoying.” It’s not, “She’s so impressive” It’s “She’s getting in my way. She’s slowing my sprint to Cinnabon.”
And then I imagine Audrey trying to get on a bus or airplane when she’s an adult. It’s going to take her a while, and she might still have her walker. I can envision the scorn and ridicule of other passengers as the bus or plane delays its boarding process while Audrey finds a place to store her walker. Our fast-paced society was not designed for someone with disabilities.
I know I’m overgeneralizing here. Not everybody says those things or thinks that way. I know that some people do because I was one of those people. I’ve been so absorbed in my world that I just saw other people as an inconvenience. But not anymore. I have Audrey to thank for that.
People with disabilities have a tough hill to climb, and the climb gets steeper when they aren’t cute anymore.
Shots Anyone?
Sometimes you have to do something that makes a child cry even though it is good for them. That’s why I make Ella watch Dallas Cowboys’ playoff games with me. I’m getting her used to disappointment at an early age so it won’t hurt as much when she’s older. She will thank me someday.
The same principle applies when I give Audrey shots. It makes her cry, but I do it because it’s good for her. Maybe someday when she’s old enough, I’ll be on vacation with Audrey and I’ll buy her a shot of tequila. For now, the only shot I give her is by jamming a needle in her leg.
When Audrey came home from the hospital for the first time, she had to be put on a blood thinner. Every day for several months we had to squeeze her little thigh and inject Lovenox into her leg. It broke my heart the first time I gave her the shot. As soon as the needle went in, her lower lip swelled up and she started crying. I don’t know which hurt more, the first time I gave her the shot and she cried or the first time I gave her the shot and she didn’t cry. I couldn’t imagine what it must be like to be four months old and so used to being stuck with a needle that you don’t cry anymore.
Audrey is itty bitty, and unless you knew her story, you would never guess that she is four years old. Many kids with CHARGE Syndrome have this problem, so we knew that someday we would probably have to give her growth hormones. I just didn’t know that I would be the one doing the injections.
So, Michelle and I went to the pharmacist to get trained on how to give growth hormone shots. During the training, Michelle asked the pharmacist if we needed to apply a Band-Aid after the injection. The pharmacist said, “Oh, no. You won’t need to do that.”
She was wrong.
The first night, Audrey flinched during the injection, and of course, we drew blood. And, of course, Audrey cried during the injection. We have to hold the needle in her leg for ten seconds to complete the injection. Trust me, ten seconds is an eternity when your child is crying.
The second night, Audrey didn’t even flinch or cry during the injection. I, of course, did both.
After a few weeks of shots, she doesn’t always cry, but I know she doesn’t like the shot. As soon as I grab the alcohol swab, she starts covering her legs because she knows the shot is coming. Some nights when I am trying to hold her hands back to free a spot on her leg, I say to myself, “Maybe I can skip tonight. Surely missing one night won’t hurt her.” Then I suck it up, restrain her arms, and give her the shot.
While seeing her in pain is the worst part, it doesn’t help that we don’t know if these hormone injections are going to work. I hope I don’t have to explain to Audrey someday why we gave her shots every night and they didn’t work. I just hope she understands that I’m trying to do everything I can to give her the best life possible.
Even in this case with medical expertise on our side, I feel like parenting is one big crapshoot or an endless exercise in trial and error. Whether the issue is medical, emotional, or developmental, you just never know. What works for one kid doesn’t work for another. What worked today won’t work tomorrow. I’ve read at least half a dozen books on parenting, and I’ve found them to be about 20-30% effective. I just hope I figure out the other 70-80% without totally screwing up my children.
If the hormone therapy doesn’t work, she will just be a tiny person. The upside of that is she will always be ridiculously cute which has many advantages, but that is the topic for another blog post.
Part of Your World
One of the great things about being a girl dad is I’ve had the pleasure of watching The Little Mermaid 1438 times since Ella was born. And for each 24-hour period following each viewing, I’ve been asked to say “Alexa, play Under the Sea” so many times that Alexa eventually says, “Again? Don’t you want to listen to something else?” Or maybe it was Michelle saying that.
Sometimes song lyrics get stuck in my head and I have no control over the song. On a good day, it’s “Free Fallin'” by Tom Petty. On a bad day, it’s “Achy Breaky Heart.” On the worst of days, it’s “Macarena.” But one set of lyrics runs through my head almost every day –
“Up where they walk, up where they run
Up where they stay all day in the sun
Wanderin’ free
Wish I could be part of that world”
I can’t get those lyrics out of my head for two reasons: 1. It’s such a catchy tune, and 2. I know how Ariel feels. She just wanted to be in a world different from her own. I want to be a part of a different world, too.
I want to be a part of Audrey’s world, but I always feel like I’m not. I never can tell what is going on inside her little head. What is the world like when you can’t hear anything or tell anyone how you are feeling?
When I see a video like this, I wonder what is going through her head when she plays the piano. Does she actually hear the notes or is there something else going on inside her head? Can she feel any vibrations or is it just fun to bang on the keys?
She has blown me away with all her accomplishments so far that when she sits down at the piano, I fully expect her to just break into “Great Balls of Fire.”
She is still the happiest little kid I’ve ever seen. She will sit at the table during dinner and suddenly crack herself up. She will grab her walker and start doing laps around the house giggling the entire time. I really want to ask her why she’s so happy. It warms my heart when she giggles and laughs all day, but I wonder if she knows something that I don’t. It pains me that I don’t know and that she can’t tell me.
I always hated seeing my children cry, although when they were babies, it was a standard process to fix the problem. You change their diaper, check their temperature, and then check and see how long it has been since they ate. Then, it’s a simple fix because when a baby cries, it’s almost always because they have a wet diaper, they are sick, or they are hungry.
The pain of watching her cry punches me harder in the chest now that she isn’t a baby anymore. Audrey is four years old now. When she cries, sometimes I have no idea why. Maybe she’s frustrated because a toy is broken. Maybe she’s just lonely because nobody is playing with her. Maybe she’s trying to watch a video during peak hours, and due to the slow wifi all she sees on the screen is “buffering.” That makes me cry, too.
I would love for Audrey to be a part of my world, but that just isn’t in the biological cards, so I’m going to do whatever I can to be a part of hers.
Dear Dad
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.
I wish you could’ve been here this year. There’s so much you would’ve loved to see. The Texas Rangers won the World Series. Seriously. I wish I could’ve watched it with you. I can’t count the number of games you took me to at the old Arlington Stadium. We watched a lot of bad baseball together, but the quality of baseball never mattered to me. I know it never mattered to you, either. But still, it would’ve been nice to watch this quality of baseball together at least once.
I still have a hard time accepting the fact that you never met my girls, and it’s even harder because I know how proud you would be of them. Ella started kindergarten this year, and she absolutely loves it. While we all know that she didn’t get her love of school from you, she did get your social skills. On her first day riding the bus, Ella didn’t choose one of the dozen empty rows to sit in. Instead, she chose an empty seat right next to a girl on the second row, sat down, introduced herself, and asked what grade the girl was in. There is only one person in our family who would strike up a conversation with a complete stranger. Thank you for giving her that gift.
And what can I say about Audrey? I know you would’ve bonded with her because you were both dealt a bad hand in life. Nobody deserves to lose their dad when they are two years old like you did, and nobody deserves the disabilities that Audrey was given. But both of you fought through it like warriors. And just like you, she does most of her fighting with laughter and giggles.
The list of Audrey’s accomplishments is so lengthy it would blow your mind. She took her first full lap around the mall without using her walker. An entire lap. Almost half a mile. I know that you would’ve wanted to be there to cheer her on when she came around the corner to complete that lap.
As hard as it was to experience all those things without you, those weren’t the worst days. The worst days were the ones that I forgot to think about you. I know I’m supposed to say “Not a day goes by that I don’t think about you” but it’s not true. Some days go by and I don’t think about you. It’s not because I’m avoiding the memories because they are too painful. The pain just reminds me how great I had it when you were here. If things hadn’t been that great, the memories wouldn’t be painful at all. And that would hurt so much more.
The truth is that sometimes I get so busy and preoccupied that I look up and realize that I didn’t think about you all the previous day. It’s not your fault. You did more than enough to make me remember you. It’s my fault. I get so caught up in things that don’t really matter, that I lose focus of the things that really do matter.
I never wait until New Year’s Day to begin a new resolution, so starting today I’m going to take some time each day and think about you. You deserve at least that much. And it really isn’t hard. All I have to do is look at my girls because there is so much of you in them.
This Too Shall Pass
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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I’ve always loved this time of year. It’s football season, The State Fair of Texas is just around the corner, and it finally feels like I’m walking on a habitable planet instead of the surface of the sun. And now I have another reason to love this time of year – Facebook memories.
Whenever this time of year rolls around, Facebook reminds me about things that previously happened in early September. Audrey was born on August 27th, so most of my memories bring me back to 2019 when we were in the hospital after she was born.
Things are going so well for Audrey that I sometimes forget how bad things were after she was born. Last week I came across this video of Tom Hanks last week on the same day I received one of my Facebook memories.
Very timely because this is the memory that Facebook sent me.
And here we are today.
Tom was right. It passed. And there were many times that I thought it wouldn’t. There were days that I couldn’t see the light at the end of the tunnel because I couldn’t even find the entrance to the tunnel. But she did make. It turns out that there was a light. Even after we got out of the hospital, life hasn’t always been easy with Audrey, but my life has been infinitely better with her. Audrey has taught me that an easy life isn’t necessarily a fulfilling one.
So I’m done asking God for an easy life. I’ll ask him for challenges and thank him for the gift of time.
“Time is your ally. Just hang on.”
That’s two life lessons in one post. No extra charge.
Happy Birthday, Ella
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!
The Correlations
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).
The Daddy Diary 