The Daddy Diary

“Sometimes the smallest things take up the most room in your heart” – Winnie the Pooh

I’ve taken a lot of tests in my life. Sometimes I had to pass to get into graduate school or to keep my job. That’s a lot of pressure. Failure is never an option. Except on the COVID test. I gladly fail that one every time. No matter how much I study and how prepared I am, I always get unreasonably nervous before an exam.

Two nights ago, I sat at the kitchen table and watched Audrey pick up a Ritz cracker with peanut butter and take a bite. I got a little teary because my mind rewound to a memory about the time I was the most nervous (heck, downright scared) before an exam.

A little over a year ago we drove to Cook’s Children’s in Fort Worth so the doctors could give Audrey a swallow test. When Audrey was six weeks old, the doctors sewed a feeding tube to her stomach so we could feed her. A lot of kids with CHARGE Syndrome are tube-fed, some of them for their entire lives. The results of the test would show us if she was able to swallow. If you think you’ve ever had a lot riding on an exam, give that one a try. One test to show if you would ever be able to eat by mouth. Only one parent was allowed inside the hospital due to COVID, so I sat outside on a park bench by myself during the test. I brought a book and my phone, but I couldn’t focus or concentrate on anything but that exam.

A little trip to Scottish Rite hospital last week completed our tour of North Texas Children’s Hospitals. Nothing major this time, but more on that in a later post. Shortly after Audrey was born and learning about her condition, I was hoping we could get a hospital punch card and rack up some points. I wasn’t asking for much. Maybe just a free MRI with every 10 visits. I’ve since learned that there is no frequent flyer program among the area children’s hospitals. Such a shame. Audrey would have hit Super Executive Platinum Chairman status by the end of 2019.

Our most recent trip reminded me of something I realized when we were in the hospital with Audrey. There are some locations that just feel magical – Disneyworld, Radio City Music Hall, a church sanctuary during Advent, and any participating McDonald’s after the McRib has been reintroduced.

For me, the most magical place of all is inside a children’s hospital. I hope your only experience with a children’s hospital is reading this blog or volunteering. It’s a place you don’t want to be because your child is sick. I know that my opinion is guided by the fact that my baby survived, and we got to bring her home. I saw families that were not so lucky. They probably hold a different view of childrens’ hospitals, and I don’t blame them.

It’s hard for an outsider to understand. After all, it is a building full of sick children, which feels a little bit like hell. But children’s hospitals are equal parts heaven and hell on earth. The buildings themselves are designed and decorated to put smiles on faces that have very few reasons to smile.  The elevators are not labeled “A,B, or C”, rather,  they have names like “Butterfly elevator” or “Airplane elevator.”  It just takes a little edge off the pain when the attendant at the admission desk says, “Take the butterfly elevator to radiology” instead of saying, “Take elevator B to radiology.”

We spent over three months at Children’s Medical  Center of Dallas after Audrey was born and I found what little peace I could muster in two places, the chapel, and the electric train display. I would sit by myself and stare at the trains with a childlike grin sweeping over my face. The trains didn’t change the status of my daughter’s health, but I appreciated the intentional attempt the hospital was making to bring joy to struggling families.

The chapel is still there, but the trains are gone. They removed the display to build the only thing that could make children smile more than 5500 square feet of electric trains – a Starbucks. I heard that the administration decided to relocate the display because the staff and patients revolted when the news broke that they were removing it. I’m not sure what the official economic system is in heaven, but I’m not so sure that it’s capitalism. I’ll try to answer that question in a future blog post. My guess is that the person who made the decision to remove the trains only worked in the hospital, they were never a guest.  If they had been there with their child, they would have understood that you can’t measure the impact of joy on a spreadsheet. But I digress.

As magical as the building is, it can’t hold a candle to the people who work in the hospital.  This is a group of people who walk straight into hell every day bringing hope and putting smiles on the faces of sick children, some of whom will not see their next birthday. Is there a harder job than that? Imagine what it would be like knowing that every day you go to work, you might see a child die.  I don’t have expertise in many areas, but being a guest in a children’s hospital is one of them.  I can honestly say I do not remember meeting anyone who worked in the hospital that was not a genuinely nice person.  Now, I know that this is not a universally correct statement.  In modern society, there is at least one a—hole for every setting and occasion, but I never met that person during our many trips.

The nurses work 12-hour shifts and they cannot relax or mail it in while they are working. If they did, their patient would probably die. That stresses me out just thinking about it. Despite that pressure, every nurse that worked with us was nothing but kind and cheerful. Maybe people that dedicate their lives to working with children just have a bigger heart.  I don’t know, but I do know that even the person who served me Thanksgiving dinner from the cafeteria did it with a friendly greeting and a smile even though she had to work on Thanksgiving Day.

I do not know what is worse for the doctors and nurses – dealing with their patients’ physical pain or the family’s emotional pain.  I know how awful it is to see your child in intense pain, but I can’t imagine going through that and then hearing that I would never get to take my baby home. Every time the hospital admin comes to you and says, “The doctor would like to meet with you in a consultation room” your heart sinks. The surgeons have to have those conversations every day.

Some of the people working in the hospital don’t make a lot of money, but they are storing up treasures in heaven. During this holiday season, if you run into someone who works at a children’s hospital, thank them and give them the gift that represents the true meaning of Christmas – Bitcoin.

Last week, I had one of the best days that I can remember. It had nothing to do with Thanksgiving or the holidays which might leave you wondering what happened to make that day so great. Even if you aren’t wondering, you are about to find out.

I went to the grocery store, and I raked the leaves.

I’m one of those weird people that enjoy going to the grocery store. I sometimes get jealous of my Instacart shopper when I’m too busy to get to the store and have to use their service. I wish I was the one squeezing the mangos, examing the bell peppers, and standing at the butcher counter like a kid peering through the glass at the ice cream shop. Even though I enjoy it, there is no activity more ordinary than going to the grocery store. I do it every week, but my enjoyment got kicked up into the stratosphere when Ella said that she wanted to go with me.

She had been to the store before, but she was too young to participate or even remember her experience. She didn’t want to ride in the cart, and she asked (Well, she’s a toddler, she demanded) that she push the cart. When she started picking things off the shelves herself, I began to think that my services might not be needed on this trip. She must have gotten my grocery-loving gene because she was asking questions about what was on each aisle, what we were going to get next, and of course, how many boxes of cookies we were going to buy. I could see the joy in her face as she would pick something off the shelf and put it in the cart. Despite her enthusiasm, her skills of edible discernment need a little work. She picked an avocado that was so mushy, it practically oozed through my fingers when I placed it in the bag. She will learn.

Also, I told her that she could pick out one box of cookies. She chose the box of vegan oatmeal raisin cookies. They were stacked between some non-vegan, or legitimate, chocolate chip cookies and snickerdoodles, but she still chose the vegan cookies. Rookie mistake. Not in this house little girl. If that’s your choice when you live on your own, that’s fine, but in this house, we eat cookies with all the milk and butter and any other animal products you can throw in the dough. So, I asked her to reconsider her choice, and like a typical toddler, she dug in on her first choice. So, we went home with vegan cookies.

I saw tons of potential in her grocery ability. She’s raw now, but with my guidance, she might be one of the greats when it’s all said and done.

As much as I enjoy grocery shopping, I’ve never had more fun in a grocery store than I had that day.

My love of grocery shopping is matched by my hatred of raking leaves. My hatred stems from the fact that the house I grew up in had a .22 acre lot and just north of 9,000 trees. Scott and I spent more time raking leaves than sleeping during the winters when we were kids. One year after Scott had gone off to college, my dad paid my friend Mark Gribble and me 25 cents for every bag of leaves that we raked. By the end of the winter, it turns out he could have taken the amount of money he paid us and purchased Ecuador instead.

I hate raking leaves even more now because, in our current house, I rake and bag about forty bags of leaves every year. And we don’t have any trees. It is the ultimate insult for a leave-raking hater. All those leaves come from my neighbor’s trees. This is why I don’t feel guilty when I’m chipping dog turds in the back yard and I accidentally launch one over the fence into their back yard. Anyone who has seen me play golf knows that act is not intentional. I have a terrible short game.

Last week, I was in my backyard raking my neighbor’s leaves and Ella came out and said she wanted to help me. She has a little toy set of garden tools that are more decorative than useful, but she grabbed her little rake, put on her gardening gloves, and went to work. And we stood side-by-side and raked. And raked. And she could not have been more excited about raking leaves. By the end of the day, she probably only raked a total of three leaves, but she helped me more than she will ever know. It was the first time in my life that I enjoyed raking the leaves. I’m finding more and more pleasure in the most mundane places as long as my girls are in those same places.

You know you are a part of something special when someone likes you so much that they want to rake leaves just to spend time with you. If you want to have the best day ever, just find someone who wants to rake leaves with you and spend the day with them.

“Who here sees themselves getting married someday?” Mine was the only hand that did not go up.  Gregg, the counselor on staff at my church, was speaking about relationships to a group of about thirty adult singles.  I was not trying to stir the pot or trying to play the cool, aloof guy, I was just being honest (ok, and maybe trying to stir the pot a little).  The fact is at that time, I honestly couldn’t see myself getting marrried and having a family.

How did that guy end up a smitten father to two little girls?  Two things brought me to fatherhood — seeing a therapist and attending my dad’s funeral.

I ended up going and seeing Gregg personally, and his first assignment in our first session was for me to write my eulogy.  I know, it sounds morbid, but the purpose is clear.  How do you want to be remembered?  If someone wrote a story about your life, what would they say?

When Michelle and I got married, we made a vow that we would never let pets or children sleep in the bed with us. Even after we got our first baby, Gus the bulldog, we held that vow. For eight days. All it took was one thunderstorm for our little ball of fur to whimper at the bedside asking to join us. Mommy wasn’t going to let her baby sit by himself in fear. And that started the pattern of Gus sleeping with us every night.

Here’s a fun fact about bulldogs — They grow.

Our eight-pound fur ball of whimper turned into a sixty-five-pound bowling ball of snore. And our bulldog is able to defy the laws of physics, geometry, and personal space by somehow taking up more room on a queen-sized bed than two full-grown adults. No problem, we just upgraded to a king-sized bed. Problem solved? Nope. Gus’s powers over scientific laws cannot be restrained by bed size. He somehow still finds a way to push me off the bed even with the nine-hole golf course of space between Michelle and me.

I ran my first marathon about 20 years ago. There is nothing like the feeling of crossing the finish line at a marathon.  Even if you can’t or won’t run a marathon, do yourself a favor and sit at the finish line of a marathon someday.  You will see the triumph of the human spirit in several thousand individual stories.  The training itself is life changing.  I do miss the days of being able to run 26.2 miles. During training, I could eat my weight in Peanut M&Ms and not gain a pound. (I have empirical evidence to back up that claim). It probably helped that I was also much younger when I started running because that part isn’t completely true anymore. I didn’t keep as much weight off when I ran the Chicago Marathon three years ago.  Father Time ultimately wins the battle against every exercise program, and these M&M are not going to eat themselves.   

Facebook gets a bad rap, and on some issues, they deserve every bit of the blame. But I really like getting comments from all my friends on my birthday, seeing pictures of my friends’ children, and I especially like the memories that Facebook occasionally sends me.  They remind me of something that I had forgotten about or bring back a wave of emotions I haven’t felt since the day of the original event.  I got a Facebook memory last week from ten years ago where I posted that I was about to run the NYC Marathon in support of the Michael J. Fox Foundation. I still remember my heart jumping when I saw Mom and Amy at the finish line. Running that race was a Top Ten memory in my life.  At least for now. I think by the time it’s all said and done, my girls are going to occupy all ten spots on that list.

This summer, I started training to run the Dallas Marathon this year. I used to consider it a shame that I had run 5 marathons, but I hadn’t run my hometown marathon. I figured it was something that I had to do so it was time to hit the pavement again. But when I got the results from my MRI a few weeks ago showing I have degenerative disc disease and the doctor telling me my marathon days were over, I wasn’t terribly disappointed. 

Warning: Graphic Content

Parental Discretion is Advised

This post has nothing to do with parenthood, just about getting older.

On Monday, I had to deal with people freaking out about the drop in the stock market.  It would not be the only time this week that I had to take it up the rear end.

My doctor told me that it was time.  I knew this day would come eventually, I just didn’t think it would come so soon. He said that I had to get a colonoscopy.  “Do you see me using a walker with tennis balls on the bottom or watching Wheel of Fortune 14 hours a day?”  “No” he said.  “Then I don’t need a colonoscopy because I’m not old enough.”

I’m not sure which I dreaded more, the medical proof that I am officially old or what I was about to endure.     

“Be curious, not judgmental.” – Ted Lasso quoting someone that may or may not have been Walt Whitman.

Saying “I love watching Ted Lasso” is about as original as saying “I love breathing oxygen.” For my money, the cost of Apple TV is worth it just for this show. One of my favorite scenes from Ted Lasso, if not all of television, is the darts scene from season one. I’ll skip the details to avoid a spoiler alert for those unfortunate souls who haven’t seen the show. During the scene, he quotes Walt Whitman, “Be curious, not judgmental” when talking about the people who have underestimated him. Whether or not Walt wrote those words is irrelevant. It is something that I need to hear every day. Whenever I’m flipping channels and nothing interesting is on, I’ll pull up Apple TV and watch that scene again. Even though I’ve seen it dozens of times now, it still punches me in the gut every single time because it makes me realize something about myself.

I judge people all the time. Driving really slowly and holding up traffic? Consider yourself judged. Writing a check for groceries when you are in the check out line in front of me? Consider yourself judged. Walking around Wal-Mart with your underwear on the outside of your pants? Consider yourself judged. A bartender who can’t properly pour a Guinness? Consider yourself judged.

In the story of a special needs family, the forgotten character is always the sibling. It’s not fair, but their lives contain less drama, and they normally get less attention. The healthy brother or sister ends up like that member of a popular band that nobody can name. One of my biggest fears is that Ella ends up feeling like the second member of Wham! or The Righteous Brothers whose name nobody can remember (Andrew Ridgely and Bobby Hatfield, in case you were curious). The path of least resistance is to let the story play out that way. I spend so much time worrying about Audrey that it’s easy for me to think that nothing bad or noteworthy will happen to Ella.

“Ingrid Bergman, now there’s low maintenance.”

Dear Future Son-in-law,

Ever since Billy Crystal uttered those words in “When Harry Met Sally” guys have tried to fit women into one of those two (high maintenance/low maintenance) boxes. Initially, Harry leads you to believe that every guy should aim for a low-maintenance woman. Spoiler alert (for the six people who have never seen the movie): Harry does not end up with a low maintenance woman. Remember, he got the worst kind – high maintenance but thinks she’s low maintenance.

This is a picture of the monthly shipment of medical supplies for Audrey. This photo doesn’t include her medications. I’d have to use a wide-angle lens to include those in the shot.

I want you to know that Audrey will never be low maintenance. But it worked out great for Harry, and it will work out great for you. She will make you smile and laugh every day, and there is no bad mood that is a match for her giggles. Plus, there is no such thing as a bad day when you get to look at this sweet face. She’s high maintenance, but she’s so so worth it.

Your Future Father-in-law,

Andy

P.S. If you hurt her, I will break every bone in your body. Twice.