The Daddy Diary

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

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

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

Read More

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

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

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

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

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

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

Read More

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

“What’s wrong, Sweetheart?” I asked.

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

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

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

Read more: Fridays at Braum’s

“Wait until someone you love breaks your heart.”

“Wait until someone close to you betrays you.”

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

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

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

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

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

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

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

Ella said, “Sitting here with you.”

Daddy holds back tears because he’s in public.

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

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

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

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

We’ll always have Braum’s.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Read More

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

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

Read More

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

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

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

Read More

I belong to several writer’s groups on social media, and this morning an author on Twitter asked other writers to simply write about what is outside their window.  I thought I would play along, so I opened the blinds and peered out the window into my backyard.

I couldn’t see much through this window because it hasn’t been cleaned since the early Nixon administration.  I doubt the author wanted me to describe the cobwebs and translucent film that blurs my vision of the backyard.  I give myself some grace for not cleaning the window because looking at the construction of this late ’60s built house, I realize that it would take the better part of a weekend and the jaws of life to remove the screen and enable me to reach the exterior glass.  

Read More

During a routine visit to one of Audrey’s doctors yesterday, the nurse said, “I know you’ve heard this before, but she is the cutest baby I’ve ever seen.” I told her that I already knew that and that even though I am biased, her observation is correct. Now, I realize that Audrey technically isn’t a baby anymore because she is three years old, but she is quite tiny for a child her age. I guess that is one advantage of having a child with CHARGE Syndrome – because they are delayed with many aspects of their development, we get to hold on to those baby years a lot longer than most parents. Regardless of whether she is technically a baby or not, the point is that Audrey’s cuteness is off the charts.

But wait, what charts?

Read More

I’m not sure I was emotionally ready for another dog. My little buddy crossed the Rainbow Bridge just a few months ago. But somebody dumped this sweet girl and her sibling, and she needed a home. And it was heartbreaking hearing Ella say, “Daddy, we don’t have a pet anymore. Gus is dead.”

So we agreed to foster this sweet girl. I could tell within five minutes that there was a 103% chance this dog was never leaving our home. And I was right. So we adopted her. Just a tip – Don’t let a four-year-old name the dog. There isn’t a spec of any color but white on this dog and Ella named her Rainbow.

I still miss Gus. I feel like I’m cheating on him every time I give Rainbow a belly rub, which is approximately every seven minutes. I’m not sure how long it takes to fully let go. On some level, I probably never will. But Rainbow needed a loving home and lots of belly rubs. I hope Gus can forgive me.

Read More