Farewell, Onfi

Dear Clobazam,

Well, it’s been a long road, Clobazam. May I call you Onfi? We’ve known each other long enough now that I feel like we can use our informal names. You can call me Dave.

As I was saying, it’s been a long road. We’ve known each other for more than eight years. Our doctor introduced us when our son was in bad shape. She said although you were relatively new, you had been known to help other children like our son, and, let’s face it, we weren’t in a position to turn away anything that could potentially save him.

I don’t need to tell you, but the list of side effects with benzodiazepines is intimidating, especially for children. There was also the matter of cost since our insurance didn’t fully cover you. But we were trying to save our son, so we’d pay anything, and we were fortunate to find the National Organization for Rare Disorders that helped us.

While we were trying to figure out the financials and come to terms with the side effects, we started to see a reduction in seizures. As messy as everything was, that was the light that we followed. As you know, we had tried so many other medications, and they either didn’t help or made things worse or came along with catastrophic side effects like your cousin Klonopin or the nefarious Keppra.

When we started to see behavior issues after increasing your dose, we feared the worst. What Keppra had done nearly broke us, and it was happening again with you. The thought that the only way to control the seizures was to let the emotional regulation get out of control was a choice I didn’t know that I could make. Fortunately, backing off on how much of you my son used brought him back to us—too much of a good thing, as they say.

We made a few adjustments over the years regarding how much of you and when my son needed you. Eventually, you were only required at night and became part of our nighttime routine, like tea and bedtime stories. Even though you couldn’t make all his seizures go away, you gave him a chance at a much better, less seizure-filled sleep which also resulted in a better quality of life.

When our doctor brought up the idea of letting you go, I was nervous and skeptical. It’s not that I forgot the dangers of long-term use, but you were one thing I knew had worked. She said we would take our time to make sure the separation didn’t cause more stress or seizures. It would be a long goodbye.

About halfway through, we noticed a few changes in our son. The seizures mostly stayed the same, but he was always exhausted and sometimes irritable. We paused the wean for a few weeks until, fortunately, we saw our son stabilize. Even though it turned a ten-week wean into a few months, the extra precaution was warranted, given our track record.

Once we continued to reduce the dosage, we didn’t stop until it was done. When I filled his medicine containers, I did it for the first time in a long time without adding any of you to the nighttime compartment.

And here we are. We’re a few weeks past our separation. Our son is doing well. We increased the dosage of a different medicine to help compensate for not being under your…protection? Influence? I don’t know what the right word is.

We may not need you now, but you will always have been a part of our journey and one reason why our son has made it to where he is today. For that, I am grateful.



The “P” Word

Other than dying, I think puberty is probably about as rough as it gets.

Rick Springfield

I can relate. We’ve faced both of the top items on Mr. Springfield’s list during our epilepsy journey. There were many times when we didn’t think our son would reach puberty. There were long stretches when our son was in status, when we were in the hospital, not knowing if there would be a tomorrow. Once his condition stabilized, even though his seizures not being under control led to an increased risk of SUDEP, we worried that when puberty did come, his seizures would get worse because of the hormones and the changes in his body and brain.

Well, we have reached that part of our program where our child begins the transformation into a young adult. That thing we weren’t sure would happen that then loomed over us when we thought it might happen is here.


Part of me appreciates the miracle. The body is an incredible, complex system that changes as it matures and grows. We literally started as a clump of cells and were able to invent medicine, computers, and space travel. It’s also a miracle that our son is here at all. In a different time, in a different place, his journey could have gone in a very different direction.

Another part of me is right there with the man obsessed with Jessie’s girl.

Puberty is rough.

I don’t have any good memories of puberty. I do remember that I didn’t have any real guides or explanations for what was happening, so I largely experienced it alone. My parents and friends didn’t talk about it. In school, we learned the basics of biology from a book, but that didn’t cover the confusing, very personal, and very real changes that were happening to me. That experience left me feeling lost and insecure, and those insecurities carried well into my adult life, even today.

I want my son to have a very different experience than I did. I want him to have more answers than questions. I want him to feel supported rather than alone. But helping him navigate this part of his journey feels like asking for directions from a tourist. Oh, and also, there is a seizure monster that may or may not attack you along the way.

I’ve had enough therapy to know that the first step is setting the intention for it to be different for my son than it was for me. Check. We’re also very fortunate to be supported by his school and the team of people at our children’s hospital. There are many more well-informed, science- and data-backed resources available today. And I have an amazing partner, so our support system is in place. Check.

The next thing to do is start, although admittedly, I’ve felt like I’ve stumbled a bit taking those first steps. His access to both good and bad information and our evolving understanding of gender and sexuality have left me unsure of where we are starting. But with the right resources and support, we are starting to get our bearings, and we are on this journey together.

That’s already a better start than I had.

I wanted to pass along this book that has been helpful in grounding my understanding and the language we use when talking about gender, sexuality, and related topics. The book is For Goodness Sex: A Sex-Positive Guide to Raising Healthy, Empowered Teens by Al Vernacchio. Al also has a few TED talks and videos available that are wonderful resources for parents.

Thnks fr th Mmrs

The lights went out. Conversations ended abruptly. We, along with the thousands of people who surrounded us, focused our attention in the same direction. A single voice echoed around us. We listened to the words…to the message. We understood. We were together. We were ready.

The voice stopped.




The speakers bellowed the energy from an electric guitar across the arena, over the crowd, into our ears. The bass washed over us with its low, repeating waves. The drum forced its thumping waves into our chest.

The lights came on.

The band was revealed. The lead singer stepped to the microphone.

We knew the song. We waited for that moment. The moment when we, the band, and the crowd would unite in filling our lungs with the shared air of the arena before it burst out through our vocal cords and out through our mouths as the first word of the first song of my son’s first concert.

I barely remember my first concert. I know that it was David Lee Roth, touring solo after his split from Van Halen. I’m fairly certain I went with my sister and one of her friends, and that they picked the concert. I remember at one point David Lee Roth came off the stage through a tunnel to surface near where we were sitting and I thought it was the coolest thing ever.

It was years before I attended another concert. We moved to Florida, but my sister stayed in Connecticut, which meant that my ride and reasons to go to concerts also stayed in Connecticut. In my teens, I experimented with different types of music, but none of my friends were concert-goers, so it wouldn’t be until I moved to Colorado in my 20s that I would see my next concert. That experience marked the start of a string of countless shows, including a number of performances at Red Rocks and Lollapalooza in Chicago, big stadiums, small venues, and outdoor amphitheaters. My favorite performance, though, will always be sitting at a bar in the foothills of Colorado, watching my then-girlfriend, now-wife, singing on stage.

On a side note, we discovered years after we were married that my wife was also at one of those first concerts in Colorado. We saw that same band at a concert a few months ago. Kismet.

My wife brought music into our house, and we kicked off the marriage with our own concert for a few guests. It was no surprise, then, when our son was born, he came out with a love of music.

When he was an infant, I would sit in the yellow swivel chair in his bedroom and play the simple strumming patterns that I knew, singing him songs from The Decemberists, which he’ll still occasionally listen to on his Alexa as he falls asleep. He grew up surrounded by musical theater from my wife’s school. He’s jumped from guitar to piano to drums as he seeks his musical expression, listening to equally diverse styles of music.

Seeing him at the concert, surrounded by thousands of other fans, with the lights, the fireworks, and the band kinetically generating energy that washed over the crowd, was special. But seeing his face as that energy washed over him, especially with the social, emotional, physical, and sensory challenges that he has, was nothing short of magical.

All these years later, his love of music only continued to grow. He goes to bed with music playing. He’ll have Alexa playing music while he plays video games. Music while he is outside playing basketball in the driveway. When he needs an extra boost or motivation, he’ll put on a song to pump himself up.

Once he got sick. Sensory issues. Crowds. Exgaustion and staying up late. The right mix of him doing better, and a band that we all like coming to town. He was ready.

Us rocking out