The In-Between

We were in Colorado recently and saw some friends we haven’t seen in over a year. The school year has also started, and we’re seeing parents and children that we haven’t seen all summer. In both cases, people are seeing our lives at specific points in time. They’re seeing us then and now, but they don’t see us in the in-between.

The in-between is where the highs and the lows are. It’s where the daily struggles of living with epilepsy are visible. It’s where the seizures feel like they never end. It’s where there are long stretches of days that seem impossible and where sometimes hope is lost.

The in-between is also where small accomplishments seem enormous and where incremental progress seems like leaps and bounds. It’s where not going backward is sometimes as good as moving forward. It’s where a baseball game feels like the World Series and where climbing a rock wall feels like summiting Everest.

The in-between is where every challenge and victory brings us closer together as a family. It’s where we shape our perspective. And it’s where our actions and how we approach the world shows how far we’ve come.

The in-between is where we live. The in-between is our every day.

 

 

A Really Big Week

Over the summer, two huge things happened during the same week.

Professionally, I delivered a keynote speech at a conference. I’ve given many presentations before, and public speaking is something I want to do more. But this was much bigger than any talk that I had given previously.

I started to prepare for my talk weeks in advance, but, at the same time, another important event was looming on the horizon. The same week as the conference, we would be dropping our son off at sleepover camp for the first time.

Our son has rarely spent a night without either my wife or me there. And, when I say rarely, I mean once. No sleepovers with friends. No nights with the grandparents. One night in his entire life he spent with our nanny so my wife and I could go on an extended date night in the city and stay in a hotel, three blocks from our home. And now, we were going to send him away for a week.

Our local Epilepsy Foundation affiliate runs a program called Camp Achieve that is tailored to the needs of kids with epilepsy. It’s a week-long summer camp where the kids do proper summer camp activities. They swim and play tennis and have water balloon fights. They’re surrounded by other kids that are like them. Many of the counselors are former campers, and they are rounded out with volunteer doctors and nurses and other medical professionals. We knew and trusted so many of the volunteers because they were our nurses and friends we met through the Epilepsy Foundation.

Even so, the idea of leaving him for a week tore at my soul. I was worried about him, not just medically, but emotionally. I wondered how he would do away from us. I was worried about my wife. I was trying to be strong but leaving him was one of the hardest things I’ve ever done…right up there with giving a keynote speech.

When I was still weeks away from the overlapping events, working on my speech provided a distraction. But as we got closer to camp week, I was having difficulty focusing. I didn’t work on my speech as much as I wanted to. I also wasn’t dealing with the impending separation from my son. Before I knew it, it was time to drop him off.

In life, there are easy days, and there are hard days. The day we dropped our son off to camp was a tough day. I was so focused on the process of checking him in that I was unprepared for when it was done, and we were shown to our car. The rest of drop-off day was a waste, as was the next day as my wife and I checked Facebook every two seconds to see if the camp had posted any pictures of our son.

But the conference was still happening, and it was only a few days away. I needed to focus and, thankfully, my wife helped, and her performance background proved instrumental. We spent the next few days shifting our attention away from Facebook (it helped that we started seeing pictures) and towards my talk. But each of those days was an exhausting marathon trying to keep my attention where it needed to be. Every night, I felt like I had given everything and crashed hard, only to repeat it the next day. Eventually, there were no more days.

The day of the conference was the day before we would pick up our son. It felt like I just needed to get through this one, really big, last thing. Even though that morning, I couldn’t remember any of what I was going to talk about, I somehow managed to calm my nerves enough to deliver what I was told was a solid talk. The euphoria after the conference was a mix of relief and excitement. My wife and I celebrated making it through the week with an intense ping pong competition, then went to bed knowing we’d see our boy in the morning.

We made it.

Pickup day was an orchestrated event, so even though we saw him outside his cabin, we resisted the urge to run over to him and hold him. But my heart felt so full when he signed “I love you” to us with a tired smile. When the ceremony was over, I held him so tight, and it felt like the perfect reward for making it through the week.

My son had a great time and wants to go back. Next year, though, I won’t sign up for anything the week of the camp. Maybe my wife and I can even go away together.

Just not too far away.

Traveling On The Ketogenic Diet

We love to travel, so when we started on the ketogenic diet four years ago, I worried that the diet would close off the world to us. We could still go to Colorado and Florida because we had friends and family there with kitchens. There were also stores where we could buy ingredients for his meals and pharmacies if we ran out of medication. But what about the places where we would be on our own?

Our first big trip was almost two weeks in Hawaii. I wasn’t sure how easy it would be to find specific ingredients we would need to make food. I also didn’t know if we could find a room with a kitchen, so we prepared as much food as we could to take it with us. It was our first time traveling with a cooler, so I read through the TSA rules to see where they stood on traveling with ice. I researched coolers to find one that would fit enough food but wouldn’t be too big to carry on the airplane. The week before, we made enough food so that we had meals available for the entire trip. The cooler was heavy, but it allowed us to enjoy our trip without worrying about staying in ketosis.

This year, we went to Panama. At least in Hawaii, there was an ABC Store on every corner. In the remote places we were going to in Panama, that would not be the case. It was also not likely that the closest store would have the specific ingredients we needed. There would also not be a pharmacy to stroll into if we needed a prescription. Again, I hit the internet to read about bringing medication and food internationally. There were no specific restrictions about bringing my son’s food into the country, so we again prepared enough meals to cover the trip plus a few extra days. Even though we were staying in homes with kitchens, making the food ahead of time removed many variables. We also upgraded our cooler to a backpack to make it easier to carry on those long travel days.

Now, traveling on the ketogenic diet feels routine. We prepare the food ahead of time. We know the routine to pack and get through security. And we no longer worry about the world being closed off to us. If we can make keto work in the mountains of Panama, we can pretty much make it work anyway.

If you’re looking to travel on keto, here are a few tips:

  1. Find complete meals you can prepare ahead of time. Ideally, it’s also food that can be frozen, like ice cream, pizza, and pancakes (syrup went in checked baggage). Some restaurants will heat food for you, some won’t. Keep that in mind when you plan the meals.
  2. Make sure everything is frozen. Freeze all of the food for the journey and use the blue ice packs to keep everything cool. Make sure the ice packs are frozen, though, because TSA won’t allow them through if they aren’t.
  3. Keep a letter from your doctor handy. If a situation arises where you may need to explain the diet, a letter from your doctor can come in handy.
  4. Don’t forget utensils. Not every segment of your journey will have access to forks and spoons, so bring some with you. Plastic, disposable utensils are best because washing silverware while traveling is not always possible.
  5. Get to the airport early, just in case. We generally get pulled out of line by TSA when they scan the cooler, so having the extra time creates a more stress-free experience.

My final piece of advice is don’t be afraid to travel. It is a big, amazing world out there with so much to see. The ketogenic diet doesn’t need to prevent you from experiencing it.

If you have any questions about traveling on the ketogenic diet, feel free to leave a comment or send me a note.