One Checkpoint at a Time

Never have I had to draw on my expedition racing experience so hard, nor did I realize how much of an expert my son is at it already.

It’s been 11 days since we heard the news about our son Max. Hearing the word “rare” in a diagnosis is never something you want to hear. Max was diagnosed with pulmonary hypertension and an Atrial Septal Defect. The pulmonary hypertension was the alarming part, because it’s rare to see it in someone so young. Still, we hoped it was being caused by the ASD and that once the hole was fixed, the pulmonary hypertension could be reversed and we’d be at the finish line in no time.

We thought this would be a short adventure race, with just a couple of checkpoints. A trip to the hospital, a little surgery, a fix, and then a short road to recovery.

But that’s not how it went.

5 hours after we stood and watched Max being wheeled away in a hospital bed, we were taken into a little room with the doctors while Max slept and recovered. My heart started to clench again as they started to talk. A feeling that, unfortunately, was becoming all too regular in my body. For the week leading up to the surgery, it was hard for me to get any full breaths into my body let alone any real sleep.

“We couldn’t close the hole.”

Those were the only words I heard. After that, my mind went blank. I tried to keep following what the doctors were saying, or to at least hold on to the words they were saying so I could look it all up later- but I couldn’t. I felt paralyzed. All I wanted to do was scream and throw a five-year-old temper tantrum.

Fortunately, I didn’t. And Jason, somehow, held it together and followed every word.

As he gently held my hand and rubbed my back while listening, I was reminded once again of why we make such a good team. I react and feel things immediately, sometimes all at once. Jason is able to compartmentalize, take in all the information, learn everything he can, and have his feelings later.

By the time I came back into the room, emotionally and mentally, the doctors had moved on from explaining the what, why, and possibilities of Max’s future to talking about the next steps. What our next checkpoint was and what the next three months would look like for Max and for our family.

I realized I couldn’t handle thinking about how far we might have to go, or all the possibilities and what-ifs that lay ahead. Not yet, there was no point in trying to figure it all out right then. I had learned that from my very first expedition race. “I don’t think I can do this.” I remember saying to Jason late at night when I could not sleep the night before starting my very first big race. “Oh, but you absolutely can Chelsey, as a team we will take it one checkpoint and one leg at a time till we get to the very end.”

He was right, of course. After the first couple checkpoints, I started to see and feel how it all worked. There was no way we could think about the end, as it was still days away and we couldn’t possibly have the energy or bandwidth to think that far. All we could do was focus on navigating to the next point, keep eating and drinking and take it one CP and transition area at a time. Days later, after we had crossed the entire country of Costa Rica under our own power, I realized how important it was to take that strategy into my everyday life.

And now, another 17 years later, and I was still drawing off of Jason’s comment and my first expedition experience. All I could do was focus on the present. The precious present.

After some more tears, lots of pacing the halls, and trying to take deep breaths in a room full of equally anxious parents, we finally got to see Max.

He was groggy, needed to pee, and desperately wanted to move his legs, but he had to lie flat and stay still for another four hours. Besides getting stabbed twice while they tried to get his IV in, this was probably his least favorite part of the whole experience. But wow, what a brave, patient, and calm boy he was. And still is.

After some more tests, some sleep, and a whole lot of trying to get him to pee into a bottle, he was finally allowed to sit up, and we moved into a bigger, nicer room.

“This is so great! I get to play xbox AND watch movies?! Can Revel come?”

Those were some of his first comments as he became more and more awake.

For the next 24 hours, we played xbox, watched movies, had visits from Revel and the grandparents, read, talked, and ordered him food. For Max, it was an amazing adventure. And that’s exactly where we want to keep it for him.

In fact, he’s already excited about his next procedure and hospital visit in a few months.

“I am actually really excited, Mama,” he told me yesterday as we walked around our block. “I wonder if they’ll have different xbox games and new movies. Do you think, Mama?”

“I bet they will. I can’t wait to try that skiing game with you again.”

Jason’s and my experience was a little different.

Every time Max’s heart rate started to climb and the machines began to beep, the nurses would come in to check his bandages. One time, they had to press really hard on his groin for 10 minutes to stop the bleeding. Another time, his heart rate kept dipping, so they brought in an EKG machine in the middle of the night.

The next morning, we learned that these were things that could happen after this kind of procedure. But we were new to all of this, and every beep, every nurse coming through the door, and every unexpected change sent our hearts and stomachs into a nosedive.

Needless to say, we didn’t get much sleep.

But in those sleepless moments, I could walk over to Max, stroke his head, and talk or read to him. He was awake, too, and those were the moments I absolutely loved. Because in the middle of all our worry and anxiety, Max was, and still is, our beacon of calm. Our little teacher in how to be present.

“Mama, it’s kind of nice talking in the middle of the night. Can we do this again sometime?”

“Yes, Max. Let’s do it.”

As we learn to adapt to this new course we find ourselves on, I don’t think we’ve ever needed to draw so heavily on our past experiences with Spirit B and with adventure racing. Focusing on our first checkpoint and letting go of what we can’t control has become a nonstop mantra in my mind and spirit. It’s something I have to keep reminding myself of, over and over again. And fortunately, I have another new guide and teacher: Max. Through out all of this, he has been so unbelievably brave, strong, kind and sweet. “Mama, I see you worrying. It’s ok. I’m ok and the Drs said we have a plan.” He told me the other day when I thought I was hiding my worry quite well, but obviously was not.

These next few weeks, our next checkpoints are the doctors’ appointments, getting Max started on his medication before we head to NZ, and doing what we can to keep one another happy, calm, and healthy. Despite the fear and anxiety, this has also been a really big bonding experience for our family. Our family hug and snuggle quota alone have more than tripled. The support we’ve received from friends and family around the world, and knowing we have an incredible team of doctors and specialists in our corner, means more than I can put into words.

I still have the moments when the negative thoughts find their way in. Especially between midnight and 3 a.m., when everything feels a little heavier and my mind has far too much room to wander. But I hope this phase will pass and my nervous system will start to relax with time.

I don’t have all the answers. I don’t know exactly what this course will look like or how many checkpoints lie ahead. I wish I did. For now, I’m trying to stay here. With Max. With Jason and Revel. With the next appointment, the next conversation, the next little moment that reminds me we’re still moving forward.

I’m scared. I’m anxious. And I’m hopeful.

I’m hopeful that with time, we’ll find our rhythm on this new course. That the unknown won’t always feel quite so overwhelming. And that, eventually, the hours between midnight and 3 a.m. will feel a little less heavy.

For now, we’ll keep taking it one checkpoint at a time.