Regrets

I have a lot of regrets, as I’m sure most people do. Some of them relate to work and career decisions. Others have to do with being braver and less of a people-pleaser. But my greatest regrets are about my kids: not spending enough time with them, or forcing Zane to do PT almost every day rather than have fun like the majority of kids do. When I share these feelings with other people who knew Zane and my relationship to him, the feedback almost always circles back to the same thing: that we, as a family, did a lot of cool things with Zane. 

Of course, that started with the road trip. 

Looking back, it was kind of a big deal that we went back on the road with a medically-fragile baby of two months who was under hospice care. Some people might call that irresponsible (there are a lot of haters out there), but we used it to celebrate the things we love with Zane and to create memories for and with him. 

Before we pulled our RV out of storage in Ft. Myers, Florida, we planned ahead for his needs. Formula, medical supplies, the hospice nurse’s phone number. We also bought a rebozo, so that I could carry him while we hiked. Hiking had been a huge part of the first half of our trip. 

The first national park we visited when we returned to the road was Hot Springs in Arkansas. The historic bathhouses and geology were impressive. Hot Springs is also the boyhood home of Bill Clinton. Take from that what you will.

Me carrying Zane in the rebozo (a common theme in our national park pictures going forward) on a windy, February day in Arkansas. 

Things weren't easy. Back on the road, Zane started having seizures. Often too many to count in a day. We believed we were biding our time. However, when he was tucked up against me in the rebozo, he was soothed and calm. Hiking and movement suited him, so we continued on. 

We hit the remainder of the national parks on this leg of the trip. Here are some photos from a couple of those stops:

Syringe feeding in Guadalupe Mountains National Park

Tucked in the rebozo at Petrified Forest National Park

By the time we ended our trip in July of 2007, Zane was seven months old, and he had been to a lot of cool places. He also logged a lot of miles in the carrier. And...he was a major trooper. I'm so happy he finished the trip with us. 

I have other regrets, such as my approach to his seizures while we were on the road, but I know I did what I felt was best for him in the moment. And many of those moments proved quite stressful. It's not easy carrying on with life when your child has been handed a death sentence. There's a great deal of anticipatory grief involved--an issue I'll save for another time. 

The road trip was only the start for Zane and his adventures. His life was not easy, by any stretch of the imagination. In fact, he's the strongest person I know. Yet he truly did a lot of cool things in his short 13 years on this earth. And those things--those memories--are what make living with regret a little easier.