About this website

About this website

Cam after his first brain surgery, 2016, ten months old

Cam’s High Five: The Trials and Adventures of a Disabled Cutie Pie

Cameron got sick at a very young age and the trajectory of his life changed big time. We almost lost him several times in those first couple years, but when the smoke cleared, it looked like we were going to get to keep him for awhile. By this time, he was way WAY behind physically and mentally, with no promise he would ever catch up. He required SO MUCH in the way of doctors appointments, medical treatments, hospital stays, tests and therapies to even HOPE for progress.

Meanwhile, life didn’t stop just because the baby was sick.

The rest of us still had lives to live. Kris and I had careers. The big kids were both in gifted and talented programs at school, and were super active with their friends and activities. We owed them happy, productive lives, too.

Cam with his big brother and sister, the year of his original diagnosis

We knew life in our house would never be “normal” again. (But really, what was “normal” anyway?)

So, it became a focus: to fit Cam and his special needs into our lives. Sure, we had to make some pretty big allowances – we moved to a ranch style house, I went to part time hours at work, Cam eventually got a nurse – but overall, we always worked to fit Cam into whatever we were doing.

And that included travel.

It occurred to me, as we were canceling a really awesome road trip to California we had planned for last year during the pandemic, that Cameron was a pretty well-traveled kid. Especially for being so…complicated. I mean, he had been on more trips (out of state, out of the country!) than his big brother and sister had by his age.

The first big trip I took with Cam was to Boston to get life-saving proton radiation in 2016. I didn’t know how to transport this weak, silent, ravaged baby across the country. On an airplane. By myself. Where would we stay? Where would we eat? How would we get places? What the heck did I need to pack? I had no idea what I was doing. To make a long story short (read the story here), the trip to Boston was a success. And it was surprisingly…enjoyable.

The whole family, including Cam, has taken a whole mess of trips since then. Some went more smoothly than others, but every time we learned something new. I’m hoping I can help someone else get where they need to go, help them avoid wasting time or money or even help a family decide to try something they thought was impossible.

Cam is growing and changing every day. Soon we won’t have any choice but to transport him by wheelchair (rather than having the option of carrier or fold up stroller) and I’m nervous about that. I don’t know what’s next with his respiratory status (it’s freaking HARD to transport oxygen tanks and ventilators!) or his endocrine and neurologic problems (I mean, jeez, how many medications and tubes and fluids does one kid need?). Despite these things, I don’t intend on slowing down with the travel. In fact, I intend to pick up the pace. (Click here to read Cam’s Ten Before Ten)

For this website, I have two goals:

Cam and me, post-surgery

1) Have a happy, healthy, safe kid and family at home and on the road.

2) Help someone else have the same thing.

Have questions or a really amazing tip to share? Email me at hello@camshighfive.com

Welcome to Cam’s High Five! Happy travels!