My son was diagnosed at birth with a 1 in 40,000 rare disease- salt-wasting congenital adrenal hyperplasia. (CAH) Don’t worry if you’ve never heard of it, I’ve encountered doctors that don’t even know about it over the years.

In short, it’s a genetic disease and just like its name hints, it affects his adrenal glands among other things. In case you didn’t know, when you have an injury, your body naturally boosts its adrenaline in order to keep your organs running smoothly- except some kids with CAH don’t naturally have that. So if they get an injury they need a little extra help.

If my son has an adrenal crisis then we have roughly 20 minutes to get him a shot and to a hospital to start his IV fluids and Solucortef drip. Needless to say, it can be scary when it happens. Luckily we’ve only had a handful of these crises in his sixteen years. (None of them were the result of our adventures)

Please note that not all kids with CAH have this extreme version of the disease (classical CAH) and therefore do not require the medications and shots I’ve talked about. You can learn more about congenital adrenal hyperplasia here. 

For most moms with kids like my son, I’ve noticed they find it very hard to let their children be children; you know- explore and have adventures. On one hand, I totally get it- watching your child’s body shut down in front of you during a crisis is the most horrible thing imaginable. But so is not giving them a chance to live. And if your child is anything like mine then you wouldn’t want to cage them and watch the light of life burn out in their eyes any more than I do.

One of the biggest things I’ve stood by since he was little was that I would never make him become the boy in the bubble out of fear for what might happen. Don’t get me wrong- I weigh out every single adventure we have. I look at the risks, access what could happen, or what could trigger him, and then find an emergency procedure to make sure that if something goes wrong I can stabilize him and then get him to a hospital. To say I analyze every angle is an understatement. But, it is necessary to protect him while letting him experience the world and I feel he deserves that chance.

So when we go on our adventures, be it scuba diving in the cenotes in Mexico, cruising to Cuba, rock climbing and rappelling in Alabama, or hiking in Colorado; we build a plan to make sure we keep him as safe as possible. It’s a win for everyone. He gets to try new things and live his life- all while learning how to do this on his own later as an adult, and I get to build lasting memories with my son. See? Win-win.

If we live our lives in fear, is it really living?

This is the question we as parents must ask ourselves when we make decisions for our children like this. We never want to put them in danger, I mean, it’s our job to protect them from harm, right? While the answer is yes, that doesn’t mean that we can’t find a way to still help them get out and live.

I hope to turn this blog post into a series specifically for parents of children with CAH and I hope those parents will take my words to heart and help their children live their life instead of holding them back out of fear for what might happen. In the next post, I’ll be discussing more in-depth on what I look at when planning a trip.

Happy Wandering!