I have a beautiful friend who always says that dealing with CCHS (Congenital Central Hypoventilation Syndrome) is a roller coaster of a ride. That’s my opinion also, and it’s 100% true. Life with Mighty Z has been a roller coaster on so many levels.
Just like a roller coaster car climbing the rails does, Mighty Z has brought me so many butterflies in my stomach: butterflies of proving the doctors wrong, butterflies of the inchstones that Mighty Z has met with her gorgeous smile on her face, and of course the butterflies I still get every time she opens those amazing eyes in the morning ready to seize the day.
Just like you feel being on the very tippy top of a roller coaster, able to see the whole city, so I have felt many times that we are at the pinnacle of this disease and can see how far we’ve come, how hard we have worked just to breathe. I am in awe of not just Mighty Z, but also of the family God has given to us to help us achieve these goals.
Yes, and then come the scary dips and it doesn’t matter how many times you have ridden that roller coaster, those dips still take your breath away. The same is true with CCHS. No matter how long we have walked this road, those dips, dives, and sharp turns always jar us. However, then we start climbing right back up and hit the top once again.
When the ride is over, instead of getting off and lamenting about how fun and yet scary the ride was, I get to ride again and again. Yes, CCHS is a roller coaster of a ride; however, it is the best ride in the world.