A couple times a week I goggle Mighty Z’s disease. 'Why?' you might ask. Because I want to know if there is any research going on, any stories about other kids with CCHS (Congenital Central Hypoventilation Syndrome), or if there is anyone just talking about the disease.
Every time I look, I find someone who obviously knows nothing about this disease saying things like, "those who have been cursed have it" (granted, CCHS's older name is Ondine’s Curse), or "those unfortunate souls who have CCHS", or "this horrific disease that kills babies and small children". I am typically offended by these statements. Why? Aren’t those accurate descriptions of what an outsider would think of this disease? Yes, I guess they are, but I don’t see it that way. I see the amazing strength and fortitude these children have, and how funny and silly they are. To me, CCHS is just bumps along the way.
I met a mother of twins with Muscular Dystrophy, and after she told me what life was like with MD, I told her what life was like with CCHS. I was surprised that she wrinkled her nose and said how thankful she was that her twins didn’t have CCHS. I will tell you I was shocked and offended. I knew for a fact my kid's disease was much better than her kids' disease.
She and I share the same pulmonologist, and so on my next visit to see him I told him what the mother of twins with MD said, expecting him to side with me on the fact that her kids' disease was worse than my kid's disease. When he sided with the mother of the twins and said that Muscular Dystrophy was indeed easier than Congenital Central Hypoventilation Syndrome, I was once again offended.
Why? Why do I care who has the better disease and why am I defending my kid's disease as the best disease to have? Sounds quite loony, huh? I guess because my new normal way of life is just my normal life, and all others' lives seem harder and less glamorous. I see these children with CCHS as normal everyday kids; some have trachs, some wear BIPAP masks, some have the breathing pacers implanted, some are 24-hour dependent, and some are 12-hour dependent, but all are just normal kids that play, go to school, have friends, and do their chores.
I guess I have become a disease snob, as crazy as that sounds! However, I have found that others with different types of diseases think the same way-- that their disease is better than someone else’s. Whatever becomes your normal is what you think is the best. It's funny how human nature makes what is an abnormal life to outsiders seem so normal to you.
One of my friends who also has a child with the same super cool disease as Mighty Z always tells others, “I hope your disease is as fun as ours." In a way, that is laughable, because CCHS is not fun per se, and yet in many ways it is since these children are fun in every way. Anyone that has hung out with Mighty Z for five minutes knows how much fun and how funny she is.
CCHS has changed my world for the better, and all who come into contact with it are changed as well, because those who have CCHS have shown us all what the true meaning of life is.
edited by Emily Joy Minich