We're sitting in our favorite restaurant loading enzymes onto a heaping teaspoon of applesauce. Our 18-month-old daughter Annie is impatient, but she knows the drill. The couple at the next table gives us “the look.” This look used to be intimidating. “What are they feeding that child?” their expressions seem to say. A nervous waitress, who apparently assumes Annie's enzymes and applesauce is some sort of new age toddler food, comes by and tells us to “Give that kid some real food!” When she delivers free ice cream at the end of the meal, we politely accept and decide that no explanation is needed. I guess she showed us! My husband and I smile at each other and begin to reflect on how far we've come.
After the initial diagnosis, every day came with new challenges. We had no idea what cystic fibrosis was. Where do we begin? How will we know what to do? Are we strong enough for this? Over the next few months, we received a full education. We learned how to load enzymes onto applesauce. Can you give an infant applesauce? It seemed wrong somehow, but down it went in one big slurp.
We learned about easily digestible formulas and were amazed at the generosity of our pediatrician's office when they loaded us up with free samples every time we stopped by. We learned about salting everything -- starting with Annie's bottles. Unfortunately, we missed the part about salting throughout the day and instead gave Annie several very salty bottles until our kind nurse explained the salt was to be divided between all of her bottles throughout the day. Oh … ok!
We learned about sweat tests and how difficult they can be to perform on newborns, especially when you live in a rural state where sweat tests are not routinely done. We learned about blood tests and cried when they took a blood sample from our tiny newborn's arm. We learned about mutations and drugs, and what is now and soon-to-be available. We learned to hope.
By the time Annie turned 1, we realized that we knew more about poop than we ever wanted to. Like how diaper changes can easily clear a room, and gas becomes funny again like when you were in the sixth grade. It became our joke to claim Annie's “loud ones.” Annie has never known anything different, so she just smiles and keeps them coming! We also learned how adding fat -- like butter and half and half -- to Annie's meals does not mean we get to add those things to all of ours! After a long cold winter, it was obvious that Annie was not the only one who had gained some weight.
Thinking back, it's hard to remember how it was before. We can do this. We are doing this. So we sit at the restaurant smiling at each other knowing we are both thinking the same thing.
