The Job

This kid fights every single day. Even when he isn't in the hospital, or on IVs, he has to work every single day. Pills taken with every meal. Breathing treatments to slow the progress of this disease. Exercises and stretches to keep his body from falling apart so quickly. Running and coughing to clear the thick, sticky mucus from his lungs. Boiling and steaming nebulizer cups after every use. Waking up in sticky formula because something from his G-tube came lose in the night.

Sometimes it can be hard to see your child fight so hard to breathe at times. He just keeps pushing. He never gives up.

Don't take the health of your kids for granted. This boy of mine has never woken up a day in his life and missed a breathing treatment. He has never had a meal digest perfectly normal. He has never known a day where he hasn't coughed. If we have a simple day trip, or just a weekend stay somewhere, we can't just pick up and leave. It takes real planning to make sure he won't run out, and has everything he needs to make it just a few days.

There is no "easy day" with Cystic Fibrosis.