What does Cystic Fibrosis mean to us today?

It means...
  a phone call on March 11, 2011 that changed our lives forever.
  that on the same day a horrific psunami hit Japan, our world was shaking beneath us in a whole different way.
  our baby has an illness that she will have the rest of her life.
  we pray they find a cure in her lifetime.
  it must be part of God's plan.
  that she is still perfect in every single way.
  that she just as normal as any other baby.
  we don't want anyone to treat her any differently.
  we get offended if you call her a "special needs" child.
  that we are more anxious about her getting infections.
  germs can make her lungs sick.
  that if you are sick, we don't want you to visit.
  we want you to wash your hands before you touch, hold, or play with her.
  I carry hand sanitizer with me everywhere I go.
  that her pancreas can't release the enzymes needed to break down food.
  we have to give her those enzymes by mouth with every single feeding.
  that we celebrate weight gain and good nutrition.
  I can't just nurse her for comfort.
  I have to make sure I manage her feedings so she gets her enzymes with everything she eats but doesn't exceed the max dose in one day.
  that I analyze the frequency, consistency, and appearance of her poop to make sure her enzymes are working.
  we can't go anywhere without a bottle of enzymes and applesauce.
  that there is a lot we can't control, so we may be a little more controlling about the things we can.
  we still desire more children and still plan to have a big family.
  we are more weary of coughs.
  we do mail order pharmacy.
  she takes vitamins and antacids every day in addition to her enzymes.
  we have to give her extra salt everyday because she loses too much of it in her sweat.
  that we do chest PT for 20 minutes twice a day, while she is sleeping.
  by doing chest PT, we get mandatory snuggle time! :)
  I hold my baby a little closer every day.
  that we will do anything we can to keep her lungs healthy.
  that we fear we may outlive our child.  
  she is still God's beautiful and perfect creation and is fearfully and wonderfully made.

And in many ways, it means our life with her isn't alot different than with any other family. There is just more of a regimen we go through each day to keep her healthy, but even that has become our "normal". Some days, we even forget its there because she is just like any other 7 month old. But then there are other days that we wish we could take a break from all the extras required that make each day a little more tiring. Fear and worry also sneak in from time to time, but no matter what, I know God is with us in this and will carry us through the highs and lows and everything in between. And while this diagnosis has been a tough thing to accept, Kelsie would not be who she is if she didn't have CF, so in that case, I wouldn't change a thing. She is perfect and I love every part of her!!!!