Thursday, December 10, 2009

What I Know For Sure: CF Mom Edition

A few weeks back, I wrote a "What I Know For Sure" on life after baby, after following my friend Rebecca's example.

This week, it's from the perspective of being a CF mom...for those of you who don't deal with this disease each and everyday, it will give you an inside view of our "normal."

For those of you who do deal with this disease everyday...enjoy the list, and feel free to make your own!

What I Know For Sure: CF Mom Edition
  1. You will talk about poop more than you had ever imagined. Wayyyyy more than the typical parent. "Is it solid? Oily? How many today? Think it's because we gave him too few enzymes with that meal? Oh no, major explosion!" become common conversation topics.
  2. You thank God everyday for insurance. We get at least 2 bills (or breakdowns of the bills) a week...on a good week...and so far have had to pay very little out of pocket. CF is ridiculously expensive and we're not even a year in yet.
  3. You find enzyme capsules everywhere. In the nook on your kitchen floor, in coat pockets, the cup holders of your car...I'm sure I'll just find just the capsules themselves once Gav gets big enough to swallow pills...but for now, empty capsules. everywhere.
  4. You and your child see your CF team way more often than you see most of your family. Like, way more often. Just 10 months in, I can't even remember how many times we've been in and out of doctor offices...thank goodness that staff loves our child to pieces!
  5. You struggle to find the rare foods that still contain lots of calories and salt. I hadn't realized that nearly everything is now low sodium...until I had a child that craved/needed that extra salt. Even baby food is labeled "healthy" these days...what's a mom got to do to get a food packed full of fat, protein & sodium?
  6. When you see other parents feeding their kids, you get very nervous that they aren't preparing their enzymes with their is their kid going to digest that food?!? Major stomachaches and explosions ahead!! Oh yea...never mind...
  7. You already know when next year's Great Strides Walk is...ours is May 1st for those who want to walk alongside us!
  8. A lazy morning will still always include breathing treatments and CPT's...same goes for the lazy evenings. But at this point, they are so's very weird to think that other families don't do the same two...three...four...times a day.
  9. You know where your child is on the growth chart (height, weight and height:weight) by heart. You know what percentile your child falls in for each. These numbers will always be in the back of your mind at every single meal, on the drives to each clinic visit, and on the drives home.
  10. With every advancement he makes we are keenly aware of how lucky we are to live in this day and age. No matter if the accomplishment is big or small we try not to take any of them for granted...just a couple of generations back, our son would probably not be alive today. Thank goodness for medical advancements, a loving CF team, and hope for a long future!

There are so many, many more things I could CF moms, continue the list! What do you "know for sure," by being a CF mama? Of course I wouldn't know where I would be (mentally, emotionally, spiritually...) without all of your support!