Wednesday, August 28, 2013


Written 8/27/13

Today's the day.

It's the day I've been dreading.

CF became real.

I think that moment happens with every diagnosis, if we're being honest. After the overwhelming emotions and the processing of what you were just told subsides, you get past the "numb" phase and then it hits you... for real.

I remember when it happened with Ben. It was the day we started therapy. We had just moved to Florida and Jan was assigned to my little guy. She was completely wonderful, but I balled like a baby after the initial meeting. Down syndrome became real. Ben was officially different and the diagnosis took precedence for a minute.

Alexis started enzymes today. They're going to be an essential part of our daily routine and something that she will likely take for the rest of her life. Right now, she has them (mixed with applesauce) before every feeding. Just one little capsule of yeast-looking pellets that allow her to absorb fats and vitamins that she may not be getting.

As grateful as I am for how far CF treatments have come over the years, the crippling fact remains that there is no cure.

And today? Today that's real. And it sucks.

I will say this...

I've never been more aware of my need for Jesus. And I've never been more aware of the little things. Good is there. She's got a really, really good hiding place right now, but she's there.

And I've had this song on repeat for a good 24 hours. This is my deepest... and toughest desire. One day I won't cry when I hear it. But not today.


  1. Thank you for sharing your struggle and the song. I'm sorry you have to go through this, thankful you're not alone though. I will continue to pray for you.

  2. Hey! My name is Tonya. First off, your babies are so beautiful! I have been reading your blog. My Izzy (26 months) has DS so I am sure I found your blog through reading someone else's blog. I have a friend that has a little girl (6) with CF. Please let me know if you would like me to get you her contact information. She might be a great source for you. Her daughter in now in the first grade.