Sometimes I see

Sometimes I get so accustomed to Cole having CF, I forget just what it truly changes for our family. People ask “how do you do it” or say “it must be so hard” and my usual response is “It just becomes normal. It’s your everyday routine and you stop remembering that it’s not normal.” There are still times though when it hits me just what it means and how our lives have been altered.


Today it was a phone call from my sister to me at work. She is watching the boys for me today and Cole had one of his VERY typical blowout “poop explosions”. As most know, CF poops are horridly foul. For Cole they are also very messy and “explode” out of his diaper onto anything in the same zip code at the time. As his mom, I can usually make it through without any gagging or cursing. Pj gags more often than not, but still handles it very calmly. Chaz doesn’t seem to be too bothered by any of it, and just uses the first wiff to inform us that Cole needs changed if he catches it before it makes itself our way. Nina and mom are so seasoned and in love with Cole, you would never even know it wasn’t normal. Anyway, the best course of action following one of these incidents is a bath for Cole and a nice scrubbing and disinfecting of everything in the vicinity of said explosion.


I have been so blessed that I can still go to work part time and I have my grandmother (and grandfather) to care for Cole. The only other baby sitter we really have is my mom. Jenna has started doing it more, but I believe this is her first true explosion experience. So, when she calls me today she just wants to let me know his poop consistency was off and they had had a blowout. We discussed what had caused it, if there is something we need to adjust or further look into and got off the phone. (Discussing Cole’s poop is a daily thing around our house. A note goes with him every morning letting Nina know what time he got up, had enzymes, ate, what he ate, if he’s pooped, how many times he’s pooped, what his poop was like, etc…you get the picture. Then I get the report back when I pick him up after work. We also talk about his treatments, how they went, if he’s coughing or congested…All an attempt to be proactive and detect something wrong before it gets too bad.) Anyway, back to topic at hand, after getting off the phone I realized just how much daycare really isn’t an option for us. We’ve never really considered it anyway, but I guess I had never thought about this happening in a daycare facility or with a baby sitter. There is no way that a stranger is going to tolerate these explosions. There is no way that Cole would get the care and love that he needs after one of these. There is just no way. It’s funny all the little things we never think about when it comes to the impact on our lives from this disease. The things you just consider “par for the course” and begin to easily overlook as normal.   And honestly sometimes I wonder if I am taking the easy way out by going to part time.  If I need to "toughen" up and be able to do it all...but times like this make me realize that NO- I am doing exactly what I am supposed to.  I am making sure my son is getting the best care and life he can.  It's still a bit disfunctional and we barely make ends meet but we're happy and he's healthy and that is what is truly important to us.