Tuesday, June 8, 2010

CysticDad Guest Blog - GIVING IT UP

CG asked me to guest blog for her tonight so I'm going to take advantage of the rare opportunity.

First an update on CG. She had an embolism today to maybe finally stop these blasted lung bleeds. They cauterized three areas so maybe we have a handle on it. But she is alone, which leads into the remainder of the blog.

Giving it up is not for wimps, sissies need not apply.

CysticMommy came home for a needed break after 7 months with CG and I greeter her with a shiny new bike for her, (cough, cough), 39th birthday. So CysticMommy and CysticLady were going on their maiden ride together and CysticMommy fell and shattered her wrist. Surgery went well yesterday but she is not in any shape to be the primary caregiver for CG. So it looks like I'll get some time off work when the transplant call comes, like about 2-3 months. Oh, and I won't be buying CysticMommy that Red Rider BB gun. She'd probably shoot her eye out.

So today I needed to be in two places at once. Not possible right? It is if you GIVE IT UP.

CG is very independent minded (if you haven't noticed). The two of them, (CG and CysticMommy) needed a break. CG was relatively healthy and no offers were coming. So together they chose to have CysticMommy come home to Isle of Palms for a time. But what if.......(endless possibilities). So decisions have consequences. But preparation is the key. Could CG handle whatever came up? And the answer is ..... absolutely (until the cavalry comes).

CF kids need to learn, and learn early to take charge of their life and their health. If they make good decisions they do better. If they make bad decisions they do worse. I'm not commenting on today's events but preparation is the key. But you as a parent or friend or co-worker don't decide, what course to take, they do.

The best example comes from a story that happened when CysticLady had to go in for a clean-out in Jr. High. We had the best CF Dr and CF team in the world led by Nurse Sergeant N-Sarg. She was the best CF nurse in history. CysticLady was being checked in and we got to her room and were settling in. Then N-Sarg came in and started checking things out. I was doing a burn because I knew this was all due to CysticLady being non-compliant. I said something to that effect and N-Sarg said, "I'll see you in the hall."

Well holy shit, not that! Can I climb out the window? So now I'm pissed and scared at the same time! I'd rather face Sister Beat My Ass in the cloak room than N-Sarg in the hall.

So I go into the hall and N-Sarg puts her finger right in my face and said something to the effect:

"No-one likes to be sick! She has CF, you don't. She is dealing with this as best she can. If she deals with it right she'll make it, if she doesn't than she'll do worse. But you have to let it go, she is in control of her health, not you. You either support her now or get out. She has to deal with this all by herself and figure out why she is here and if she wants sickness or if she wants health. All you can do is F it up. Now you choose. Do you understand?"

I whimpered back into the room and asked if CL needed anything and went home. And to this day I try and try to remember, these "kids" are the ones dealing with CF, we are just supporters. If you prepare them right, they will be independent. If you coddle them they will learn to like that. But what if the day comes and you need to be in two places at once. They need to be prepared to handle more than you will ever know.

What happens if in the school yard they are picked on, or when they can't run the laps in gym, or in they are in the dorm at college and are sick, you aren't there.


Don't forget, order your T' shirt and enter your poem in the poetry contest today.

Thanks for your time tonight.



  1. What a totally awesome post, CysticDad. Good work!

  2. I like CysticDad :)

    Them is some wise words there!!

  3. Brilliant, Paul. Absolutely brilliant. Like your daughter, you have taken my breath away.


Thanks for commenting! Your comment will be posted ! -CG