April 7, 2013

Things I Wish People Wouldn't Say

There really are things people should think carefully before they say.. If you're truly curious, ask in an honest "I'm curious" manner. Oh! Also, don't just assume. You know what that does. Most of us ("us" being CF parents/caregivers) are more than willing to divulge you in any and almost all information you could ever, ever want about CF.
Especially for a CF Mom like me(you know, the over-sensitive type), some things are just top notch irritants. Others will send you into a depressive spiral you haven't seen since the day you got the diagnosis. Let's review a couple. Great suggestion from my Buddy over at Real Life Parenting.

1. This is the number one offender for me, personally. "Oh, so he'll have to have special classes. Will you need special teachers for him?" Well, yes, I will need special teachers for him. But the specialty they'll require will be more likely a gentleness about them, flexibility, and sensitivity to particular signs that may or may not be unique to Corban. He will not require special classes. 
You see- Cystic Fibrosis is often confused with Cerebral Palsy. I believe because as someone who is around it daily, I probably slip and call it CF instead of outright Cystic Fibrosis. Now, I have a very very dear friend who has a grandson with CP. He is the coolest kid I've met. Aside from my own of course. However, CP and CF are two very different afflictions. They affect different areas of the body. 
So, no, Corban will not require special classes. He will require what is called an IEP, but that is mainly just to protect him as a student and me as a parent, should he need to be hospitalized (knock on wood) at any point, or fall behind due to illness. This also will address medications in school, special snack and drink provisions, among other things.

2. This one is the second most common in my life. I have heard this every single time I speak to someone about CF who isn't...in the circle if you know what I mean. "Well, I hope he gets well soon."
No. You don't understand. He's possibly as well as he'll ever be. CF is degenerative. As in, he will get worse throughout his lifetime. 

3.  "How do they fix that?" This comes in many varieties. I've heard things like, "so that's like thyroid problems" or "like diabetes with insulin". Many people assume, (there's that word again) that it's just like any other easily "fixable" issue. An ear infection, with proper treatment, goes away. CF never does. CF doesn't have a cure. (Neither does Diabetes.) It has treatments, like diabetes does with insulin. Diabetes is a great example, as it complicates CF.  With CF...you eventually end up with diabetes. Rates are around 50% of all CFers. Corban is pancreatic insufficient.. That means it doesn't work. This is where diabetes falls into place. We have been told, not when but if. Again, not cureable. CF causes deterioration over time, and inevitably claims the CFers Life. 

Our goal with the Great Strides Walk each year is to help continue to raise those funds to research cures. There are studies out there. We just need MORE. There are 2000+ mutations of the CFTR gene. We need a cure for all of them. 

So, to recap, if you don't know...just ask. I'm more than happy to share! Those are the top three offenders that have come across my path in my feeble 5 years experience. Number 3 by the way, is one that on the right day, can send me into a downward spiral.

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