I was asked this question the other day and I thought it would be appropriate to share my answer over here as well...
What are 3 major needs as a whole you see within the CF community?
Exposure to the good stories. We're constantly assaulted by so many stories about death, sadness, transplants at an early age, etc that I think it's time someone focuses on only exposing the positive things that those is our community are doing every day.
To me, there's a big difference between being "real" and being "realistic". Yes, everything that happens in someone else's life in the community is in fact real, but is it realistic for you? Well that depends on the person. A lot of stories we here about others make it seem as if they had no control and CF was going to do whatever it wanted. Again, may have been the case for them, but I assure you that has never been the case for me and many, many others in this community. Many of us have more control over this thing than even we give ourselves credit for. Each and everyone of us can make the choice to make daily decisions to put ourselves in the best position to succeed. Generally, those of us who do well with that strategy have MANY more good days than bad. We're athletes, doctors, lawyers, stay-at-home moms, dads, husbands, college students and teachers.
There are PLENTY of good things out there in this community that never get talked about - I'm doing my best to change that.
Insurance. Insurance or matters of insurance continue to be a big need in any medical community that needs it. Some of the issues are because of the system, some are because of a lack of education and some are simply others putting their own agenda ahead of the need for insurance.
I'll be the first to say that I've been blessed to have great insurance my entire life. But, it must also be pointed out that my mom didn't run out and get the job that she enjoyed the most when I was diagnosed with CF, she ran out and got the job with the best insurance. Is it "fair" that she would have to place insurance needs before career goals? No, but that's the way it was, so she played the hand she was dealt.
Before Mandi and I got married, she applied to every job under the sun that had good insurance. Sure, there were plenty of jobs she would have rather done, but those jobs wouldn't have come with the benefits that we needed.
This CF life is all about choices. Unfortunately, there are times when what we want to do for ourselves, isn't what's best for what we need to do for our families.
Parenting skills. It saddens me to see some of the decisions that these parents make with their children. Successful parenting often results in a successful CF life, but unfortunately, the inverse of that is also true. Now, there are certainly exceptions to that rule, but as I said above, it's all about being in the best position to succeed. Sadly, I've seen plenty of parents in this community hold their children back way more than CF ever would.
We're often a direct reflection of our parents. The way they walk, the way they talk, the way they act, and yes, even the way they think. If you as a parent are embarrassed of this disease and think it should be a secret only for a select few, than most likely your child will see it as a scarlet letter as well. Can you imagine that? Walking around with this big secret as a kid that isn't going away anytime soon. That would be terrible. Yet, I still see it happening to this day.
Parents yell at their children for not doing treatments as they sit on the couch drinking a beer. They tell their kids to stop complain, yet piss and moan about their day at work. Be what you want to see. Model the good behavior that you hope to get from your kids. Think health and taking care of yourself is important for your kids? Then make sure that's it's just as important for you as well!! Want your kid to embrace this disease and do what they have to do to succeed? Then smile everyday and make it clear to them that you'll be there every step of the way, and make any sacrifice that you need to in order for them to kick some CF booty!
It must be noted that having good parenting skills is not exclusive to the CF community, however, the stakes may be a little bit higher.
So what do you think? Agree or disagree? What would you add to the list?