Tuesday, September 22, 2015

Curated Content for Your Viewing Pleasure

I've recently read some seriously amazing articles and blog posts from friends that I want to share with folks who read my blog. These people, though they may not have CF or even know what CF is, speak my language. They've found a way to put to words what so many of us, across disease boundaries, experience but simply cannot articulate. They're a bit all over the map but they're all so good. I've tried to include a preview from the posts, to share with you why I love them so much. I hope you'll enjoy them too!


A Mom Advocates for Wholeness in Health Care
“Health is woven into the cloth of life, and to divide it into separate pieces labeled ‘school’ and ‘work’ and ‘family’ unravels the entire fabric,” said Cristin. “Yet the very systems meant to support my son, Gabriel, often tried to do just that. Accessing and coordinating his services became a greater challenge than his actual condition.” "I’m not a doctor or a systems expert or a policymaker. I’m a mom. My only expertise is my experience."

Trapped in the System: A Sick Doctor’s Story
"There is no bad guy here. I love the drug company that created this medication. The price is more than reasonable. I love the doctor who prescribed it to me. My insurance company has never refused to cover my care, and has always been honest with me. The laboratory personnel are professional and competent. It’s the system — the way all these things work, or fail to work, together — that’s the issue."

How can I minimize my chances of having a disabled child?
"I am grateful to my "disabled child" for teaching me one of life's most valuable lessons: the importance of using our hauntingly brief time on this planet to do the things that matter, the things that will make a difference -- the things that are inspired by love and guided by knowledge."

Remember the mothers of sick children
For the rest of us who look at these mothers and think, “I don’t know how she does it,” know this: It’s not their abilities that are superhuman, it’s their love. It is this intense love for their child that pushes them out of bed every morning and forces them to keep going, no matter what odds are stacked against them.



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