If You Hear Hoofbeats, When You Turn Around, Don't Expect to See Zebras
I ran across this post which involves two things very much of interest to me:
http://articles.complexchild.com/jan2011/00262.html
Which then, through the obligatory research that would ensue because I'm constantly curious, ran across this amazing TED Talk:
Edward Fennell talks about how his granddaughters--both "zebras" (born with rare disorders)--affect his life. One with CDKL5 and the other with short bowel syndrome.
Mr. Fennell does an amazing job at laying out what it is like, from a high level, to take care of a loved one with a rare disorder.