Wednesday, February 29, 2012

Rare Disease Day!

Today is Rare Disease Day.

Nope, it's not a coincidence that it's on February 29th!

As the mom to an adorable little girl with a pretty darn rare disease, I can tell you that it is ridiculously hard to deal with at times.

You're constantly educating doctors and breaking down the walls around those doctors who don't want to admit they've never heard of the blah-blah-blah syndrome you just spouted off.  Repeated internet searches are in vain because there's never anymore information.  There's no expert...oh wait, that's you!  You, the mom, are the expert.  Nobody can tell you what to expect at each stage because no two cases are alike and your child is pretty much one-of-a-kind because she doesn't have a primary diagnosis to cause this crazy-rare disease.

But then, it can also be pretty cool to know that God has entrusted you with such a wonderfully special little girl.  He knew that it would be tough and that there would be a lot of challenges to overcome, but He also knew that this gift would forever change your life and the way you think about everything.


So, Happy Rare Disease Day to you!  If you can, take a minute to thank God for giving Abby such a rare disease that has opened our eyes to a whole new world.

1 comment:

Raelyn said...

Happy? Rare Disease Day, Julie.... You have such a strong and courageous attitude!! I like it!! ;)
And.... Happy Leap Day, too!! ;-}