The words right out of my head
To say that the world feels small right now is an understatement. My husband (a University of Wisconsin Alumni) occasionally listens to a Joe Rogan podcast and happened to tune in to an episode with Everlast as the guest.
For those of you who don't know who Everlast is- don't feel bad, neither did I. Just put on your best, baggy hip hop gear and take a moment to listen to the 1991 hit: Jump Around, by House of Pain. Everlast is the lead singer/rapper.
Jump Around is also the 4th quarter tradition at University of Wisconsin football games. I have yet to jump around at a Badger game, but it's on my bucket list (ahem, husband).
Anyway, back to my post-
About 1/2 hour into this podcast, Everlast starts telling the story about his daughter's Cystic Fibrosis diagnosis. WHAT?!
See what I mean?! "Small world" just doesn't describe this crazy coincidence. Obviously, the Google searching began immediately and my husband found this article written by Everlast.
It's absolutely worth the read. I don't think I've ever come across something that so closely mirrors what's in my own head. It is as if Everlast climbed into my soul and put all my feelings and thoughts down on paper.
Just this paragraph alone finally puts words to the feeling that's been eating me alive since the day we got Avie's diagnosis:
"Hey, here's this beautiful baby girl and your only job is to protect her and keep her healthy even though no matter what you do, the disease is going to progress. Also, here's a long list of all the little ways you can fuck up and the test will be graded by your daughter’s health. All that you can do is hope to contain and slow down that process and pray that the scientists and doctors get this thing cured or treated faster than it can degrade her bodily functions"
And it doesn't end there. He goes on to say so many things I've already described, and even talks about my some of my fears for the future as well.
I thought it important to share this for a couple reasons, the first of which is that I am sure there are other CF parents out there who would like to have their feelings validated so poignantly. Reading this is like a giant, painful exhale. A screaming "YES! That's it exactly! Thank you for putting it so perfectly" and then breaking down into tears of frustration and pain for the ten-millionth time.
Secondly, I wanted to share this for those of you who don't have a child with serious health issues. This is to shine some light into a very dark place in which we parents struggle with something that we have no control over and yet are, at the same time, completely responsible for managing 100 percent of the day.
So please read his article all the way through, then when you're done reading- share it.
When you're done sharing... go donate to the Cystic Fibrosis Foundation