Thank you!

I recently received a thank you message from a parent who’s child has just been diagnosed with CCHS. It’s humbling to read such a message when in my mind I originally started this blog simply as my own private therapy session. Getting thrown into this CCHS lifestyle, as I can now jokingly refer to it, can certainly mess with anyone’s sanity and none of it comes easy or naturally. It’s a huge learning curve that no one would voluntarily choose to go through and each year the battle simply continues. Receiving that thank you message couldn’t have come at a better time either. We’re in the midst of yet another big hurdle and hearing that my honest, straight forward, raw emotions approach of detailing our journey has helped another family going through similar struggles, well that just makes this whole “lifestyle” a little less scary, a little less lonely and makes my writing about it all a little more rewarding.

So I want to thank this parent for reaching out to me, unknowingly giving me a little more strength to continue this battle, and for encouraging me to keep writing about it all, not just for my own sanity but also to help guide other parents along the way. Thank you for reminding me that writing and sharing experiences is important!