There is so much to do here and I’ve not been blogging. Training for Chapters of the PKD Foundation. And sessions with awesome doctors talking about things I’ve heard before but never tire of hearing again, because we’re still in the fight long term as advocates for the kids. Today was nutrition (still helpful), the Science of ARPKD (had a light bulb moment when a doc explained something complicated about genes), and CHF (liver stuff that was graciously presented by Gage’s hepatoligist).

I’ve been hanging with other moms, which has been completely freeing. Not just because the majority of us do not have kids here, but because we can always be moms of sick kids selves. It’s an important for me to come to the National Convention because of the understanding from the other parents. It’s one place where a look between each other speaks volumes. It’s one place where it’s okay to laugh about the insane situations we find ourselves in with our sick kids. And it’s okay to talk about mutations and being mutant. it’s also the place where newcomers to the conference have glazed looks on their faces when the speakers talk about kidney failure and dialysis and transplant and the effects of ARPKD on their child’s little body. It’s the place where the same people find other parents who have been there and understand. The other parents who are attending their 2nd or 5th or, like me, their 7th Convention.

We’re all still here to learn. We’re here for each other. There is hardly an hour that goes by that I don’t think about that first time I walked into a session and met Dr. Wonderful, who empowered me with information. And confidence to be the advocate that Gage and Quinn needed. I think about how I met the people that would walk with me and share their own stories that are similar, yet different, but always familiar to our story.

And I don’t feel alone.