Come at me bro

I joined two facebook communities for people with Primary Immunedeficiencies (PI). Some days I think that was such a total and complete mistake. One of them is a community for "Zebra Moms." Of course this is where parents facing the fear and battle of raising an immune-deficient child go to tell their horror stories... no one else understands, but I'm starting to wonder if I can continue to read these stories and maintain my sanity.

I've been reading about how these kids have to stop their infusions because insurance wont pay or because a doctor just isn't convinced that there is "actually" anything wrong. It makes me crazy. I reply over and over and over "trust your instincts momma and keep fighting until the doctors do, too" It's everything I wish I had done and everything I'm doing now.

These posts have also made me realize something. Yes, we are battling the insurance company, yes, this treatment is going to be hella expensive, yes I'm terrfied, yes yes yes...

But we also have two doctor's offices going to bat for us, calling every available resource, faxing in paperwork, filling out claim forms, calling us to check in, emailing every other day. I have a "little" brother who organized a gofundme campaign that has raised more money than we could ever fathom and is threatening to kick someone's ass if more doesn't come in (ya gotta love that about brothers). And we are far from defeated. Unlike those who are unuse to having the crap kicked out of them daily we get up of the ground, wipe the blood from our wounds, and say "bring it on." We're fierce as all hell people and we are going to get our child what he needs, period.

I suppose there is some twisted sort of power that comes from knowing the worst. The worst is not a second mortgage. The worst is not weekly or even daily trips to a phlebotomist or IV tubes connected to my son. The worst is a casket.

I'll do whatever it takes. That, my friends, is power.

Until next time.