Tuesday, March 19, 2013

Knock Knock....

Insurance. What a conundrum this is. I have spent the last four hours- FOUR HOURS- on the phone, online, trying to unravel and understand their terminology, trying to find appropriate providers, trying to pay bills, trying to get anything done. Four hours, trying to get someone to clarify a legal definition of 'usual and customary' that they apply to their decisions to pay or not pay. Good times.

Usual and customary, my arse.


Insurance companies decide to pay on claims based on what is "usual and customary" in your area. There is no one that I have come into contact with who can define this for me. Does it mean "usual and customary" in Denver? In the midwest? For normal healthy children? For someone in the same demographic with the same diagnosis? For North America? For what and for whom?

Apparently, they don't know. I don't know. Google doesn't know. The insurance website and customer case manager don't know.

I have excellent insurance, a plan that makes most of my friends green with envy. I am very grateful that I have insurance because it opens doors that might otherwise slam shut.  However, opening those doors should not require four hours of secret handshakes, whispered codewords, and headstands. Just let me walk through the door and take care of business. Period.


Thursday, March 7, 2013

Itty Bitty Truths.

Someday, I want to write all of the truths. Lay them bare, with no gentleness or blurring the hard edges. I jot bits and pieces of the truth here, but I hold so many close to my chest, both to protect me and to protect my loved ones.

Sheer happiness. 


Lisa tells me to write my story. She tells me to tell my truth, but I always resist laying it out there. 

This week has made me want to just do it. I have been surrounded this week by other parents and loved ones who are going through what we are going through. I have been moved to tears more than I thought I would be, both by other people's hurts and the realization that my experiences are shared. I have seen myself in other mothers' and fathers' eyes this week and I have wanted to make their pains go away, along with mine. I have found the strangest sorority I would have never thought I would be a part of. And yet, here we are. None of us want to be here, and yet we are so relieved to finally be here.

Truths. Itty bitty ones. Right here. Some people will think that you can cure illness like a run through the washer- soap, rinse and spin. Maybe a second spin cycle just to be sure. It doesn't work that way. a lot of illnesses, you have to work at being part of the cure. You have to show up. You have to fight for it. It isn't easy or convenient, but you fight the good fight for your loved one. 

Take the good for what it is. No matter how small, how tiny, a victory is a victory. Celebrate it. Those tiny blessings will give you strength during the hard times.

Hug your kiddos. Hard. And often. 

On that note, hug everyone you love. Hard. And often.

That quote that we have all had flit across our Facebook about "Be kinder than necessary, for everyone is fighting their own battle"- remember that. It's true. Except for He Who Must Not be Named.  He's an asshat, so you can actually connect your steel-toed boots to his dangly bits. Everyone else, yes, be kinder than necessary.

Recognize that no matter how alone you feel, you are not. There is someone else, or an entire community of someone elses out there that are going through exactly what you are going through. Search them out.

Breathe. In and out. Repeat.

Lather, rinse, repeat.