Wednesday, February 17, 2010

Insurance Hilarity...And a day tinged with sadness.

Ok, so you may think from the title that I am going to wax poetic again about health insurance.


The only thing I have to say about the health insurance front is that I think we are (mostly) done with medical bills from Charlotte. I did get one last bill from MCV for some leftover doctors visits. I had been round and round with Humana and MCV and I think they billed it incorrectly. Supposedly it was fixed but then I got another bill....

The upshot of all of this is...I will pay the bleepin' bill. In the grand perspective of things, it's nothing. Charlotte racked up over $700,000 (yes, those zeroes are correct!) in medical expenses last year and I think we paid for less than 10% of that out of pocket so I'm not going to nickel and dime the insurance company any more.

As a small aside, Roger and I have been most impressed by those in the medical community who have followed our story and contacted us in the last few weeks "just to see how we are doing". We have received cards and phone calls from my OB-Gyn, Charlotte's pediatrician (Dr. Weber who made the initial diagnosis), many of the staff from MCV including those who never even worked directly with us, people from our health insurance....the list goes on. It just feels good to be more than a number in their eyes. I know from working in health care that sometimes you have to do your job with a certain lack of emotion. If you get too caught up in it, you will go crazy or burn out (and I never even worked in a field with life or death situations like emergent medicine or oncology). That being said, it is so touching to know that these people didn't just look at Charlotte (and us) as just another cancer family. Or, hopefully, we are just another cancer family and this is how they treat everyone. These people deserve all the support, respect, and praise we can give them. It's a tough job!

Ok, I'm getting distracted. Back to the insurance story. I had to make some phone calls about a general liability policy for the Foundation. During one of my calls, I spoke with the man who answered the phone (the agent) and told him what I was looking for. He started asking very probing questions about the Foundation. What is it for? Who will it help? Do you and/or the members of your Board have any experience with nonprofit organziations (Um, yes sir. A combination of at least 50 years experience just in nonprofits alone. Not to mention the years of experience in organizational management and general quality business practices.)

The interrogation continued: What do you do for a living? What is your background? What does your husband do for a living? What is his background?

Are you getting the picture?

Then the questions got a little more inane. Actually, they weren't even questions but statements:

Him: Well, you know, it takes a lot of money to start a foundation like that.
Me: Um, yes sir. I am aware of that. It's all part of the plan.

And then it got interesting...

Him: So how did you decide to start this Foundation?
Me: Well, my daughter was very sick last year and when she passed away we decided to start a Foundation in her honor.
Him: Your daughter died?
Me: Yes, sir.
Him: That's TERRIBLE!
Me: Yes, sir.
Him: No, I mean, when a child dies that's just about the worst thing in the world!
Me: Yes, I can pretty much agree with you there.
Him: How old was she?
Me: She was four years old.
Him: Are you kidding me? That's just terrible. Horrible. That's just so sad.
Me: [Truly at a loss for words. I mean, really. Am I supposed to be comforting HIM???] Um, yes sir.

Fortunately, the conversation kind of shifted at this point. We talked coverage needs and policy parameters. All that objective stuff. He got a few more points of information from me, including my date of birth and Roger's date of birth just in case the underwriter needed it. At this point he says. sound a lot younger on the phone. I suppose I will take that as a compliment. I guess I sounded like a young kid just starting a Foundation "for kicks and giggles" until he realized how old I really was.

So there's your amusement for the day.

I need some amusement. As I mentioned before, the emotions have been riding high lately. It's very difficult to explain because I'm obviously not incapacitated by grief. It's like a low-riding hum. I just cry a lot. At silly, small things. I miss her. I miss going to the store and filling my cart with Macaroli and chocolate milk and anything princessy. I go to the Hallmark store and see cards that say "Happy Birthday Mom" and it makes me cry. And it's not even my birthday! I just realize that I won't get one of those. At least for a while. That's when the emptiness hits. Nobody bother me in May, please. I will be a MESS. I can already tell.

Fortunately, I have wonderful friends who take very good care of me. Well, us. People still bring us meals every once in a while. I've gone out a few times for drinks with friends. I get care packages in the mail (Amy, you're the BEST!). It all helps in small ways. It doesn't take away the sadness but it helps me cope...and sometimes I can forget.

Changing subjects, I just got a freelance gig with VOPA: The Virginia Office For Protection and Advocacy. Someone in their office got my name from the presentation that I did in Lynchburg last fall on Augmentative Communication and they have brought me in as an EXPERT to consult with them on some issues with adults in state facilities. Yes, the word EXPERT is actually listed as my title in the contract. I find that highly amusing. The project will be about 3 months with meetings, site visits, and some collaborative training so I think it will be interesting as well as a good way for me to keep my professional chops up.

The most interesting part about this to me is that I met with them WAY back in November. It was right after Charlotte's condition was deemed terminal. I went to the meeting not knowing where it would go and I never told them about Charlotte. They asked for a proposal and we traded emails back and forth after the meeting. I let them know that I would be away for a few weeks for vacation and then, of course, the holidays happened. When I talked with Roger about it, he advised me to just take it one step at a time. If they wanted me to do something and I wasn't able, I could just tell them at that point. So I didn't say anything. The holidays came and went. I didn't hear anything and by the end of January I just assumed that they had decided to go in another direction. Sure enough, I got a call last week from their office saying that they apologized for the delay but they were still interested and wanted me to come in to review and sign the contract. So whaddaya know?

My final topic for the day (you're getting a nice novella today, aren't you?) revolves around fundraisers. Some of you have contacted us about using your business as a fundraiser for CJSTUF (Usborne books, Tupperware, Pampered Chef, etc.). I know that some of these are already in the works but I think I may have lost a few emails.

First of all, if you contacted me or Roger and we never got back to you, please contact us again.

Our friend Erin is going to do an Usborne books sale at Romp n' Roll on March 11th. More details to follow.

Also, our friend Susan Ferguson is hosting a Pampered Chef party at her house on March 16th with Jessica Pittman as the consultant. Jessica is a Romp n' Roll mom and also works under Marie Snyder who has always been my Pampered Chef consultant. (PS Happy Birthday Marie!).

Finally, one of the Moms Clubs will be hosting the Book Sale at Romp n' Roll again on May 6th. They did a used book sale in December to benefit CJSTUF while we were at Disney. I think this one will be even bigger and better!

All of these events will benefit CJSTUF.

We will get more details out to everyone once I have official details like times, etc. We will add them to the events calendar. Again, if you have an business or organization that would like to raise funds for us, please go for it and let us know. We will be happy to help promote it in any way that we can. Please also know that the Foundation isn't going anywhere. If you need to wait to hold a fundraiser until we reach nonprofit status (goal: by July!), that's ok. We will always have the need for fundraisers and I don't want people to get burned out on asking for money in CJSTUF's name in the first six months or year. It's like a 'gotta pace yourself.

Ok, the carpal tunnel is kickin' in so I am really going to wrap this up.
Spring is coming. I can feel it in the air. Let's just get through the rest of February!


  1. hi Roger and Rachel, this is just a comment to say I've been thinking about y'all and continue to keep you in my prayers.

    p.s. that isurance man sure did seem to be a bit of a goose...

  2. As usual, I'm still so in awe of how you and Roger seem to continuously think of other people's thoughts and emotions in spite of everything that has happened to your family...the healthcare community being the perfect example. You are an inspiration. If we could all spend more time thinking of the other person's perspective, what a wonderful world this would be indeed.
    (And no, I'm not in the healthcare industry!)
    Kathy Rhodes (Max's Mom)


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