Sunday, July 30, 2006

It Isn't Fair!

Tonight, despite the wonderful things that have been happening, I want to kick and scream and stomp my feet and shake my fist at the sky and scream about how unfair it is. It isn't fair, damn it. It's not fair. Thankfully, these moments are short lived, and by morning I'll remember how lucky I am despite it all. Sometimes I lose sight of that, but even when I'm in a tantrum throwing mood, I'm aware on some level of the number of blessings I have to count.

I have gotten several messages through the Yahoo! grief support group I belong to about medical bills that come in after the child's death. The sad reality is that hospitals are businesses, and only rightly so. Regardless of the outcome, there has been much time, effort, expertise and expense put forth in the attempt to save that child's life. They deserve payment, regardless. This isn't a problem I've had, since I got the paperwork snafu straightened out, but it is an issue that many bereaved parents face. All I'm going to say is that if I were to get a bill from CMC or from the Sanger Clinic, I'd bend over backwards to get it paid, I mean, they were all so wonderful to Nova and to us while he was in their care, and have continued to be since his death. I still feel lucky to have gotten to know all the patient reps, nurses and doctors (with the exception of that one whose name I won't mention again.) But when Alexis died (same doctors, same nurses, same hospital) I reacted to my loss very differently. I was angry and bitter, and after her death, I was getting bills... The first of which was nearly $90,000. I remember being outraged and thinking how horrible it was to get those bills. Luckily, again, it was all straightened out, but I did make one not-so-nice phone call that day, which of course ended with me dissolving into tears.

I regret the anger I felt after her death, but I've said it before, and I'll say it again - it saved my life, being angry was the only thing that kept me from blowing my head off. It was absolute rage, or total despair, and luckily, I was angry enough to survive. My point being that I can't blame anyone for being angry after losing a child, it may be their saving grace, and far be it from me to judge them for it.

I have avoided the anger, for the most part, so far, since Nova's death, and I haven't really experienced the need for it the way I did with Alexis. I'm more OK than I was then. That isn't to say I don't get angry. It's hard to read other people's miracle stories, or even the every day success stories sometimes, without being a little jealous, a little resentful. I can't help but wonder just what the factors are that ultimately decide who does and who doesn't take their baby home for the happily ever after. It isn't fair, but I've already said that, haven't I?

When Nova died, someone contacted the funeral home that handled his arrangements and promised to pay the bill in full. Working with that in mind, they did some things they wouldn't normally have done in a situation like ours. They put in a paid obituary (at a price of $80+) and applied for the death certificate for us, and did some small things like that - because they were promised full payment from an outside source, because frankly, when we contacted them, we were completely honest about our financial situation, and the fact that there just wasn't room in our budget for a funeral.

After his death a lot of people sent money... We used it to do a lot of things, like beautiful flowers and we used part to pay our rent because Scott had missed so much work from being at the hospital so much, it wasn't a fortune by any means, but it was a little something, especially considering the funeral arrangements were being paid for.

Well we found out shortly after the funeral that the outside source who had promised that had withdrawn their offer, leaving us with (most of) the unexpected bill, again, and all the "extra" money had been used already. Then we were told by another anonymous person that they'd take care of it, and we stopped worrying again. A couple of weeks ago we got a call from the funeral home, to let us know we still had a fairly good sized balance remaining on our account. Now that, yeah, that made me angry. How can someone, two someones, renege on a promise like that? I mean, what is the point of making a promise like that if you can't follow through. We've now been hit with that bill three times!

So I'm angry about that, but more discouraged and hurt really. I'll probably have to go back to work to pay for it, and then I'll have to work on buying the headstone... Neither of my children have headstones yet. Oddly, that doesn't bother me so much. I can't make myself visit the cemetery anyway. I don't believe that "my children" are there. Sure, their bodies are, but they aren't. Of course I'd love to be able to get headstones, but in my reality, I have 5 living kids that I have to take care of, and my priorities have to reflect that.

It isn't fair, but I also don't feel that gut-wrenching soul-eating anger about it. My babies know I love them and miss them, and I don't think they're very worried about headstones. They leave that for the living to be concerned with.

So what am I rambling about? I'm not really sure. I guess this is one of those decompression posts where I just needed to vent and gripe and be a little whiney, and in no particular direction, on all sorts of subjects. I've vacillated all day from frustrated to weepy to happy to silly to lazy to weepy again.

Blessings #49875 - blogging (so I can pour it all) out, and #49876 - having a family that loves me even when I'm being difficult to love.

posted by Erin @ 1:54 AM   0 comments

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Donovan "Nova" LeClair

Monroe, North Carolina
Nova was our second child to be born with congenital heart defects. We lost our daughter at 12 days after open heart surgery in 2001. Nova was born 12/2/05, with Pulmonary Atresia with VSD. He lived 6 weeks after surgery, and passed away on April 6th, 2006. This blog is his story, and the on-going story of how our family is dealing with the loss of our beautiful boy.
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