Tuesday, April 10, 2012


I can't cry. I don't know why I can't cry. I cried yesterday during Jessica's prayer service. But I didn't cry at the moment of her last breath and I haven't cried since. It's not that I'm not sad. I'm so sad. I just can't cry. We lose so many. Does it not take me by surprise anymore? Is my heart becoming calloused? Have the tears just run out?

I just don't know.

All I know is that I am PISSED. I am so mad. I am so mad at the eight lives that have been taken by EB in the last 14 weeks. I am mad that EB is an "orphan" disease meaning that is so rare, it gets little awareness, and very little money. I am ticked that the only possible "cure" is a very dangerous, often fatal, bone marrow transplant, which has taken many lives of its own. I'm frustrated that when I tell people in public that Jonah has a "skin disorder," the words sound so simple and inadequate for what these kids go through and the life threat that Epidermolysis Bullosa really is. I am SO MAD.

And I'm manic. Not manic in a happy way, but in a that's-enough-this-has-got-to-stop sort of way. It is too much. TOO MUCH. I have gotten more accomplished for Jogging for Jonah today than I have in the last two weeks combined. At this point, it's pretty much a "If you're not going to help me, get out of my way" sort of mentality. (I think it was Jesus who said that... ahem.)

I'm not saying that it's wrong not to be crying or right to be mad. It just is.

If you are far away and can't walk/run with us and don't want a t-shirt, but would like to donate toward research for a cure, you can donate HERE on my DebRA Jogging for Jonah fundraising page to sponsor me as a runner. All the monies collected go to the same pot, so it doesn't matter how you go about it. For t-shirts, registration, and/or to be a business sponsor, you can go to http://debra.org/joggingforjonah.

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