Tuesday, June 28, 2011


I'm feeling a little blue tonight. I just got trapped in Harris Teeter for a while (have no idea how long) because of a bad storm and still had to eventually give in and go out. Soaked to the bone, loading groceries, afraid of lightening, no fun. That's not why I'm blue but the weather has kind of reflected my mood.

And I've missed my run the last two nights because of storms. It's not that I crave the running (don't be crazy) but I crave the time with my friend, Barbara, and I crave being outside. AND, I haven't run since Friday, and I just don't want to take any steps back.

But the real reason I'm blue and what's motivating the funktification of everything else...

We have lost three EB babies in the last five days.

The first was Lucas, one month old, with Junctional-Herlitz. His dad and I corresponded by email early last week. He passed away on Friday.

The second was Baby AJ, 14 weeks old. I'm not sure what type he had, but he died on Sunday.

And the third, Friends, was sweet Baby Malachi, two months old, the baby boy I had the privilege of getting to know and help with for a few weeks in April and early May. He was here at our local NICU, and his mom and I have regularly emailed back and forth and shared several phone calls since they've been home. They had just found out he was Junctional-Herlitz. He died on Monday morning.

When I think about the three families who have just had their tiny babies ripped from them, I think about the loss of our own tiny baby, and I think about all the things that EB takes away from Jonah, from our family and from countless other families all over the world, it makes me so angry. Why is it allowed to rob us of so much?

Run free, sweet babies. Our hearts are breaking, but your hearts are full, and your skin is whole.

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