You know what I said on Monday? I said, "Jonah's skin is the best it's been in his entire life." And I actually wondered and hoped for a moment that he was outgrowing his EB. I am so stupid.
I should have known.
Yesterday morning he woke up with his little man part blistered over. Like where his pee pee comes out. Closed off by a blister. He is holding his pee for as long as he possibly can and then when we finally convince him to go, he is screaming in excruciating pain. And his pee is coming out at a 90 degree angle, so he's peeing all over the walls, the floor, himself. He is in so much pain when he's using the bathroom. I've been in tears with him.
And how long will this take to heal? Every time he's going pee pee, he's reopening the wound. This is so crazy. It's one of those times I'm asking myself, "This is all a bad dream, right? Something so horrible can't really exist, right? This has got to be some kind of cruel joke."
I am so angry. I don't understand why God allows this. Why doesn't He fix it?
I hate you, EB. You are of the devil, and I hate him too. You are both evil and full of pain and suffering and death, and I can't wait until Jesus comes back and you both rot in Hell forever.
Please pray for my Jonah. My heart is breaking for him. Not being able to help your child has got to be one of the worst feelings ever.