Thursday, April 19, 2012

i hate you, eb

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.


mini and brother said...

My heart is breaking for you. I'm praying for quick healing.

I've read your blog forever, Jonah is beautiful.

The Newnams said...

No child or parent should ever have to go through what you all are going through. I am praying for you everyday. You have such a brave, tough, strong little boy.

Rebecca said...

I don't know what "EB rules" this might be violating, but can you set him in a tub of warm water and let him pee in it? The water dilutes the urine as it comes out so it won't burn. I'm a peds nurse and this is something we tell parents to try when their kids have bad urinary tract infections. It takes some effort to run a bath each time, but if it helps with the pain it would be worth it.

danielle said...

I think about u guys still.... and i hate eb too.. like you said no child should have to go through this. i am so so sorry. but he has the best parents for this. so much love. so much prayers maybe God some how will heal this. or maybe he will just come back for us very soon.. we love you and keep your head up..

Pati @ A Crafty Escape said...

Praying for your sweet boy and for a prompt recovery. Enough is enough EB!

Toni :O) said...

Oh sweet Jesus, this post had me in tears. I'm so sorry....I hope Rebecca's idea works for your sweet Jonut. I hope and deeply pray that he's healing. Hang in there sweet family! Love you guys and hate EB too (sucks big darn time!).