After a couple of "good" days, he woke up this morning with a corneal abrasion unable to open his eyes. We spent the whole day in the dark and will probably spend the next two days like that as well.
So needless to say, it has been a rough couple of weeks in terms of his EB and the pain he has been in. BUT this is my Facebook status tonight and it goes for you guys who faithfully read this blog too... even though I only post once a month... :)
Although I HATE EB and all it has done to my Jonah the last two weeks especially, I am overwhelmed (and sporadically in tears) over how incredibly loved we are. To know you guys are praying for him, thinking about him, asking how you can help... it's so good. His Kindergarten teacher, Ms. Pabon came over this afternoon, after teaching 11 other kids all morning, to visit with him and bring him audio books (and a casette player because ours is in storage), Grandaddy brought us milkshakes and told him approximately 107 stories, his other Kindergarten teacher, Ms. Boone called tonight and let him chat her ear off for 20 minutes to break his monotony, and Mimi Marykay came tonight with a stack of books to read to him (by flashlight because we had to be in the dark) and spent a long time entertaining both boys. So as much as I hate EB, I think about how much we might be missing out on if we weren't forced to slow down and let ourselves be loved. It's an important thing. To ask for help, to let people into your life, to be real with each other. To be vulnerable. I'm thankful for the hundreds (thousands?) who love and pray for us. And I'm thankful to know it. Fully.