blessed

well, i made it through the school day. it wasn't as bad as i was afraid it was gonna be. pretty much the only people that know about jonah's condition are my friends on facebook because they have joined his prayer group and i got to talk to them while sitting in the waiting room after everything happened (thank you for wireless Internet). i talked to them about it today but not many other people. i am SO proud of him and want to brag about him but maybe just not now. i mean, i don't even know what to say to people when i tell them about his case of EB because we really don't know much about it yet. it makes it hard when you don't know what kind he has or anything. every time i explain what jonah has, people bombard me with questions that i cant answer. is he going to be okay? how's he doing? will he live? well, i don't know if he will be okay. what exactly does okay mean? i don't really know how he's doing either. he's a tiny little baby fighting for his life and in that way, he's not doing well at all. but on the other hand, he is a STRONG little butterfly baby doing a very GOOD job of fighting for his life....so, yes, he is doing well. and i have no clue if he will live. i wish i could say yes, but i cant. that's not my decision. that's God's. maybe that is what i should say to people. but knowing kids at school, that wont stop the questions. its so hard going from being surrounded by your family who are all Christians and KNOW that God is making the decisions to being surrounded by many non-Christians who don't even believe in God. i would try and explain to them how God is in control but that is such a hard thing to explain. i don't know why God does the things he does, or what he has planned next. trust me...I've tried to figure it out, but its not something you realize all of a sudden, and when saying that to someone who doesn't believe in God you're gonna get some very puzzled looks and more questions. one thing i DO know is that God will get me through this and provide the right words for me to say to other people, and for that i am thankful. one thing i have recently learned is that you have to give your worries to God and let him handle things. it's a lot harder than it sounds but I'm getting better at it. knowing that God has his arms wrapped around our little jonah is the only thing that gets me through the days at school...and everywhere else. everything will be fine. i just gotta keep telling myself that. on the post before this one someone gave me some very good advice; no one who hasn't dealt with EB before is never gonna understand. that's why you have to tell them about the person and their personality and get people to see past the bandages and blisters. i am determined to do that with jonah. i can already tell he is going to have a wonderful personality and he's already just so darn cute. i will make people see that, even people who don't understand. that same person who gave me that advice also told me about their son who is also in 8th grade AND has EB. like 8th grade isn't torture enough. i have so much respect for that boy. he has to deal with weird questions all the time and i know it has to be hard. it makes me realize how blessed i am. i have never really had to deal with anything like that. the closest thing is having this back brace and that can't even compare. my goal is to start focusing on the good things in my life and not so much the bad. i gotta count my blessings.

...blessing number 1 - jonah.