Why Me, Why Us, Why Brody?

I have to be honest…I had a hard time understanding why we were given Brody the way he was, especially in the first week. I mean we had never intended on having another baby at all. We didn’t find out until we were almost 6 months along that we were even pregnant. We barely had time to get things ready for him and then to be dealt the blow that we were…I just had a hard time with it. I questioned God. I wondered what on earth Chuck and I had ever done to deserve this. I started to apologize for every bad thing that I had ever done in my life and promised that from now on I would change and be the best person, mother, wife, friend, daughter that I could possibly be and do only good if he would just take this awful disease away from Brody. One night about 5 days after Brody was born, Chuck and I went out just the two of us for a few hours. We had a long drive and on the way home and Chuck said, “So, do you want to talk about it?” We hadn’t said anything to each other before this…we hadn’t cried in front of each other, we hadn’t talked about the what ifs, nothing. So I started talking to him about the whole why us thing and what did we do wrong? He said he had those same thoughts right after Brody was born and it took him a few days but he decided that we weren’t given Brody in the condition that he was in because we were bad parents or we were being punished for something. God gave us Brody because he knows that we are good parents and we will do everything in our power to make sure Brody gets everything he needs. He mentioned, “Just think of what would happen if he was born into a broken family where there was very little love and very little income of what might happen to him.” And right then and there we both agreed to keep this same outlook…I mean, we really had to if we were going to get through it. What’s done is done, no need to dwell, but learn what we need to do and move on the best that we can. Now, don’t get me wrong, I still have my days…those days where I read about another baby who has died from EB and it makes me so sad and so scared. Those days where I look at his cute little face and realize there is a big chance this is the only skin he’ll ever be able leave unwrapped. Those days where I realize he may have to rely on a wheelchair for most of his mobility. Those days where I look at him and wonder just long he will live. Those nights when bandage changes last for 2-3 hrs and he cries and fights us the ENTIRE time and we’re lucky if we make it through without causing more wounds to him. And yes I’ll even admit I’ve had a time or two where I was feeling very sorry for myself. I remember one time when he was 4 months old I texted a friend of mine and asked, “Is it bad that he’s 4 months old but I want to say it’s ONLY been 4 months since this whole thing happened and I might have to do this every day for the rest of MY life?” How awful for me to think that when it is Brody that this is happening to, not me. But that little guy is just so stinkin cute even if I do start feeling like this, he just melts my heart and I know that he’ll love me no matter what.