July 23,2007

The mama Ali and I have been discussing doing this diary for a few days and decided to get started. I won’t go back to the beginning. Hell, on the roller coaster I can’t really remember the beginning. I do want to start with a couple of ground rules. First of all, stop telling us it will be OK. If you are reading this, you are family or friend. We know you love us, care for us, pray for us, and hope for the best. That being said, when you experience what we have, you know there’s nothing to make us feel better. Last night, Jordan had bad blood pressure, and that really bothered The mama Ali. We got something to eat, got reassurance from the family, I comforted her as best as I could. She did not feel better until Jordan improved.
Second of all, when we say that you don’t know what it’s like, don’t take it personally. Being a parent requires you going through many stages, and you never know the experience until you’ve had it. You can’t appreciate the difficulty of toilet training until you experience it. You can’t appreciate how hard it is when your teenager dates someone bad for them until it happens. The terrible twos are funny for everyone else in the family, but hell for you. My son is 3 weeks old and I’ve never seen him with fewer than 3 I.V.’s in him. You can’t understand the heartbreak of seeing an I.V. in your son’s head until you experience it – and I truly truly hope that none of you ever do.
Third of all, we don’t know the future, and are afraid to ask. We don’t worry about things like coming home, or development or any of that stuff. We take it one day at a time, because things change day to day. He can be on the verge of death now, and better than ever in 36 hours (I’ve seen it happen). The doctors have made it clear since Flossie was admitted that his projections are poor. When the doctor’s speak to us, they discuss one of two things. They discuss the future and how bad they expect him to do, or they talk about the last few days and how well he has done. Don’t ask when he’s getting out, because it won’t happen for months. Don’t ask what the doctors expect, because they didn’t expect him to live this long. It takes 3 days to confirm infections in blood, worry about anything longer than that and you set yourself up for heartbreak.
Fourth, and most importantly, we know that if you are reading this, that you do care, and want the best outcome. We appreciate your support and know that you all wish you could help. If there is anything that we need, we will ask. If you really must act, then make a donation to your local Ronald McDonald House. We’ll worry about clothes and toys and stuff for Jordan when the doctors start giving us good news.