She did it again! (Day 8)

I am really thinking that this girl was aptly named. So far the more hardship foisted upon her the the better she does. We finally got a surgeon to remove the drain at 6:30 PM. She cried once and that was it. The Dr. put a yellow bandage over the opening and taped it down. At he same time he opened up the midline incision because 48 hours had passed since her surgery. She was fussy for a little bit and then Amanda began to sing to her and she calmed down and started making lovey dovey eyes at mommy. At the end of our visit she was gnawing on her hands. A sure sign she is looking for a meal. Unfortunately the Dr.'s now want to play the conservative game so she will not be given any milk until tomorrow AM. It is hard to leave your child hungry. Luckily Amandas singing calmed her down enough that she was actually drifting off as we left her pod. She may have started screaming bloody murder right after we left, but for that small moment in time she was quiet and I could pry her mother away from her side.

I met a five year old boy at the house I thought his name was Josh, but it is really James. Can't remember if I have talked about him on here or not. His mother took him to the Dr. for a routine test and discovered he has several brain tumors. They operated in September and got a lot of them out, but there were some that were too close to the brain stem. He will have to have Chemo soon. He is such a perfect little boy. I asked him the other day if he could stop smiling and for several minutes he tried to... but just couldnt do it. The Ronald Mc Donald House has been getting the family tickets to the zoo and even hockey games... (He liked the fighting but was pretty ambivalent about the sport.) They also make sure that while he goes to the game he gets to meet some of the players. This is a first rate organization. It has been hard to deal with an illness with Bayta. It is hard for me to believe that less than a week ago I did not even know her. Already I love her in a way that only parents can understand and I would do anything to make her happy. What would you do for your five year old child? What if there was nothing you could do?
This week we got word that another Omphalocele mother lost her baby pre term. How difficult would that have to be? She was brave enough to write to the other mothers sho are dealing with their own omphalocele children... and told them what the procedure was like so in the event it happened to them they might not be so scared.

I have literally squandered the many gifts I have been given. I do not think I have the courage of a shattered mother or even for that matter a five year old boy... and yet I call myself a man. We all live these highly sheltered lives believing that it wont happen to me or to my boy or my wife... when the reality is that it will. Maybe not today, but it will. One of the followers of this page told me they went and hugged thier child as a result of reading this blog. That was an unintended consequence of this site. I hoped to have a vehicle to talk about what we were going through and to maybe act as a guidepost for other "O" families on their journey through this diagnosis. However if it makes us even take one second to appreciate how special and fragile the loves in our lives are and how meaningless everything else is maybe Baytas Battles will have been worth it. I never want to be in a position like I was on Friday again. In a split second I would have given up my home my cars my stuff and my life and not even thought twice about it just to have my precious daughter safely in her mothers hands again. I have never been that helpless and scared in my life.

I have had a few people tell me that this happens for a reason. That God has chosen Amanda and I for a reason. Because we are strong. To accept that is to accept the premise that the children that are taken are done so because their parents are weak. I know it is meant well from the people who say such things, but this is something I can not accept.

In the group that is reading this blog I know that there are people who believe in God because of the overwhelming proof of his existence and those that reject him looking at the exact same facts. I have through my life been on both sides. I thought when I was younger I would have the questions of Gods purposes completely worked out by the time I reached the ripe old age of 30 much less 35. I admit categorically I have yet to figure it out. All I know is that a five year old with a smile on his face is the closest I have come to seeing the face of God... and I think the trick to getting through this crazy mixed up world is figuring a way to focus on being more James Like and less like ourselves. Like it or not we all have a date coming up that will be here before you know it. You can spend those days watching tv or living. I believe my God will prefer the Darick that has lived like he had an inoperable tumor than the one who has made himself so comfortable that he can not feel the pain in his life much less the lives of the James in his neighborhood.

As bad as this experience has been for my family... I am now in anenvironemnt where I am the lucky one. I hope you know how lucky you are. Life is so precious lets all go out there tomorrow and make it better for the James of the world.

Sorry... to go so far off topic... it has been eating at me for a while.

Goodnight.