Would you REALLY want to know?????

I have a FB friend, sort of random, I know, but stick with me. Her kid is an Ebstein's kid just like Alex. Here's the problem...she's still pregnant. Oh and she lives in on a different continent. She could have a premie in 4 weeks, but knowing what I know about what they are going to do, what they need to do for the baby, I can't think of anything remotely supportive to say. We all know about me and "faith" and all that so there's no need to go into it again, but really, WTF.

I didn't know while I was pregnant, they just didn't find it, or maybe they sort of did but their concern was on other things that day, who knows, but I'm I still don't know if it would have made a difference. 1. TMC did not have Nitric Oxide which Alex totally needed to stay alive. I guess it helps them breath different in the first few days. It lets them breath slower...like fish...like they're in the womb. 2. I had no clue what EA was, of that it was any kind of big deal. 3. the worst thing is that, while he was in the helicopter flying to PHX and we were on I-10 I was hoping, thinking, (can't believe I'm going to admit this) if he is going to die then do it now. I had only seen him for 10 minutes, Tyson had seen him for 5, no one was invested, we could heal, we could go forward, we could get over it. All I could think about was Tyson and how my sweet boy was about to get royally screwed over.

Then we were there and it sucked. Every day was something. At least I was somewhere that gave you info...alot of info...broken down like I was a first grader. The balloon thru his heart, surgery, the breathing tube, Ronald Mc Donald House, taking turns sleeping in the PICU, the LIGHTS...if the lights came on at night you knew the shit had hit someones fan...hopefully not your fan. The death. Kids coming back from surgery with their chest still open, not really kids, babies, like Alex, all in the hands of people that we didn't know but had no choice but to trust. But every night, the same thoughts...um God, if you're going to take him, then do it...stop dragging it out. But as I said, I didn't know ahead of time so I'm not sure which is better...total shock and horror or preparing for shock and horror and having it be a big giant cloud over you all day, every day for months and months.

I asked Tyson if he thought it would have been better to know ahead of time. Now remember, Tyson is only 6. His answer "duh, mommy...he could have gotten to the "hoss-i- ble" faster, he could have had surgery faster", out of the mouths of babes right? So i think this is a pretty even, Maybe. I think I would have preferred to not know...no...knowing is better...shit, I don't know the answer. The only thing that I am sure of is that if I knew then, what I know now I would have had some different conversations with Charlie about having kids. Let me tell you this: if you are not on the same page with your spouse about medical issues ranging from immunizations to abortion to blood transfusions to aspirin vs tylenol...YOUR MARRIAGE WILL NOT SURVIVE. Am I on the same page as Charlie on everything...nope. Am I so damn scary in the hospital that residents cry and quake...yup. Charlie has a tendency to agree with me on most things, but when it comes to Alex he will NEVER make the decision about his care. It's scary. What if your wrong? Charlie doesn't want to be responsible for that...it's ok. If we had know ahead of time, we probably would have come close to a divorce. That should give you a glimpse on where I stand vs him on certain issues. We've had other talks about transplant. The waiting, Alex's age...what if Alex is 16 and has been waiting for a year and is on the verge of death and just wants to be done, to go home, without needles and IV's? That's the current discussion. We don't agree. Hopefully we'll have 15 years to reach a decision.