No News is Good News

The visit with Breland took longer than we expected. He had an emergency C-Section to attend to, so we were shuffled in and out through a two hour procedure just to see him. It took him a minute or so to even find Beckett's heartbeat and that scared me so badly, I literally felt pins in my skin as my adrenaline surged. When he found the little sound, it was distant but very fast. She's still alive and her eager heart is thumping just as hard as it can.

We went over the schedule for the next few weeks. Visits here, doctors there and another trip to his office in two weeks time. Nothing has changed so far, and that's great news.

The other night, I took some time to do some more research into Beckett's medical issues. She has so much working against her right now - it just doesn't seem fair. If she survives the brain defects, she still has to deal with the hernia. If she survives with the hernia and we're able to get her into surgery, she'll have to survive that whole ordeal. If she survives surgery, she'll have to go through more surgery for her face and will have to avoid fatal illnesses from those complications. If she makes it through everything, the simple act of eating could cause choking, pneumonia or even death. It's all terrifying. It's hard to imagine that she can overcome all of these obstacles. How many people have to go through half of what she's dealing with right now? How many people survive? I remind myself that it could all be worse - but there's really only two ways it COULD be worse. She could have Trisomy, but she doesn't. She could have passed by now, but she hasn't. There is still the threat of clubbed feet and hands, deafness, blindness, retardation, organ failure and the big one, death.

It sounds crazy, but when we thought she had Trisomy, it was easier to think of her funeral. It was a certain thing - she would pass and we would have to move on immediately, so we needed to prepare and just be tough. But now that there's this slim chance of survival, it makes everything so much harder. The hope builds every day that I feel her move and each time we hear her heartbeat, I think that maybe the doctors are wrong and she's going to be just fine. I'm scared that I'm setting myself up for a huge defeat. When we thought she was fatally ill with Trisomy, I thickened my skin and made arrangements. Now she's got a shot, and I'm scared as hell. I'm so desperate for her to make it through all this that I'm not sure what will happen if she doesn't. It was just easier to detach and be systematic about it all. She just keeps urging onward and I'm her biggest cheerleader - quietly celebrating each time she kicks and laughing when she slides around in my belly. I'm a giant, terrible mess when it comes to my children being in danger. I can't do anything but cry and shut down when Seph or Mina are hurt so I don't imagine I'll be anymore help to poor Beckett when her time comes.

I'm tired - don't sleep well. I'm nervous about the upcoming appointments and tend to get a little manic when we have to sit in waiting rooms. My heart is racing at just the thought of meeting these specialists in Gainesville. These men and women will know more about my child's situation and medical needs than I have ever learned about history, mathetmatics and art combined. They have studied longer about these rare instances than the span of my short life and it makes me feel small and insignificant. I have real, worrysome questions I need to ask but they all seem so dumb when I think of what these people deal with on a daily basis. I'm afraid if I ask things like "Can you give her a lung?" or "Can you give her something for her pain?", I'll get laughed at or scoffed at. I'm clueless about my own daughter's needs because the majority of the world's population has never had to deal with these sort of circumstances. Dr Dobak was genuinely compassionate and took his time with explaining things, so logically I'm sure these new specialists will be just as kind. But they're surgeons, internists, neonatal giants in their fields. I don't want to walk in, crying like an idiot and beg them to help her however they can. I want to know what to ask so that I get some definitive answers. I don't want to be the dumb mom that they just pat on the head and work around to get the job done. It's all.... stressful and depressing.

My mood bounces back and forth about all of this. Beckett, my expectations for her, the specifics of her medical difficulties, my other children, my family angle... It's hard to stay level-headed when there is so much to think about.

I'm exhausted. If I don't update before Tuesday, I'll surely do it Wednesday when we get back from Gainesville. Thank you to everyone who's subscribed to this blog or is following it on their own. It's good to know that people are reading and care for all of us.