Jacob isn't doing so well anymore. This week, everything kind of fell apart. There was that one or two days of pure relief that this surgery was going to save my baby brother. Our surgeon said he would have a nurse call and schedule a time in the next week. Except we never got a call. So we called them and all of a sudden, we have his receptionist telling us that his new surgeon doesn't want to do it before he goes on vacation for three weeks. He refuses to use his on call time and has booked it for the end of August. Jacob has been like this for 10 almost 11 months. It's not my place to talk negatively about this surgeon so I won't. But that's ridiculous. He also told us that this would be a very simple surgery and my brother would be out of the hospital at most five days after his surgery was done. Now, we are learning that in fact this is not a simple surgery. The kids who have this surgery done are in so much abdominal discomfort that they don't want to breathe so they are put on a ventilator to do all of the breathing for them. That's no "simple" procedure at all. If I'm not mistaken, my brother has only been off a ventilator for 1 and a half years...maybe 2 and he's four. You cannot just put a person on a ventilator and pull them off expecting them to pick up breathing. It is a process, they have to be weaned off the extra support.
With that said, we are no longer going to have this surgeon perform this surgery. We are extremely close with our other surgeon at our main children's hospital and are hoping and praying that she will do it. She has put this off so long because it's not an easy surgery. Though that's not the part that is making me a bit antsy. It's that Jacob is declining. His dressings have been saturated and Wednesday we found bleeding around the site. That tells us that again we have gastric secretions leaking out and they are burning his skin, very rapidly. Soon the secretions will burn through internally, they may have already started to.
For the past week, I've taken a picture of the sunset every day. When I'm feeling kind of down I go outside and stare at the sky. If I simply cannot be satisfied with telling myself to get over it I look at the photos. My mother rolls her eyes at me which is okay because that sunset is a creation of God. He puts beautiful things in our life every day, if I really want to be risky, every moment. Although that sunset doesn't take away some of the worry and stress it makes me stop and appreciate what is around me. It's not just the sunsets either. It's the insects too. I hate bugs, I really do. For me to come out and say they are beautiful is like me saying I don't like shopping. But I was outside most of the week painting and I came across this spider and his web. It was an orange spider and I looked at its web; the way he spun it and the shapes. It was amazing. Then, this huge beetle looking thing crawling by me, red and yellow colored, with black stripes and I thought it was the cutest thing ever. My mom says I'm too sentimental...maybe I am. But what's wrong with appreciating the life around you? Those sunsets put a smile on my face that wouldn't have been there otherwise. The spider and his web made me marvel at the creation of such an intricate design.
You can think I'm crazy; that I'm not taking life seriously. But that was the problem, I was taking life too seriously. As far as I'm concerned anxiety is evil. It takes up space that should be filled with faith, hope, and joy. That doesn't mean you can be perfectly happy every moment..not at all. I'm perfectly content to say that I'm quite nervous at this point in time. My brother is in a lot of pain; he won't roll on his stomach, he cries out at night, and his heart rate will go up if you don't keep up on the tylenol and ibuprofen. However, there is no doubt in my mind that Jesus is with him and my family. I know God has this, it's playing out exactly how it's supposed to.
All in all though, I'm human, I want to be able to enjoy every single moment of life...find happiness in everything. But right now that's not possible, I'm not sure I'll ever get to that point. But it won't stop me from trying. As The Afters say, "Here's my broken Hallelujah." Jacob was here today and smiling...the whole family was. I haven't seen that for a few days and it was glorious to be a part of.
No comments:
Post a Comment