Well, the first week of the Spring 2017 semester is over and done. I am in St. Louis at a Speech and Debate tournament and I’m up way too late. But, I decided I would at least get my Five Minute Friday post in this week. If you aren’t already participating in Five Minute Friday, you should go give it a link. This week they are focusing on participants finding those who are new to Five Minute Friday, so you’ll get some visitors and commenters as a newbie!
Control is something I gave up in my life long ago. Actually, I really gave it up almost exactly eight years ago. Almost eight years ago, I went in for a regular checkup during my pregnancy and ended up in the hospital. I was there for only a few hours before I was on a helicopter flying to a bigger hospital with a NICU. In all honesty, I don’t remember a ton about it. I don’t feel like I totally knew what was happening. But, I arrived in Sacramento on a helicopter, was placed in a room and hooked up to monitors. Originally, we thought I would be spending the rest of my pregnancy there (I was only 32.5 weeks along at this point, so we were looking at another six weeks or so). But, the next day, it was decided that the baby had to come that day. An emergency C-section was scheduled for that evening. So, I went from eight weeks away to six weeks away to less than 24 hours away from having a baby. There was no control.
Once Bean came along, she seemed to do well considering how early she was. She was tiny. She had to be in an incubator, like the eggs we used to have in our classrooms when I was in elementary school. I couldn’t even go see her for the first 24-36 hours because I was still unstable with severely elevated blood pressure. I was brought pictures and told about her, but I couldn’t actually go see her in the NICU. It was all so surreal. There was no control.
We brought her home three long weeks later. She was still tiny. We had to get a special car seat, one that held a baby smaller than five pounds. We didn’t have any baby stuff yet, because we had six weeks and a baby shower still to come. Our friends got us a bassinet so she would have somewhere to sleep. We had vitamins and tiny bottles and tiny clothes and a bassinet. We went to the pediatrician and the lactation counselor. We thought we had made it through the worst. But, there was no control.
After three weeks at home, we ended up in the hospital with a diagnosis of RSV. I moved into a hospital room at our hometown hospital in the pediatric wing. Bean moved into another incubator. They would come in and give her breathing treatments every so many hours. She wasn’t getting better. My husband would come in during the day to let me go home and shower. I would come back to the same. Finally, on the fourth night with no improvement, a nurse seemed to be annoyed and told me that we should not still be there. I didn’t know what she meant. But, the next morning, we got news that there would be another helicopter ride. This time, Bean would fly by herself and we would meet her back in Sacramento at a different hospital and she would be in the Pediatric ICU. We went home to pack. There was no control.
We received a call while driving the hour and a half to the hospital. Bean had arrived. They had to intubate her. She had stopped breathing for a time. A reaction to the Kedamine most likely. But, they had her stabilized. They wanted to know if anyone had talked to us about her heart. No one had. The doctor told me it was five times the size that it should be and was crushing her lung. There was no control.
We spent that week in the PICU. They had her on heart medications and an intubator and a feeding tube and so much more. She was still tiny. She was covered in tubes. She looked like some sort of rag doll. It was surreal again. We watched TV. Family came and visited. We slept in recliners. We sometimes went to my sister’s to sleep. Cardiologists came and visited. Finally, she was stable enough for them to do a heart catheterization. It was scheduled for Friday morning. They would know then if it was a structural problem causing the heart size. The news came back that it was not structural. The doctor told us he thought she needed more than they could do and suggested Lucile Packard at Stanford. We agreed. Another helicopter flight was scheduled. Then cancelled because the size of the helicopter from Stanford could not land on the roof of the hospital we were in and the drive to and from the nearest place would be wasted time. So, they would send an ambulance instead. There was no control.
We drove down and slept a bit before going to see her at Lucile Packard. We walked in to a group of doctors and nurses and pain specialists and fellows – about 11 people standing around her room talking about her condition. It was both terrifying and humbling. We were told what they were going to do to figure out what treatment would be best. We were told she was very sick. There was no control.
It has been much longer than five minutes, but once I got on a roll with that, I had to keep going. I feel like I could go on like that for pages and pages and pages. So much has happened and continues to happen that is out of my control. And despite the horror of the news and the frustration at the situation and the feelings of victimhood (why us? why her?), we have made it through. She is not just surviving but thriving. I am here. I am making it work. But, when I start to retell the story, I realize I need to cut myself some slack.
It hasn’t just been my daughter’s story, but my dad’s quick degradation into Alzheimer’s and then long suffering before death. My mom’s cancer and loneliness and depression and then her death. My own biopsy a few months ago (that came back negative). If there is one thing I know, it is that I have no control. The doctors have some control, but even they don’t have total control. They don’t always have the answer. At some point, we have to realize that we have a very small sphere of control and even that is not ours. As hard as it may be to admit it, we are not able to control our fate or the fate of those around us.
But, we do have the ability to live our lives with love. We do control what we choose to put out into the world. Love and light and understanding. So, that is what I choose to focus on at this point. There is no control over what happens TO us, but we can control but we do TO and FOR others.