Update: June 2024

    Since moving in with my parents in December I haven’t been able to write at all because my mental health has taken precedent over everything else. But I’m ready to get back to it because it can honestly be so healing. Also I have recently realized that people we are close to, even family members, don’t really know what’s going on with us, so it’s definitely time for an update.

    We have been living with my parents for almost 7 months now and it has honestly been really good! It took me awhile to reassess my pride and give into it, but it has been wonderful. There is a stigma around living with your parents, especially when you are well in to your 20’s, but it is such a modern idea that we should be facing all of our trials alone. For centuries families have been joining together to help lift each other up and care for each other in times of need. Although I recognize that not everyone has the privilege to be with their families while they are struggling, it has been such a blessing for me and Ethan. I only wish that his parents were still living close by so that we could see them more often too.

    I have been back to work at Utah Valley Hospital and am thrilled about it! I am working 30 hours a week, and have been able to take extra time to take care of myself, take care of Ethan, and work on our little upstairs apartment. It has been nice to form routines again. It has also been so nice to be back with my work friends and family. They are such a huge support system for me and make my job worth going back to every week, even on the hard days. I don’t think I’ll ever be able to express to them how much I love and appreciate them.

    Now, what about Ethan?

Well, since we have moved he has started and completed a semester of college! This is honestly such a huge accomplishment, I can’t even tell you how happy it makes me! He is my hero. He is truly the prince of perseverance. What makes this such a huge deal, besides the fact that he defeated death and is still making and accomplishing goals, is that we actually go to the hospital very frequently still. Ethan’s pancreatitis is going to be a lifelong problem, and honestly we don’t really know what that means. Most people that have had necrotizing pancreatitis as severe as Ethan has experienced it, die within their first year. This means 2 things:

1. Ethan is alive but they don’t know why. He says it’s because he lived out of spite. 

2. Because he survived, they don’t really know what to do with him. He is the first of his kind.

    Now if you are into medical dramas, this would maybe sound like good news. “A rare disease? Doctor’s must love you and want to study you and help you!” In reality, doctor’s don’t seem to really care all that much which is absolutely infuriating! They do the bare minimum, sometimes even less, and every hospital stay is a fight. Maybe 1/100 will give us some good advice or show us some empathy, but most of the time they honestly act as more of a road block. We are currently going to the hospital about every 2 weeks due to pain flare ups, and every time it feels like we are having to fight for our lives to get anyone to listen to us and take us seriously. IT IS SO EXHAUSTING. I want to cry, I want to scream, I want to take the doctor out into the hall and shake them by the shoulders until they understand the absolute agony we have been going through for the last 2 years.

    This whole experience has been hard to reconcile with my career. Working with patients in the hospital but also having to be in the hospital so often with Ethan is hard. I honestly just don’t have enough time away from the hospital and the burn out I experience comes rapidly. I wish I had 1 solid month where I didn’t have to step foot inside a building that smells like nitrile gloves and purple wipes. 

    Among all of Ethan’s health problems, I have also been diagnosed with PCOS. I have had symptoms my whole life, but now my lab results are starting to show the signs. 

    We also have to deal with real life problems too. For instance, a few weeks ago I was involved in a car accident caused by an individual that pulled into oncoming traffic. Although no one was injured, having to work with insurance and not having a car for a few weeks was frustrating. We purchased a new car that immediately had a problem that put it back into the shop. We finally got it back and are just praying that we don’t have car problems for a long time. 

    People often ask us, “How do you handle it? How do you keep going?” The answer: You have to keep going or you die. There are so many times, often daily, that I want to give up, or stay in bed, or run away and start a new life. When days feel hard, I take some deeps breathe, try to be gentle with myself, and keep going. That is all we can do. No one will come in and solve our problems. No one will magically have a cure to fix Ethan’s organs. No one will buy us a house or a new car. No one will be able to learn our lessons for us. Everyday I just hope that our burdens will be lightened and we can find some relief. Until then we’ll just keep moving forward, even when we have to claw for every single inch.