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Thursday, August 29, 2013

Ben's Hero

Sitting in a hospital room all day, trying to talk to a person who can't respond, can be very hard on the joints and the emotions. I quite often get up and roam around the hospital. While I walk feeling very helpless, my sister is driving herself crazy in Des Moines.

When we were kids money was tight. I don't think we, as children, ever knew it though. My dad worked hard every day. I hardly ever remember him taking a sick day. He worked six days a week with two weeks vacation every year. About the only time he missed work was when he was sick enough to have to go to the hospital. 

It wasn't until my sister reached her teens and started going to a junior high school on the, let's say, more well to do side of town, that I started to realize that we didn't have a lot of money. 

Stacey had a hard time, as all teens do, seeing just how much she didn't have. I don't know if she had started realizing it sooner, but junior high really accentuated it. She had friends there that lived in big houses, that didn't have to share a room with their twerpy little sisters. Kids that had all of the fashionable clothes, the right shoes, everything she didn't. I think this was very hard on her. 

Ben and Stacey have had a tumultuous relationship from the day she was born. They have fought on and off my whole life. I, as the ever cute little sister, would always pick a side. Sometimes my sister's, sometimes my brother's. Even as a four year old I knew to pick the side which would better suit my need and desires. Usually, I would side with whoever was left in charge at the time. 

My mother had a job ever summer, from the time I was seven I think, at a Girl Scout resident camp about fifty miles away. She was gone for weeks at a time. This left my dad to take care of my sister, brother and me. Having to work six days a week, that meant my brother and sister were always left in charge of me. They always fought over who was "in charge" of everything. 

Ben would delight in pointing out the things that Stacey didn't have that all of her friends had. Stacey would delight in poking at his buttons of insecurity as well. They worked very hard at making each other angry. That's when I would step in and make things worse by siding with one or the other. Our lives were like that for years. I don't know that my sister and brother ever found a way to get past those times. 

Since Ben got sick, my sister has been working very hard to get my brother's affairs in order. She had been by his side when he was still in the hospital in Des Moines. She has ran all over Des Moines getting the documents that were needed to help my brother get on disability. She went down to Indianola to get his dental expenses. She hand delivered it all to the Social Security office. She has been an absolute storm trooper getting this all done for him. She has been amazing! If Ben is never able to thank her himself, I certainly have!

While Stacey was running all over central Iowa, I was with Ben. No changes, no answers, no progress. It has been a heart wrenching week. Usually, there are up and downs. With Ben there have just been downs. More and more downs.

The hospital wants to get Ben out of the ICU. His vitals are stable, his decline has seemed to reach bottom. He really doesn't belong in ICU any more. We understand that. Instead of move him to another floor they want to transfer him back to the hospital in Des Moines where this all started. None of the different services, at the hospital he's at now, want him on their floor. Neuro is convinced he is suffering from hepatic encephalopathy, Liver diseases are convinced he is not. No one is willing to take him on their service. Stacey has another fight to fight while I stay with our father. She is calling the social worker that has been working with Ben for the liver transplant. She is calling the patient advocate. She is being the hero Ben needs.




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