Behind the Scenes - Living with Childhood Schizophrenia
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I spent a week with Jani and her family and experienced their routine. I would arrive early in the morning as Jani was waking up for school and leave in the evening when Jani went to sleep. We really wanted to get a sense of what it was like for this family around the clock. The family enjoyed having me there, because as I was interviewing them and documenting every move they made, I was also an extra pair of hands to have around and a person to talk to. This summer, Michael and Susan made the decision to split their family of four into two separate apartments so they didn't have to worry about Jani hurting her little brother, Bodhi, in a psychotic moment. It was fascinating to see one family living in two apartments for the safety of their children. It is far from how a typical family lives, but it seemed to work for them. One apartment was structured like the psychiatric hospital for Jani, and the other was just a normal one-bedroom apartment for Bodhi. Michael and Susan split up every night so each child would have one parent, and they rotated nightly.
Every night when I went back to my hotel room, I was extremely exhausted but could not stop thinking about the family because I knew that eventually I would get on a plane and go back to Chicago. It made me sad that I could not be there to help them indefinitely. Because when you are there, even for a short amount of time, you can grasp how chaotic and constant their lives are. Jani constantly has to be engaged to distract her from her hallucinations. So I saw how laborious it is for her parents to constantly keep her engaged. They don't have much time to daydream or focus on anything else in fear that in one unattended moment, Jani could potentially hurt herself or Bodhi. I learned a lot from Michael and Susan. I saw parents who worked hard every day just to keep their kids alive and safe...no matter what it took. After spending a week with them, I couldn't get over how difficult a situation like this is on a marriage. I witnessed some of their good times and some of their bad times, but at the end of the day, I could see love. You could tell that they really respect one another, but more importantly, how much they need each other to make it through the day. In the end, they really lean on one another because only they as parents know what Jani and Bodhi need.
Every night when I went back to my hotel room, I was extremely exhausted but could not stop thinking about the family because I knew that eventually I would get on a plane and go back to Chicago. It made me sad that I could not be there to help them indefinitely. Because when you are there, even for a short amount of time, you can grasp how chaotic and constant their lives are. Jani constantly has to be engaged to distract her from her hallucinations. So I saw how laborious it is for her parents to constantly keep her engaged. They don't have much time to daydream or focus on anything else in fear that in one unattended moment, Jani could potentially hurt herself or Bodhi. I learned a lot from Michael and Susan. I saw parents who worked hard every day just to keep their kids alive and safe...no matter what it took. After spending a week with them, I couldn't get over how difficult a situation like this is on a marriage. I witnessed some of their good times and some of their bad times, but at the end of the day, I could see love. You could tell that they really respect one another, but more importantly, how much they need each other to make it through the day. In the end, they really lean on one another because only they as parents know what Jani and Bodhi need.
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