There were lots of challenges that we expected during our daughter Casey’s life. Her condition was medically complex. We knew we would have to deal with wheelchairs, hospitals, feeding tubes, etc. There were a few things we did not expect. I think one of the surprises for us was body odor. I have a very sensitive nose, and I am very odor aware for myself, but this was not something I thought I would have to deal with for Casey.
Casey had an autonomic disorder along with many other diagnoses. Her fight or flight senses would kick in easily and often. Something that may just startle me, or that I may not even think twice about, could have a very strong effect on her body. When she was tiny, we didn’t notice it much, but as she got older and closer to puberty, when her body would react this way, she would get very stinky.
We tried bathing her more, but sometimes the odor would show up minutes after a bath. We tried all kinds of soaps and lotions. Her sensitive skin limited our options, but if we could try it, we did. We tried to keep her cool and relaxed. We didn’t know what would set her body off though, so we were never able to really prevent the reaction.
Eventually, we found some all-natural deodorants that we felt were safe to use on her sensitive skin. They helped some, but nothing ever really got rid of the odor. Instead, we just learned to ignore it. We managed it as best as we could, but if she was a little extra stinky one day versus another we didn’t mind. She was still the sweetest snuggle bug ever and we could get past the stink for her.
A friend of mine had a daughter very similar to Casey who passed away a few years before Casey. One day she came over and wanted to pick Casey up. I warned her that Casey was a bit stinky. She told me that she missed the B.O. from her little girl. I kind of laughed and remember saying “Seriously, you miss this stink?!” Little did I know that I would find myself missing the stink too.
The death of a child is a devastating life experience. Here is more information to help.
Emotional trauma. It's awful. It's painful. It's sad. It's a nightmare. I can handle physical disability. I understand that. But emotional disability? That's a whole other ballgame.
Categories: Family Support
I got to sit on a panel discussion for disability-related issues. In addition to another parent, there were three adults with a variety of disabilities who shared their experience on everything from doctors to their time in college.