One weekend my mom decided to take me to Omaha to see my grandma and to do some Christmas shopping. While I was at my grandma’s house, she started to notice that I was acting lethargic. They took my temperature and it was awfully high. My mom called the doctor’s office back home because she was worried. They told her, “Oh he’ll be fine. Just alternate Tylenol and Motrin and he’ll be fine.”
My mom was still a little doubtful so she made an appointment for the the following day just to be sure. That night, my mom started to worry even more because whenever she tried to cradle me or hold me I would put out a real meek moan/cry. When she tried to feed me, I wanted nothing to do with it. I was always hungry and wanting my bottle. So, when I didn’t even want to hold my bottle it made her even more worried.
The next day when we got back into town, we had an appointment with the doctor at eight in the morning. When the doctor saw me he felt the Fontanelle, the soft spot on the skull, and it was very inflamed and swollen. At that time, he thought it was Meningitis, a disease that is caused by a bacterial or viral infection. He sent us straight to the hospital for a spinal tap. The doctor told us not to worry because it could just be viral which meant that it would just go away and everything would be fine. However he did say that if it is bacterial then I could develop a mental disability, become blind, deaf, paralyzed, or even die.
When we got to the hospital, they had to sedate me in order to do the spinal tap because the fontanelle was so swollen and they wanted to go in from the skull. When they were conducting the test, they kept telling my mom it will be ok, he’s going to be fine. We’re sure it’s just viral. We never see bacterial. There are fewer than 200,000 US cases per year. When the test came back, it showed it was bacterial and my parents were devastated. The doctors assured them that they would do the best they could to help me. It was just a matter of making sure that I got the right antibiotics and tracking my fever.
My fever broke soon after. They thought I was going to be fine and that I would only have to be in the hospital for a couple more days.
That night, I started having terrible seizures. They then decided to keep me longer just to make sure that the seizures didn’t come back or I didn’t have any more problems. Before leaving the hospital, they put me through a series of tests, one of which was a newborn hearing test. Mary Lanning was the only hospital in the state at the time that could do the test. After failing the test, they knew that I had some type of hearing loss but they weren’t sure the severity so, they wanted to send me to Boys Town National Research Hospital for further testing.
After getting tested at Boys Town they then found out that I had a severe hearing loss. My parents then asked themselves do we want our son to live in the deaf world or the hearing world? After many months of researching and meeting with deaf families, deaf adults, and deaf teenagers, they then decided that they wanted me to live with them in the hearing world. I received Cochlear Implants at the age of 15 months. A Cochlear Implant is a device that is implanted in the inner ear that connects to an external piece and artificially stimulates sound.
This is just the beginning of my journey into the reality of being deaf. Check back next month for the next 16 years.
