How I Got Here

I thought I would do a post on how I got to this point in my life. Here’s the background for those that haven’t heard my entire story. I’ll apologize in advance for the long post. I was born with Ushers Syndrome type II, but didn’t receive this diagnosis until my sophomore year in college. I have worn hearing aids since I was three years old, and my hearing has been stable ever since. I lived at home during college, and had a moment in the kitchen after my parents were talking about a family friend having surgery to correct his peripheral vision. We talked about what normal peripheral vision should be, and I realized that mine wasn’t like everyone else’s..I think at this point, my parents thought that was kind of weird. We went to my eye dr. at the time, and he recommended I see another eye dr. and then it was recommended that I see a specialist at the Baylor College of Medicine in Houston, Texas. My mom, dad and I boarded the plane for Houston and met with Dr. Lewis who specializes in retinal diseases. After a day of tests, Dr. Lewis gave me the official diagnoses of Ushers Syndrome type II. We were shocked since my parents always believed that my hearing loss was due to the dr at the time telling my mom that she probably had the flue while she was pregnant with me, which probably caused the nerve damage in my ears. Usher’s affects the hearing, and vision. It’s a genetic disorder that happens when you have two recessive genes for the disorder. My parents obviously had no clue that they were carriers of this, as no one else in the family that we no of had this. The peripheral vision is something that they can’t do anything about at this time, and the central vision is what we can monitor and have been treating over the course of these years. Some years the progression is slow, and others it can be fast. It is very unpredictable, and each person is different. Dr. Lewis did say that research is ongoing and probably in my lifetime there will be a cure…That was very encouraging to myself and my parents. At this time, we all came home and went on with our lives. I quit driving at night several years ago, and to be honest, I can’t remember when…I just know that I couldn’t see anything in the dark, so it was time. Its weird to lie in bed and not see Chris right next to me, but that’s how it is. The last several years have been good, we’ve been able to maintain my central vision, and the dr. appointments have gone really well. I would have to say in the last year or so, I would always ask Dr. Beck about my driving, and he would always say it’s fine….I’m not sure if he never wanted to give me bad news or what, but based on some tests done back in 2006, I could have been declared legally blind at that time. I had just had Parker, so maybe he didn’t want to do that to a new mom?? Regardless, A new dr. replaced him and I took the opportunity to ask the questions I wanted to ask. We’ve always have just focused on the central vision, which I appreciated and understood, but I needed answers on the peripheral vision, since that was what was affecting me the most. Several months ago, Chris asked me if I would tell him when I thought it was time to stop driving….I boldly told him no…Having said that, I also never got that conversation out of my head…When I would be driving, I was always thinking about how narrow my field of vision was, and if this was bad to be driving, then started being a bit more nervous as I was driving…always concerned that other drivers couldn’t see me, I hated having cars right next to me driving…so then my confidence was going down…With the appointment approaching, I knew I needed to ask some questions, and I came prepared to do so. Dr. Fogarty didn’t know me from Adam, so I asked about how peripheral vision works, does it eventually take over the central vision, or does it have a stopping point? He informed me that it does have a stopping point, but that eventually central vision can be affected. This is when he looked at my scans from 2006, and asked if I had ever been declared legally blind? I looked at Chris and then him, and we both answered at the same time, no. We talked a bit about what that means, he told me that I should have a couple of more decades of good central vision, ordered to have new scans done to determine legally blind status and here we are…
If you are interested in reading more about Ushers Syndrome, you can click on this link.