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.

Digital Update

Well, I have my new hearing aids, and I have to say that this time, so far, I don't hate them...This is good! Here's a funny story that I thought everyone might think is funny and cool. I thought it was hilarious! I was standing in the kitchen last night getting ready to cook dinner, and I heard a buzzing sound, or something like the dishwasher, but it wasn't the dishwasher...I asked Chris, "What is that noise" It was kind of bugging me since it was pretty constant. I told him that I thought it sounded like the dishwasher, but knew that it wasn't...he asked me if it was the refrigerator..I thought to myself for a moment and then asked...do refrigerators always make a noise like that? His answer was yes, they have motors that run periodically...I laughed to myself. I've never heard the refrigerator before...I've heard the ice maker running the water to make ice, but not the humming of the fridge, Isn't that cool!! It will be interesting to figure out what other sounds I don't recognize! I guess going digital isn't bad after all! Have a great day.

Introduction

Back in August, I thought this might be fun to do, but I never did anything with the Blog. The last several weeks have been interesting for me, so I thought this could be a neat way to communicate what's been going on with us, as well as a journal for me. After searching the Internet to find someone who has experienced what I'm currently going through, and not finding a whole lot, I decided that maybe I might be able to provide comfort to others that have a similar circumstance as I. I'm not sure how far reaching this will get...if it stays with just my family and friends, I'm fine with that, but if it does reach someone with Usher's then I'll consider that a bonus...anyway, for what started out as a thought of something fun, I've decided to take it in a different direction as well. As you can see from the previous posts, I starting writing and saving it in word, and decided to post all in one day so not everything is in the right order..oh well. Enjoy!

Going Digital

It’s been all over the news for the last several months about the TV stations going digital and everyone needs to go out and by digital TVs. I have a similar post; only it’s not about TV’s! I’m going digital! I have worn hearing aids since I was 3 years old and each aid lasts about 6 to 7 years. The ones that I currently wear I got back in 2002, and have reached their life expectancy. Perfect timing right! Lately Chris has told me over and over again, to go get them checked out, because he is really tired of repeating himself over and over again. A few weeks ago, my mom called me and asked if my hearing aids were working ok, I guess she was trying to tell me something at dinner, and I totally ignored her. I’m sure there are many more that have noticed something wasn’t right either….if you are one of those, I’m Sorry!! I am finally doing something about it. I had a hearing test a couple of weeks ago, and my right ear has stayed stable, but my left ear has lost some hearing in the high frequency levels. I got the call yesterday that my new ones are in, and I’m going this afternoon to get them programmed and we’ll see how I like them. Normally this wouldn’t be a big deal, but this time the aids are digital….I’ve tried digital before and I HATED them…the sound was awful to me, just not what I am used to. I have always worn analog hearing aids, and that is the only way of hearing that I know, so when I went to order them again, I found out that analog is not the way to go anymore, and that they are not making them anymore, fazing them out….aghhhh the frustration…Apparently everyone is going digital….we’ll see how it goes. I'll post in a couple of days and give an update!

My Last Week Of Driving

What a whirlwind this week has been. First the appointment with the eye Dr., letting it all sink in, and then relishing the last few days of driving. I don’t drive that often anymore anyway, so in the big scheme of things, it’s not THAT big of a deal. My morning commute with the girls is usually not very exciting. We get in the car, tell Fed (the dog) bye and to have a good day. Parker usually requests to sing are you sleeping, in which I always say “what do you say” “pleaseee” I turn it on and say “what do you say now” “Thank You mommy” and off we go listening to “are you sleeping”. I always drop off Brecken 1st since it makes the most sense for the direction we’re going. We see a few school busses, and Parker and I always talk about the school busses, big ones and small ones, and how she wants to ride a school bus. I tell her maybe someday! I’ve realized that this is more of a probability now after Monday’s appointment…after I dropped off Brecken our conversation changed a bit. Parker chimed in and here’s how the rest of the conversation went.

P: "mommy, the sky is blue!"
B: "Yes, you’re right."

P: "why"
B: "Because God made the sky blue, what else did he make?"

P: "The clouds"
B: "Yes, what else?"

P: "the birds… the trees…. school busses…"
B: "yes, I suppose God made the school busses too…"

We went on to list all of our family members and then some, and by now we are at “school”
As I continued my drive to work for one of the last times, I just smiled and thought to myself that these are the moments I don’t want to miss. No, I can’t drive anymore, but I can still participate in these morning commutes, which is one decision I made that I would like to preserve for as long as possible. Now, we’ll just have Nana joining us in the conversations!

The Game Plan

On Friday we had our families over for pizza, which is one of our family favorites! We enjoyed the girls until it was bedtime, and then all sat down to establish a game plan for my short term needs. I was somewhat dreading this conversation as I hadn’t talked to my dad at all since the weekend, or seen my family since I had heard the news. I was hoping that since a week had passed that everyone had time to process the news, and would come ready to devise a plan! To my surprise, that’s exactly how the night went, and I was so relieved. I wanted everyone to know that I’m in a good place about things, and I didn’t want to dwell on the why’s or why me, or have anyone feel sorry for me…when the door was shut and everyone was gone, Chris and I talked about how well it did go!

For those that don’t know me, I thrive on schedule, I don’t like change very much, and structure just works for my life. That was my goal, and for now mission accomplished. My mom is taking me with the girls to drop them off, we drop off my car and then she takes me to work. My sister in law Heather is taking me home from work, since it is kind of on her way home. My dad is available for when Chris is out of town to pick up the girls, and Chris will continue to pick them up as he usually does. My parents, Chris' Mom and Rick are all going to be available on the weekends to fill in when we need it. For now this works, I’m sure we’ll have to readjust as things happen and come up and we all know that will be the case from time to time. My biggest prayer for these individuals that are so dear to me, that they wont feel burdened by the responsibility of being my “driver” for now. I also pray that if they need a break, or if it gets to be too much, that they will be ok with telling us its time for a change. I really appreciate everyone’s willingness to help out and participate, but I also know the reality of life and want to be respectful of everyone else time and space.

I have had numerous friends email me and call me to let me know that they are available. It is overwhelming to know that there are so many people willing to volunteer themselves to help us out. Chris and I really appreciate it more than I can express at this time. For now we have the short term figured out…what lies ahead has yet to be determined. That’s the silly part of this whole thing is that its so unpredictable. As life goes on, the girls get older and more active, Chris and I will have to figure out how to best adjust when the time comes…

When Minutes Changes Your Life Forever

I remember reading an email a while back about how life can change in days, hours, minutes, seconds, and how seconds count…I can’t recall the specifics of exactly how the wording went, but that doesn’t really matter. I was getting ready this morning for work, and my mind went back to that particular email. It’s amazing how a few words spoken in a matter of seconds can change your life forever…some examples of happy moments that come to mind are “I’m pregnant”, “will you marry me” ..Those are life changing moments…the one that I wasn’t sure I was ready to hear, but knew it was coming, was “I’m surprised your still driving…it would be my recommendation that you not drive anymore”..As the tears slowly came, and the dr. handed me a tissue, I knew that life was about to change dramatically. I knew in my gut going into this appointment that this was going to happen, and I had been weepy for a few weeks leading up to it. In my heart of hearts I knew this was going to happen, but yet I still wasn’t ready to hear those words….but yet I had to hear them from him, because I knew I wasn’t going to make that decision for myself…I know this is the right thing to do, but to process this change, and to wrap my brain around the specifics and how much this affects my husband, my kids, and my family is too hard to think about…It’s just life changing…