Update...

Wow, I am horrible at this blogging thing! I haven't written a single thing since the first day of summer?!? Well, here is the update. I finished the whole cane training thing and have those skills under my belt. I really don't use my cane as often as I should so I am going to make a conscious effort to use those skills. I am also in class two of my braille lessons but haven't kept up with that either. I really am beginning to think I have too much on my plate with taking classes through the University of Phoenix, Braille lessons, running a house, and three little girls!

As for the Usher's I have found a lovely new side effect (that should be dripping with sarcasm in case you couldn't hear it). When I wake in the morning I have to rub my eyes raw because I wake up with gunk in my eyes. Its almost like when you have a really bad head cold and you wake up with your eyes matted shut.... yeah, that is every morning for me now. I have to pick and rub because it is not only on my lids but it is on my eyeballs too and it is really uncomfortable all day long. So I am thinking I am going to go to the doctors to see if there is a prescription out thete that will work because over the counter eye drops are not working.

I still with depression over the loss of my vision but I have a new mantra. "This is just a test and I will pass with flying colors." I also think a friends new tattoo on her foot which says "Nothing less than amazing." (Thank you for that mantra!)

We were all given the chance to prove that we are someone special and we can do amazing things.... some of us just never really understand that or take that chance to prove it and the rest just take life for granted. I really never really realized how fleeting life can be until I was standing graveside memorial for my uncle who was honored with time-honored military rights. I began to cry as they played taps and made a promise to myself to finish school, live to my potential and be the best I can be as a mom, wife, and most importantly.... human being. Because life really is short.

Summer

Today is officially summer and I am kinda bummed. Since giving up my driver's license I have found that it is really hard to plan to do anything with my girls. My husband sleeps during the day and works at night so if we plan anything it has to be Wednesday, Thursday, and Friday after 5pm. The zoo closes at 5. Movies are expensive and the baby is quite ready for the movies. They are already going to the public library for the summer reading program thanks to Grandma Mary for taking them. So I went and got some stuff for a few crafts, but they want to do them all right a way. Besides it seems like I am always doing homework for school!

So I am doing research for school and found the link to the Hear See Hope Foundation which raises money for Usher Syndrome Research. Please check it out and donate! I am thinking I would like to raise awareness in my community so if you have any fundraiser ideas please let me know!

www.hearseehope.com

Moving on and Accepting

Dealing with Usher Syndrome or any other disability is like dealing with death. You have the seven stages of Grief to deal with.
1. Shock and denial
2.Pain and Guilt
3.Anger and Bargaining
4.Depression, Reflection, and Lonliness
5. The Upward Turn
6. Reconstruction and working through
7.Acceptance and Hope

Granted, I haven't gone through all of these and not necessarily in this order. But I have experienced some of these. I have come to the point of understanding that I will most likely go blind. I don't think my family has come to that realization yet, but I expect they will go through some of these steps as well, especially my daughters. All I can do is let them express themselves and love them with all of my heart. I will always be there for them.

So I finally have gotten to the point of acceptance. I accept my fate, I accept my blindness and I accept that there is no cure. So I went and got a tattoo to honor my acceptance. If you don't know me, I love all things Celtic. So I got a triskele with a shamrock in its center to symbolize my good luck because I have it in spades where my family is concerned. I love my tattoo!

I am NOT a charity case!

Remember when good ol' mom always said "If I've said it once, I've said it a million times!" Well, that applies to my life. So I am going to say it a million and one times I AM NOT A CHARITY CASE! If I need or want your help I will ask for it! I have already taken the first step by calling the Michigan Commission for the Blind. They gave me my cane, gave me Orientation and Mobility Training, bought me an alarm clock, a fire alarm for the hearing impaired, a doorbell, for the hearing impaired, and a few other things. Whenever I need something I call them and they do their best to help me or they point me in the right direction. I love them and cannot imagine my life without them. If you know someone who is legally blind definitely call the Commission for the Blind because there are so many things out there for the Blind that are wonderful!

Do I want to raise awareness in the community about Usher's? Yeah. I think more people need to learn about it and be aware of what it is because it is more common then everyone thinks, but is only HEAR SEE HOPE Foundation Fighting Usher Syndrome. They have many wonderful things on their website and have lots of fundraisers however, they are all in Seattle, Washington.

I am not angry. I have good days and I have bad days, but everyone has those whether they are perfectly healthy or not. I don't want or need sympathy. The most important thing to me right now are my girls and cherishing every moment that I have left to watch them grow up while I still have my vision. Maybe I won't lose it.... most likely I will. We all know that. Gabi knows it, Kairi is learning it, and Bri will learn it. All I can do is teach them how to be there for one another and for me. But the most important thing I can teach them is that vision or no vision I will always love them, that they are the most important people in my life, and that I will be on their side no matter what until the day I die.

So NO I am not a charity case. I expect everyone to treat me as a human being. I may not be able to hear you at times and definitely will not see you if you stand beside me, but if you want to talk to me or ask questions all you have to do is tap me on the shoulder and say "hi." I don't bite. I will talk to you, but remember if you treat me with disrespect then I will do the same. If you ask questions, I will answer them to the best of my ability. If you want to talk, I can still listen... I am not deaf, just hearing impaired. If you want to show me something then show me, I still have vision left.... just not the peripheal.... the cane prevents me from hugging the floor because it loves me! (Thanks Melissa for that.... love it!)

I am not a charity case because I am a human being!

Out with old and In with the new!

Recently I had another run-in with someone from past. We had a falling out due to my husband listing our house with someone else instead of this person. She claimed that it hurt her because she thought we were friends, she was there for the birth of my oldest daughter, and she was my matron-of-honor. Basically, she tried to lay a guilt trip on me. She was the one who didn't return five of my calls when we wanted to ask her to list the house so it was her loss.

That was several years ago. Ever since then she has been a thorn in my side. She recently put me in the spotlight on her Facebook page and said how she was sad to hear of my condition and wanted to know if there was a foundation for what I had because she wanted to make a donation and that I was in her thoughts.

That's great! Go ahead, but I don't need your pity. In fact, I don't want to be in your thoughts or on your Facebook wall. You are not my friend and why don't you just stick with what you do best.... holding grudges. I could say I am soo sorry that nobody lives up to your high expectations and that you always have to settle trying to makeover people with your taste in clothes, jewelry, and cars. Is there an organization that I can donate in your honor to help you? How does it feel to be pitied? Not good huh?

I am putting this behind me and I am moving forward with my life. That is why I have the cane, that is why I gave up my driver's license, and why I am choosing to ignore you! I have enough friends and family support to get my through my bad days and I don't want or need any negativity. So ... thank you lord for providing me with dignity of this disability. I know you have a plan for me and this syndrome. It surely does not include her!

Oh Kalamazoo and your wicked roads!

Today was a test for me. I had to navigate West Michigan Ave. in downtown Kalamazoo.

We parked in a lot on the corner of Westnedge and West Michigan where I was given the instruction to go the Radisson which I believe is on Rose (Forgive me if I am wrong I haven't been feeling well today.) I then had to cross West Michigan. Butterflies in my stomach, cane pointed to the intersection, deep breath in then out, I waited for the surge and crossed the road. No big deal. My next instructions were to go to Edwards Street. I had to cross a one-way side street against the light, and cross a funky street where people kept doing rolling stops. My instructor told me I had to take a deep breath and just cross in front of the cars otherwise I would never get across. Now, having a car coming up behind you that you can't see is a completely different story then having a car coming at you. Talk about heart attack!

For lunch, my instructor took me Coney Island Hotdogs. I had my first official Coney Hot dog and it was good. I loved the old building... gold tin ceiling and tiles everywhere!

My next instruction was to head back to the Radisson hotel where I would learn escalators. Talk about a leap of faith! First, I have to feel the handrail to make sure it is going in the direction I want it to go, then I stick my cane on the stairs and listen. Finally, I just take a step not knowing whether or not I am on the edge or not.... very nervewracking! Oh! and to get off... I have to feel my cane become even with me and step off!

I think my cane instructor loves me! I am a model student and I do what he asks... apparently he usually meets with resistance. I figure I need to know this stuff and he has been doing this for 30 some years that I can trust him. He also thinks that I could take my girls on a train and visit Chicago on my own and not have any problems! Hmmmm, I think I just might have to plan an overnight trip to Chicago with my girls this summer to visit the Museum and the Aqaurium!

So next time you talk to a teacher, appreciate them.... they really do have our best interests at heart!

Chauffeur! Chauffeur! Where the Heck is the Chauffuer?

So I have basically turned my mom into my own personal chauffeur. I know she doesn't mind but at least I save all of my running for one day. Yesterday we went to the office so she could pick up her paycheck and visited a few people like my Aunt Robin. Then after that we went to the Secretary of State. We walked in and I grabbed a number.... 03.... they were on 95 so we sat and waited..... and waited.... and waited. It seemed that everybody there had no clue what they were doing there and forgot paperwork or had really dumb questions.

So I waited for the number 03 to be called. Finally, it was my turn! I walked up handed her my paperwork that says "Ms. Johnson is legally blind" and my drivers license. I held my head high, heart thumping in my chest, eyes misting and said "I'm surrending my license due to becoming legally blind." The kind lady took the paper work and looked it over, took my drivers license and began typing into the computer. I had to sign a piece of paper stating that I had canceled my license. In order to get a Michigan ID (even though you just canceled your license) you have to have proof you are who you are.... birth certificate, social security card, bill with your address on it and the canceled driver's license. So now I have to go back next week to get that.

After we left there we went straight to where my step-dad works to fax out a paper for my eye specialist so that I can get a handicap sticker. Fun. Then we went to Wal-Mart to get some stuff that I needed... like hearing aid batteries. Yup, they died yesterday. Finally, I was able to go home and rest for an hour before picking up the girls and taking them to the Meijer Fun Run where 1600 kids showed up to run! It was cold but we all had fun. Still appreciating your sight I hope!

On the Menu: Meltdown!

If I were a drinker, believe me, I'd be drinking whiskey.... the strongest there was.... I'd let it burn its way down my throat and sink to the bottom of my stomach. But since there is no alcohol in the house, much to my unhappiness, I won't be drinking. I could use a good glass of wine anybody got any recommendations? I just might buy some when I go grocery shopping.... if I ever get to the store.

You are probably wondering what caused my magnificent meltdown. Right? Well, it goes something like this. Today, I hate having Usher's. Today I hate being dependent on others. Today, I hate that my three beautiful girls having to live with a mom who has Usher's. Today, it seems like everyone in this house and my mom are ignoring me. Today, is just a bad day. One definitely for the books because I have had two meltdowns today and working on a third as I write this.

So before I have my third meltdown I just want to say.... look at your kids,take a look at all your pictures on the wall and photo albums, look at your car, look at everything around you and appreciate your sight because all of those things will be gone for me. I don't when but someday all I will see is nothing for the rest of my life. Now do you realize how much I am dependent on others? Doesn't sound fun does it? Believe me..... its not. And so begins meltdown number three.

New Gadgets

On Wednesday of this week I got my new gadgets. It is pretty cool to know that there is technology available to people who have Usher's or even blind or hearing impaired.

Before this technology I would be doing laundry in the bathroom and not be able to hear anybody knocking on the door. Now I have a doorbell. Push the top button and it makes an abnormally loud chime. Push the bottom button and it makes this black box on my belt vibrate. Now I know when people are at my door. The cool thing is that at night when I go to bed I charge this black box so if anyone rings the doorbell my bed will vibrate!

I also got a new smoke alarm! When that goes off either the black box or my bed will vibrate depending on the time of the day. I also got a little sound monitor so that when B goes to bed I turn on this black box and put in her room. If she wakes up in the middle of the night it will wake me up.

The only other thing I got was a new timer. It flashes light and vibrates in my pocket. So now I have quite a few vibrators and none of them very enjoyable! LOL! But if they help me I guess I can live with them.

Crossing the street

So for my second day of Orientation and Mobility Training I had to learn how to cross a busy intersection. In my case, I had to cross M-89 and Farmer.... with my eyes closed. BIG DEAL you say... Ok let me tell you this. M-89 is a five lane highway that is crazy busy. It is the major road through Otsego so it is almost always busy. So yeah it is a big deal!

So the rest of you are wondering how do you cross M-89 with your eyes closed and not get killed? Well, have a cane helps! But, imagine yourself standing at the crosswalk getting ready to cross with your eyes closed. You listen to cars zooming by in front of you and then beside you. For obvious reasons you don't want to cross when the cars in front of you are going so you wait until you hear quiet. Then when you hear the cars next to you accelerate you walk. The cars that are accelerating beside you protect you! You would really have to see it in action to fully understand it though.

One of my next lessons will be sighted guiding. Where my mom and Timmy will learn how to guide me! I can't wait.

Orientation and Mobility Training

Today was my first cane lesson. I learned the proper way to hold and use the cane which takes some getting used to. I also learned that when I come to a corner that I must point the cane towards the middle of the intersection so that all of the cars going through knows that I cannot see.
I also saw some very nice drivers and a couple of rude drivers. My instructor Jim also told me of my final test. I have to call Allegan County Transportation to schedule a ride for myself and one of my girls to go to Wal-Mart. Once we get there I have to use my cane and walk my daughter to Subway to buy a pop. Doesn't that sound like fun? Yipee! (that was to sound sarcastically.)

Well, there will be more tomorrow but I must go because as I write this B is throwing a bucket of mismatched socks all over the floor!

Good Day

Today was a good day for me with the exception of stubbing my toe and breaking off half of my toenail, but other than that it was a good day. I cleaned the living room 24 times and will do so again for the 25th time before I go to bed, but it was a good day. I walked B to the store and we didn't run into anything.... YAY! Although I thought I lost my hot dog buns but it just turns out B threw them in the garbage can(Luckily the bag doesn't fit the garbage can and the buns ended outside of the garbage bag.).

We made hot dogs on the grill and they were yummy. Afterwards, we went to Gramma's so the girls could take a bath (Upstairs bathroom window is still broken!)Now it is almost bedtime for the girls and I will have peace and quiet. What will I do? Clean the living room..... again, fold a load of laundry, and watch LOST.

Tomorrow will be another good day for me. I start new student orientation for UofP and will have my first cane instruction lesson. Things are finally starting to look up for me and I am thankful Spring is here to stay (knock on wood...).

Driving

Okay, here's the low down. I am legally blind and with that I shouldn't be driving. I don't like to drive because I am scared that I might hurt someone. Not being able to drive sucks. It takes away some of my independence and that means I have to count on somebody else to take me places. For example, tonight I might be ordering pizza delivery because I haven't gotten groceries yet. Timmy had an appointment for which he had to get up early to go to so when he got back he had to get some more sleep. Gabriella had girl scouts tonight after school so I couldn't have my mom take me and be back in time to pick her up. Hence, no groceries.

My license does not expire till September and I have been driving less and less but there are times when I have no choice to drive. I can't keep waking Timmy up to take me and Bri to the doctors or take something up to the school because one of the girls forgot something. I can't keep having my mom take sick/vacation time because one of the girls have an appointment in Allegan or Kalamazoo and from everything I have heard ACT is good and reliable at times, but I need to know that they are going to work for me all of the time and that I am not going to be somewhere waiting! I am even still working on how the girls are getting home after school next year when the weather is horrible because it sounds like with the school budget cuts there will be no city bus routes!

So think about your freedom and independence to go anywhere and cherish it, because I don't have that luxury anymore and wish I did.

Home

So I am sitting here at home which is actually clean for once! I get up to go do a load of laundry and dishes this morning... I work on unloading the dishwasher and in the middle of unloading, I think to myself "I should start that load of laundry while I am thinking abou it." I walk into the bathroom and put a basket of clothes in, pour in the detergent, and start the load. Not thinking I head for the living room and about kill myself tripping over the dishwasher door, which I left open. Yelling in pain and berating myself in my mind, how could I forget that I left that open!?! One of the joys of going blind is having your legs and arms covered in bruises.

The worse part of this going blind is when I run over my girls. Its not their faults that I can't see them and I know I can't blame them for being in my way because I should be able to see them. Gabi and Kai are used to my running into them, but the poor baby, I run into her and knock her over on her butt! She cries which makes me cry and makes me feel like a horrible mother, but I can't help it! I am not the only one that is learning to live with blindness, it affects my whole family so they have to learn to live with it too and it just may be more difficult for them than it is for me!

Trip to Sam's Club

So my mom took me to Sam's Club this afternoon. I forgot my cane, but I haven't learned the right way to use it yet so I am kinda glad I didn't take it. What I have realized is that Americans are rude and disrespectful. I realize that they have no idea that I am legally blind but seriously rudeness does not become anyone. While we were at Sam's I was holding onto my mom's cart walking beside her when an older lady comes barreling at me, expecting me to move. Of course, I didn't see her and she bumps me and gives me the dirty look like it was my fault that she was walking in the middle of the aisle. I ignored her and kept walking with my mom.

I am tired of the looks and the rude comments. I don't have the time to explain to every person that I run into that I didn't see them or that I am legally blind. I know that once I use the cane that they will be more understanding but I also know that they will walk around and avoid being near me. I have seen it done to other blind people. Heck, I have done the very same, but I realized... wait a minute.... why should I move out of their way? They have a cane, they will find out that I am right there or I can say "hi, I'm to the right of you." So, if someone bumps into you... please don't be rude.... say something funny, it sure beats rudeness!

Introduction to Usher Syndrome

Usher Syndrome is characterized by hearing loss and Retinitis Pigmentosa (RP). RP causes night blindness and loss of peripheal vision through degeneration of the retina of the eye.

There are three types of Usher Syndrome.

Type I: person is born profoundly deaf, has a balance problem and loses their vision early on in life.
Type II: person is born with moderate to severe hearing loss, has no balance problems, RP usually becomes apparent during the teenage years.
Type III: person is born with normal hearing and vision but as time goes on both worsen.

I have type II Usher Syndrome. I was born with a moderate to severe hearing loss. In 1996, the summer after I graduated from high school, I found out that I had RP. The doctor gave me no information, he just said that I had little peripheal vision but that I had good tracking. Two years ago I noticed that I couldn't see the stuff that I normally saw anymore so I checked into disability and got it.

In the last few months I decided that I needed to prepare myself for eventual blindness and contacted the Michigan Commission for the Blind. I will now be learning Orientation and Mobility (using a cane) and braille through the Hadley School for the Blind. So this is my blog on what I have learned and what it is like to live with Usher. I hope that many will gain an understanding of this syndrome and know that I am not just a clumsy person!