So as you have noticed its been a while since I have posted on this blog! My life got crazy busy! I don't even remember the last time I posted! It must have been summertime because I remember something about tripping over box fans!
Let's see. My oldest daughter has a mood disorder so I have been trying different behavior programs to get her back on track to being my lovable little girl. But as luck would have it that lovable little girl disappeared for three weeks because her favorite teacher had to take medical leave to have her tonsils taken out and recuperate. Thankfully she came back and my lovable daughter came back too! Apparently she does not do well with change!
My middle daughter has been having trouble with her ears. She had a set of tubes put in August of 2011 (her second set) and last week, six months later, had to have those tubes replaced again! Her left ear is making us worry but we still have hope!
My youngest daughter, who I call the devil reincarnated, is an adrenaline junkie. She climbs higher than any other kid her age would. She is fearless and sassy! She definitely makes life interesting!
As for me I have noticed some change in my vision, a little decrease of the side vision and it worries me. I take each day at a time. I stare at each of my daughters to memorize their faces and commit to memory funny stories so I will never forget. I tell them to be strong and teach them to be independent. I love them with every fiber of my being and will probably cry for days the morning I wake up and can no longer see. But as I teach my daughters to be strong and independent I am working on this myself. I am there but we can always be stronger and independent!
The other day I told a friend I hadn't seen the stars in so long and missed them. I can only see the really bright stars which are really rare for me. Being night blind I don't go outside much to really look anymore. She surprised me with pictures of stars a few days later and I cried! It meant so much to me that she took the time to go out and take pictures of the stars for me to see. I always say never take anything for granted but I definitely took for granted seeing stars! Then I realize losing my eyesight is part of my journey. If I tell my stories (and I always have a ton!) can show other people what I am going through and maybe give them hope then I shall share it! And this I promise to try to blog more! lol.
Thursday, February 9, 2012
Friday, May 20, 2011
For the love of my sanity!
Okay, so the weather is getting warmer out and people are bringing out the fans before turning on the AC. I have Usher's which mean I can't see the little box fans that that are sitting in the doorways and usually trip over them. I usually tend to remember that once I trip over a fan that there is one there but at home my life is chaotic. Don't get me wrong because I love my chaotic life.... 3 little girls who love to chase each other and scream.... what's not to love about it. So when I am trying to deal with those girls I tend to forget where those fans are and trip over them. It usually stops my kids right away because they are concerned with me but then I have to let them know that I am okay. This tripping over fans and running into other things usually leaves to multicolored bruises and scrapes and unsightly burns while I am trying to craft. I was thinking about starting a picture blog of all my bruises the other day, but I decided that my posting them on Facebook is enough! So when dealing with a Blind person, even a legally blind person, please do not invite them to your house and then move the furniture around after they leave! You will only contribute to more bruises! Okay, so that was a little joke, just tell us if there is anything that we might trip over and please have good lighting. It usually takes a legally blind person's eyes five minutes to adjust from outdoor lighting to indoor lighting and we don't see well in dimly lighted places. That is why we have hard times at bars and restaurants. Be kind, offer your elbow. All you have to do is walk. We are about a step behind you and if you come up to a tight space put the arm behind you and we will go directly behind you. When you need to do something that does not involve us, find a blank piece of wall and drop off us there.... just let us know what you are doing and that you will be right back. Let us know if there are any stairs or doors and if there is a place to sit. Most of it is common sense and if you have any questions don't be afraid to ask.
Thursday, May 5, 2011
EPIC FAIL
So I completely bombed that New Year's Resolution! My goal was to write in the blog every week so uhm yeah....epic fail! That's all right because I have a lot on my plate. I am a full-time mom who is also attending the University of Phoenix online. Yes, this legally blind and hearing impaired gal (ugh I hate that term!) is getting her Bachelor's degree in Health Care Administration. I am still not sure what I want to be when I grow up but I know that I want to work in the health care field. Since I can't be a nurse for the obvious reasons I thought I would work in the office. Only time will tell.
Not much has really happened since I last posted here in February, but I wish Mother Nature would get out of her funk and cooperate. These weather changes are hard on the eyes! Other than that I am hoping to get new hearing aids... Yup, going from analog to digital baby! I can't wait so as soon as I get them I will be posting what I think and how excited I am for these new changes in my life! No real moral to today's post so I guess this is a warning for the next post.... be prepared!
Not much has really happened since I last posted here in February, but I wish Mother Nature would get out of her funk and cooperate. These weather changes are hard on the eyes! Other than that I am hoping to get new hearing aids... Yup, going from analog to digital baby! I can't wait so as soon as I get them I will be posting what I think and how excited I am for these new changes in my life! No real moral to today's post so I guess this is a warning for the next post.... be prepared!
Sunday, February 20, 2011
Weather Changes
Okay, so I live in Michigan where the weather is not really that predictable. We can have 70 degree weather one day and have it snowing the next. This can get frustrating for someone who has Usher Syndrome. On overcast days we can go without sunglasses and on bright snowy days we need those sunglasses. On snowy days it is a little difficult to use a cane when there is snow on the ground and no one has shoveled. We had a wind advisory the other day... the wind was gusting 40-50 miles per hour, also not exactly good day to use a cane. Man, I think I need to move to a more friendly blind spot.... overcast warm days with slight breeze and no snow.... hmmm... sounds like heaven to me, but the girl in me craves the sun so I guess I can rock the sunglasses!
My next adventure is to research somewhat local places to take my daughters on a mini vacation. I am kind of interested in Great Wolf Lodge, but like I said I am going to research some.
My next adventure is to research somewhat local places to take my daughters on a mini vacation. I am kind of interested in Great Wolf Lodge, but like I said I am going to research some.
Friday, February 11, 2011
Independence
First of all I want to apologize for not writing a post last week! I was attempting to write every Friday for this year. I remembered on Saturday night that I had not made a post and then forgot to do it anyways! So this post is for this and last week!
So independence. I think everyone takes their individual independence for granted. I know I did. I did everything I possibly could on my own and to the best of my ability. Since being diagnosed legally blind a year ago on February 4th I gave up my driver's license and learn how to use a cane. (Although I don't use the cane as much as I should). I have been using assistive technology such as a vibrating alarm clock (not as fun as it sounds!), a abnormally loud doorbell, a sensor in my youngest daughter's room that sets off my vibrating clock to wake me up, and trying to learn braille. These are all tools that will help make me more independent, but life would be so much easier if I didn't have to use them, and especially if I didn't have this disability.
I have had to teach my children how to guide me and how to help me when I need them. They are amazing and I could not be more proud of my little girls! I am hoping that by living through the difficulties that they have seen me go through that they grow into compassionate young women who can make a difference!
Although blindness and deafness have been around since the dawn of time technology has only been advancing significantly for these two disabilities in the last twenty years. I am always hearing about new technology and cannot wait until they become available to everyone. Did you hear about the technology Ford has been attempting to allow blind people to drive cars? They had a blind man test drive a car around Daytona International Speedway a few weeks ago to show the world that they are getting closer and closer. I, for one, would love to have that kind of independence again! So, I guess what I am trying to say is live life to its fullest but be careful because you never know if you could possibly lose a little piece of independence.
So independence. I think everyone takes their individual independence for granted. I know I did. I did everything I possibly could on my own and to the best of my ability. Since being diagnosed legally blind a year ago on February 4th I gave up my driver's license and learn how to use a cane. (Although I don't use the cane as much as I should). I have been using assistive technology such as a vibrating alarm clock (not as fun as it sounds!), a abnormally loud doorbell, a sensor in my youngest daughter's room that sets off my vibrating clock to wake me up, and trying to learn braille. These are all tools that will help make me more independent, but life would be so much easier if I didn't have to use them, and especially if I didn't have this disability.
I have had to teach my children how to guide me and how to help me when I need them. They are amazing and I could not be more proud of my little girls! I am hoping that by living through the difficulties that they have seen me go through that they grow into compassionate young women who can make a difference!
Although blindness and deafness have been around since the dawn of time technology has only been advancing significantly for these two disabilities in the last twenty years. I am always hearing about new technology and cannot wait until they become available to everyone. Did you hear about the technology Ford has been attempting to allow blind people to drive cars? They had a blind man test drive a car around Daytona International Speedway a few weeks ago to show the world that they are getting closer and closer. I, for one, would love to have that kind of independence again! So, I guess what I am trying to say is live life to its fullest but be careful because you never know if you could possibly lose a little piece of independence.
Saturday, January 29, 2011
New Facebook page
As most of you know I have Usher Syndrome. This is two separate genetic disorders combined to make one disability. My eye condition alone is called Retinitis Pigmentosa and my hearing loss is categorized as moderate to severe. With the help of hearing aids I can hear almost everything that a normal person hears, As for my eyes, I have tunnel vision. With my glasses I have near perfect vision except for the fact I have no peripheral vision.
The other day I got a message on my Facebook page about a new group forming and thought I would share it with you folks so that you could check it out. It is called "The Low Vision Bureau: Low Vision Americans' Reviews of Restaurants." This is a page where people with RP go to write a review of a restaurant they visited. Most people don't think about how a restaurant can affect a blind person. Yesterday, I went to Applebee's restaurant and the lighting was so dim I could barely see. Thankfully all of the windows were open so that I could see what I was eating!
Also, listed in this page is a photo album of what people with certain eye conditions see. I thought this was really interesting and wanted to share that link with you as well so you can get an idea of what I see.
http://www.facebook.com/home.php?#!/photo.php?fbid=188848417810376&set=a.188848397810378.50901.181609248534293
Check it out if you have time. I think you will be surprised.
Also, I just wanted to say if you ever have any questions please feel free to leave a comment and I will try to give the best possible answer!
The other day I got a message on my Facebook page about a new group forming and thought I would share it with you folks so that you could check it out. It is called "The Low Vision Bureau: Low Vision Americans' Reviews of Restaurants." This is a page where people with RP go to write a review of a restaurant they visited. Most people don't think about how a restaurant can affect a blind person. Yesterday, I went to Applebee's restaurant and the lighting was so dim I could barely see. Thankfully all of the windows were open so that I could see what I was eating!
Also, listed in this page is a photo album of what people with certain eye conditions see. I thought this was really interesting and wanted to share that link with you as well so you can get an idea of what I see.
http://www.facebook.com/home.php?#!/photo.php?fbid=188848417810376&set=a.188848397810378.50901.181609248534293
Check it out if you have time. I think you will be surprised.
Also, I just wanted to say if you ever have any questions please feel free to leave a comment and I will try to give the best possible answer!
Friday, January 21, 2011
What to do?
This weekend the windchills have slipped into the negatives... brrr! So I am staying inside as much as possible with the exception of going to my mom's house so that she can help make make 8 ragdolls for Gabi's girl scout troop members. How can I do crafts? Well, I am legally blind, not completely blind. Basically, I have tunnel vision. This means I cannot see people stand next to me or little children standing directly in front of me. With my glasses I have perfect vision. What a cruel irony huh? But at least I can see my children's beautiful faces, the beauty of nature, read my beloved books, and do my crafts.
My oldest asked me the other day "Mommy, why did you have to be blind?" How do you answer that question? So I thought for a minute and replied "I don't know baby, but maybe it is supposed to make you grateful for the things you have and make you feel compassionate for others who don't have what you have." She thought for a minute and said "I am friends with the autistic kids in my class when other people ignore them." I couldn't say a word but hugged her silently then pulled away, looked into her eyes and said "I am very proud of you." Of course she blushed, but it was true. My nine year old little girl is growing up so fast!
My oldest asked me the other day "Mommy, why did you have to be blind?" How do you answer that question? So I thought for a minute and replied "I don't know baby, but maybe it is supposed to make you grateful for the things you have and make you feel compassionate for others who don't have what you have." She thought for a minute and said "I am friends with the autistic kids in my class when other people ignore them." I couldn't say a word but hugged her silently then pulled away, looked into her eyes and said "I am very proud of you." Of course she blushed, but it was true. My nine year old little girl is growing up so fast!
Saturday, January 15, 2011
One of my New Year resolutions was to write in this blog at least once a week. I don't know if I can do it but I will certainly try!
Last week I wrote about my Winter blues and how the bright light hurts those of us with this eye condition. I don't think most people really understand what it is like to be legally blind. Sure, everyone can close their eyes and say "wow, I don't think I could do this." We legally blind or even us Usher people didn't choose this nor would we ever have chosen this life. It was simply genetics. One bad one from each parent.
Every morning I wake up and think "what a blessing" and then I rub my eyes, which are dry and full of gunk (a symptom of RP), and then put on my glasses and hearing aid (one because the dang dog chewed on the other) and start my morning routine of making sure my girls have everything in their backpacks. My day continues, full of challenges which include running into things (because I can't see anything below my nose), completing assignments for school, and doing housework all with a two year old up and around. One is going through the worst case of terrible two's that I have ever seen. At then end of the day my eyes are tired and sore, my ear is begging me to take the dang ear mold out of its canal, and my poor legs are screaming in pain from all of the new bruises I have acquired during the day. I crawl into bed, take out my ear, take off my eyes and go to sleep only to wake up and think "what a blessing." And you thought your life was tough try walking in my shoes.... you might want to invest in a pair of shin guards though...
Last week I wrote about my Winter blues and how the bright light hurts those of us with this eye condition. I don't think most people really understand what it is like to be legally blind. Sure, everyone can close their eyes and say "wow, I don't think I could do this." We legally blind or even us Usher people didn't choose this nor would we ever have chosen this life. It was simply genetics. One bad one from each parent.
Every morning I wake up and think "what a blessing" and then I rub my eyes, which are dry and full of gunk (a symptom of RP), and then put on my glasses and hearing aid (one because the dang dog chewed on the other) and start my morning routine of making sure my girls have everything in their backpacks. My day continues, full of challenges which include running into things (because I can't see anything below my nose), completing assignments for school, and doing housework all with a two year old up and around. One is going through the worst case of terrible two's that I have ever seen. At then end of the day my eyes are tired and sore, my ear is begging me to take the dang ear mold out of its canal, and my poor legs are screaming in pain from all of the new bruises I have acquired during the day. I crawl into bed, take out my ear, take off my eyes and go to sleep only to wake up and think "what a blessing." And you thought your life was tough try walking in my shoes.... you might want to invest in a pair of shin guards though...
Saturday, January 8, 2011
Winter Blues
So old man winter decided to finally join us these last couple of days. This is the most snow we have gotten all winter and I think we have a total of 4 to 6 inches. Now here is the thing. We all know that the sun reflects of the snow which makes it hard for anyone outside to see. As a person with RP (Retinitis Pigmentosa) this brightness is very painful. When I go outside without sunglasses on a bright sunny snowy day it feels like someone is taking hot pokers and shoving them into my eyes (Not that I have ever had that happen, but I imagine it hurts all the same). I have two very large sunglasses that fit over my sunglasses for days like these but personally I would rather stay inside where all of my curtains are closed and letting the minimal amount of sun in. We RP people prefer overcast cloudy days, besides who wants to be outside in 18 degree weather besides my kids?
So here is my tip of the day. If you are talking to someone who has RP or is legally blind outside, put their back to the sun, Our eyes are really sensitive so help us protect what little vision we have left.
So here is my tip of the day. If you are talking to someone who has RP or is legally blind outside, put their back to the sun, Our eyes are really sensitive so help us protect what little vision we have left.
Wednesday, October 13, 2010
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.
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.
Monday, June 21, 2010
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
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
Saturday, June 5, 2010
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!
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!
Monday, May 24, 2010
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!
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!
Tuesday, May 11, 2010
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!
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!
Thursday, May 6, 2010
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!
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!
Saturday, April 24, 2010
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!
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!
Saturday, April 17, 2010
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.
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.
Friday, April 16, 2010
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.
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.
Friday, March 26, 2010
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.
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.
Wednesday, March 24, 2010
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!
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!
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