I haven't written for a few weeks! I still struggle with the whole "tell-all" of my daily obstacles. But I am sure before you know it you'll be able to come up to me and just start chatting like old friends!!
Imagine a little child eating their first piece of candy. They look at you with their bright, wide eyes and says "Oh, just one more pllllease?" the parent just melts and gives them another.
I am at the point today just saying to God "Just a little while longer plllease?"
A little taste of my reality quickly approaching as the world around me shrinks in my view. I had to ask for the first time today for a large print menu when I couldn't read the new LED menu on the wall behind the counter. They didn't have one!!! So I just ordered a bunch of chicken nuggets and sandwiches......
My crochet is possible with my husband's eyes for assistance on where to position things in the right areas, like the nose in the center, things like that. And I love him for being my eyes so to speak, but how is that fair?
Isn't it enough that driving was taken from me so young?
Or not being able to see our beautiful night sky?
Or that playing catch with my kids is not possible?
Or even to go a day without some type of anxiety that I can't see where my kids are and they're right at your feet?
All I ask.... Just a little while longer please...will God give in? Until then I will soak in as much as I can into my memory to brighten the days of darkness.
I have decided recently to start publishing my notebook of patterns and hoping one day to have them converted to Braille or put on audio for the visually impaired. There is not a whole lot of patterns for them to choose from. I can't wait to get that process started!!
If you would like to see the patterns I have published and stay up to date on new ones please visit: http://www.craftsy.com/user/1013830/pattern-store
I do things a little different. I do not gauge, I cannot sit there and tediously count my stitches in however many inches. I cannot count how many times in the past making swatches I would get interrupted and would have to frog the whole thing!!! I use a lot of measuring and math! That's right I said math. Who knew you'd need it in crocheting?!!!!! So I provide measurements for circumference and height of the hat. Everything else in my mind is just frosting, who cares of its 1/10th of an inch smaller than mine? It will look great and you know what? YOU made it!!! As my husband would sau, those small differences makes it yours and unique. Although as I have sometimes given him the stink-eye at times when I want it EXACTLY like my inspiration (like recently Hermey the dentist) I have to agree with him.
So keep an eye out, even though I was kicked down in the dumps today, rest assured I will be back hookin away tomorrow! Winter is approaching quickly so I will be creating a lot to share!!!
Who wants to play a game?
I am forwarning you this is kind of a downer today.
Having a relationship with me can be a "One Way Street". I can't drive and meet you or visit. I can't call from the non-hearing aide compatible cell phone or call long distance from the phone I can hear on.
I have one friend who regularly calls me at least once a week. They know and understand my limitations and is willing to take the "driver's seat" in a sense.
I try to host parties at least once a year to get everyone together. Sometimes I don't feel important enough for them to show up. Some will just take me for granted and say "oh I'll make the trip next month". A month goes by then next thing you know its been a year. Why can't everyone I love around me come spend one day out of 365 days of the year? Am I not worth that? Or My family? Yes I know everyone has lives.... Kids..... Finances.... And blah blah..... Who doesn't?
As a new friend told me, "you either have a good reason or a poor excuse".
I am very thankful that I have my Irwin family, my neighbors. I have a "family away from home". Just today I went and visited our "Gramma Away From Home" and gave her some of our tomato harvest. We ended up chatting about anything and everything! I enjoyed chatting over homemade cookies! I May have to make that a weekly date!
For those reading this, you are important to me in some way. Friends and family, I'm sorry I can't drive to see you when I or you want, or call you as often as I used to.
Daily Tip: Call that person you love but haven't seen in awhile. Don't assume they should take that first step and call you. If they are important to you, then call them.
My husband had been sick with pnemonia the past two weeks and yesterday was the first day he felt really good! We all were able to get out of the house and go to the Greenridge Steam and Gas Engine Show. Saw some friendly familiar faces at the vendor show, heard great music and the boys did a lot of firsts!
Our boys got to ride on horses see some handcarvings done with wood, broom making and lots of other old time hard work!
I had a few moments where I felt horrible because we have lived here for a little over a year and really don't know people well. When i meet someone I usually only see their chin and mouth area, because I read lips. So its hard for me to remember people by faces anymore. I'm getting better at remembering names though! Well, there were several people who came up to me or my husband to chat and I have to ask "who are you?" is there even a nice way to say that?! If there is please let me know!!!
At the Show they had a lot of their activites inside of barns. We would walk up to the doorway and i feel like I'm going to step into a black abyss of nothing. When I'm outside in the bright light everything indoors is completely dark. After going in i would usually have to take 10-15 min for my eyes to get used to it, but, my boys wanted to go-go-go! I was lucky yesterday I dd not knock any displays off! Lol! Now leaving a building to go out is a little different, standing in a doorway looking out is soooo bright!!!! Would almost feel like stepping into peace, but its not, its actually kind of painful in a way. I'm not sure if I can explain this right but I will try. When I was younger outdoor light did not bother me. I would assume its because the light was able to travel through a larger field of my vision (in a sense, stretched out light) but now, take the toilet paper tube and put at your eyes and on the brightest of days go in the sunniest part of your yard and open your eyes. Its almost like the light bounces around in your eyes!!!
A little different issue i had this weekend involves my 4 yr old. He is a jokester and was pretty onery this week! I was making sandwiches and usually i will have their plates in the middle, butter knife above, peanut butter and jelly above the knife. I take the bread bag and take the twist tie off and put it left to the plate. Take out the bread and put it on the plates and putthe tie back on. Wait a second, did I drop it? Did I accidentally sweep it with my hand and it went flying? Through out this whole frustration my 4 yr old was using his hands to pretend it was a car on the counters. Walking back and forth and making car noises. I'm looking everywhere for this stupid piece of medal, getting frustrated with the noise, I tell Austin to go sit if he wants to eat. He comes back with the twist tie in his hand. Grrrrrrrr!!!! I asked his if he heard me talking to myself? He says yes and kind of giggles. I asked him if he saw me moving everything on the counter to find it, he said yes. I then ask him if he saw me feeling the floor for it? He says yes. I said to him if you saw all that and you know i was looking for the tie thats in your hand why didn't you give it to me? No answer. I said to him that its not nice to move things on people and its really not nice to move things on a person whos eyes arent good. He says I'm sorry mommy, then starts asking all kinds of questions of how, why, when, who, what in regards to why mommy has bad eyes. And i love his answer at the end. Oh. Okay. I have special eyes and i can help! Lol, okay as long as you don't take the tie again.
I've been super busy with filling crochet orders!!! I'm so excited and love hearing the kind words about the work I do. After I get caught up on orders I need to start getting in the habit of making multiple of the same hat so I have some type of an inventory.
Have a blessed Sunday!
I keep forgetting that its not just my family and friends that is reading my blog, I am going to explain what I have.
I was born with a hearing impairment. Pretty common and understood by the public.
I have Retinitis Pigmentosa, or tunnel vision. Not as common but generally the public knows about or heard of it.
Combine the two and it's called Usher's Syndrome. Very rare, other than an eye doc, the public doesn't know.
I also have Vitiligo, white spots on skin caused by the pigment dying off, also another rare disease that isn't seen very often. Very rare for a white woman to have, mostly common in black males. Remember Michael Jackson?
I am a part of a genetic study, have been since I was 15, at Boys Town in Omaha. I was diagnosed there and my family all participated on the blood tests.
Usher's syndrome is a what I call the "Crap Shoot" disease. Both parents HAVE to carry the disease for it to carry on to the children. Both my parents, 1 million to 1 odds that they met in Nebraska at the same time. And had me.... I rather wish we won the lottery with those odds!
My brother is only a carrier with the dormant gene. If my brother has kids with a woman with the same gene, the chances goes up for one of his kids to have Ushers.
Since I have Ushers, all my kids are a carrier of the dormant gene. So far none have the symptoms. The odd thing is even if they don't have Ushers, they can develop Retinitis Pigmentosa later in life.
This is where I am going to confuse you a bit. Boys Town has found the DNA marker for Ushers. Do you remember that 1 million to 1 odds? Well increase it to 5 million to 1, they can't find my DNA marker. The last time I spoke with the geneticist, as soon as I tell them my name, they say "Oh! You're the one we can't find the marker!" well, I'm glad you know me but that doesn't make me feel better! The geneticist is almost wondering if my vitiligo has something to do with my RP. Retinitis Pigmentosa is your pigment dying in your eyes. Vitiligo is your pigment dying on your skin....... Is there a connection? So far we still don't know. Maybe I can get it named after me! Lol.
I found a great video stimulation for what its like to have RP and finally a demonstration on why I can still "see" in what vision I do have.
I think my attention to detail when I crochet or do another craft is higher now than it used to be. Since I can only see one small area at a time. I don't see the overall product until I am done. I work on one piece at a time, put it together and Voila!
I hope this gives you an understanding of what I have.
Daily Task: Tonight when it's dark out (if its clear) study the stars.
I can no longer see them and it was my favorite thing to do growing up. Now my husband and in the past my friends will take me out and describe it for me and I can mentally see it again.
Things I get annoyed with on a daily basis.
If you can remember a moment recently where you've said to yourself "I can't believe I missed that!" take that frustration from that moment and imagine the same frustration from the same thing Every. Single. Day.
I'll give you some examples. When my oldest was still a tot, I can remember lunch cleanups being simple. Clean baby, clean tray and sweep under chair. Simple and done. Over many years its gotten to a point where I was tired of sweeping the same spot over and over again that I just sweep the whole damn floor. It's quicker.
You see, (pardon the pun) when you have tunnel vision along with some spots missing from your vision you can't see whats right in front of you. In order to see the whole picture you have to back up further away from it.
Lets say you're looking through some toilet paper rolls and you look at one item, lets just say a high chair, with the tunnel vision you may only see just the seat, tray or legs at one time. Back up from the highchair until you can see the whole thing.
Dropping things. I swear I need to crochet a chain for everything I use so I don't have to say "Honey (or kids) I dropped something I can't find" all day long!
Going indoors on a sunny day or vice versa. If I come to your house you better hope your breakables are put up. Lol. I can't see anything for at least 15 minutes! This can put a hamper on my gardening.
I use something, put it down for a second then go to look for it and I can't see it. I would have to resort to using my hands to find it. Normally its not an issue unless its a knife with peanut butter or mayo on it. Eeeewwww!
Them: "It's Right There."
Me: "Right where?!"
Its almost comical to me now how much I hear that and its almost a funny thing when the person all the sudden remembers "oh yeah she cant see it" lol. But I get annoyed when they just pick it up without helping me further.If you need lessons, call my hubby! He's got it down to a science. He would say, "It's on your right about 1 step forward at the 2 o'clock position.
Looks are deceiving.
Deaf people have a mumble when they talk.
Blind people have weird lazy eyes.
I don't. These are awful stereotypes.
I may walk to my neighbors without my cane. I've walked it enough to know there usually isn't any obstructions. Then the next day I walk downtown or my son to school, I do use my cane. I usually find all the cracks to trip on, holes to twist my ankle or a puddle to slip in. Ya, I'll take my cane.
"Too Fast For Me"
I cannot see anything that moves semi fast. Don't bother using your hands while you talk around me, I cant see it. I can't keep my eyes on a frisbee hurdling towards my head or a football. On a positive note, I can't see bugs flying by. Lol.
There are some upsides that I joke about occassionally. I don't shop black friday anymore but if you need to beat the crowds I can be the leader and the crowd seperates like the red sea.....
Another Joke I have is That I always have the right of way in traffic.
If you don't know the white cane laws as a driver please look it up. It does state any person crossing a road has the right of way. Even if you have the green light. When I attended blind training to learn how to cope with blindness we had to take a "Travel" class. It was a class to teach you how to go places on your own with your cane. They usually ho with you a few times but then you're on your own with a destination given to you by the teacher. When you cant see you rely on your ears. You wait to cross when you no longer hear cars. But you always run into those speed demons that slam on their brakes and cuss at you. Its scary! I bring this up only because if anyone were to accidentally hit a blind person te driver would be at fault no matter what the circumstances are. So slow dowm when you see a white cane.
One last perk I like at times, I don't have to be a designated driver anymore.... Lol!
Daily task: if you have kids or a loved one bring their face close to yours and look in their eyes. Study the colors, your reflection and their love for you. Remember that always.
Why is this afghan have such a big importance to me? I don't even think I have ever told my family, not on purpose or anything, it's just an emotional part of my past.
To explain this I will have to take you back 10 years.
March 25, 2002. Why do I remember this day so vividly? It's the day I turned in my drivers license. Also, it's my older brother's birthday. It was at that time I really realized that I was not seeing things in my periphreal that I should be seeing. A few days prior to surrendering my license I swiped my passenger mirror on a mailbox. Where the hell did that come from!!! Ever since that day I tortured myself by asking "What if that was a kid?!" over the next few days I turned in my resignation as a secretary, turned in my license and I was done driving. I had a 3 year old son, and my marriage was falling apart. You see, he wasn't exactly thrilled I gave up my license. We were having problems already but it didn't make matters better that I wasn't driving anymore. I won't bore you with those details. Short version.... I did leave later that summer.
May of 2002. My grandmother, Virginia, was dying of pancreatic cancer. So not only was I dealing with the depression of losing my vision, my failing marriage and now I was losing my grandma very quickly. When I realized how much vision i had lost just in 10 years i started to appreciate the little things that you take for granted with your vision. She had a great knack for crafting that I never took an interest in learning from the "old" people as a child. Yes I know..... They weren't old, as some kids think, grandparents aren't cool, they don't know anything..... Boy do I kick myself for that immature thought.
When she passed away in June I started to really remember and recall memories that I didn't even know I had, Watching my grandma and great grandma quilting or crocheting. I thought I had enough visual memory to teach myself and that I would crochet in honor of them. It took a looong time to figure out how to turn rows without it turning into a triangle! Eventually I got the double crochet down (i actually thought I invented the stitch by just playing around! Lol)
Fast forwarding 4 years to 2005. My Grandpa, one of the toughest guys I knew, became one of the sweetest ones I knew. I had a conversation with him once while we were alone, i don't remember it all (I wish I could) he asked me how I was doing at the blind school. I had finished recently if I remember right and told him i was doing great and was going to culinary school. He actually had tears in his eyes. He had these piercing blue eyes that were so strong looking that it was strange for me to see tears in them. He told me he had never been so proud of me as he was at that moment. I was really surprised, we NEVER had a heart to heart conversation like that. He went on to tell me he was so heartbroken to hear about my vision and was very worried about me. All I thought was this strong man who was a tank driver in WWII and was so stern in my childhood was proud of me? I cried. We didn't have many moments like that afterwards. But it meant the world to me.
I decided to make him something for his birthday that fall. I got an afghan book. Learned how to read a pattern and in my free time I would crochet. I tried every single one of the 7 patterns and I hated them all! They weren't "strong" looking. I can't give a man a lacy afghan!!! I went online and found different stitches. One called the "crazy" stitch. To me it looked "manly" but airy. I think I spent 8 months on that blanket. I finished that blanket a day before his birthday.
I cannot remember who was with me, I think it was my aunt, i gave my grandpa a package and told him it was for him and his birthday. He was kind of shocked. I never have given him something that was from me. Told him grandma was my motivation to learn to crochet and i wanted to give him this blanket. He unwrapped it and studied the stitching and I can tell he was proud of it.
June 2006, Grandpa passed away at home. The afghan I made was given back to me. It was surreal to me. I gave this to someone as a gift and i have it back? I was sure that he used that blanket as I could smell him on it. I took comfort in knowing he used it and knew I made it with love.
Later that year, another dear Grandpa was sick and in the hospital. He had been and still is my motivation for conquering blindness. He always told me I was his favorite granddaughter, even though I was the only one (lol) if you ever need motivation on conquering anything, he is the one to help you just by hearing his amazing story. He was blind with the same disease I am going blind with. He could make you anything out of wood and metal! He was quite the inventor too!
Back to when he was hospitalized. I wanted to make him something to cheer him up. I had this same afghan i made my other grandpa laying on the couch, I had this thought and hope that he could use this blanket and know it was made with love from me. He did like that blanket. He had it for a year before he passed in March of 2007. I again have this afghan back.
I now use it to warm up with and snuggle under. I made it with love and shared it with two very important men in my life, my grandpas. Now I use it knowing their love is in it too from all the times they wrapped up in it.
This blanket will probably continue on to another family member who needs the extra love someday. But for now, I need it.
I want to utilize this blog to show you all a more personal side of myself.
I am married to my husband Rick for 5 years and I have three sons, Jonathan, Austin and Ethan.
I will be sharing with you my daily successes and failures. I do my best to overcome any obstacles I have with limited vision and hearing impairment. I have days where I say to myself "I can't believe I did that!!" and those days where I get frustrated with things not turning out how I want. A lot of the times my frustrations can be quite comical.
I hope to show you a more personal side of my hobbies. I love to cook, crochet, garden and canning.
Please don't hesitate to ask me anything!