Tuesday, January 1, 2008

It's the New Year, 2008, and starting out my new blog!

With the New Year, I've decided to start a blog, in the madness and encouragement of friends as well as at the request of several about the upcoming journey that I'll be going on to receive my first seeing eye dog. So I hope for this to be a place to journal my crazy world and share with friends and family what is going on in our lives. :)

Being a mom of a toddler, a preschooler, and a 7 yr old, and with my ever diminishing vision, it's been a life of ups and downs, temper tantrums, kisses, sorry's and of course lots of hugs. My wonderful hubby has by far been awesome in our journey together with our three kids and dealing with life of having Ushers Syndrome.

So kind of a background of my life here in the now snowing world of central Indiana, Hubby and I met at Purdue University and were good friends first before we began dating. We were then engaged and had our wonderful wedding in December 1997. (Yeah, we just celebrated our 10th Anniversary! :D ) Then we were blessed with our first daughter, KT, on August 2000. At this point I began noticing I was bumping into things and hitting the doorways, misjudging how close I was. When KT was 6 mos old, I received the diagnosis of Ushers Syndrome.

I have always been deaf and worn hearing aids since I was three years old. My hearing was always fairly constant and having lived a life with hearing loss, I didn't think anymore of it. I'd fully learned to live in the hearing world and function well as a new mom, a wife, and independent person. So when I got the dx of Usher's Syndrome, you talk about turning my world upside down. There was no history of Ushers Syndrome in my family, and it is indeed a hereditary disease. It is a form of Retinitus Pigmentosa (RP), a family of diseases that people know the more common form of RP as Macular's degeneration.

Ushers Syndrome however, is the only form of RP that is both hearing and vision loss together. It is very, very rare because it is a genetic recessive trait that has to have a mutation occur as well. So the odds of having it are so very slim, (Only 0.003% of the U.S. population has it) that when I walked into the specialist's office and then the exam room, it was set in my mind that there was NO WAY that could be what I had. I was sure that it HAD to be separate hearing and vision problems. So when the Dr. looked at me and said in 5 minutes of examining me, that he was 95% certain that I had Ushers Syndrome, you can imagine the shock, the horror, the tears and all the flowed forth. I felt like a freak of nature, I wanted to just hide and crawl in a hole and disappear. I didn't want to be around anyone or anything for about 2 wks. Then I finally came out of my hole and started to try to face the world as a person with Ushers Syndrome.

At this point, I came to the conclusion that if I can't beat it, I was going to educate myself on it and live with it to the best of my ability. At first this was easy, I could hide it and no one knew except my family. I just had to slow down more and take things easy, and no one would know. This was around May of 2001 and by October 2002, I found my vision taking a serious decline. I was still driving at this point and through Vocational Rehabilitation, I went for a driving evaluation on January 21st, 2003 and they told me what I expected. That it was no longer safe to drive anymore. I do still carry my keys, so that I have them whenever Hubby and I are out together and I need to take the kids on out to the car or need in the van for something we forgot. But honestly, I had been mentally preparing myself for that day and the fender bender I had on the 19th, just a couple of days prior to the driving test, drove home the point that while I was a good driver, I couldn't control those around me so it was indeed time to hang up the keys. Not easy, but needed to be done.

I also began my white cane training, after many knocks, bumps, bruises and collisions with different things and people. Gosh, that was hard. I didn't mind being out where I didnt know the people, but walking with that cane with my instructor, in front of my workplace and seeing the jaws drop to the ground when people I worked with who had no idea of my situation, you talk about wanting to crawl in a crack and hide. At this point I think the whole "Why Me!?!?" mentality set in and I went through some serious ups and downs as well as frustration with wanting to have a second child and it just wasn't happening in that grand plan of mine. But never fail, the Man upstairs has his grand plan for us all! :)

Hubby and I took a weekend to go to Kings Island with the OADB group, and met for the first time an AWESOME lady, Lynne, from the ushers syndrome listserve that I was then on. It was really our first interaction with other deafblind people and Hey! That cane was pretty useful in parting the red sea walking through the crowds! LOL! So the cane did have it's advantages! But I have to be honest, I didn't use it unless I really had to at night, and most times I used the excuse that it took too long to get it out and set up, and would just grab Hubby's arm and have him guide me at night. Because at night I cannot see ANYTHING. Seriously, you are talking run into the big white wall, seeing nothing.

Three and a half years after KT, we were blessed with our second daughter, MD, in February 2004. I was no longer driving, riding with my stepmom to and from work and still making good money working as a Data & Systems Analyst, doing quality control checks on registration processes for the health care system that I worked for in Indianapolis. We made enough to pay for childcare for both girls and working outside the home was all I'd ever known. But as my vision continued to deteriorate, we were finding it more and more stressful to get everything done, keep up with the house, get me to and from where I needed to be and having to rely more and more on other people. Hubby and I were just finding ourselves literally dropping at 11-midnight each night from exhaustion and trying to catch up, only to get up at 4-5am the next morning to start it all over again.

In April of 2004, I received an invitation to come to the meeting of the newly forming Indiana Deaf Blind Association (InDBA). It was my first real interaction with deaf blind people and for the first time met other people with Ushers Syndrome from here in my local area of Indianapolis. What a thrill it was to realize I am indeed NOT alone! Over the summer, I began to attend the meetings for InDBA and became more involved with these awesome and unique people. To my dismay, I found out in September that i'd lost 15 decibels of hearing in both ears. YIKES! My hearing hadn't changed at all since I'd been dx'd with a hearing loss at age three and then all of a sudden I'd lost 15 dbls in each ear! I also seemed to have a pretty good loss of vision too by the reports of the next visual field test taken. UGH! Not cool!

Then to our surprise, we found out we were pregnant again just after Christmas in 2004. I was excited and all, as we'd pretty much decided we wanted another child, but when I realized that we were looking at 18 mos between MD and the baby, uh let's just say I was freaked out! LOL! However, we were blessed with AC in August 2005, and our family just feels complete. :) I quit work at the end of June before I had him to become a stay at home mom and it's been such a wonderful experience. However, after this pregnancy too, Hubby and I began noticing that I was missing a lot of things, not hearing well and so forth. So it was time for more hearing testing.

I was tested in May of 2006 to find out I had indeed lost another 15 dbls of hearing in both ears yet again! AAARRRRRGGGGHHHH!!!!! This meant that I now had to go back to the behind the ear hearing aids I wore as a child to have a HA strong enough to meet my needs. I was now at the point that I was in the 95-105 dbl range of hearing in both ears unaided. Basically that means I cannot hear anything that is any more quiet than a chainsaw running! Thanks to the technology of Sonnovation, they have created a HA that not only compresses sounds down the audiogram, but across it as well, to bring normal sounds back in to the hearing range that I have. These have been awesome and have opened a new world for me that I hadnt heard before. I heard the buzzer on my oven for the first time. LOL!

So by 2006, Hubby and I were now the crazy parents of three kids and we've become very involved in our church in the Outreach ministry, the Disabilities ministry, and community groups. Hubby went to New Orleans on a mission trip with our church and worked with Crossroads Ministries in Katrina Relief efforts. I also became heavily involved in InDBA, becoming the Secretary/Treasurer, and attending meetings on a regular basis. AC was at this point walking and getting into everything, MD was 2 and being a 2 yr old, and KT had started Kindergarten. I was also then watching another little girl, three months younger than AC, to supplement our income. We'd joined up in community groups and began making some pretty close friends. As with the nature of Usher's Syndrome, I was continually having gradual loss of vision .

We rung in the new year in 2007 with two ER trips in the first week. ugh! AC took a tumble and gave himself a bloody nose and we thought it may have been broken, as swollen and discolored it became right after he did it. Thankfully nothing was broken, but we were glad it was safe and not sorry! Then KT and I collided, in which I fell over and on top of KT since I didn't see her. I landed right on top of her chest and with the bulk of my weight. After several hours and a large knot at her lower rib and she was still complaining of pain, a call to the ped sent us straight to the ER for xrays. Again, thankfully nothing serious, but now I was really beginning to question my ability to watch children and parent my own children. I then went to the eye specialist for my annual exam and he confirmed as I'd been suspecting, more loss and at that point, some white scar tissue beginning to form, which he said he knew would begin at some point, but didnt know when. He also told me at that point that I shouldnt be watching any kids under the age of 3. Uh, I have 2 kids under 3....

So after much discussion, I let my daycare baby's parents know that once she was of preschool age, that I needed her moved to preschool and at this point I began seriously looking at different options for a guide dog. The kids were all now very mobile, going in different directions and going out together as a family was getting to be chaotic. Hubby has already been doing all the shopping and so forth anyway, but to let me and the kids get out of the house, we'd try to go out from time to time, but it'd end up being super stressful for both of us. Hubby would be wiped when we got home, from trying to wrangle all three kids and make sure I wasn't walking into things as well, even if I was using my cane.

So I began my research on the guide dog schools and to my dismay, found that it required going to the school for training for 4 wks. I was NOT thrilled with the idea of leaving home for 4 wks and it wasnt feasible for us either in terms of childcare. So I did apply for Guiding Eyes for the Blind, and was expecting to be on the 2 year wait list, but they came back to inform me that because I did have hearing, that I would be in the normal classes and therefore it'd be around 6 mos that I'd be called to go for training. But they did say too that I needed to obtain more formal Orientation & Mobility training and then they'd come evaluate to see if I qualified for a guide dog.

Then in March 2007, Hubby and I both went through Great Banquet,
http://www.iwgb.org/, and reconnected with God and His awesome ways! That weekend was a weekend away from home, from Thurs night through Sunday night, and it was very obvious that I indeed was NOT ready to be away from home for very long. So at this point, I pretty much dropped the idea of getting a guide and we continued along in our crazy lives with three kids. MD started preschool in April, which was awesome for her. She has blossomed so much in knowledge and personality since being there.

Hubby and I then went up to Detroit, MI in July, for a long get away weekend in celebration of our 10th Anniversary this year. We had a good weekend together, but we went to a large mall and had done quite a bit of shpping. I was using my cane as I have had more loss of vision and Hubby was loaded down with shopping bags. We were trekking along to head out to the car, and with the exit in sight, a young blond girl came walking right across in front of me, even with all of Hubby's efforts to head me off and get my attention, unfortunately to no avail. The cane wound up between her legs and she snapped it off at the last section. The end of the cane went clattering across the tile floor, and the girl stumbled a bit, but just turned around and looked back and kinda went "Eh, Whatever!" and kept right on going. Hubby was furious, I was shocked and startled, as I didn't even see her. All I saw was a blur of blonde hair and felt the cane almost jerk out of my hand. I was now away from home, w/o my cane for the rest of the weekend, and on a mission to find a guide dog school that would do in home training!

I came home and began my research on the schools and an awesome lady named Jenine Stanley emailed me and hooked me up with Guide Dog Foundation for the Blind (GDF),
http://www.guidedog.org/ . I got my application completed and submitted with videos and all in late August/early September. I then was waiting for my cane trainer to get his form turned in and while we contacted him multiple times, including GDF, none of us were able to get a response from him. So GDF graciously waived my O&M training form, and reviewed the videos I'd sent to assess that. It was an awesome day in November that I received word that I had indeed been approved to receive a guide dog for a combination training, where I'd go to NY for 10 days and then the instructor would come here to my home and do the rest of the training here for me. I then joined up on the GDF talk list, as I "met" online all kinds of puppy walkers, grads, school members, and others waiting for thier class dates. I have learned soooo much from all of them, it's been awesome.

Then came the call, I'll never forget this day for the rest of my life! LOL! It was on Friday, Dec. 21st, the day after my 10th Anniversary, of which I MISSED the first call from Barrie of GDF on the 20th, as we'd went out for dinner for our anniversary, but Barrie called back on Friday and said that I needed to clear my schedule from January 14th through January 25th.


Oh my gosh, I was bouncing off the walls and on cloud 10009 for sure! LOL! I was shocked as I didn't think it'd be that soon, but gosh I am soooo happy that it is. I am excited and nervous all at the same time. Everyone is so happy for me too and I have to say I'm in awe and soooo thankful for all of the family & friends who have rallied around us to help us during this time in terms of childcare and taking care of things for us and so forth. It's just been awesome to see how God's hand is in all of this.

It is also such an awesome thing, that Hubby and I are also on teams for the late February/March and mid March IWGB's #7 & #8. We were really worried what we were going to do, about scheduling the training with the dog when it came and around the weekly banquet team meetings. Well, His way works again, as the two weeks that I am gone for training, are the two weeks that the team meetings DON'T meet. How awesome is that! :D So we are good to go for the banquets and meetings and all.

So bringing us to the new year, I'm starting off the new year with a cold and sinus infection, but with the meds I now have, I should be feeling better soon. We have found awesome homes for both Lisa and Yogi, our pet dogs, and comfortable with the placements and it's quite a relief that they are in homes they'll be loved. I'm also in a really busy state, trying to get things set up for the kids, Hubby, and bills paid and so forth before I leave.

So I'll try to be diligent in posting to my new blog and keep everyone up on what's going on here! :)


Cookie's Mommy said...

Just wanted to say Hi and Happy New Year. Best of luck in NY when you go!

Shari said...

Kacie, your blog looks great!! I've bookmarked it.

Good luck with your guide dog. Great way to journal about it!!

BTW, great title for a blog!! Now that I think of it, I did use it as a title for a post a while back. LOL.

Andrea said...

Kacie! I am so glad you have a blog!!! How exciting! I look forward to hearing progress on the seeing eye dog.