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Stories from the OI Community: Now it's Kara's turn

Posted on September 30, 2006 at 10:00 PM

Earlier we heard from her Mother Su, now we hear directly from Kara. If her story doesn't inspire you to do more with what you have, nothing will. Here are her words:

Osteogenesis Imperfecta (O.I.) is not only the medical label for my bone condition, but also an explanation of an important component of my personality. Of course, this has affected the way I've experienced nearly every event in my life. One of the many gifts of unique insight that O.I. has bestowed upon me is a changing perspective of my body and identification as a person with this bone condition. For much of my childhood, I took the stance to "overcome" my, at times, fragile state. I strived to achieve my goals "despite" my body.

Even before I became immersed in a community of other people with disability, I began to change my interpretation of my disability as differences in functioning, not necessarily being inferior in comparison to the way others performed their daily tasks. It's interesting to look back upon my early public speaking experiences. I can now see a changing pattern as I went from listing the many things I could do that were surprising in relation to my diagnosis to providing education on how I lived life in much the same way as those in my audience with a few adaptations and alternative approaches.

I entered college with this attitude: While I was different, I was an equal individual and just went about life in a different way. It was then that I began to learn about the history of people with disabilities. I found my place within both the able-bodied world and within the disability culture. I began to see my strengths as a person with a disability and realized that many of the things that I cherished in life may have been accomplished in part BECAUSE of the repercussions caused by my abnormal bone structure.

My identification with my specific disability became even stronger as I pursed an adapted swimming career throughout college. While many of us seem to really enjoy the activity and freedom of the water, I was often the only person with O.I. at disability swim meets. As I excelled within my disability classification, it became a strange reality that my body was performing better than others, even others with different disabilities! At times, it was frightening to rely on a body that had at best been unpredictable for most of my life.

As I trained harder, I asked more from my body and it responded. It’s been essential for me to build a mind-body relationship with myself and my disability. My swim times got faster, I moved up in rankings, and began to set American and World records. In 2004, I was selected for my first international team, the 2004 Paralympic swim team. I was the only member of Team USA, which included over 400 athletes from all the summer sports, with Osteogenesis Imperfecta. Sometimes the focus of interviews was distracted from my athletic abilities or performance by the nature of my condition. In many ways, it's difficult for people to imagine. It tests our beliefs about what our society defines as strength. Still, being a person with O.I. definitely became a great source of pride for me at this time.

While I remain proud of my specific disability and the traits it has contributed to my personality, I've also discovered other aspects of disclosure as I've entered the professional world. There's no question that discrimination exists within the employment spectrum for people with disabilities. I clearly can't disguise the fact that I'm in a wheelchair throughout an interview, but I've faced the reality that I often need to neutralize my disability references in my resume to even get the chance at an interview.

The nature of O.I. also makes employers nervous. True, their fears are generally ridiculous and based on ignorance. As people with O.I., unfortunately, we rarely have the chance to combat these overreactions before employment decisions are based on these judgments. For this reason, I sometimes remain a little elusive as to the exact name/nature of my disability in certain employment situations. I draw the line at providing false information related to my condition and if directly asked in an appropriate manner, I would most certainly answer honestly. So for now, as a young professional, I'll continue making use of the awkward tendency of people to assume rather than to ask.

My feelings related to my bone condition have changed throughout the years just as the shapes, lengths, and strengths of my bones have altered. I've embraced different identities and have enjoyed the support, guidance, and mentorship of people both with and without disabilities who have found a way to love me and my bones.

If you'd like to learn more about me, feel free to reach me at my web site: www.karaswims.com It’s long overdue for an update, but I feel the motivation coming for that as we speak.

There are pictures from my Paralympic experience and archived blogs I wrote during training and competitions. I contribute to Audacity magazine between working on my Ph.D. in clinical psychology and serving as Strategic Planner for the National Youth Leadership Network. If you are a youth (age 17-28) with a disability, come check it out.

Thank you so much for your inspirational words Kara.

Posted by joeschmidt at 10:00 PM | Comments (3) | post to del.icio.us

We have arrived...

Good friends, good food, and good drink. On with the blogathon.

Posted by joeschmidt at 09:35 PM | Comments (0) | post to del.icio.us

This blog is on the move...

Got a call from some friends to come over and watch some football for a bit, which will be a nice opportunity to get out of the house (yes, I have showered today). They have wireless internet, so while I may be out of the JoeSchmidt.com world headquarters and watching some football, I will keep the updates on this site rolling and spreading the word of the OI blogathon to others.

I will post an update after the move. Until then...

Posted by joeschmidt at 09:05 PM | Comments (0) | post to del.icio.us

Stories from the OI Community: Su's Story

Su is the mother of two children, Kara and Nick, of which Kara has OI. This story truly goes to show that you can do anything you put your mind to. Here are Su's words:

"Disability is not a brave struggle or courage in the face of adversity... disability is an ART, an ingenious way of life." Neil Marcus

I am a parent of a daughter with Osteogenesis Imperfecta, ( O.I.) a name new to me in the coldest winter of January 1980. Kara was the chosen name for nearly seven and one half pounds of more than flesh and bone. Kara was talking and singing to me in our farmhouse kitchen a little over one year of age. I felt so blessed to be in charge of this child. We had many animals on the small farm along with plenty of work. Her love for animals was only countered when her brother, Nick, arrived to be the best friend in her life. Kara was two when Nick was born into our lives. Like twins, Kara and Nick have a precious relationship developed by a unique deep understanding of each other's identity. Each winter since that cold January has been warmer and more meaningful. In one mind set, both of my children were born into O.I.

My daughter Kara was born with several fractures and she created quite a stir in our small capital city as not one doctor knew very much about this rare bone condition. Knowledge is power, so I went outside of the community to Colorado to learn first hand from those who were doing research on O.I. Monies for research were cut off by a conservative administration in Washington before I could get most of the test results, and that began my quest for the "battle of the barriers" for Kara.

I battled for health care as my employment brought my resignation to the hospital when Kara was in traction. This would leave me without insurance. (My employer said I had missed too much work taking care of Kara. ) I battled for her education where she would be mainstreamed in regular classroom. Kara and I spoke to church groups, city clubs and through our United Way of Kentucky to educate our community about O.I.

Soon the battles became a positive force toward understanding. I took Kara to Shriner's Hospital for the best health care possible along with adding group insurance from the public school where I work. Our city cut curbs and added ramps to make the city accessible to everyone. Our school called on me to work with families to present the best education for our special needs children.

Kara had a very interesting education. I recall once when her friends and the families of our community supported our quest to add an elevator to the high school. You see, Kara walked to receive her first communion and even in her 6th grade graduation. But, Kara has taught me that walking can be overrated. It is necessary at times to understand that how you get around is not as important as what you do when you get around.

Kara uses a wheel chair more than her walker which she uses inside her apartment. This is acceptance. Acceptance is constantly fine tuned with each one of our lives and O.I. In the fall of Kara's senior year of high school Nick was a freshman playing first string varsity football and Kara was in the homecoming court. I had invited the grandparents to the game and just before the announcement of Homecoming Queen, I asked my father. "Do you think Kara is the queen?" I will never forget his answer. He smiled and said, "Who else would they consider ?" Kara rolled, not walked to receive her crown and flowers. Who else? Yes, Kara has O.I. but both Kara and Nick are athletic. Kara was racing in her chair in middle school.

I walked beside her and when I could no longer keep up, Nick ran beside her in the races. Kara began to train in swimming and competed in college in adaptive sports. Kara was chosen by Team USA to train and compete in the 2004 Paralympics in Athens's Greece. The entire family cheered as Kara swam representing the United States in Greece.

As you can see, Kara is a positive force that challenges barriers in our society. Kara chose to attend Wright State University in Dayton, Ohio. Nearly two and one half hours away from home, she graduated and now is working toward her doctorate in clinical psychology in Nova Southeastern in Florida.

Kara is nearly two days away from home by car now but Nick, Kara and I manage to fly back and forth to visit and I look forward to every minute we can spend together.

Keeping it real, we have had some very humorous experiences with O.I. The kind grocery clerks want to help me as I had to push the chair many, many trips to the local grocery. Some would pick up the chair before I could give instructions. They would pick up wheels first and both chair and clerk would take a nasty spin. Trips to watch her brother perform as an athlete would challenge us to using large orange pumpkin trash bags to cover Kara and the chair to protect her from the rain. We had to just laugh it off; we figured some persons would stare anyway.

Once after a day of open eye stares, Kara told some children at the Cincinnati Zoo that were staring at her, "This is what happens to you if you don't drink your milk." (We had already explained about her condition about seven times) Kara got stuck in a metal beaded wall of a children's museum in Atlanta when she just "wanted to go through like everyone else." It took us about 20 minutes to untangle the metal from her chair.

Nick, Kara and I spent the long night in an emergency room on New Year's Eve one year. Kara had two fractures from a fall from her chair. All night we were entertained by the long lines of drunks and prisoners who were in the emergency room with us.

Fractures of the bones have never fractured the courage it takes to live in our society as a person with a disability. O.I. is a part of Kara and a part of us and we accept it. The acceptance of O.I. is fuel for demanding high standards of dignity, life, liberty and opportunity in our society.

No Pity HERE. Disability is an truly an ART and an ingenious way of life.

What an inspiring story. Thank you Su for your submission.

Posted by joeschmidt at 07:21 PM | Comments (3) | post to del.icio.us

Preparing The School For Your OI Child

Sending a child to school for the first time is tough enough, now imagine sending a child with OI to school for the first time. Lots of precautions need to be taken, one them should be educating the school about OI.

About.com has a list of 5 things teachers need to know about your OI child. The list contains good advice on what educators should know about your child and their OI. The site also has printouts you can download which are various OI related fact sheets.

Posted by joeschmidt at 06:47 PM | Comments (1) | post to del.icio.us

How Small Is The iPod Nano?

I thought I would give you, the reader, a few examples on how small the iPod Nano I'm giving away (Thanks to Cory Reinert at Insight.com) really is. It's hard to imagine its size unless you have it in hand. Apple really does a phenomenal job designing their products. Even the packaging is "sexy" (well, as "sexy" as packaging can be, that is)

First the Dimensions:

The iPod Nano is 1.6" wide, 3.5" long, and measure a minute .26" thick. How much does it weigh you ask? A mere 1.41 ounces. But don't let it's small size fool you. Inside it packs a 4GB hard drive, enough to hold 1,000 songs. It has a color display that is 40% brighter than the first generation iPod Nano, and it has a battery life of 24 hours.

Did I mention you could use this as a photo album?

Yes, you can store around 25,000 pictures on this thing. So the next time your want to show someone a picture of your kids, just whip out your iPod Nano.

In fact, the iPod Nano is so light, two Star Wars action figures can hold it up.

Compared with the first iPods that came out. This thing is amazing.

Be sure to donate so you get a chance to win it!

Posted by joeschmidt at 06:16 PM | Comments (0) | post to del.icio.us

Ask the Readers: What Kind of Toys Are Good For Children With OI

While kids with OI may be fragile, they like to play just as hard as your average kid. Though as a parent you should be concerned about what kind of toys your OI child has. Are there sharp edges, could my son/daughter fall on this toy and possible fracture a bone. All kinds of things need to be evaluated when buying a toy for a child with OI.

So if you are the parent of an OI child, are there any toys you would recommend that are both safe yet fun for your kidlet to play with? Leave your answers in the comments below.

Posted by joeschmidt at 05:29 PM | Comments (2) | post to del.icio.us

How To Check If A Charity Is "Legit"

Charity Navigator is a web site that helps you evaluate charities looking for your money. It also looks at the charities efficiency: how much money they receive and how they spend it. It then will rate your charity vs. similar charites so you can judge how it performs. This helps you spend your charity dollars more wisely, allowing you to donate to the charity that best uses its money.

Here is a link so you can research the OI Foundation and see how they handle their money.

Posted by joeschmidt at 05:18 PM | Comments (0) | post to del.icio.us

Stories From The OI Community: Jean's Story

Jean is a Mother of 7 children whose son Jake has OI. They are a big family, but they know how to "roll with the punches" that OI delivers. Here are her words:

Our son Jake was born with severe OI. He had several breaks before he was born that healed incorrectly and several new breaks during the birthing process. We have a very large active family (7 kids). Adding a newborn with very brittle bones to this crew was a challenge. The first year he spent several months in the hospital due to respiratory problems. It seemed like every time we picked him up, we broke something, but often did not know where the break was. We just knew he hurt and screamed. We learned early that we would have to deal with the breaks and make them a part of our everyday life, or we would have to change our whole lifestyle.

We did learn to live with OI, we embraced it if you will. We did not let the frequent breaks change what we did. Often we were late for a party or appointment because Jake suffered a break as we were putting his coat on. BUT, we learned to give the pain meds, splint the break, softly load him up and go on with our life. There were times OI was the boss, but the family rolled with the punches.

For the first three years, it was not uncommon for the older kids to come home from school to a note that said, "Jake is in the hospital, pop in a frozen pizza. Love you, MOM" The whole family pitched in and life went on. We did get cell phones so we could always keep in contact with each other. I vividly remember standing in a checkout line on Dec. 23rd and getting THE phone call. "Jake is broke, you need to come home now." I asked to speak to Jake who was 3 years old. I asked him if he was broke a little bit or bad. He told me pretty bad. I asked if he needed to go to the hospital or if he needed Advil or if he needed valium. He told me between sobs that he needed valium and a splint. I judged that it was broke, but not too badly, so stayed in the checkout lane with my precious last minute gifts, and directed Dad to give the meds needed and not move him until I got there to splint him.

Twenty harrowing minutes later I walked through the door to a fairly calm house, splinted a broken arm and dressed for our party. We arrived in our Christmas togs, smiles (though Jake's was a little 'dopey') and great Christmas spirit. This is when I knew we had succeeded in incorporating OI into our family.

Our son still breaks several times a month, but he does not let a broken bone stop him from doing what he wants to do.

Thank you Jean for your story.

Posted by joeschmidt at 04:21 PM | Comments (2) | post to del.icio.us

Our Clock: Friend or Foe?

We have this clock in the main blogathon command post area that chimes every quarter hour. I haven't figured out yet if this is a good thing or not. You see, every time it chimes, it serves as a reminder that I need to file my next post in the next 15 minutes. If I wasn't so "long-winded" with some of these posts it wouldn't be such a big deal. Oh, there it chimes again, I gotta get cracking.

Methinks it will be coming down off the wall soon.

Update: A reader just asked if our walls are pink. I can confidently say no, It's just the color of the clock bleeding into the image. The JoeSchmidt.com world headquarters is void of anything pink. That might change if our "new hire" happens to be female.

Posted by joeschmidt at 03:47 PM | Comments (1) | post to del.icio.us

Blogathon for OI Donation Update 2

You people are awesome! As of this writing we have generated $385 so far for the OI Foundation. But we are still along way from the $1000 goal. So tell your friends, your friends' friends, or anyone with a pulse to come on over to JoeSchmidt.com and donate to the OI Foundation. Who knows, you could win the Silver 4GB iPod Nano.

A little while ago I added the "donation thermometer" on the right sidebar to track our progress. This doesn't update in real-time so I have to manually update when I get a chance. To see what the current donation amount is click on the thermometer to go to the OI Foundation blogathon page. There you will find the official donation thermomter which DOES update real-time as the money flows in.

Thanks again to all who have donated thus far.

Posted by joeschmidt at 03:37 PM | Comments (0) | post to del.icio.us

Use Google Alerts to Monitor Developing News Stories

While doing research on OI related topics, I stumbled across Google Alerts. This Google service will monitor developing news stories based on the search terms you specify and email you links to the stories. You can tell Google Alerts to email you links, either once a day, as it happens, or once a week. Very helpful for keeping up-to-date on topics in which you have an interest.

Posted by joeschmidt at 03:10 PM | Comments (0) | post to del.icio.us

Ask the readers: Submit your favorite On-Line Support Groups for OI

This is a great opportunity for those of you in the OI community to help others. Since I do not have OI, I may not be familiar with all the different groups and on-line discussion sites available to someone with OI or a person who cares for someone with OI.

Yahoo Groups is a great place to start as they have many groups listed for OI. You can check them out by clicking here.

So I am asking your help to compile a list of on-line OI support groups. Leave your submission in the comments below.

Posted by joeschmidt at 02:27 PM | Comments (1) | post to del.icio.us

Stories from the OI Community: Stacy's Story

This next entry comes from a mother of an OI child who adopted her son without knowing he had OI. She and her husband and truly beautiful people. Here are her words:

I am a parent of a child with OI. My husband & I adopted our son at birth. He is now 19 months old. We were not aware he had OI until his first broken leg.

Two months after his birth is when he had his first break. We didn't even know he had broken anything. He was crying and we took him to emergency care to see what was wrong. He was a premature baby and we thought he just didn't feel good for whatever reason. Maybe an upset stomach.
Well, the horrible nightmare began.
The doctors discovered after a day of being at the hospital that he had a fracture. When we told them that we didn't know what had happened, things turned incredibly horrible for us. They brought in SRS and started questioning us. We couldn't believe what was happening. We would never hurt our child but we were in a situation that we had to prove our innocense.

It was the most hurtful thing that has ever happened to us. The most horrible nightmare that we found ourselves in. To be treated this way when we did nothing wrong.

We had had several people tell us about brittle bones disease and even had done some research for us, so we pushed to have him tested. Sure enough, two months later, the test came back that he does have OI, Type IV.

By God's blessing, our child was never taken away from us. We left the hospital with him. But, we left with bruised hearts that have been so hard to heal.

This is our story and first experience.

He has since broken the same leg. He fell on a toy. We did have a much better experience at the hospital and were treated much kinder because we had proof he has a serious disease.

Thank you for letting me share our story and how it has affected our lives so far.

I am a very protective mother of my children anyway, but I have to really keep an eye on my very active little boy. I know I need to let him live and experience life, but it is so hard to relax with this disease. We adopted our daughter at birth as well. She is almost 6 years old. She also has a serious disease that she was diagnosed with at the age of 15 months old, Diabetes Type I.

You can see that I have my hands very full. We believe God gave these children to us and brought us together so we could care for them & help carry their burdens. They are the sunshine in our lives and we are very blessed.

Thank you Stacy for contributing your story.

Posted by joeschmidt at 01:26 PM | Comments (1) | post to del.icio.us

I've submitted the blogathon to digg and need your help

Digg.com is a news site read by hundreds of thousands of people. It is unique in that it is a social news site where all entries are submitted by the people. Other readers then see the submissions and give it their vote, or digg as it is known. If a submission gets enough "diggs", it makes it to the front page where it will then be viewed by thousands of people.

You have to be registered on digg to promote stories. So if you are a digg member please vote for my blogathon submission. If you aren't a digg member, register and vote for the story. This is a great way of getting this blogathon in front of as many eyes as possible so we can generate money and awareness for the OI Foundation.

Here is a link to my submission:

Digg.com: Donate to a great charity and win an iPod Nano

Giving this article your "digg" would be a great way to help out our cause.

Posted by joeschmidt at 12:48 PM | Comments (0) | post to del.icio.us

I'm calling my shot...

When it comes to luck, I'm about as unlucky as they come, but last night I was thinking I might be due for some good kharma (you know by hosting this blogathon for OI and everything). So the legal department (my 7 yr old son) and I sat down and picked some numbers for tonight's powerball drawing. If by some chance I were to win the $15 million dollar jackpot, I will donate 10% of my winnings to the OI Foundation.

"Don't you know what the chances of winning the powerball jackpot are???"

Yes, I realize I have about as good of a chance at winning powerball as I do getting hit by a bus driven by an extinct do-do bird on the surface of Pluto. But hey, it's worth a shot.

Here is a picture of tonight's winning powerball ticket:

Check back later tonight to see if we won.

Oh, and don't try to steal these numbers! Their mine : )

Posted by joeschmidt at 12:08 PM | Comments (0) | post to del.icio.us

Sponsor Love: Thanks to Cory Reinert at Insight.com

I can't go any further without publicly thanking my friend Cory Reinert at Insight.com for donating the iPod Nano for today's event.

I searched far and wide for sponsors to donate items for todays drawing. I emailed people at various companies asking them if they would consider donating something. In an act of desparation I even sent an email to Steve Jobs (CEO of Apple) himself asking for help, but no response (though I am not suprised). Cory was the only person willing to help. The OI Foundation and myself give him our heart felt thanks.

Cory is a Strategic Account Executive (read: sales rep) at Insight.com and has 15 years experience selling I.T. equipment. By day, this blog is an IT guy at an architecture firm here in Omaha and I use Cory and Insight.com for all my computer and IT related purchases. Cory's team at Insight.com is very knowledgeable and can offer assistance in virtually every aspect of IT. Whether you need to buy something small, (ethernet cables, usb thumb drivers, or toner), or something large (new office computers, servers, or a $250,000 fiber channel SAN), Cory is your man. Just tell him you know me, JoeSchmidt.com, and he will give you a great deal. He will save you money!

So whether you need to buy a computer for your home, or need to find a great sales rep to buy IT equipment for your business, please consider Cory and the services he provides. Even if you aren't in the market to buy anything, drop him a note of thanks for helping us out with the blogathon.

You can reach Cory via email at creinert@insight.com or give him a call at 1-800-859-5808.

Thanks again Cory, we really appreciate it.

Posted by joeschmidt at 11:39 AM | Comments (0) | post to del.icio.us

Use your web searches to benefit charity

Goodsearch is web page that will donate one cent to the charity of your choosing for every web search you perform through their website. The search is powered by Yahoo!. Many charities are listed and if you don't see yours listed, you can add it.

For example, if you want your searches to benefit OI, just simply type Osteogenesis Imperfecta in the goodsearch box in the middle of the page. Goodsearch will find your charity, if not it will ask you to type it again or possibly add it. Once your charity is added, you can click on the amount raised button to see how much money was raised for your charity.

Here is what has been generated thus far for the OI Foundation through GoodSearch:

They also provide a toolbar you can download and integrate into your web browser to make using Goodsearch more easy.

If I had been GoodSearching instead of Googling, I would have raised $63.57 for OI last year. I am going to have to rethink my search methods.

Posted by joeschmidt at 11:09 AM | Comments (0) | post to del.icio.us

Blogathon for OI Donation Update

Just checked the donation page on the OI Foundation website and we are already up to $185. Thanks to all who have donated.

I'm adding a direct link to the donation form on the right side bar, so it will be easier for people to donate. Don't know why I didn't do this earlier.

Posted by joeschmidt at 10:40 AM | Comments (1) | post to del.icio.us

Stories from the OI community: Kristal's Story

As I mentioned earlier, I had asked those in the OI community to send me their stories to post during the blogathon. This is the first one I received and it is from Kristal, a young woman who recently graduated High School last spring. Here are her words:

Please allow me to introduce myself. My name is Kristal Nemeroff and I am eighteen years old. I have a story to share with you about overcoming a genetic brittle bone disease called Osteogenesis Imperfecta. Surprisingly, more people have heard of less common diseases like Progeria then Osteogenesis Imperfecta (OI). OI is a physical disease that affects one person in every 20,000 - 30,000 people.

My family knew that I was going to have OI since I was in utero. During an ultrasound, doctors discovered that I had a fractured right femur a few months into my mother's pregnancy. Upon this discovery, when my mom was six months pregnant, the doctors took her and my father into a room and asked them if they wanted to terminate the pregnancy. My parents were so appalled that they walked out of that hospital and never went back again! I could not be more thankful of my parents' fearless decision to raise an OI child.

Appropriately, they named me Kristal. My Mom chose this name because crystals are usually fragile, just like my bones. She didn't like the "cry" in crystal and she changed the first three letters. I see now why she changed them. I grew up with lots of fractures, lots of surgeries, and lots of casts, but never grew up with self-pity. In fact, I was taught from my Nana at a very young age that "self-pity stinks!" I had my first fracture when I was six weeks old. I broke my left femur and was put into a tiny spica cast to heal. Throughout my short lifetime, I have had approximately 10 surgeries and 25 broken bones. I have broken my femurs and fibulas many times. I've also broken my arms, vertebrae, ribs, fingers, and toes before. When I was young I would break ribs from something as simple as a bad case of the hiccups!

OI bones can bow outward due to gravity but I am amazingly 4' 6'' tall, which is pretty incredible for someone with OI. I am in a research study at the National Institutes of Health who study OI children from infancy to adulthood. It has been over a year since my last fracture and this has been a huge accomplishment for me. Every single break and surgery just makes me stronger, although it is a scary experience. During each surgery, I have to get my femur broken (if it isn't broken already) and re-rodded. I have metal rods placed in the center of my femurs to give them stability so that I can walk. After surgery, I have to manage a spica cast for six to eight weeks that basically goes from my ribs down.

One of the most terrible feelings I have ever felt, is the feeling of walking into an operating room, knowing that it will be months before I will walk again. I remember waking up in recovery rooms groggy, sad, and alone. I would feel more defeated by the fact that I was lying in a cast in a hospital bed then pain from the surgery itself. The pain of a femur fracture is something indescribable. It is one of those things that you have to experience to fully understand. I never once questioned my faith, because through those hard times, it was all that I had.

My "true life story" is about conquering OI. So many people take walking for granted, but for me, it was a goal and a dream. I used to walk when I was young, but a vicious cycle of fractures made it hard to do as I got older. I used to use a wheelchair and a walker, but now I have accomplished my dream of walking independently. I have always believed in overcoming every obstacle. When I decided that I was going to walk on
graduation to get my high school diploma, I put my words into actions.

I began doing physical therapy at home twice a day EVERY day. I think I might have driven my Mother crazy with my loud music and daily exercise routine, but she knew that I wasn't going to let this dream go. She and I were both nervous about me getting off of the walker and onto a cane full time, but It was a risk I had to take. I would literally be in tears working the muscles that had grown so weak from atrophy due to surgeries, but I would push through it. I knew that if God wanted me to walk, he would somehow help me through it. There were times when I didn't know if I was going to be able to do it. I was just being hopeful and I had this overwhelming desire to walk to get my diploma. When I had my surgery back in ninth grade, I didn't think I'd be able to pull it off. Even after breaking my Fibula in a library in May of 2005 I didn't think I'd be able to do it. By the end of the day I always felt very fatigued, but it was the best feeling of exhaustion ever. Every night after I finished exercising I would thank God that he kept me safe. I knew that I wasn't alone. I knew that God would help me. I'm not sure if it was the exercise or the prayer that let me walk.

On graduation day, I was more excited to walk to get my diploma then to actually get my diploma itself. Oddly enough, I was in the shower when it really hit me, I was going to accomplish my dream of walking on graduation day! I exceeded my own expectations for myself, because not only did I walk on graduation, I kept up with my classmates at graduation practice. I don't know how many times I had to march down that football field, but I did it. It was hard to keep up because one stride of the people in front of me was probably three of my tiny strides, but I actually did it.

Not only did I walk on graduation, I graduated Summa Cum Laude. I've often had to miss school for long periods of time due to fractures but I still managed to keep my grades high. I ranked in the top 5% of my class.

"Mind is everything: muscle-pieces of rubber. All that I am, I am because of my mind." (Paavo Nurmi)

I find this quote very true and inspiring. I am who I am today because of how I think and work.

I feel like I beat OI, that walk was my victory walk. You have to understand that it has taken me so long, and it's taken so much hard work to be able to do something that everyone else usually takes for granted. The hardest step was getting off of my walker for good. It was one of the most frightening steps I had to take because it is extremely risky. All it would take was one wrong step or a tiny mistake and I would have to start all over again. I have broken many bones and endured a lot of pain. I am so
fortunate, how can I ever thank God enough? I don't think I can. I don't think I would have even tried to get this far if I didn't have God in my life. I think I'm starting to understand the "whys" and "hows" I've asked him all my life. I know this may sound hard to understand, but I feel blessed that I have OI. I've learned more about life from what I've had to go through then I ever thought I would. I would never change my past. I may have brittle bones, but I have one tough soul. And as I write this, I am sitting here in my college dorm praying that God will continue to teach me about life, lead me to an amazing future, keep me safe, and do the same for you.

I am a very strong person although my bones are weak. Nothing can stop me from doing the things I love to do!

Thank you for sharing your story Kristal.

Posted by joeschmidt at 10:19 AM | Comments (2) | post to del.icio.us

Thanks to those helping to spread the word

This week I sent out an email to a lot of the people whose blogs I read asking if they help spread the word about the blogathon. Quite a few of them responded and posted about this event, so thanks to all of you.

I've updated my left sidebar with links to their sites. They're all great sites, check them out when you get a chance.

If you would like your link added, all you have to do is "spread the word" by blogging about the blogathon on your site. Send me an email at joe.schmidt@gmail.com if you need more information.

Ed. note: If you don't see the changes, refresh your page.

Posted by joeschmidt at 09:44 AM | Comments (0) | post to del.icio.us

How to leave a comment on this blog

I've already got a few emails from people asking how they can leave a comment on this blog. I realize that there may be some of you who are new to blogs, so if you aren't sure on how to leave a comment, here is a simple guide.

At the bottom of every article I post, you will see a sent of links. To leave a comment, click on the link entitled "comments"

This will take you to the comment form.

Now just...

Enter your name - Your real name or an alias is fine.

Enter your email address - This is required but know that your address will be safe and not displayed on the site.

URL - if you have a website, enter it here. When you comment is published, your name will be linked to the website your provide. If you don't have a website then you can skip this step.

Anti-Spam measure: please type in the blank whatever the text tells you to type. I do this because if verifies that you are a human and not some computer spam bot trying to leave comments on this site that link to inappropriate things. Before I implemented that feature I would get almost 100 comment spam entries a day.

Leave a comment - Type anything you wish, but remember I have the final say on what stays and what goes.

Click Post - And your comment should appear immediately

Happy commenting!

Posted by joeschmidt at 09:03 AM | Comments (0) | post to del.icio.us

What is Osteogenesis Imperfecta?

If you are new to OI and want a better understanding of the disease here is a simple description:

Osteogenesis Imperfecta literally means "bone that is imperfectly made from the beginning of life." OI is a genetic disorder of type 1 collagen-- the protein "scaffolding" of bone and other connective tissues. People with OI have a faulty gene that instructs their bodies to make either too little type 1 collagen or a poor quality type 1 collagen. The result is that bones break easily.

Until the birth of my cousin's son two year I had never heard of OI. Up until that point in time, if you had said Osteogenesis Imperfecta to my response would have most likely been "Gesundheit!" or "come again?" But education is the key to understanding. I'd like to think that 2.5 years later I am better educated about the disease and have a better idea of what it means, how it affects people, and what can be done to help those who have it.

To a first timer, Osteogenesis Imperfecta is an imposing sound term, but to deal with the OI Foundation has provided some great resources:

Fast Facts - Basic info about the disorder.

The OI Glossary - terms and phrases related to OI.

a Guide to Understanding Bone Structure - A look at how the disorder affects the bones.

Introduction to OI - a guide to OI for Medical Professionals, individuals and families.

Also, the Wikipedia entry for OI has some good info as well.

If you have any on-line resources you would like to share, leave them in the comments below.

Posted by joeschmidt at 08:32 AM | Comments (0) | post to del.icio.us

Welcome to the 2006 JoeSchmidt.com Blogathon for OI

Hi, I'm Joe, and I will be your host for the next 24 hours

As you may or may not know, I am hosting a blogathon for the Osteogenesis Imperfecta Foundation. All money raised will go to the Foundation in support of their efforts. For those not familiar with how a blogathon works, it basically means that I will be chained to my laptop for the next 24 hours and will be posting stories, articles, and-the-like every half hour until 8am tomorrow (Oct 1st) morning.

How can you help?

Submit your stories about OI - I want to hear from you. If you or someone you know has OI and would like to tell others about your/their life, please send it to me. You can reach me at joe.schmidt@gmail.com

Donate - Click here to go to the OI Foundation page about my blogathon and click on the link next to the thermometer or click here to go directly to the donation web site. Donations of all sizes are welcome. Plus, for every $5 you donate you will be entered into the drawing for the iPod Nano. As of this writing we already have $35 in the coffers, thank you to those who donated.

Advice - Send me your methods on how to stay awake for 24 hours straight. (Though I've got enough soda here to kill a water buffalo, so I should be good)

So what can you expect to see today?

I've asked those in the OI community to send me their stories about their lives and how OI has affected them. Many people have responded and I will post their stories periodically throughout the day.

I will be giving away two copies of the book What Life Is Like Living With OI which are signed by the Author Patricia Minor. To be eligible to win a copy, all you have to do is leave a comment sometime today or submit your story about OI. Email the story to joe.schmidt@gmail.com

The drawing for the iPod Nano will take place Monday Night (Oct. 2nd). To be eligible, all you have to do is submit your donation sometime before the end of business on Monday. I will announce the winner here on my site.

The layout of my home page will change dramatically throughout the day as I post more info and provide links web sites who have helped spread the word about this event. If something seems broken or out-of-wack, hit the refresh button, as I am probably working on the layout.

One post down. Only 24 more hours to go.

Posted by joeschmidt at 07:59 AM | Comments (0) | post to del.icio.us

A JoeSchmidt.com Staff Update

Posted on September 28, 2006 at 01:15 AM

Big news happening here at JoeSchmidt.com! For quite sometime we have been trying to quietly fill a much needed position here. Our search has taken us far and wide to find the perfect candidate to be the Marketing Director here at JoeSchmidt.com. What we were looking for is someone that is hard working and knowledgeable to help take this blog to the next level.

Now I've been all over Craigslist, LinkedIn and other various social networking/job sites to hopefully fill the position, but we never really found any truly qualified candidates.

But I am happy to announce that the search is over.

We were alerted of the prospective "candidate" back in May and about a month ago we sat down to "interview" them. Everything so far is great. Though there wasn't much communication during our "video conference". I think the connection might have been shaky as all we could hear was a rhythmic beating sound. I grabbed a screen shot from the meeting so everyone could see the new hire for themselves:

Anyway, it looks like the new hire will start sometime in mid January and we couldn't be more happy. The head of the our legal department is hoping that the new hire is female and is named Missy. That way he can say,"Get over here Missy!" or "Get out of my room Missy!". Since this blog is an equal opportunity employer, the question of whether the new "hire" is male or female never came up as that would be an illegal question to ask. We just hope he/she has 10 fingers, 10 toes, and is healthy so they are able to contribute to the team.

We are going to stay in touch over the next 3 and a half months by having bi-weekly visits. And we may even have the chance to have another "video conference". Hopefully the connection will be a little better so we have the chance to communicate next time.

Congratulations to my wife for "referring" the new hire. I think we'll have to work out some kind of employee referral bonus program as I'm sure we will have another "position" to fill in the next couple of years.

Posted by joeschmidt at 01:15 AM | Comments (4) | post to del.icio.us

Where are my "I park like an idiot" stickers when I need one?

Posted on September 26, 2006 at 02:21 AM

Posted from the day late and a dollar short dept. here at JoeSchmidt.com

Back in August I was all prepared to post about our trip to the Nebraska State Fair (or the Nebraska State Poor as I like to call it) and tell you what an absolute abomination it was. But I just didn't have the energy to do it, because quite frankly, it was too easy of a target.

I could have went on for pages about how the facilities were in shambles, the carnies for the most part were toothless, and the ride prices were astronomically high. Not to mention that this blog has a definite aversion for any place where the majority of the food is served on a stick by people whose number of teeth in their cake hole are equal to the amount of digits on their hands. So I will leave it at that, thus saving you from my vitriolic rant.

But the most disappointing part of the whole trip was not the aforementioned points, but the fact that we stumbled across this sight and found myself totally unprepared:

This was the first time I have witnessed a parking job so horrible it actually warranted the use of an "I park like an idiot" sticker. I can't believe I dropped the ball, the shame, the shame of it all.

So in this age of wondrous technological advancements I will attempt to reconcile my short sidedness by photo shopping the image, thus retaining some sort of diginity on my part:

There. Much better.

My apologies dear readers, it will never happen again.

Update: I forgot to mention THE number one reason why I loathe the Nebraska State Fair. The SMELL. You see, the state fairgrounds are located just a stones throw away from a major waste water treatment facility in Lincoln. So when the wind is blowing juuuuust right, you senses become overwhelmed with the sweet aroma stench of human waste.

Just imagine having a belly full of funnel cake and riding on the tilt-o-wirl when all of a sudden it smells like you're riding with a rotting corpse. Yeah, it's that bad.

Lovely. Just lovely.

Posted by joeschmidt at 02:21 AM | Comments (0) | post to del.icio.us

The Apple Store In Omaha Is Open For Business

Posted on September 23, 2006 at 05:32 PM

Early this morning (early by this blogs standards), the entire JoeSchmidt.com staff trudged out to stand in line and be some of the first people to go inside Nebraska's first Apple store, located in Village Pointe Mall. We arrived at 9:15am, 45 minutes before the store's 10am opening, and were greeted by a throng of approximately 300 people. Most of whom were probably lured to the store to get one of 1000 free t-shirts apple was giving away that day. (alright, I admit it, so were we)

Ten Minutes prior to the opening, I heard quite a commotion coming from the back of the line. Turned out it was the Apple store employees cheering and shaking hands trying to pump up those in line. With all the noise they were making you would have thought Steve Jobs himself was there, but I highly doubt Steve has ever set foot in Nebraska.

We made it into the store 15 minutes after it opened. Inside the store was packed, wall to wall people, iMacs, iPods, MacBooks; the Apple reality distortion field was in full effect. I've got to hand it to Apple, everyone knows they design great products but their retail stores are designed just as well.

Here are a few pictures from inside the store:

Shot from the back of the store:

The Genius bar

apparently blue hair better equips you to deal with Mac related issues

The Studio

This is where you can get advice from an Apple Creative

Here is the JoeSchmidt.com staff putting an iMac through it's paces:

And here is an shot of the outside facade:

It took all my might to leave the store without purchasing an iMac or an iPod. The Head of my Culinary Arts Department even gave me the go ahead to get an iPod and also flirted with the notion of how having an iMac would be nice as it takes up such little room. This was reverse psychology at work on her part, I did not cave though.

We left the store, having only purchased an I Spy game for the Head of my Legal Departments Orange/Blue iMac G3. We were handed our free apple shirts as we left the store and headed for home.

Here is the Head of My legal Department styling in his new Apple shirt:

I guess one size really does fit all

My only complaint about the store is...

it's location. The new Apple Store is located in Omaha's newest, trendiest, outdoor Mall. I'm sure Apple did quite a bit of research as where to place their store in Omaha, but this blog contends that they would have been better served by locating the store in an old remodeled building in Downtown Omaha. Granted, they may get a bit more traffic by having the store in affluent West Omaha, but with all the growth happening downtown, the Apple store would have been become a key destination for many citizens AND visitors to the downtown area.

It would have been neat to see an old building retrofitted with Apple's modern style. Though, I guess Nebraskans should be happy they have an Apple store at all.

Maybe next time, hey Steve?

Posted by joeschmidt at 05:32 PM | Comments (1) | post to del.icio.us

The 2006 JoeSchmidt.com Blogathon - Blogging for OI

Posted on September 06, 2006 at 01:37 AM

I mentioned a few weeks ago my intentions on holding a blogathon in support of a very special charity and that I would make an announcement in the upcoming weeks revealing the charity I have chosen. That charity is the Osteogenesis Imperfecta Foundation.

Osteogenesis Imperfecta, more commonly known as OI, is a genetic disorder which affects approximately 20,000-50,000 Americans. OI is a disease that instructs the body to either make little collagen or poor quality collagen resulting in brittle bones. There are four different types of OI ranging in severity. It is very common for those with OI to fracture many bones over their lifetime, some occurring within the womb before birth. It is even possible that one may have a moderate form OI and not even know it.

Since OI is one of the lesser known genetic diseases out there, I thought I would do my part and try to spread awareness and raise money in support of the OI Foundation, and the blogathon is the vehicle I've chosen to do this.

Two years ago my cousin's son was born with OI. Up until then I had no idea such a thing even existed, which I am guessing is the same thing you might be thinking right now. When I heard the news that their son had OI my reaction was Osteo-what? Two plus years later I am much more familiar with what OI is and what can be done to help those with the disease. So hopefully by holding this blogathon I will help make the words Osteogenesis Imperfecta a little less imposing and educate as many people as possible about it in the process.

I've asked those within the OI community to send me their stories, either about themselves, a friend, or a family member who has OI and how it affects their lives. I've already received quite a few stories, so if OI has affected your life, please send me your story and I will post it on this blog during the blogathon. Don't worry if it is really short or really long, any contribution you can make will go a long way. Send your stories to me at joe.schmidt@gmail.com

As of now there is no known cure for OI, but through education, physical/occupational therapy, and surgery those with OI have learned to lead a productive life. Money raised by the OI foundation goes to education and support of those with OI along with research grants given to scientists who are trying to find a cure for this debilitating disease.

So feel free to stop by on September 30th to read up on OI and possibly make a donation. The OI foundation will soon have a donation page on their web site where you can give, and all donations will be tax deductible.

I also have a few ideas on the burner for trying to raise as much money for OI as possible, so if you are in the giving mood and would like to make a sizeable donation, or if you have something else in mind that would help out the blogathon, send me an email at joe.schmidt@gmail.com

Posted by joeschmidt at 01:37 AM | Comments (1) | post to del.icio.us