Karrie

On 9/8/70, my parents had a child that was born with Spina Bifida. If you read my entry from yesterday, you might think that it was me--no it wasn't. My sister, Karrie was born on this day--38 years ago. Unfortunately, she never made it to see her 7th birthday. I have a feeling that this entry will be emotional, but I also want to talk about how special she was--and how amazing my parents are.

When my mom had Karrie, she had no idea that there would be anything wrong with the pregnancy. But, when Karrie was delivered, the doctors discovered that she had a VERY severe form of Spina Bifida. Apparently the delivery was very rough on my mom, so they had to knock her out. When she awoke, she did not see Karrie. At that time, she was very unaware of the plan that the doctors had for my sister.

I'm still not entirely clear about all of the details, but the doctors did not close my sister's back when she was born. They felt that doing such a risky procedure would not benefit her or prolong her life. So she spent a CONSIDERABLE amount of time with an open wound in her back. I firmly believe that if she would have had it closed the day of delivery--then she might still be alive today.

In a nutshell, my sister was whisked away to a MENTAL facility on the other side of the state. My parents were basically told that this was really the only option for her. They wanted the doctors to close up her back, but they all felt that it was a "lost cause." So my sister went to that mental hospital--where she shared space with severely mentally ill adults and children; all the while with a gaping wound in her back.

Apparently the nurses loved her, and they helped convince the powers-that-be to send her back home to my parents. But this did not happen right away, so in the interim, my parents found a doctor that was willing to close up her back.

She had that surgery--along with many others during her short life. In fact, most of my memories of her are hospital-related.

Just a few months after her back was closed, my parents discovered that they were pregnant again. Taking care of my sister was a daunting task and now my mom had to be pregnant right in the middle of it.

They were truly hoping that this second child would be healthy. I can only imagine the heartache on my parent's faces when they realized that this second child was also disabled.

But, that heartache also had a little bit of optimism. My birth was much different than my sister's. The doctors could tell that my level of impairment was nowhere near as severe as her's was. They could tell that I was going to be healthy--relatively speaking. So I had my back closed up on my "birthday"--which is how it is supposed to happen.

I have spent two Christmases in the hospital, in my lifetime. The most recent one was in 1990, and that was awful. However, I spent my very first Christmas in 1971, in the hospital. Coincidentally my sister was also in the hospital at that time. So, we shared a hospital room, and that is how my parents celebrated my first Christmas.

My memories of Karrie are fleeting--but special. I remember that she had a very loud & shrill voice for such a little girl. I also remember that she could move very quickly for a little girl with quite a pronounced disability. She would crawl around the house on this yellow piece of plastic, that I think was called a crawlagator.

Karrie had so much energy and enthusiasm...and everyone that met her was instantly drawn to her. I remember that all four of my grandparents had a special bond with her, and a little piece of all of them died, when she did.

One of the greatest things that Karrie did in her short life was to convince my grandpa to stop smoking. Apparently the elevator in the hospital was broken one day when he and my grandmother went to visit her. He struggled and huffed and puffed, but he climbed up all of the stairs to get to her room. When he got there, he saw that she was on a lot of equipment to help her breathe.

Apparently my sister had always been on my grandpa to quit smoking. It was at that time, in the hospital room when it all finally clicked for him. He realized that his granddaughter was struggling to breathe--like he was at that time. Only his situation was caused by putting poison into his body, and her's was because she was an innocent victim. It was at that time that he threw away his cigarettes and quit "cold turkey."

He would go on to say that this was the easiest decision that he had ever made in his life. He lived until 2002, and I belive that he would have died much sooner--had it not been for her.

My parents discovered that they were pregnant again in 1976. They were nervous, but they felt that things would be fine this time. Fortunately my brother was born healthy, and my parents were ecstatic. I can only imagine how joyous the moment was for them--but it was tempered with worry.

My sister was REALLY sick at that time. She had been in the hospital for quite some time, and my parents were preparing themselves for the worst. To be honest, I have a feeling that my sister knew that she wouldn't be around too much longer, as well.

A couple days after my brother David was born, my parents were able to bring him to Karrie's hospital bed. She actually got to hold her newborn baby brother, and she was so happy. Three weeks after that special moment...she was gone.

I know that I have concentrated a lot on Karrie in this post, but I just want to mention how amazing my parents are. They are still married, and they managed to get through something that would tear many marriages apart. I don't have any kids, and I can't imagine what it is like to bury a child, but my parents had to.

There were times when my father actually saved my sister's life. She had a lot of issues with pneumonia, and there were several times when she stopped breathing--due to the gunk in her lungs. My dad held her upside down, by her legs, and gently shook her to get the stuff out. I don't know how medically sound it was, but it worked.

There are a lot of things related to Karrie's birth that I either left out, or just do not know. I have told my mom, on many ocassions, that she should write a book about the whole experience. She is the most amazing person in the world, and I know that the book would be wonderful.

Before, I close this I want to mention my sister. She was born in 1981--5 years after Karrie's death. So she never knew her at all, but my sister is convinced that Karrie is living her life through her.

Erin, my sister, has told me that she has felt Karrie's presence many times throughout her life...especially on the day that she got married. She felt like she was giving Karrie an experience that she was never able to have. I know that that sounds kind of weird, but it really is a special bond between my sister and Karrie.

This post is something that I have wanted to write for a long time, and it is one of the major reasons why I wanted to blog. This will be my last "heavy" topic for quite some time. I'm normally a very funny, light person. But, I just HAD to write this. Thanks for reading it.

Spina Bifida 101

As I have mentioned before, I don't believe that my disability defines me. It does shape some of my perspectives, but it is not my identity. But, I have mentioned it in several blog entries thus far, and I wanted to explain, to anyone reading this, why I am in the chair.

I'm actually faking it for the parking, but don't tell anyone. :) I have a shirt with "Just in it for the Parking" on it, and I love to look at the reactions that I get from people when I wear it.

One of the reasons that I am going indepth about my disability has to do with a blog entry that I have planned for tomorrow. I have very few topics that I have planned out, and I'm actually being very stream-of-consciousness with how this blog will go. But, I have a very special entry planned for tomorrow, and an explanation of my disability will help you understand that entry.

I have always been disabled. I actually am very happy about that, because I have never known any other way of doing things. I didn't have a car accident, diving accident, get shot, etc. Actually I can't imagine how life-changing one of those experiences would be, and I am so thankful that I never had anything "to lose."

I was born with a birth defect called Spina Bifida....it is Latin for "open spine." Even though it has a very strange name, Spina Bifida is actually quite common. It occurs, to some extent in one out of every 1,000 births. Many people can have the mild form of Spina Bifida and not even know it--or show any symptoms.

Some people with very mild cases of it include--Hank Williams, Sr., John Mellencamp, and former Dodgers pitcher, Orel Hershiser. It is actually believed that Hank Williams, Sr. had more than a mild case of it. Some people believe that is why he was in constant pain, and why he became addicted to painkillers.

I'll try to explain my condition without getting overly technical. When I was born, one of my vertebraes was not fully formed. As you might know, the vertebral column protects the spinal cord. Well, a part of my spinal cord stuck out of the opening in the vertebra. When it stuck out of the opening, it created some nerve damage.

Spina Bifida is a strange birth defect, because it can affect people in so many different ways. The severity of the condition depends solely on where the lesion occurs on the spinal column.

Apparently my impairment is somewhat rare. Most people with my level of Spina Bifida are completely paralyzed in both legs. I, however, am only paralyzed in my right leg. I can't feel it, move it, or do anything with it. But, I have complete function in my left leg.

Having the ability to use my left leg has opened up so many things to me. I don't have to use hand controls in my car. I drive with my left leg.My car has two gas pedals. I use an aftermarket one that is located on the left side of the brake. When I push down on that one, a bar that is connected to it pushes down on the factory gas pedal for me. That keeps me from having to use my left leg on the regular pedal. It wouldn't be safe or comfortable.

I'm also thankful for being able to use my left leg, because I do have the ability to use crutches. I don't use them as often as I would like, but that is one of my goals. Also, being able to bear weight on my left leg makes it so easy to transfer in and out of my chair. I actually feel quite blessed that I do have those abilities.

But my right leg is basically dead to me. So, I do have to be very careful. In fact, I broke my femur when I was in college. I knew that I had done something very bad to my leg, because I heard a loud pop while I was stretching it. It also went into a position that a leg shouldn't go into.

I went to the health center on campus, and the doctor did not even x-ray it. He told me that I just tore some ligaments in my knee, and everything would heal in time--especially since I didn't walk on it.

That night my leg made a "clicking" sound everytime I rolled over in bed. When I woke up that morning, I had a huge bruise up and down my right leg--from the internal bleeding.

I went to see a "real" doctor, and he took an x-ray of it. He told me that I had snapped my femur in a pretty severe break, and that I needed surgery that day. My mom didn't want me to have surgery 3 1/2 hours away from the family, so my dad drove down to Springfield, MO to get me. Later on that evening, I had surgery on my leg.

I DID NOT FEEL ANY PAIN THROUGHOUT THE WHOLE EXPERIENCE.

A lot of people have the perception that people with disabilities are sickly. I have had many operations, but I feel that I am quite healthy. Fortunately there has never been a time where my parents thought that they would lose me and that I would die.

I had my first two operations the day that I was a born. The doctors had to close up my back, and then they put a shunt into my head to drain off excess cerebrospinal fluid.

Since that time I have had issues with my kidneys, which is quite common. So I have had many urological surgeries. Fortunately, my kidneys are actually much better than they were in the past. At one time, I was on a pathway to needing an eventual kidney transplant.

I have also had many issues with wounds that do not heal. This has to do with poor bloodflow to my legs. Some of the most emotionally trying times in my life have dealt with this aspect of my condition. In the late 80's, I had about 6 operations on my left foot. There was even a time where I thought I might lose my foot---and most of my left leg. And this is my GOOD leg!

I have a lot more that I can mention, but I have to mention the best comment that I have EVER received from a student. This came from an 8th grader who was TROUBLE with a capital T. But, she and I had a wonderful rapport, and I didn't have any problems with her. She said, "You know Mr. K, whenever I saw you last year, when I was a 7th grader, I would feel sorry for you. Now that I have had you as a teacher, I don't feel sorry for you anymore."

I got that comment about ten years ago, and it still makes me smile. THAT IS EXACTLY WHAT I AM GOING FOR. :)