Warrior Stories
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Jessica Jordan Mullen’s Warrior Story
The first real Spina Bifida problem I had was when I was 17. One day, I suddenly felt miserable; I was throwing up and had an awful headache. I was at one hospital and they decided to take my shunt out. They put me in the ICU. When I went home, I felt a little better. A few days later, I went back to the same hospital with the same issues. The hospital didn’t know what was going on with me. With stitches still in my head, my mom took me to Children’s Healthcare of Atlanta. They took my stitches out and said I needed my shunt put back but they were going to put a new high tech shunt in instead. The doctors at CHOA determined that I didn’t need it but chose not to take it out. During this time, I stayed in the hospital. A few days into my stay, the doctor wanted to measure the pressure in my head versus the shunt. Then determined I didn’t need it. I missed half of my junior year of high school. I wish I was more aware of what my body was telling me and because I was so young I didn’t have to worry so much about how I was going to affect people taking me to the doctors and other places to keep my health up. During all of this, I realized I need to pay attention to my body and make sure I'm not having any problems. If I didn’t have SEVERE headaches (worse than normal), I would have thought i was just an average kind of sick. I still have headaches but I can tell they aren’t as bad as when I was in the hospital. Even though I can't work in a "traditional" work place I try my best to be a supportive wife by being a housewife and participate in Spina Bifida activities when I can. Now, at age 28, I am happily married (2 years in April) and we have two furry babies (a Corgi and a Chihuahua). I am blessed with how my life has been and where it is headed. Nothing can hold me back, not even Spina Bifida and that makes me a Warrior For H.O.P.E.! |
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Michael McGehee Warrior Story |
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A Mom's Warrior Story
I was so confused and had many questions. I had heard of spina bifida but didn't know anything about the birth defect. The brain abnormality they described really scared me. My husband and I had tried for over 2 years to have a child, and now I didn't understand what the doctors were saying. My main concern was,would we still have a baby? The prenatal specialists were able to clear things up a lot better.The spina bifida was low and that is good. The brain abnormality turned out to be fluid, in her brain, higher than the average amount, but remained within normal limits. The specialists were also able to tell us she had bilateral clubbed feet, but that was something that doctors can fix. They did warn us of other possible birth defects, but after an amnio, they were able to rule out scarier possibilities. Our baby would be fine and we would keep a close watch on her progress through pregnancy. With some research and good doctors, my husband and I learned a lot and began to prepare for our miracle baby. Looking back now, I realized not one of the many doctors suggested terminating the pregnancy. I wouldn't have done it anyway. The doctors knew how people born with spina bifida can lead perfectly normal lives. Today, Rheagan is a happy 2 year old! She is like any other child, but we have a different normal than other people. Her initial surgery to close her back went well, and her clubbed feet have been repaired.We go to the doctors and have physical therapy regularly.She is building her leg strength, but not walking, yet. She enjoys playing, loves the outdoors, and dances all the time. She is our little angel, and I thank God every day for the joy he has delivered. |
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Renee Wood's Warrior Story
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Virgil Seay's Warrior Story |
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Debbi and Kasey Thompson's Warrior Story
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Kathy Lawton's Warrior Story
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Ramu Kaladi's Warrior Story
My name is Ramu Kaladi, 26yrs old, born with Spina Bifida (Myelomeningocele) and as you may have guessed I am that person. Don't get me wrong, I am flattered when people think I am an inspiration, but I am just living my life...that alone is not extraordinary. I am honored when parents of young children born with Spina Bifida find inspiration and it is a great responsibility to live up to that inspiration. I want their child to feel as empowered as I do to accomplish great things in life DESPITE Spina Bifida. I have never felt limited because of my disability; the way society is structured has put barriers to the success and independent living of those with developmental disabilities like me. But, those barriers can be removed through dialogue and understanding. I am not content with living my life idly without leaving a positive legacy in this world thus, my reason for choosing a career of public policy. I want to be able to look back at my career and life and say that I made some positive change in the world. I owe this positive outlook on life to my family and friends and particularly, of course my parents. My father is my rock and my mother is my teddy bear, comforting me when times get tough and reminding me that although I can do anything I set my mind to, I still have limitations that I should mindful of. If, as an infant, I had never ceased to inspire my father with my cheerfulness and determination despite the seemingly insurmountable odds; through adulthood he has never ceased to support and inspire me to give %110 to everything I do and sustain my determination for the rest of my life...even when I was not very appreciative. Yes, I have had 10 major surgeries in life which lead me to think, the last surgery I've had, my wisdom teeth being taken out, was a piece of cake :) ...and yes, I have spent many summers of my adolescence in the hospital recovering from surgery and yes, many people see those experiences as me overcoming great adversity. But the truth is, I know people who have dealt with more surgeries and more issues with their life and they certainly do not let that get them down. So, what do I have to complain about? I am lucky to have functioning arms and most importantly, a fully functional brain. Furthermore, those surgeries have helped me become the healthy and thriving adult I am today! Thus, I owe it to the world and the spina bifida community to be a voice for them hence, my reason for serving the Spina Bifida Association of Georgia; currently in the capacity of a member of the board of directors. But my service to the community will never end, even when I step down from board membership; it is a life-long commitment. I want to show the world that I am not a dependent of society because I have spina bifida; I am and will continue to be a productive, contributing member of society. I am a normal guy who strives to do extraordinary things in this short journey we call life. I am a Warrior for Hope for all people affected by and living with spina bifida! |
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Brian Leonard's Warrior Story
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Evan Huddon's Warrior Story
February 2001 he became very sick with what is called RSV, a virus very common in premature babies. He was admitted to the hospital, and then ended up needing to be transferred to the ICU and placed on a ventilator. He wasn't sedated while he was vented, he never fought the tube. I remember one of the residents coming in saying something to Evan and Evan looked at him, did a half smile and waved to the doctor. This resident was so touched by this; he asked me if he could tell his wife about this amazing patient he takes care of. He told me that Evan was brightness in some of his darkest days. (It was a very hard month in the PICU that year; they lost a lot of children). While Evan was in the PICU one of the Head doctors noticed that Evan wasn't moving his arms the way a 14 month old should, he went for an MRI and they said he had a syrinx (spinal fluid stuck in his spinal cord), and the probable cause was his Arnold Chiari II malformation (the reason why those 1st technicians had trouble finding his cerebellum on the ultrasound). While already admitted to the hospital, they scheduled him for the decompression surgery, another 8 hour wait in the waiting room, but again, Evan did wonderful!
From the years 2005-2012 Evan had eleven more surgeries. Some were as simple as having his tonsils out, to major surgeries like have a detehering of his spinal cord to prepare him for a spinal fusion for his worsening scoliosis. I feel by writing his history, I may scare some of the readers. But you have to understand, Evan is a true gift from God. My mother in law tells everyone, that Evan has changed us all for the better and she is so right! He has such a positive attitude and he NEVER complains about anything! Well almost nothing. His only wish was that he would grow to be 6 feet tall. After I stopped laughing, I said "sorry honey, you got my genes, I wish I were 5 feet tall!" Evan's positive attitude is so great that two of his doctors nominated him to represent our Children's Hospital as a Children's Miracle Network Champion. He went on an amazing trip, meeting celebrities, and other Champions from around the country and Canada, and continues to be a spokesperson for the great work that they do at our Hospital, as well as attending many functions to help raise money. Evan loves to tell jokes; his doctors say he is the only patient they can think of that tells a joke when waking up from surgery. Or he will wear funny shirts like, "My neurosurgeon gave me this haircut, what's your excuse?" Evan knows when someone is down and will offer a hug, a kind word or a prayer to whoever needs it. There have been bumps in the road, but bumps we needed to learn from, to grow. He is starting to learn to be an advocate in his own health care by asking appropriate questions and stating his concerns. I love watching him grow, and I can't wait to see what an amazing man he will become. I am truly blessed to have such a gift from God. Everything that Evan goes through and endures with his SB, plus his outlook and ability to positively affect others is what makes him a Warrior For H.O.P.E.! If you are expecting a child with Spina Bifida, then let me say congratulations. You have been chosen to take care of one of God's Warrior's For HOPE. Hold on to that and be proud! If you have Spina Bifida, never forget how amazing you are!
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Julie Elander's Warrior Story
I was born with lipomyelomeningocele at L5/S1. A couple of very good doctors were called in and they closed my small lesion and removed a piece of skin that was hanging by the opening. Unfortunately, I got meningitis and was very sick for a number of weeks, spending about a month in the hospital. At one point, when they weren't sure whether I would make it, one doctor at the hospital told my mother would be just as well if I died because with the SB and the spinal meningitis, my brain would not function properly--and I'd basically be a vegetable. Yes, those were the words they used back in those days, and I cannot imagine a mother hearing that about her firstborn child—or any child! Needless to say, SB kids are fighters, and I survived. As an infant I wore shoes with a bar to turn my feet straight, but I eventually started crawling and pulling myself up and walking (without the bar, of course) at about 13 months. My own daughter, who does not have SB and is also a firstborn, started walking about this same age. I had a bladder/ileal colon surgery when I was barely age 5. I won't go into all the details, but I remember being VERY happy about it, running around and telling all the neighbors about it when I got home from the hospital, lol! This type of surgery has been improved upon over the years, but it worked for me, and has served me well for 46 years. So take heart about that, moms of SB kids! I had an unusual gait, of course, and over the years I had numerous surgeries, a metal leg brace, and even a cast at age five to try to turn my foot straight (no surgery—just a cast!). I wore the leg brace from 6th to 9th grade. I attended two public grade schools and both times my mother marched me to the principal's office before school started to show the principal I was just fine on my own. In those days, disabled kids weren't really attending public school, so I know my mom had to try to convince the school I would do fine. I was indeed the only "handicapped" kid at both of my schools, so I got a lot of comments and, sometimes, rude or teasing remarks about the way I walked or about my brace. However, I also had a lot of nice friends at school, so that called less attention to my being "different." A lot of people asked if I'd had polio, even though polio had basically been eradicated in the U.S. by the time I was born. But people knew about polio; most had not heard of Spina Bifida or knew almost nothing about it when I explained what I had.
My teen and adult life has been pretty normal: I went to public high school, got a part-time job at age 15, drove at 16, won awards for art and writing, graduated 5th out of 287 in my class (Take that, Spina Bifida!), went to college out of state for my BS in Graphic Design, did internships in various states, backpacked Europe (alone) for three months, moved far from home for my first job after graduation (IBM), got married, had three kids (very easy to deliver babies when you have SB, btw--#3 was accidentally born at home!!), worked for various companies at each of the five places we've moved to, taught adjunct at a college, and started my own freelance editing business. The only really major SB event in this time was at age 40, when I realized my walking was getting worse (well, it actually started when I realized I was having trouble getting up from a squat). I had an MRI and learned I had a tethered spinal cord. Like a rubber band, it had been stretched for all these years and was finally giving out. They didn't usually check for TC back in the day, so I had never known! I had TC surgery in Chicago at age 41 (after much doctor hunting). My balance was pretty bad by this time, and I was starting to use a cane (which I still do). The surgery had some complications that required a revision and then four months lying flat in bed trying to get a pinhole leak to heal (it was leaking spinal fluid). It healed, I went back to work, caught West Nile Virus—a spinal fluid condition of all things!—and the pinhole reopened. Three more months in bed and then just about the time they were going to put me in the hospital to try drain my spinal fluid away from the pinhole for awhile, it healed! Woohoo!!!
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Trevor Hawkin's Warrior Story
My First Surgery My first surgery I had when I was seven years old. This was an artificial sphincter implant for urinary incontinence. We were living in the little town of Douglas Wyoming at the time. My parents had done extensive research and finally found a doctor by the name of Dr. Barret. He was doing groundbreaking work in the field of urinary incontinence with Artificial Sphincter implants. So my parents and I went to Rochester Mn to the Mayo clinic for what would be the first of many surgeries for me. I was scared to death. Now I don't remember the plane ride to Minnesota because after all I was seven. However I do remember walking up to the front doors of the hospital. They were huge. I felt like I was walking into a building as big as the Sears Tower. Sitting in the front lobby of the Mayo hospital I remember how nervous I was sitting there waiting for my name to be called as I was sitting between my parents. Trevor Hawkins, they finally called. As were sitting at the front desk the admissions woman is asking my parents about insurance cards, and if I'm taking any medications. Mostly I was just ignoring my parents and the admitting rep checking me in thinking and hoping that there would be some insurance screw up so I wouldn't have to go through with the surgery. My daydream was abruptly interrupted when the admitting rep reached for my right arm and snapped an id bracelet on my wrist. Only then at that exact moment did the realization set in that this was going to happen weather I wanted it to or not. After check-in the next step was to wait for the patient transporter to come and get me to take me to my room. So this patient transporter finally shows up with a wheelchair. What the heck? I wasn't sick. I could walk. It did not matter. I had to ride in the chair. The wheelchair ride to my room was just the beginning. As I was being pushed down the hallway to my room the off white walls of the hospital made me feel like I was in some mental institution I had seen on tv. Now the nurses and nursing assistants were not much better. They were all dressed in the same white scrubs. So about this time I am totally freaked out of my mind, we had reached what would be my room for the next few days. The dehumanization of me was about to begin. As I am rolled into the room the nurse introduced herself. Then she told me I had to get totally undressed. I did not like that one bit. But that humiliating little bit was followed by, then will get your iv started. So now I am totally naked and now having to be worried about being naked and poked. Great. While the nurse is scoping out my arm for a good vein all I can think of is how big the needle is, and at that time in the dark ages, all the needles were metal. Now for some reason the nurse could not find a good vein. One stick, two stick, three stick, four stick, and only after the fifth needle stick did the nurse finally go and get a doctor who was able to put the IV in on the first try. At this point I am naked with the exception of the ridiculous hospital gown I had on. In addition to that my hand with the iv was taped to a board so I could not move my wrist at all. The nurse finally left and it was just me and my parents. I felt very alone, and violated. Now all I could do was lay there in bed with nothing to do but think about this surgery which was just two days away. The day of the surgery they kept pushing back the time and it got to be later and later. Finally, the transporter came to get me. We wound our way down what seemed like endless hallways, all white of course. Finally we came to some doors with two small windows where I could see masked and gloved people standing behind it. As soon as I hit that room a cold rush of air came over me. So this room that had all this really weird equipment was where they were going to remove my brain. I had to scoot myself over to this really narrow cold metal table. Then the nurse told me to lie down. Then the doctor putting me to sleep told me he was going to give me a drug and to start counting back from 100. I don't remember how far I got. Waking up. I would hear noises occasionally, and there was this annoying rush of air going up my nose that burned like heck. The funny thing was I remember batting it away with my hand and somehow a third hand which was not mine kept putting it back. I just remember this really pissed me off. Finally my eyes started to open. I could only see a blur at first. There was always this really calm voice which was very caring and sweet talking to me telling me where I was and that I was going to be fine. After what seemed an eternity I could see good enough to look at the voice that had been talking to me for who knows how long. I was just getting adjusted to my new surroundings when I got hit by the two worst feelings I had ever felt. Nausea, and the worst pain in my gut that has actually never been equaled. The bad part was I had this dry heaving thing going on and I would not figure out until later that I was having a reaction to the anesthesia. Well that's all fine and dandy I mean I don't mind a good barfing now and then, but what body part hurts after you have been throwing up? Yep, your gut. Little did I know I had a nice big smiley face incision just above my pubic area which was about nine inches in length. Yeah, I know, there in lies the problem. Well finally after what seemed like several hours of throwing up and and trying to hold my gut from spilling all over the place, the nurse said we are going to take you back to your room, I've never been so happy. Well after a few hours in the bed and a drug that helped me stop throwing up, Zofran, I love that drug, some medical moron came up with the idea that I needed to walk and get moving. Again where does the body like to bend, right at the gut which incidentally was where this wonderful incision was. So needless to say the nurses got me up and helped me discover a whole new level in pain that I would not soon forget. So this process went on for about another week after which they said I could go home. But they forgot one minor detail. This Artificial Sphincter they implanted in me has a small bulb which was sitting down in my testicles and at the top of this little bulb was a tiny button which they said was what activated the sphincter. So that meant that I would have to go see another doctor in about a month or two to have it activated. Anyways I had made it. My first surgery was over, and I had lived. School and Growing Up
Becoming An Adult My first job as an adult was with Texaco Starmart. I was at first too young to be a cashier, so they trained me for the Taco Bell first. Then as I turned 19 I was able to sell alcohol and I worked both counters. I did this about four years. I went to a community college for Welding Technology. I had done some welding in high school and really liked it. So I got a Certificate in Welding Technology. After that I tried getting a job in the field, but that proved to be difficult since I had no experience and welding as you can imagine is quite physical. Then in 1999 I was hired by Banner Health as a Patient Transporter. Yeah I know, ironic right? I did this for a couple years, then I transferred to being a Tech Aid for the MRI department. This I enjoyed as I was able to help set up for the exams, monitor the patients etc. In 2004 I went and got my Nursing Assistant Certification and worked in Oncology. I loved this, but again with my disability it just became too physical. Working in the medical field I guess in a lot of ways felt natural because everything I worked with and saw was so familiar to me. So now I was driving and working. I had a few close buddies and we would all go out to drink and have a good time and they would always meet girls, and of course they would drop me off at home alone. Well this of course got to me and I just resigned myself to the fact that I was not meant to be with anyone in this life. One night I decided to go out by myself and at the time I had a little motor scooter, my first taste of two wheeled transportation. Anyways I met my first real girlfriend that night at a country bar. We talked all night and went for breakfast. She took me back to the bar parking lot, I got on my scooter feeling like a million bucks and went home. Her being about ten years older than me did not seem to matter. In fact, it really seemed to help because I had talked to women my own age but I soon discovered I did not identify with them, or they could not deal with someone with a disability. We eventually got engaged and were together for about three years before we broke up. We did not end up together but this helped me realize that a woman could accept me for who I was. Ever since then I had no trouble finding a woman and dating. As I got older it was easier for me to adopt the attitude that if a woman, or just even a friend did not want to be with me, or associate with me I did not have time for a person like that. I remember asking my two best friends at the time if it ever bothered them being seen with me. They both said :"Dude we are around you so much we don't even see your disability anymore". I loved them for telling me that. Now I'm 36, I currently have a roomate, and still live in Arizona. I work for a school district working with kids who have developmental disabilities. I love it. In my free time I go out with my friends, ride my motorcycle which I taught myself to ride, and now work on my Spina Bifida ambitions trying to bring exposure to adults living with SB. My inspirations for life and being as positive as I can be are Nick Vujicic, and Chris Waddell. Both are amazing motivational speakers and have had a real influence on my life and outlook. During my last hospital visit getting my fourth shunt replacement I had a visitor come to my room. She was a nurse who had a son with SB. We talked for over an hour. I was so energized by that I realized doing whatever I can to talk to parents, or children with SB is my responsibility to do. I have done amazingly well with SB, so anything I can do to help others is my goal. And if I run into people who want to tear me down, or stare at me, I just tell them: Keep Staring I Might Do A Trick. |
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Shea Leecock's Warrior Story |
Hi, my name is Jessica! I was born with Spina Bifida in Sanford, Florida. Shortly after I was born, I had surgery to have my spine repaired. At seven days old, I was flown to a hospital in Orlando, Florida to get a shunt put in my head. The doctors told my family I wouldn’t be able to do ANYTHING on my own (walk, feed myself or go to the bathroom). As I grew up, I really didn’t have typical Spina Bifida problems. I’ve always had back pain and have worn an AFO (brace) on my left leg. I’ve worn that brace since I started walking. For the most part, I've felt/ been treated normal my whole life. My diagnosis never holds me back! When I was younger I played the same games and activities as the other kids. I participated in youth group and choir at church. I also participated in the school choir. In these two activities nothing held me back except when my back was hurting, I had to sit during different things. When I was old enough to work I had several jobs ranging from the daycare to the restaurant industry. I loved all my jobs but eventually realized I couldn’t do my jobs correctly. In the daycare jobs I couldn’t keep up with the children or remember certain tasks I was supposed to do during the day. At the restaurant I worked at, I couldn’t stay in one place or stand as long as I was assigned. What I loved about working is that when I was interviewed I let my employer know I was disabled and they treated me like any other employee.
I will never know what it is like to have spina bifida. At 18 weeks of pregnancy, I found out I was going to have a beautiful baby girl. The doctors continued to describe other things they found on the ultrasound. My child would be born with spina bifida and had a brain abnormality.
Hi! My name is Renee Wood and I would like to share my warrior story with you! I was born October 24, 1983 with Spina Bifida Myelomeningocele. When I was born I had to have a surgery to close the opening in my back. After this surgery (at only two days old) I had to also have cast put on my both feet due to Club Feet I was born with and at 6 months old had to have a surgery to straighten my feet out. At 3 days old I had to have a shunt put in to drain the spinal fluid off of my brain and had to have this shunt revised several times. Around the age of five I had to have another surgery for my scoliosis where they placed rods in my back to try to help and straighten my curved spine. I also had to be treated for Pneumonia that I had contracted and was hospitalized for that. Yet, again, I had another surgery for my hips and tendons and have to have a cast from hip down to my feet on both sides of my body. My dad had found me past out one day and I ended up going to the hospital and was diagnosed with Arnold Chairi Malformation (which can be common to have if you have SB). This is when I had another revision to my shunt surgery to address this issue. As I have grown I have had several pressure and wound issues and other issues that can come along with SB. I live my life to the fullest. Yes, I have SB but SB does not have me. I have been through a lot with my SB but I really feel that I have a great life and am so happy and blessed with the life I have. I make the positive choice not to dwell and focus on all that I have gone through and may go through as I get older and that really helps me. Staying positive and having a strong faith has and always will get me through the toughest of times. I would like to encourage everyone who either has SB or has a child with SB to hold onto the HOPE and know that everything will be alright. You can still have a great abundant life with SB and still accomplish your hopes and dreams. Stay Strong, Positive and Have Faith! SB can be a blessing with the right attitude and that is what makes me a Warrior For H.O.P.E.!
So, there is this guy; graduated high school studying in mainstream classes and even taking a few honors and advanced placement courses here and there. Went on to college and graduate on time in four years earning a Bachelor of Science in Public Policy; participating an internship along the way...Landing a job and starting a great career at the CDC shortly after graduation...and then two years later starting a Master of Public Policy and Administration degree program and now almost finishing the program. Sounds like a pretty normal life, right? Then why do people call him inspirational and a brave soul for living his normal everyday life simply because he was born with a "severe" developmental disability? I mean he didn't get on a rocket ship and fly to the moon; he didn't fight in any noble wars for freedom and he's not the president. So why do people put him on a high pedestal of inspirational greatness?
I am 31 yrs. old and was born with SB. I grew up struggling with acceptance of my disability (as I am sure many do). I always worried about being treated differently. And I was very self conscious. However, as I have gotten older, I have come to accept my disability and embrace it. Yes, I may be treated differently, but that is because I AM different...and that is a good thing! I embrace the fact that I am unique. I have learned that being different does not make me any less of a person. It simply means I have learned different lessons in life and I am a stronger, better person for it!
Evan is the youngest in our family. When I was pregnant the doctor at the time convinced me to do the AFP test around 18 weeks. I told him that I didn't want the test done, I didn't have it with my two other children and that if the test results came back positive that I wouldn't do anything about it anyway, so why bother? He explained to me that the baby would need to be born via cesarean section, because it would be safer for the baby. So of course at that point I agreed. The AFP came back positive, but I didn't worry, I knew there were a lot of false positives. He then sent me for an ultrasound. The technicians had trouble locating his cerebellum, she told me not to worry, and it was because she was new. The next step was to go to a genetic counselor. She took our family history and said there is only an 8% chance that the baby would be born with a neural tube defect, but to be sure we were scheduled for a level 2 ultrasound. I told my husband to go to work; that everything was going to be fine...8% that there is anything wrong, chances were in our favor. After the level 2 the doctor sat down with me and explained that my baby was going to be born with something called Spina Bifida. It was a little bit of a shock, and I cried for about 15 minutes. Then I said to myself, God doesn't make mistakes, and if He thinks I can take care of one of his very special children, then I have the confidence that I can too. For the rest of my pregnancy, it was research, doctors, and excitement for the new baby to arrive.
Evan was born in 1999 4 weeks premature, just before Christmas. 38 hours after birth he had his first surgery, it took 8 hours, but he did wonderful. He recovered in the NICU. The nurses were measuring his head every day, because we still didn't know if or when the hydrocephalus would present itself. About a week after the closure of his back, Evan "coded". I was by his side the whole time, left for 5 minutes to use the restroom. When I got back, I looked at my husband and asked why is there an ambu bag on his pram, why is he grey, and why are you crying? He explained that Evan stopped breathing and they needed to bring him back. At that point the neurosurgeon came in and "tapped" his fontanel. He went into surgery the next day for a VP shunt. He stayed only 1 month in the NICU, and I think that maybe he should have stayed a little longer, because he had trouble with learning how to suck, swallow and breathe all at the same time and his oxygen level would drop when he drank his bottle. A week after leaving the NICU, we were admitted to the children's hospital because he turned grey when he was eating. Nothing was figured out, so we went home. A month later, admitted again, but this time they placed an NG tube, at least now he was getting nutrition. March 2000, his shunt failed so we needed to go in for a revision. In May, another revision. The middle of June more shunt problems, but this time, it was infected so the neurosurgeon needed to externalize his shunt for a couple of weeks, and a new shunt was placed at the end of June, he was hospitalized for a month. August some symptoms that showed he was having more problems, so we went in for x-rays, the Radiologist called me to say he found a bladder stone so his urologist needed to take it out, and yes the shunt needed to be revised again. But that is it for his first year. The rest of the year was pretty uneventful. He started learning to play peek-a-boo, and he laughed all the time, he hardly ever cried. What an amazing baby he was!
He didn't have any more surgeries until he was 4 years old. That's not to say we didn't go to the hospital. Because Evan had difficulty eating and not being able to do any weight bearing, Evan's bones were brittle, so he fractured his femur sitting criss-cross apple sauce. I lost count on how many times he has broken his femurs, but if I were to guess it has been about 12 times. After the first two, being in a body cast for 12 weeks, he lost 10% of his body weight and at 4 years old he only weighed 18 pounds, so we scheduled placing a permanent feeding tube. This helped him thrive and start to gain a little bit of weight. 
I was born in Indianapolis in 1960 and of course in those days no one knew ahead of time that their baby had SB until the baby was delivered. I was my parents' first child and there was no history of SB in the family. I have a brother 3 1/2 years younger than me without SB.
Through grade school and high school, I had surgeries every few years: tendon transfers, bone rotations, foot corrections, spending time on crutches, full leg casts, walking casts, and wheelchairs. Since I have little sensation in my legs, the surgeries didn't hurt all that much, and I actually felt in some ways unique (in a good way) with my cast, crutches, or wheelchair. I did have achy legs for a number of years on very rainy or snowy days. At 25, I had my four hammer toe bones fused straight (left foot). Funny story: I fell down the stairs in my lovely wooden hospital shoe and toe pins after the surgery, bending my pins! So, I DO have fused bones, but they are anything but straight, lol!
Having a good sense of humor, and parents who encouraged both independence and trying a variety of things to see what I was good at (and encouraging me to develop those things--like my art and writing) were some things that really helped me get along with all kinds of people despite my SB. That is not to say I never felt (or feel) different, or that people never felt uncomfortable around me (at least subconsciously). It just meant that growing up I was able to laugh (at least later!) at most awkward situations caused by my SB, and that I rarely thought much about my physical limitations, instead focusing on things I enjoyed doing and felt I had a special talent for. Guess I've done OK for a "vegetable." :)
Hi my name is Trevor. I was born in Denver Colorado on January 8, 1976, and I have Spina Bifida. Here is my Warrior Story, hopefully it's not too boring. My lesion is at L3, L4. I have had four vp shunts one at birth, 1991, 2003, 2011, two collagen injections around 1990 which by the way rendered me to a life of catheterizing up until then I could bear down and void normally, wear bilateral leg braces, have had three artificial sphincters, two reconstructive foot surgeries on my right foot, MRSA in my right foot twice, esophageal dilation, a bi-lateral osteotomy 1986, and as I go on I may remember more. 
After we had been in Denver Co for two or three years my parents moved us to Douglas, Wyoming. There I attended Douglas Elementary. Don't worry, I won't go into the detail I did with my first surgery. I just wanted to hopefully convey to people who maybe never had a surgery, especially one at such a young age what it is like to go through an experience like the one I did. Anyways my elementary experience was not a very good one. So having bowel and bladder control issues and trying to go to school just don't really mix. Now when I was born I had hydrocephalus so they put in a vp shunt to drain excess cerebral fluid from around the brain to my abdomen. As far as classes go, I had memory issues, so classes like History, and Science,were very hard for me. Reading Comprehension was a whole other story. I had sidelined classes just to help me read and write to the point where I could pass to the next grade. Even so I still had to repeat first grade again. Going back to the bowel and bladder issues, well I had accidents all the time. I got to be a real expert with hiding the fact the I had wet myself. I used my backpack to hide that, or with bowel, I would have to go to the bathroom and rinse the hell out of my underwear. But unfortunately there were times when I just could not hide it because I was engaged in recess and not near a bathroom, or I was at an assembly. And as all you reading this probably know kids are cruel and unforgiving when it comes to things of this nature. I was teased endlessly. I was pushed, beat up, pushed into brick walls, and ended up in the nurses office I don't know how many times.. On top of all that I have a severe gait in my walk which is very visible so kids and even adults have a real bad tendency to just blatantly stare at me. That is why I love wearing my favorite T-shirt when I go out which says, "Keep Staring I Might Do A Trick". Now my parents really did not help. They scolded me and grounded me because they thought my problems could be solved if I just got on some kind of schedule with the bathroom issues. This was not the answer. If I had a big push of gas, or bowel, well it seemed that it always in turn pushed all my urine out at the same time. Then I took to wearing the equivalent of diapers. Well these stuck out of the back of my jeans so when I would sit down the kids would see them and of course make remarks and carry on in the most cruel way they knew how to. And believe me they were natural experts at doing this. Getting to school on the regular bus had become such a hassle that my parents bought me a 75cc Yamaha Tri-Zinger Three Wheeler. They had to get permission from the school principal and the police chief to do it, but that's how I got to school everyday. Riding my three wheeler got my picture in the local Douglas paper and an article written about my story. As I got older I finally got more in tune with my body and figuring out how to read a situation about when I needed to go to the bathroom and I was able to control things a lot better as I progressed through life. Now I was getting the physical things under control, but as far as emotional and mental, well that was a different story. I was coming into high school and actually had people who liked me and wanted to be my friend, but as they would say hi I would ignore them and keep my head down as I walked down the halls. There were times I did have so much trouble with school and bad grades and not being accepted that I did think about suicide, but I knew I would never do it.
I owe a lot of my sanity and being able just to function on a daily basis in high school to one person. She was a friend who always smiled and told me to smile and stay positive and keep my head up. She was my angel and shining light. Every time I was sitting alone she would come over and sit with me and make me feel like a normal person. The fact that she was beautiful and sitting with me probably helped as well. My senior year was not too bad. I got my drivers license my last few months of school. My parents bought me a little truck, so my last year of school I was actually able to drive myself to school. The best part was that I got to drive myself to my own high school graduation. Do you know how cool I felt. It was an amazing feeling. Class of 1995, Mesa High.Contact us and tell us your Warrior Story!