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Shannon Strader

President and Founder

I believe in the human race….. I believe in love and hope. I also am a strong believer in EVERYTHING HAPPENS FOR A REASON! I believe the world is so ugly sometimes, well most of the time, because people forget everyone is fighting a battle. People begin to feel alone, they are afraid to open up their heart, they are afraid to feel and live, and they are afraid of things they can’t control…

I would have to say I did not really start living a full life until this past semester. I had my third and hopefully final surgery this past July. Before then I never knew what it was like to not be in pain. I never went a day without a stabbing pain in my lower back and abdominal region. I never knew what it was like to eat without feeling nauseated. I never knew what it was like to have a functional body.

Many days that I was wanting to start an organization, I was lying in my bed listening to the sound of my friends or my dorm neighbors laughing, dancing, and having a great time. I, on the other hand, was lying in so much pain; I could never find a position that my body would allow me to feel good for at least a second. I would hold with so much grip on my heating pad just to help my blood flow a little bit, while I was chewing ice to try with all my might not to pass out or throw up.
There were endless nights when I did not think I would make it. I was always wondering when I would die. Some say that might be a little dramatic, but I spent 19 years urinating blood, vomiting from pain, not being able to eat or sleep without hurting. I knew my body could not go on like that. On those nights alone, I always would wonder what the future held with/ without pain or if there was one at all.

Before I begin with talking about the future, I should start from the very beginning of my life. My life started in Illinois, or should I say Our Lives? I was born with my twin sister. We were both healthy twin girls, who were smiling babies as my parents recall. My parents could have not been more blessed considering they were trying to have children for more than 10 years.

shan_youth-1024x534Though, no one saw what was coming next. My twin sister, Lauryn, contracted meningitis at 20 days old, and later was diagnosed with cerebral palsy. She could not talk, walk, or eat. Lauryn was definitely no doubt my soulmate; she is and was my other half. Whenever she had a procedure or spent another day in the hospital, I would always dance for her and in that instance we became like are natural selves again, smiling babies, her, my smiley angel. Our relationship was different than most siblings, we never talked, we would just sit, lay, or hold each other and knew everything was going to be alright. My parents would be frustrated, because I would speak for Lauryn all the time, but I would say I am not speaking for her she is talking through me.
Lauryn is the whole reason I never gave up and the entire reason I believe in love! I could just look into her beautiful, blue/green eyes, and see the world and see someone who was going to be with me no matter what, even if God did separate us. I can envision her eyes to this day. I knew her soul and she knew mine. She is my Biggest Fan. Lauryn still has every bit of my heart and always will!

Life was very difficult growing up with a twin who was so, so sick. My earliest childhood memories always involve being in a hospital, holding my crying sister’s hand, or seeing my parents in horror. Though, don’t make me lead you to believe my life wasn’t filled with joy. Lauryn gave something to my family that can never be replaced; she gave us peace! It is indescribable but even in the mist of all the chaos, our family was perfect and soo, soo happy. I forget sometimes how lucky I am to have felt so much love that was so real and so genuine. She died when we were 8 years old. I remember the day and everyone involved remembers the day perfectly as well. The funny part, though, was I was constantly saying, “Why is everyone crying so much? She took a vacation and we are going to see each other again!” I still believe with my entire heart this is true.

Life without Lauryn was an adjustment and still is, but she influences my decisions in life to this day. I turned to the only place I knew like the back of my hand, the hospital after she died. I volunteered and was on the Board of Directors when I started High School. By the time I was a sophomore in high school, I had seen five deaths of children and endless counts of very, very sick children. It was all I knew. Many people do not experience death, and many people do not experience children’s death. But I feel like a children’s hospital has this unspoken language of its own. Any child who is sick or sibling who is with that child a lot, has an entire different outlook on life. The hospital and life outside the hospital are very different places, and I knew inside the hospital was where I belonged.

shan_grad-1024x534I went through high school as a happy student with many different passions in athletics. Since I was three, I had an indescribable passion for dance. Though, I always found myself in the bathroom after basketball games, soccer games, or track meets, throwing up. I was always dehydrated, but I always drank like a race horse. Finally my senior year, my cross country coach came up to me (I can remember his face to this day) and said I see how much pain you are in and I see how much you push through it, but have you gotten it checked out? I did constantly think it wasn’t normal, but for years my doctors (10 doctors) told me I was either fine, had stomach cancer, or just kidney stones. Though, something about his eyes that day, more or less his soul, pushed me a little harder to investigate my health and body more. I came home from practice and immediately hit the internet tab. That was the beginning of the end for me. My parents were opposed at me for coming up with crazy diagnoses and names of unknown diseases. Who wouldn’t, but I knew in my heart I could not live much longer with the constant pain. I went to a nephalogist in Illinois. He was on his phone the entire time and just said it was all in my head and the pain was due to small kidney stones. I remember being so angry and yelling at him. I remember my parents getting mad, because of how rude I was. So the doctor finally gave in and said you know what we can just get you an ultrasound and go from there, happy? Of course I was not, he thought I was crazy and immature. Between this time I had senior prom, which strangely enough was the night I thought I was truly going to die, I went to prom thinking it was just another bad day with pain, but thankfully my friend, Ashley, drove me home and my parents rushed me to the hospital. I made it through that night. Though, going to that ultrasound was truly the end.

shan_surgery-1024x548I met with my doctor to this day for the first time, Dr. Smith( not real name). He was a God-send. He took extra time looking at the radiology pictures and he found something unusual! My renal vein was behind my aorta and instead of in front. It was being compressed by my spinal cord and aorta. Causing internal bleeding, congestion in the kidney area, and lack of blood circulation within my body, I was so grateful to finally know what was wrong. The next battle was figuring how to go on from there. At that point Dr.Smith said go to Mayo Clinic, since I would have been the first person documented with that disease. There I meet my other guardian angel Dr. Alan(not real name), where he performed the first surgery of its kind on me in June 2011. I have never been more afraid and so alone in my life. The surgery took 8 hours and my blood circulation was turned completely off. I woke up after surgery thankfully. Recovery was the most stressful process I have ever been through. I could barely breath, I could not walk, and I could not eat. I felt as if my body was opened up, which it was, all the time. I could never go through this process again, and my fear was I was going to have to this past year.I went off to college right after surgery, I and my parents thinking I had a second chance at life. Though my freshman year was anything but fun, I was in constant pain once again, and while my newly met friends were out having fun I was in bed in pain. I have never been so hopeless. I remember asking God, “What is the point of taking my twin away and then having me live everyday in physical pain? Is this a huge joke for you?” I have never lost so much faith, because being in college was a big slap in the face when it came to feeling “normal.” Finally during break, Dr. Smith said ‘the renal vein was closing off again, and we need to get you into another surgery.” My mind went to thinking I cannot do this again. Id rather be in pain than go through another surgery that is so unpredictable. Luckily, I found out all I had to do was go through a very small procedure with getting a stent. I felt so blessed at that moment.

shan_believe-1024x539Yet, after surgery I was still in pain, Dr.Smith could not explain why and that’s when everything began to fall together. Dr. Smith met with a young girl later that year who was in so much pain all the time and no doctor could explain why.She had the same disease I had. Dr. Smith tried a new approach with using two stents instead of just one; he was right on target, and called me in immediately.

I went through my third surgery this past July, and have never felt better!! I can finally eat all the time! Though, having this new foreign body is a battle of its own. One of my favorite quotes is, “People who live in the past are depressed, people who live in the future are anxious, and people who live in the present are at peace. ” Lao Tzu

The reason why I said everything fell together at that one moment when Smith met with a young girl who had the same disease I had was because I finally knew everything that happened to me in my life was for a reason. Without Lauryn and the hospital, I would have not been so adamant about pushing forward and finding out why I was so sick. I would have not been able to help that young girl feel healthy. Every time I go in for a checkup and see Dr. Smith, I always cry, not because I feel sick, hurt, sad, or discouraged, but because I have never felt in my soul so ALIVE! <3

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