I Believe in Superheroes

I believe in superheroes. My brother wears his superhero cape and mask around the hospital as it shows his strength and his courage as he fights this battle against Mitochondrial Disease. It’s a disease with no treatment, no surgery, no magic pill, and no cure. My brother, Tyler and I both have several rare, incurable diseases and this has brought a bond between us like no other.

I was twelve on April 16^th, 2011 when Tyler had a seizure in my arms. I remember screaming for help, thinking it was my fault, collapsing on the ground crying with my younger brother, not knowing what was happening or if he would survive the night. Tyler turned blue within a matter of minutes and ended up having two seizures that night. Soon later he was diagnosed with Mitochondrial Disease and he is still showing the world what amazing things he can accomplish despite the obstacles that are in his way.

Since then Tyler has cheated death twice more making our total five times. Which is way too high for an eight-year-old boy! I will admit the facts and statistics scare me because I know I will probably loose my best friend but I pray every day a miracle treatment or cure will come. I just hope it comes and saves my superhero before it’s too late.

Over the weekend Tyler and I were talking while I was pushing IV medication through his Arteriovenous fistula and several things he said reminded me of the past. We were just having a normal conversation about something funny and then he said he had something to say. I listened and he broke my heart. I hate it when he says he feels lonely and scared. He told me how thankful he is to have me so he doesn’t feel so lonely because I understand the pain, the tears, the tubes, the wires, and the hurt. I started to cry. It’s not fair that an eight-year-old boy says he wants to rip his tubes out because it hurts too much. Sadly, this is the reality of Mitochondrial Disease.

Through everything that has happened we are both somehow alive today. I think it is because we have each other. Being sick has made us best friends ever since day one. I am proud to be his sister because he has shown me how to live my life a little differently than most do. Before I finished giving him his medicine the last thing he told me was “But life is just life, you know? Whatever happens, happens.” 

Superheroes are supposed to sacrifice things in their life for others and that is exactly what Tyler does. Everyday Tyler could only care about himself and how much pain he is in. Instead, he puts others first including myself. It is just something we have always done since the beginning. Having two sick kids in our family is hard enough on our parents and siblings. They need a break just as much as we do. Even though Tyler is hurting so bad he takes the time to worry about them before he worries about himself. Tyler defines what a true hero is courageous, bold, and a fighter.

Independence

At fifteen years old most normal teenagers take care of themselves,  make meals, go to bed by themselves, shower by themselves, and manage their everyday needs however that isn't the case for me. My disease has taken away my ability to play sports, go to school every day like a "typical" teenager, to drive, to shower alone, to get dressed without help at times, to eat or drink, sometimes I am physically drained to where I can't even give myself my own medication, and to care for my daily needs. Most doctors and people don't realize that chronic illness is more than just being sick and feeling ill. It's the emotional aspect of the disease. How you manage and cope daily. Do you think you could have all of your independence taken away from you at once? How about losing your independence at fifteen and needing your mother to help you shower daily? All of this just ripped away from you at once...sometimes I think I'm handling it pretty well other times not so much. It is really hard I will tell you that. I always feel people forget I am only fifteen years old and trying to manage a "normal" life despite the conditions. You have nights where all you do is sit in your room and cry and cry and cry you don't stop, other times asking God why he chose you and just being angry at everyone because you aren't "normal" in a world that hates those who are different. I start the day the war begins another day where I have that constant reminder I can't do this or that because I am sick. At the moment I am not entirely happy with the situation I'm in. I don't think anyone would be happy if they were me either. However, this battle has only started and we have a long way to go to beat this! Maybe, my disease can stop me from doing all the things I want in my life but it can't stop me from doing the one thing I will always do. I will Never Lose Hope...and that is a guarantee.