A Different Point of View.

God does not give burdens to those who cannot bare them. Erin is a middle schooler with more burdens than any teenager should ever have to bare… However many obstacles Erin is presented with, she continues to be brave and stay strong. She does this by looking at life with a different point of view than most.

“I try not to focus on the obstacles in my life, but they are definitely there. My mom tells us we can report our pain and we can express frustration about our obstacles, but we can’t focus on the pain or the obstacles. We have to look right through them and focus on the far side because that’s where we are fighting to be. On the far side of the pain and suffering.” 

As Erin fights for her life, she is simultaneously trying to get through middle school. While all of her other peers do not face the obstacles she faces on a daily basis, Erin stands out in the crowd of middle schoolers. While most of her peers are worried about dating, clothing, or the latest gossip, Erin has different things on her mind…

“Most people in middle school are worrying about wearing the right clothes or “dating” the right person or being in the right group or having the latest gadget… I worry about these things also, but my list also includes medications, doctors appointments, surgeries, diagnoses, diets… and whether or not I will wake up in the morning. Most kids I go to school with plan their lives around sports or school dances… I plan mine around clinic hours and medication schedules. Most people my age can go to a friend’s house with a toothbrush, pair of pajamas and a pillow. I have to take several outfits, a hospital chuck, depends all of my medication and  special food. Most of my friends parents can just drop them off at the door. My parents have to speak to the parents and make sure they understand everything gone on with me and know what to do in an emergency. The scariest part, which my mom didn’t want me to hear is that when my parents explain to other parents that this is a life threatening illness so they may find me non-responsive (adult come word for dead or dying). Some parents aren’t ready for that responsibility.”

Erin has multiple invisible illnesses, meaning that they cannot be seen. Erin describes suffering from an invisible illness at such a young age…

“All of my illnesses are invisible illnesses except my vitiligo (loss of pigmentation). Invisible illness means that others can’t see that I’m sick. I am really very sick. My illness will kill me. My illness might kill me when I’m young or when I’m old. It’s really scary! What is even scarier than the illness that have a name are the illnesses that are still unnamed. The symptoms that can’t be explained. These are the monsters. These are the creatures that hang out in the dark rattling and banging, stomping and growling… You can’t see them, but you know they’re there and there is no way to fight them. No one knows what they are. They are just monsters and you have to hope that when they reach for you, you are strong enough to fight back. They never warn you when they are going to attack. For me, they always seem to attack at night. I can go to bed feeling pretty good and then wake up fighting for my life. I know the monsters have attacked again, but I was strong enough to fight them off.” 

It is hard for Erin to keep her monsters off of her mind sometimes…

“What worries me are the days when I am not strong enough. What will happen   when the monsters win? Is that when I’ll die?” 

Although Erin has many struggles in her life, she also has had many positive encounters throughout her journey. Erin has been involved with Team IMPACT and overall the experience has been pretty awesome…

“Team IMPACT is a non-profit organization that pairs children with life threatening illnesses with a college athletic team. This kid gets to be an “official” member of the team and have a draft day where they are introduced just like kids do at high schools during the spring. It is really cool! They even had cameras and reporters at my draft day! The coaches don’t do a lot with Team IMPACT, I guess. That surprised me when my Mom told me. The first coach I had with OSU I talked to all the time. He even took me to lunch when I was in the hospital. The players on the team decide they want to have a kid like me and then they work with the coaches to apply Team IMPACT for a child. Team IMPACT looks at the kids and the teams and does the best they can to match them up according to personality, distance, time to commit, age etc. After this you get to meet your team through email and videos. At first you only meet the players who are assigned as your teammates, then you meet the entire team! It can be a bit crazy learning everyones names and numbers. They look a lot different on ice than they do in street clothes! They look really big and tall on the ice because of all the pads and the skates, but when you see them in person you realize they are short and a lot smaller. My second year was a lot different because there were a lot of changes. At first, I was pretty upset, but then I realized I had to be strong for my teammates because the changes were a lot harder on them.” 

While Team IMPACT has allowed Erin to be a player on a sports team, Make A Wish is taking her to Africa. Erin is so excited for her Make A Wish trip and wants everyone to know…

“I wish everyone could go with me to South Africa. I wish I could take enough clothes and shoes and books and games and school supplies for all the kids in Africa so that no child in Africa would have a need for anything ever again… I also wish I could do this in the United States… I want people to know how thankful I am for a break from my reality. I want them to know that this trip will be the first time my Mom, Dad, Theresa, Drew, Katy and I have been together in the same place at the same time for more than a few hours – without being poked or prodded or studied by the doctors – in more than six years! I can’t wait to experience the people, the land, the animals – ALL of Africa! Africa is  the cradle of Humankind and the last place you can see God’s largest animals living the way they should be – wild and free!” 

Despite all the positive experiences Erin has had, many of her classmates are still unable to understand what she is going through…

“I have problems with incontinence so I still wear pull-ups and sometimes I need them in the day and night. The doctor think it might be my spinal cord, but it is embarrassing. My friends always want me to go over for sleepovers and this is hard for me. I worry that my pull-up will leak. My illnesses make me worry too much. I worry about everything and it scares me. I have a really high anxiety level. My illnesses, especially the bathroom issues, is what led to me being bullied. I was bullied from kindergarten through second grade. The bullying caused more anxiety and I even used to hurt myself sometimes. My medical issues are getting worse and the ones that started the bullying are still there. This makes me afraid to trust people. Because of the bullying it takes me a long time to trust someone and if they give me a reason to stop trusting them it will permanent. I am working on this, but for now I am keeping my circle really small.”

Erin’s illnesses affect her life daily and there is no escaping them. There is no cure. There is no magical fix. Throughout it all, she shines brighter than the stars in the sky…

“I require a lot of pain medication and a special diet. I live with a constant pain level that I describe as a 2-3, but my friends would describe as a 7-8 or higher. I do not know what a day without pain feels like. My Mito tries to suck all the energy out of my body and all I can do is sleep. I have to fight really hard to stay active and moving when my Mito is attacking me. It’s like playing tug of war. One of us is going to fall into the mud. I don’t want it to be me. I don’t want to fall asleep and sleep my days away.” 

Erin is a rockstar. More than Stephen Tyler or Ed Sheeran. Despite her multiple debilitating illnesses, which accompany many other obstacles she must duel with, Erin is still a kid and chooses to live her life to the fullest. Erin’s favorite subject in school is reading and social studies. Erin loves to learn about people through books or stories. Erin has many different hobbies as she loves practically everything; she loves to play soccer, and street hockey, while she loves to watch ice hockey. A master of more than just sport, Erin enjoys photography, music and films. Although she is not a big fan of reading at the moment, she is trying to improve her reading skills. Erin is not her disease and she will never let her disease win. Erin lives her life that God gave her to maximum capacity. Erin truly lives.

“I want people to know that I don’t sit around and feel sorry for myself. I don’t use my illness as an excuse. I don’t depend on other people to care for me. I want people to know how strong I am and U want them to know that I have chosen to live despite my illnesses. I won’t give up this fight, but I can’t win it without help. I need people to listen to my Mom, my siblings. I need them to listen and learn not judge. I want people to understand the sacrifices my parents make for us. They go without so we can have the medicine we need, therapies we need, equipment we need, the care that we need… I want people to understand that there are more than just emotional struggles, there are also huge financial ones. You can go into any community throughout the United States and hear a story about some teenager who was in a car accident or was suddenly diagnosed cancer… The whole community is raising funds for them. What you do not see… What you will not see… Are the families like mine. There is no support for chronic illness and because of that my family and many other families are left struggling. People get tired about hearing about them. They think that there is some magical cure, or life changing treatment. There aren’t… It does not work that way. People need to understand that chronic illness is a real issue and families like mine struggle to keep a roof over our heads and life saving medications in our bodies. We are like the elderly – struggling, forgotten, sick alone, but still fighting to live another day.” 

Erin wants other kids with chronic illness to hear…

“Chronic illness stinks. I know it. If you have it, you know it. You should be allowed to say that this isn’t fair! It’s awful! I hate it! I want it to go away! I want kids with chronic illness to know it is okay to cry. It is okay to feel sad, hurt, angry… I want other kids to know that it is okay to have a pity party. I also want them to know that all pity parties end. I want them to keep fighting. I want them to educate others. I want them to stop hiding in the shadows pretending to be “normal” when they are fighting for everything that is special about being alive. I want other kids to know that they can reach out to me and share their stories. I want them to know; YOU ARE NOT ALONE!” 

Erin certainly has a unique way of looking at life. When most adults would have given up in her situation, she stays strong. She is a conqueror a fighter and an angel sent by God to teach us the importance of being brave.

“I think everyone should know that the best thing you can do for yourself, your family, your friends, your neighbors, your community, your country, our world… IS to be kind to yourself and others, help whenever possible, seek experiences rather than seeking things, work hard so you can accomplish more – not have more! We don’t get to take things with us when we die. We only get to take our secrets. We won’t be appreciated for the things we leave behind. We will be remembered and appreciated for shared experiences we have when we were living. I think everyone should know, God loves you and he wants you to share your story, your journey, your life with your brother and sisters here on Earth every chance you get!”

Here are some pictures of Erin…

 

Erin 3

Erin 1

Be the first to comment

Leave a Reply

Skip to toolbar