The Color Green

            I used to hate the color green. As a child my favorite color was always blue or purple. To be honest, I thought green was an ugly color. However, my mind quickly changed when my brother was diagnosed with Mitochondrial Disease. The color green became a symbol for the fight to find a cure. I soon realized just how important a cure was for my brother. So I chose to set out to find a cure to save my little brother, but little did anyone know I would need that cure for myself as well.

There are some memories that are etched into your brain like an Etch A Sketch. However, unlike an Etch A Sketch you are unable to erase these memories. You can’t just shake the memories out of your brain and hope the page will be cleared away. Sadly, that’s not just how it works. On April 16^th, 2011 my life changed in one short moment and nothing has ever been the same since. This will be a day that is forever etched into my brain as a memory, but it’s certainly not a good one. No matter how hard I try I can’t get that day out of my head. Nothing has ever been the same; that day will always be written down as the worst day of my life.

On that Spring Saturday in April my youngest brother, Tyler had a seizure in my arms. I was only twelve. I remember screaming for help, thinking that this was all my fault, and the worst of it all was seeing my nine year old brother, Brycen see his brother being carried out the door seizing. Brycen had never seen Tyler’s first seizure, so this was all new for him. We didn’t even know if our brother would survive the night. He didn’t handle it well but I couldn’t say I did either. We both collapsed to the floor never letting go of each other. All he did was scream. All I did was cry. We were all alone. We laid there for what seemed like hours. I could hardly console him, much less myself.

Tyler survived the night, but he was unconscious laying in a bed in the Pediatric Intensive Care Unit. His little five-year-old body received a beating. Tyler turned blue within minutes of my parents rushing him out of the house. We didn’t call an ambulance because at the time of his first seizure it took well over an hour for an ambulance to reach our house. Tyler didn’t have that time. He began to turn blue within a matter of minutes after he had left our house. My parents were able to receive help at the fire station but that poor boy continued to seize. He spent over two hours seizing on that night. Tyler spent the next twenty-four hours unconscious, but he pulled through without any lasting effects from the seizure.

A picture of Tyler and I taken on New Years Eve 2010

            The next week Tyler was diagnosed with Mitochondrial Disease. Mitochondrial disease is a degenerative and terminal, genetic disorder. I cried. Our family knew a little boy with Mitochondrial Disease. His name was Zach and although Zach was only three he was so sick. He passed away two months after my brother was diagnosed.

Thereafter my life began to change even more. It happened so fast and I lost all control.  The perfect happy life I once had no longer existed. It was like my life was sucked up into a tornado, spit back out again, and shattered into a million and one pieces. I too became sick. The first time it happened, I had to stop eating all food. Yes, all food! Imagine living a life without Halloween candy, Christmas cookies, Easter eggs, and even your own birthday cake! I received a feeding tube. I got better, I was so thankful. I thought maybe this was it. I knew I could manage this. It was not even close to compare to what my brother goes through everyday. I was okay. I found my new normal, although life was anything but normal.

June 2012

Nine months after I put my life back together it shattered again. The catch was this time it would be so much worse. My feeding tube was no longer working. Everyone told me this would never happen! They never believed I would wind up in the same position as my brother has. I cried and cried. The strain mentally was almost as bad as it was physically. I knew what all this meant. I already knew what I would soon be facing, because I’ve seen my brother face this fight. I think that was the worst part, knowing what was before me. That little fifteen year old me was so scared.

September 2013

Just a few months later Mitochondrial Disease stormed its way into my life, again. However, this time it was pertaining to myself not my brother. It became official. The top pediatric specialist who treats one of my diseases told me I would never get better and even if I did I would still be very sick and rely on tubes to keep me alive. How can doctors tell a person there’s nothing they can do to make things okay again? Like dominos in a domino line my organs have started to fall down and fail one by one. Organs failing right in front of your eyes and there’s nothing you can do about it. No treatment, No radiation, No chance of remission, No surgery, No magic pill, and worst of all No cure.

So here I am two years later still breathing, still living, and still fighting. I’ve rebuilt my life to the best of my abilities. I have chosen to live my life just as any other person would because, just like you I don’t know what tomorrow will bring. Maybe not today, but maybe five years from now what if the doctors were able to find a cure and they would be able to fix me? If they had a cure I would be able to have a whole future ahead of me and that’s a lot to think about.

February 2016

When I set out to find a cure to save my brother I never expected I would have all these opportunities available to help me do so. I’m still out there searching and fighting for a cure. It’s not only about my brother anymore. It’s about the child who is born every fifteen minutes who will develop Mitochondrial Disease by age ten, the child who lost their sister or brother to the disease, the parents who are struggling to find a diagnosis for their child, the mom who is unable to take care of her four children because she is too ill, the teenager who is fighting to make it through high school despite their illness, and anyone who is still pursuing their dreams even though their body is failing them.

The color green isn’t so bad anymore. It is now one of my favorite colors next to blue, of course. Mitochondrial disease has become a blessing and a curse. Without Mitochondrial Disease I would have never had some of these amazing experiences I’ve been gifted with, but I also see it as a curse as I see both mine and my brother’s bodies slowly shutdown on us. My life may not ever have a happy ending but it’s not about the happy ending it’s about the story and if you ask me I think it’s a damn good story.

Feeding Tube Awareness Week 2016

Feeding Tube Awareness Week has always played a large role for me since 2013. Every year since then I have created a video of all of the teenagers who have feeding tubes and this year I was able to collect a large volume of pictures! I am so happy to have created this video for the fourth year in a row. I hope you enjoy it! 

https://www.youtube.com/watch?v=iaBya7UfmSI

Later this week Tyler and I will be featured in the local newspaper. So, I will let y'all know the specific date when that is confirmed. Have a great FTA Week to everyone!

If you have any questions about feeding tubes just ask!

The Dinner Table

I live with multiple chronic illnesses and one of those is called Gastroparesis which translates to 'paralyzed stomach.' Due to this disease I have to avoid all food. I get 100% of my nutrition (TPN) through a central line leading to my heart. There's nothing my body can tolerate through my digestive tract. It's ironic that doctors typically encourage eating healthier and a wider variety but my doctors had to cut everything from me...The question I seem to get all the time is 'How does it feel to sit at the dinner table while everyone else is eating, when you can't eat?'

I swear my answer is almost always the same and I just have it memorized by now! Honestly it does not bother me as much as some think but it is different for every person. My parents have never forced us to sit at the dinner table if we don't want to. Typically for me, I spend that time in my room doing homework or I go into the shower so I can't smell the food that is being cooked downstairs.

Family dinner is not as big of a deal in my house as it is for some. Out of the six of us who live in my house a third of us are unable to eat any sort of meal. My parents have tried to instill the idea that food is not a central role in our life. Yes, food is needed to survive however, when looking at just how much food is portrayed in our daily lives. Billboards, advertisements, Halloween candy, Thanksgiving, peanuts at a baseball game, dinner dates, birthday cake, Easter eggs, Christmas cookies, any sort of party, and even going to the movie theater getting popcorn to enjoy is a trend in our society. Although the world needs food to survive and we obviously can't take that away from those who are lucky enough to be able to eat we also need to realize just how big of an aspect in our lives that food has become.

What if you had to sit in the lunchroom at school and watch everyone eat pizza? The catch is that you can't eat it. You can smell and see the pizza but you are only allow to sit there and watch the others eat. The situation is similar to putting a treat out in front of a dog but not allowing them to eat the treat. There are many situations when I am unable to avoid sitting down at the table while all of the others eat. While being around food doesn't bother me as much as some it is still challenging for me. No matter what the situation is it's difficult to watch everyone do something that you are unable to do. For me that something would be eating food.


Think about that New Year's resolution you created about going on a diet. By now many people have already given up on that resolution they created or if they are still at it they have certainly cheated a few times. When you cheat on a diet the there are no true consequences besides not being able to loose weight as fact. A person on a diet can cheat and go on about their life however people like myself don't have that luxury.

Being unable to eat food is not only about the physical consequences of eating, it is also about the social and emotional aspect that comes along with it. Although I may want the food, I just can't have it. If I choose to "cheat" and eat food there will certainly be consequences and I don't mean sitting in timeout for 15 minutes. The consequences consist of nausea, vomiting, abdominal pain, cramping, and I could go on and on... The only times I cheat and eat food is when food is in front of me as part of a social event. I do have more self control at my age to know that I can't eat the food in front of me because it will make me sick, but I have to admit that I can't always handle that craving of wanting food so bad. I know it will make me sick but I do it anyway. Most of the time I don't allow myself to do that but sometimes I can't wrestle in my mind what's worse: the physical consequences of eating food or the mental consequences of watching the world do something that you would give anything to do. If it's hard enough for me to sit there imagine being several years younger than myself. My brother is only ten years old and has never truly been able to eat food ever. I can only imagine what war goes on in his head. The mental battle between doing what's best for your health and how you feel but also struggling with the mental realities of what is like to live a life without food. 

I am thankful to live in a household that has come to realize that food does not need to be the center aspect of our lives. We know this because we have learned to live without. I know I can come home and have a place where I don't have to worry about food. I understand that we are unable to make the world change just because of how myself and others have to live but I wish people could become more understanding and empathetic  towards those of us who have to live a life without food.