When the Brother I Share a Disease With Made Me an Unforgettable Offer
Almost a year ago while on a beach getaway, my family sat in a nice restaurant eating a delicious dinner. Well almost all of us… You see, my brother Tyler and I have a disease that makes our digestive tracts unable to move and digest food properly in our gastrointestinal tracts. Due to the severity of the disease, we’re both fed through a central line in our chest that gets the nutrients straight into the blood and bypasses the digestive tract. Everything the average person eats on a daily basis we can’t have.
Sitting at that dinner table that night was particularly difficult for Tyler. He was only 9 at the time and was starting to realize he’s different than everyone else. Having to watch people do something we can’t do, like eat, feels like torture. Thankfully at home our parents don’t request us to sit at the table with them while they eat. We have an “open door” policy. If you want to sit down with the family you can. If you don’t want to sit down with them for dinner you’re able to do what you need.
This there wasn’t an option. There was no place to escape to that would allow us to get away from the aroma. As I saw Tyler struggling I offered to take him outside to the back patio because I knew it was hard for me to sit in there, much less a little boy to sit and watch everyone eat. We found some nice rocking chairs to sit in and started making silly little jokes — anything to get our mind off things. Soon we paused. Looking out into the ocean, he began to speak and said, “You know what?”
I replied, “What?”
He proceeded to tell me that if I didn’t need to have tubes, if he was the only one that was sick with tubes, he would do it. I don’t like my tubes at all, but I would do it!
I broke down. That little boy didn’t know one reason why I was crying. He thought he’d made me upset, and I just took him into a big embrace. We stayed that way for what seemed like hours. My little man was so selfless, and he always worried about me and how I was feeling when he should be worried about himself. I’m supposed to be the one who worries about him. Mentally, the disease puts a big strain on his little mind, which can’t comprehend all of what’s happened. Yet, Tyler is the one telling everyone else to stay strong.
Tyler and I have always had the closest relationship. I believe we became best friends for that reason. We were close before we were both critically ill, but after, we both became each other’s biggest supporters. I understand many of the emotions he has and help him through them, and there are some procedures helps me through. It’s tough to see the fear and worry in his eyes because I know it all too well. If we lived a typical life I doubt I would have this bond with my brother.
It’s definitely bittersweet. While it sounds so amazing to have a partner to go through all this together, so neither of us has to be alone, I’d never want the situation to be like this. The two of us have had to be strong for each other, and that’s what’s made me remain positive — because I know I have to do it for him.
That moment on the beach that summer night I knew we would be OK. I knew we would make it through the worst. We would survive and live life to the fullest all because we had each other as our source of strength. It was definitely a shock to hear this from my youngest brother, but it just further validated the reason why he is my best friend and my superhero.
A version of this story also appeared on It’s Not as Easy as You Think.
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