When I was a little girl, I had everything in life. A mom, a dad, a home, and happiness. I had a bond with them, one I never thought would be taken from me. But when I was six years old, and I found out my mom was pregnant, I never could have guessed how much this would change our lives. My mom was pregnant for roughly seven months
before she went into labor. It was awfully early to have a baby, so she was rushed to the hospital to make sure everything would be okay. I don’t remember much, other than being taken to my grandparents, where I could tell something was wrong from the looks of confusion and concern in their faces, but no one would tell me what. When I finally got to visit my baby brother, it was not what I was expecting. He was encased in a big clear tube with more tubes coming out of his body, it broke my heart. I could barely see his skin, but from what I saw, it was yellow, I asked what was wrong and my mom told me he would be okay, but he had a disease called ‘Cystic Fibrosis’. Cystic fibrosis is a disease that effect’s your lungs and digestive system, and without proper treatment, life expectancy isn’t even a year, and I was told his skin turned yellow
because his liver had failed. He went through multiple procedures in the first six months of his life to remove body parts that weren’t functioning correctly, such as his intestines, parts of his liver,
and his gallbladder. For months I didn’t understand
why I couldn’t bring my brother home. I felt completely left in the dark, and I would always wonder why I couldn’t do anything to help. I remember one day hearing my mom ask my dad if they should stop buying baby products, that’s when I realized, they thought he wasn’t going to make it. I went from a happy child with happy parents, to a lonely routine of hospital trips, tears, and being pushed in a big hole of empty unknowing feelings. After 11 months, he finally got to come home. His skin was still yellow, and things weren’t the same as I was used to, but we adjusted. We began our journey of childhood together. Playing with toys and imaginary games,
fights and snuggles. Our family had finally found a new normal, and I was okay with that because he was okay. But then… six years later… my mom got pregnant again. For months I prayed that the baby would be healthy. I didn’t care what gender, just to be like me. Then, my mom got tested,
and the baby had Cystic Fibrosis. Maggie was born but since the doctors knew what to expect this time, she had a better journey than Jack. Jack had roughly 8 procedures, where Maggie only had 2. She was in the hospital for four months before she finally got to come home. And then, once again, we began our journey
to find our new normal. Some years went by and I became depressed, I was in late middle school, and I felt worthless. I lost all attention from my parents, and became totally overwhelmed with everything going on. My brother and sister had to undergo vest therapy to help their lungs and take countless medicines. For a long time, it put a lot of stress on our overall relationship as a family. Things had just started to turn a corner and become okay again, but then… my mom began to feel sick, she had numbness in her legs,
dizziness, loss of vision, and forgetfulness. She always pushed it away. Doctors told her she was just tired and overworked, family members told her it was impossible to be sick because Jack and Maggie were already sick. My Dad already had Diabetes which six months later peaked to its worst, then to top everything off my Mom was diagnosed with ‘Multiple Sclerosis’. A disease that causes your body to attack your nervous system and immune system. She became very ill. But after many visits to doctors and hospitals,
she found ways to deal with it. Everyone was sick. Everyone had medication and needles and stress. And I? I just felt alone. In my early years of high school
I became very depressed. Distanced myself from my family, skipped school and even became one of the “bad kids”. I felt worthless and useless, I got to sit alone, healthy, while everyone else was sick. And I could do… nothing. For years and years growing up, all I wanted to do was help. Make things better. But things just got worse.
I thought my family was cursed. I considered hurting myself to put an end to it all. I felt like my healthy body was a burden and I was rubbing my families face into what they couldn’t have. I vowed to never have kids through the fear my family could be anything like this. I wished everyday, that I could take all of their illnesses and make them all healthy. My senior year of high school, I began to think about college, I had found a man who stuck by my side since my freshman year. He understood my family and found ways to create bonds with each member individually. He helped with medications, asked questions to educate himself, and always was a string to hold up my kite. But then… in the middle of my senior year…
my brother became very sick. He was sicker than normal. Thirsty all the time, using that bathroom every three minutes, and very weak. My mom suspected it was CFRD.
Cystic Fibrosis Related Diabetes. So she called the clinic, informing them of her concern. Then, before I knew it Jack was rushed to the hospital. His glucose levels spiking to roughly 800 when your normal levels should be in the 120’s-150’s. He came home the next day, with more needles to inject, more bills to pay, and more stress. My brother, now in his preteen years,
began to feel hopeless. Picked on at school, always needing medication to survive, getting injections 15 times a day. People with regular Type One diabetes, have to handle strict diets, frequent glucose level and ketone checks, insulin pens, and more. But for my brother? His Cystic Fibrosis made it worse. You see, Jacks Cystic Fibrosis effects him everywhere, one of the many effects, he can never gain weight. A CF patients BMI should always be in the 50th percentile, but jack had never peaked over 20. He was in the hospital for far to long, causing his basic motor functions to be delayed, such as speaking, eating and walking. He didn’t learn to properly eat solid foods until he was around 8 years old and now, with the Diabetes as well, his diet is now stricter than we ever thought possible and his problem gaining weight just gets worse. Everyone in the house was trying to stay healthy, but problems kept hitting us one after another. I felt at my all time low, like I was being sucked into a black hole and would never be able to get free. I felt alone and cold, with my two siblings life expectancy currently being 36, my moms declining health, and my dads diabetes catching up with his weak body… I was convinced that I was going to outlive my whole family. And I hated myself. I avoided growing close to them, I avoided letting my emotions show, I hated everyone! I hated the people who cried for me, who gave me dirty looks when they saw my home life, who bullied my brother and told him he was better off not being here, the people who told me
how strong I was to live like this. Because really…. I was so weak. The only thing I wanted to do… was physically and emotionally impossible. I knew that. But I still wished everyday that I could take it all from them, and let them live. I would rather have all their illnesses and pass away, than watch them fall weaker, and not be able to do anything about it. All I could do, was watch. I began to contemplate ending things again, maybe start drinking or even do worse to numb my feelings. I even thought about running away from my family. When I tried to share my feelings, I was shut down and told I was ungrateful for being sad since I was the only healthy one. I cried myself to sleep, hearing my brother cry and shout that he wished CF, CFRD and Liver disease didn’t exist and that he wished he could just go to sleep and not wake up. My mom, put on a brave face and cared for her sick children and never allowing herself to take care of the most important person… herself. My dad, rejected treatment for himself so that he could afford treatment for his kids. It was heartbreaking. And I could do nothing. But then… one day, a family friend reached out to me, and asked if I wanted to join in the MS walk, which is the disease my mother has. I decided that maybe I should try it, and it was the best decision I ever made. I began going to CF walks and Diabetes walks, I held fundraisers for each illness and participated in groups online. I began to find myself,
find the reason why I’m in this family. I began to share my voice,
share not my story, but my family’s. While I witnessed the tragic events, I never did anything. I just cried, tried to help feed them or give medications or educationally include myself. But I never realized how much I could do. I began raising a bunch of money, meeting other children who have illnesses. And I began letting my family in. Today, I’ve raised over $200,000 for each illnesses charity and I will continue to, for terminal illnesses, ALS, Down Syndrome, Autism, and many more illnesses that so many of us are suffering from. And even though every illness in my family has no cure, and that my brother and sister will need liver and lung transplants, and their life expectancy’s are far too short, I am determined everyday to help find a cure, enjoy my time with my family, and do good things. Because your loved ones won’t be around forever and even though they aren’t perfect, they’re stronger than I am, they know how to fight, and it’s a battle we won’t lose if we fight it with love.