I often joke about having an unlimited number of lives, especially with my mom, who seems to understand the most. While my mom will never truly understand my struggles, at least she’s always been there for me. She’s never left my side, figuratively and literally. Sometimes, I get annoyed by her constant presence, especially when I just want some time to myself, and have fought with her over it. But, I could never say I’ve ever been forgotten or neglected.
Even when my mom can’t be by my side, I’m still never left alone. When I’m sick, my mom will leave me in the company of other friends and family when she has work to do or needs a well-deserved break from the constant struggles that I go through. When my mom isn’t basically my Siamese twin during those hard times, my dad is. And when my dad has work at the same time as my mom, I always have grandparents to lean on. And if they’re busy, I have my mom’s friends, many of whom I’ve known my whole life.
A disturbing number of parents just drop off and leave their sick kids in the hospital, hardly ever coming by to visit them. My mom often tells me stories about how she used to have incredible urges to cradle crying babies and young toddlers in the hospital that were left alone in their cribs, with no parents or friends to comfort them. She even cried herself to sleep some nights because of those kids. Thank God I was never one of them.
When I was born, I was what doctors called a Blue Baby. I was not breathing, and even when doctors finally did get me to start screaming my lungs out after several tense minutes, I still had a greyish tint to my skin. It turns out, I had a severe genetic heart condition called Pulmonary Atresia. Basically, my heart was deformed on the inside. A heart valve called the Pulmonary valve was deformed, which meant it didn’t open and close in sync with the other valves within my heart, and heavily restricted my blood from flowing into my lungs. This was a major, life-threatening problem. If my blood couldn’t flow into my lungs as strongly as it should, my body would be deprived of oxygen, resulting in Hypoxia, which could then cause severe brain and liver damage within minutes if not treated correctly.
Doctors immediately strapped an oxygen mask to my face while I squirmed and screamed in my mom’s arms. Barely five minutes later, doctors whisked me away on a stretcher, with my dad right beside me. They had to transfer me to another hospital, because the hospital in Littleton, Colorado, did not have cardiology specialists who could treat me. I ended up going to a hospital in Denver by ambulance, with my dad sitting right next to my stretcher, and my grandpa racing in his car just behind us. My grandma stayed in Littleton to comfort my mom. My mom couldn’t come right away, because she had a C-section, and needed to recover for a minimum of three days in the Littleton hospital. She didn’t know if she would see me alive ever again.
While I struggled at the new hospital, my grandpa Lyle was watching over me while my dad slept. He laid his hands over my heart and felt it beating in erratic, quick beats. There was no rhythm to it, and the longer my grandpa kept his hands over my chest, the worse my heart beat. My grandpa, with tears in his eyes, begged God for healing.
"Do not let this child die." my grandpa whispered, "If you need another soul in heaven, take me, Lord, take me. But please, heal my granddaughter."
Immediately, my heart began to beat more regularly. It stopped skipping beats and slowed down considerably. While my heartbeat was still irregular, my grandpa knew my heart was being healed right then and there. In fact, he almost thought I didn't need an open heart surgery to correct the issue. However, doctors later checked on my heart and, while they acknowledged it was definitely beating a little better than before, I still needed open heart surgery to fully correct the issue, although that correction would only be temporary.
Three days after I was born, I ended up under bright surgical lights surrounded by some of the most experienced cardiology surgeons in the world. My heart was about the size of my tiny newborn fist, which required near-impossible skill and concentration to work on. The surgeons were tasked with removing the deformed valve, and then replacing it with a tiny rubber replica, as well as a shunt, which is like a tiny plastic straw, to direct some of the blood away from the rubber valve, as to not stress it out too much. In order to get to my heart, my ribcage had to be sawn in half, and then pushed off to the side like a pair of automatic sliding doors. I also had to be hooked up to a machine through various tubes and wires, which acted as my artificial heart, because my real heart would have to be completely stopped during the surgery. I was technically dead for nearly five hours.
As you probably guessed, the surgery went well, and my mom was one of the first people to greet me in the recovery room. Of course, as soon as I woke up, I started screaming, and I didn’t stop for months. I’d occasionally exhaust myself into a deep, silent sleep, but as soon as I woke up, I’d scream my little lungs out again and wouldn’t stop until I fell asleep again, or became distracted by something. Even when I was born, on May 15th, 2001, doctors still debated about whether or not newborn babies felt pain like adults do. Because of this, I was denied all forms of painkillers, except for the smallest dose of Tylenol.
My parents and grandparents did their best to keep me calm and distracted. My parents would constantly take me out of my crib and hold me. At the time, I was still hooked up to various tubes and wires, which made holding me difficult, but nothing could stop my parents or grandparents from intensely loving me. My parents and grandparents would occasionally take me outside, carefully pulling my stand with IV bags and machinery along with us. I loved nature, even then, and would become quiet and filled with wonder whenever my family showed me the trees and the flowers in the hospital’s garden.
For the whole month I was in the hospital, I was never alone in the room. My parents, grandparents, and friends would take shifts watching over me. Even when doctors wanted to talk to them, they’d always have their conversation right at my cribside. Doctors had them believe that I had only months, weeks, or even days to live, and sometimes offered to turn off my machines because my survival seemed impossible. But my family refused to let me go like that.
This picture was taken shortly after my heart surgery. Behind my dad is my life support pole, and you can also see the bandages protecting my fresh scars on my chest. Also, behind my head is an IV, which was actually inserted into the top of my head, because that was the only place doctors could find a vein.
On top of my heart issues, I was not digesting food, and I was allergic to my mom’s breast milk. Even when I was put on a special formula, I had severe diarrhea and continued to rapidly lose weight. My mom also noticed that my diarrhea was very pale, which was a sign that my liver was not functioning properly. Even though I was on various medications, things didn’t get better. As my weight dropped from 7 pounds to just over 4 pounds in a week, doctors told my family that my chances of survival were continuously dwindling, and I was only suffering more and more permanent damage I likely wouldn’t survive.
Two weeks after I was born, my mom received a phone call from a doctor while she was at work. The doctor on the line solemnly told her that my newborn screening tests had come back, and they showed that I had another rare and dangerous genetic condition. This condition was called Cystic Fibrosis, which is generally characterized as a lung condition that slowly but surely destroys the lungs. But CF also gradually destroys other things, such as the liver, sinuses, pancreas, and pretty much everything else that is covered in mucus. While this was an Eureka moment in some ways, this was also a terrible diagnosis. At the time, CF was still very misunderstood, and only a handful of treatments and medications were available. At least those treatments and medications could solve my digestive issues, and prevent my lungs from filling up with fluid as rapidly as they were, but there were still a lot of things that couldn’t be treated.
During that phone call, the doctor gave me 10 years to live if I was lucky, 16 years to live if I was very lucky, and 20 years to live if I was a miracle. But he warned that my short life would be full of pain and suffering, and all my parents could really do was make me comfortable and pray for a miracle or a cure. When my mom hung up the phone, she told me she immediately began to pray, and an inexplicable sense of peace washed over her. Somehow, she just knew that I would be ok.
About two weeks or so later, I was allowed to go home for the first time, still hooked up to various machines and IV bags. I was on constant oxygen, and my parents had to give me injections and vaccines nearly everyday to protect me from nearly every possible disease they could think of. My parents also had to put bitter-tasting digestive medication into my bottle every time I ate. While I took the bottle without complaining, my parents said I always had a scowl on my face due to the bitterness of the medication. Aside from the medications, my parents had to perform a form of physical therapy, where they’d pound my chest and back with cupped hands to loosen up the mucus that was building up in my lungs. Obviously, my parents didn’t beat me anywhere near hard enough to hurt me, but they beat me just hard enough to dislodge the extra mucus in my lungs, so I could cough it out, or they could suck it out. I really hated the suction tool my parents used to get the mucus out of my mouth, throat, and nostrils, but it had to be done because I was still too little to cough it out on command.
At night, my parents would take shifts watching me sleep. They had to do this to make sure I didn’t breathe in too deeply, or breathe too shallowly. If I did either of those things, my parents had to immediately call an ambulance, because my lungs could very quickly and suddenly fill up with fluid, and I’d have less than an hour to live before I’d end up drowning in my own mucus.
Unlike what most parents with extremely sick babies do, my parents took me everywhere with them. My parents wore a backpack containing all of the necessary medical equipment to keep me alive, while they had me in a car seat or strapped to their chest in a harness. The distractions of the outside world kept me entertained enough to keep me from focusing on the pain. By then, my heart surgery scar had pretty much healed, but it was still sore and fresh. They also hoped that it would expose me to various germs so my immune system would get stronger. I was vaccinated, so I was safe from suffering too much harm, but it was always good to expose me to the outside world so my immune system would be healthier as I got older.
Sometimes, while they went to work or took a much needed break, my parents would drop me off at my grandparents’. I have two sets of grandparents on my mom’s side, because my mom’s biological parents divorced when she was a teenager, and they both remarried. My grandma Debbie was married by then to a man I call papa Shawn, while my papa Lyle didn’t marry until I was a toddler to a woman I call grandma Connie. So, usually my papa Lyle took care of me when my parents couldn’t. He was a massage therapist for a long time, and used what he knew to comfort me and do my physiotherapy. I still get massages from him if I’m sore after a long day, and it always helps.
My grandpa Lyle was a very religious Christian by the time I was born, but he hadn’t always been. In fact, he was an agnostic up until his marriage with my grandma Debbie fell apart, shortly after he got laid off his job working for a phone company in downtown Denver. His struggles forced him to find peace and comfort in the Lord, and when I was born, he leaned into God even further.
My papa Lyle experienced a handful of miracles when I was a newborn. He prayed over me often, and when I was just 8 days old, I woke up for the first time without screaming. He came over to my crib while I fussed a little bit, and used a warm, damp rag to wipe me down to comfort me. As he did this, I looked up at him and smiled. Then I looked over his shoulders and smiled again, and then I closed my eyes and smiled a third time before going to sleep. That was confirmation, to my papa Lyle, that God was on my side and I would be ok.
Later on, when I was about a month old, my parents and I all came down with a flu. My parents had it worse than I did, but I wasn’t eating. My papa Lyle offered to take care of me for a few days while my parents got better, and assured them that he’d get me to a doctor as soon as possible.
I didn’t eat for the rest of the evening, but that night, I started crying. Papa Lyle immediately made a bottle, and I accepted it. He laid me down again, and two hours later, I was hungry again. In fact, every two hours I’d wake up hungry. After a long, sleepless, but joyful night, at 7:14 AM, my grandpa and I both woke up laughing. Some time in the middle of the night, my grandpa moved my crib into his room, so he didn’t have to walk down the hall to get me each time I woke up. So, when we woke up at the exact same time, laughing as if we had just seen the funniest thing ever, my grandpa just knew that I’d be ok.
7 is a holy number. In Christianity, it’s the number of God’s perfection. 14 is God’s perfection doubled. If that isn’t a sign of God’s love, I’m not sure what is.
However, soon after that experience, I had to be rushed back to the hospital. My lungs were rapidly filling up with fluid, and doctors didn’t know if I’d survive. I had a severe case of Pneumonia caused by an infection not related to the flu, and while antibiotics seemed to be working, my health was deteriorating faster than the Pneumonia was clearing. Antibiotics are the nuclear bombs of the medicine world. They do not target certain bacteria. They kill any and all bacteria in the body, including the good stuff as well as the bad stuff. Even today, I struggle severely with antibiotics, because they kill almost all of the good bacteria in my digestive system that are needed to properly digest food.
Because of this, I lost a lot of weight I really couldn’t afford to lose, while I spent a month or two in the hospital battling Pneumonia. Once again, doctors warned that I wouldn’t live much longer, and even if I did, I’d come out of the hospital with severely and permanently damaged lungs. However, my parents more or less stuck their fingers in their ears and refused to hear the doctors say this, only demanding that they continued to treat me the best they could. My doctors did, even if some of them were reluctant to continue pumping various antibiotics and other medications into my system.
Two months later, I was released from the hospital after successfully fighting off the lung infection. From there, I rose like a phoenix and away from death’s doorstep, which I seemed to be standing on, holding my finger on the doorbell the whole time. I only got better from there, and by the time my first birthday came around, I was indistinguishable from any other one-year-old in behavior and looks.
I was a lively and difficult one-year-old. My grandpa Shawn and grandma Debbie affectionately nicknamed me "The Pill" because of my behavior. I cried often, had a pretty short temper for a baby my age, and usually fought against my medications the best I could. At first, my grandma Debbie thought I was just being difficult whenever I tried to push away the spoonful of purple medication. She made sure my mom got the cherry-flavored stuff so I would take it, but I still had an intense scowl each time my parents or grandparents eventually forced the spoon into my mouth.
That was until one day, when my grandma Debbie was briefly distracted while she held me in one arm and the spoonful of medication in the other. I took the spoon out of her hand and stuck it into her mouth as she turned to grab the spoon from me. She immediately gagged and spat the medication into the kitchen sink, while I giggled and clapped my hands. After that, she immediately called in a prescription for the medication to come with extra cherry flavoring, because the medication I had been reluctantly taking for months tasted terrible, like maple syrup mixed with spoiled milk.
I didn’t complain about my medications so much once that change was made. To this day, my parents and grandparents usually try out a medication for me if they can before giving it to me, or at least seek advice from people who have taken the medication. And if I don’t like the taste or size of a certain pill, I can usually get it changed.
After that incident, my nickname changed from “the Pill” to “the Tank”. I was very tough, not just because I already survived the impossible, but because I really enjoyed playing rough. I was probably the only toddler that found entertainment in getting knocked down by walking behind the swings at the park. I’d do it on purpose, because I thought it was a game to run up behind an unsuspecting kid on the swings, and then get knocked to the ground while my parents and other parents desperately came running to prevent me from getting hurt. However, I would always laugh, and while that was much better than crying, it worried my parents as well as other parents. What toddler laughs when they get hit by some elementary school kid going as fast as possible on a swing? Well, I did.
I also liked to play rough with other kids. Of course, most other kids didn’t appreciate being punched or downright tackled. But, when I was two and three years old, I didn’t know any better, and I didn’t understand why the other kids, many of whom were several years older than me, would run crying to mommy whenever I tried to play with them. Eventually, I did learn how to have fun with my peers without hurting them, but not without a little punishment from my parents.
However, my papa Shawn kept the daredevil inside me alive. He’d playfully wrestle with me, and play rough pillow fights with me. I always got knocked down each time he threw a pillow at me, but I loved it, and I more or less demanded him to throw more pillows at me until his arms were numb from exhaustion. It’s a miracle nothing was ever broken in the living room, which was more or less a warzone for at least two hours a day. Sometimes, my grandparents’ big dogs would get in the game. They were gentle giants, and they loved to slobber all over me when I was knocked to the ground. My grandma thought they loved to lick me because my skin was extra salty, which makes sense, given the condition I was born with.
The root cause of Cystic Fibrosis is caused by the body’s inability to process salt properly. In every cell in everyone’s body, there is a little salt chamber that processes sodium, which looks and acts like a straw. In normal cells, the salt chamber is straight and clear, and the cells produce the correct chemicals to properly process the salt and turn it into something the body can use. Salt attracts moisture and keeps the cells hydrated and functional, and special cells that move mucus around the airways, called cilia (pronounced: silly-ah) need that salt to survive.
In Cystic Fibrosis cells, the salt chamber is twisted into a series of extreme knots, and the cells lack the proper enzymes needed to properly process the salt. While I can process about 10% of the sodium I take in, 90% of it is rejected through sweat and tears. Whenever I sweat or cry, my skin glistens with salt crystals. Salt is also acidic when it’s mixed with water, so everything I touch for a prolonged period of time corrodes to a certain extent. I don’t play the guitar often, but when I do, I have to replace the strings after only a few hours. Most of my computer keyboards also suffer damage if the numbers and letters are stickered on, so I either have to have a few numbers and letters on the keyboard memorized, or buy keyboards with the numbers and letters actually made in with the keys.
Most of the cilia in my body is dead and non-existent, which allows the mucus in my body to sit still. On top of that, because my body is dehydrated, the mucus in my body is extra thick and sticky. Not only does it not move, but it sticks like super glue to my insides. Mucus is a prime breeding ground for bad bacteria to live and multiply, so every time I get sick, it’s usually very bad, and I almost always come out of illness with worse lungs than before.
By this point, my mom was chewing her nails over my personality. She could still make me wear skirts and dresses, but I never wanted to play with Barbies or get my nails painted. Instead, I was fascinated by airplanes and trains. By the time I was 4 years old, I had a pretty large collection of trains and planes that I would take with me between my mom’s and dad’s houses. My parents divorced when I was two years old, and ended up having joint custody of me.
My mom didn’t play with me like my dad did. She’d take me on walks and to the park, and sometimes do some finger painting with me. But my dad enjoyed playing with my train sets about as much as I did. He’d find interesting ways to build up tracks, using books and giant Lego bricks as foundations for the tracks to make the hills taller than I was. Sometimes, they’d fall over, and I’d be just as entertained by the destruction as I would be by the trains going so fast down the hills, that they’d launch off the track and skid across the tile floors in the kitchen.
Papa Lyle also played with me often, though he didn’t build epic train tracks like my dad did. I was a very inquisitive child from the get-go, and he’d always entertain my questions and teach me things that I otherwise wouldn’t have learned until elementary and even middle school. Papa Lyle put his knowledge of physics and math to good use by teaching me how things work, such as how planes fly and why my left hand was my right hand in the mirror. One time, we made so many paper planes in one day using two packets of construction paper, that when my mom came to pick me up in the evening, she couldn’t walk through the living room or the dining room without stepping on them. Papa Lyle also took me on long walks, and would show me each and every flower we came across, and explained why bees and butterflies were attracted to them.
Papa Lyle even taught me how to play the piano when I was four years old. Thanks to him, I still play very well, though I never learned how to read notes, and I don’t plan on learning notes. I can learn any song on the piano just by listening to it once or twice. I just don’t like playing for people besides very close family. I get very nervous and pretty much forget how to play.
My grandma Debbie played with me like my mom did. She had a lot of play-dough, and we’d spend hours creating little clay animals while we watched TV. I didn’t really like cartoons, but I loved anything on Animal Planet. My grandma would let me watch it as long as there weren’t any animals eating other animals. Back in the very early 2000s, Animal Planet had a lot more kid-friendly shows about dogs doing tricks and Steve Irwin playing with crocodiles, so it worked out.
Still, death hung over me like an ominous storm. While I looked and acted like any little kid, doctors still warned that I had a very long and painful road ahead of me. When I was five years old, cardiologists told my parents that I'd soon grow out of the valve and shunt I received when I was three days old, and I'd need a new one. This meant that when I was nine or ten years old, I'd have yet another open heart surgery to get a replacement, which would include a bigger shunt and a bovine valve rather than a rubber valve. The doctors also said that valve would also be temporary, and my family should expect to see me go through another open heart surgery every five to ten years.
This obviously troubled my family very much, because the last thing they wanted to do was go through the same traumatic experience over and over again. I was such a healthy and energetic 5-year-old. They didn't want to see my health get crippled ever again, yet, there they were, being told by the same cardiologists who worked on my heart when I was a newborn, that I'd need occasional open heart surgeries every 5 years and check-ups every three to six months for the rest of my life.
Naturally, my grandpa Lyle returned home and immediately prayed for healing once again. Unfortunately, not everyone in my family was so faithful. Suffering is a double-edged sword. Sometimes, it brings people closer to God, and other times, it pushes people away. My dad ended up losing his faith over that prospect of having to witness me go through the same trauma over and over again. He could not understand how an all-powerful, all-knowing, and all-loving God could allow such horrible things to happen to me, and as a father, who pledged to protect me for life, not being able to protect me from such horrible things was crushing.
Months went by. When I was six years old during a routine check-up at the cardiology hospital, doctors were stunned by what they discovered. My temporary heart valve had been used as scaffolding for an actual, natural, and completely functional pulmonary heart valve to grow over. This had never been witnessed before. Pretty much over night, my pulmonary heart valve grew back, effectively curing my heart, and saving me from ever needing another open heart surgery ever again. My case spread like wildfire, especially when doctors wrote about it in medical journals.
When doctors told my family about this, they were all equally shocked! A prayer had been answered. The impossible happened. And to this day, I am the only person to ever have been cured of Pulmonary Atresia.
Doctors couldn't explain it, because I was told old for stem cells to regrow a heart valve like that. Stem cells last for only a couple years maximum, and I was six years old when my heart valve grew back. Plus, my heart had already been messed with too much to be cured by modern medicine. It was deformed thanks to genetics, and cut through and reshaped during surgery, killing the chances of me ever having a normal heart again. Something, rather supernatural, had to happen to grow back that heart valve. Even my doctors admitted that, although they were rather reluctant to basically say, "God did it.", as I'm sure any scientist would be.
These days, I’m still a lot like I was when I was little. I’m just a lot older and wiser. I still enjoy learning new things, playing rough, and being outside. I also stopped wearing skirts and dresses when I was in elementary school, and have since stuck to wearing jeans, T-shirts, and camo hoodies everyday. My mom gave up on making me a girly-girl a long time ago. Hell, she gave up on trying to force me to dress in formal clothes for formal occasions. In my mind, people like me or they don’t, and I couldn’t care less about what people think about me attending a wedding in jeans and a T-shirt.
Everyday, I’m reminded about all that I went through as a newborn. My chest is seared in faded scars from my open heart surgery I had roughly 18 years ago. My main heart surgery scar goes from the base of my neck where my collar bone splits, all the way down to my belly where I have a few extra dimples just above my belly button. There are also a few welts around my torso where tubes and wires once were, and a small scar on my right wrist where a wire was placed to monitor my pulse.
I don’t like showing off my scars by wearing bikinis at the beach or low-necked shirts. I’m not ashamed by them at all. In fact, I’m very proud of those scars. I just don’t like it when people point them out to ask what happened, because most of the time, people just don’t understand.
Instead, I only show off scars I can easily explain, such as the large white scratches on both of my forearms I gained after crashing my dirtbike into shale gravel, or the scar on my cheek I got from a much earlier (but unknown) childhood injury.
In general, I just don’t like showing myself off though. While most girls my age and younger spend years trying to make themselves look like Instagram models in real life, by putting on ten pounds of makeup everyday, dying their hair, and buying expensive clothing, I literally try to blend into my natural surroundings by wearing camo hoodies and worn blue jeans, and refusing to wear makeup or style my long, golden brown hair. While camo is very useful for hunting, it also helps TSA agents make jokes about being unable to see me while I walk through airport security. That is something my mom refuses to let me forget.
Despite my appearance, I still take very good care of myself. I like being very clean so I don’t get sick as often or scare people away by being gross. My mom thinks that our water bill is so high because I take very long hot showers every night. I can’t deny it, just like I can’t deny the fact that I eat roughly $400 worth in groceries every month. We can all just be glad that my mom can afford it thanks to her real estate career she’s worked so hard to grow. 20 years ago, my mom had no AC and had to jump start her rusty car every time before she drove it. Now, she can afford a large house for us in a pretentious suburb a mile away from Colorado’s front range foothills, as well as our impressive food and water bills.
I enjoy living by the foothills. They inspire my art, as well as feed my sense of adventure. But most of all, they remind me, like the scars on my body, of God's existence. I've spent my whole life trying to rationalize the miracles I've experienced, and have tried to use philosophy and science to debunk God's existence. But every time I think I've jumped on the train that will take me to atheism, or some other belief besides Christianity, I've always been brought right back to God. Most people don't understand how I could be so stubborn and resistant, and to be honest, I don't get it either. My skepticism is embarrassing sometimes, but at the same time, I think it's good I'm not afraid to admit it, and it's always healthy to be skeptical. Just as long as one doesn't take that skepticism to the level of a flat earther.
I'm just glad that God is patient and merciful. Otherwise, God would've let me die long before I had a chance to live. I should've died numerous times throughout my life, yet I'm still here, unscathed considering the stuff I've been through. I don't know why God has kept me around while allowing so many others to die. Everyday on the online Cystic Fibrosis message board, there is a death or someone pleading for help. Everyday, kids much younger than me die from CF while on the lung transplant list. Everyday, someone asks for help on the message board, explaining that they are close to death and getting desperate. Everyday, I am reminded just how inexplicably blessed I am, and cannot do much except for praise God and write about my experiences like I'm doing now.
I do suffer from a lot of survivor's guilt, even though I know I've got no real control over my health or the health of others. I didn't ask for Cystic Fibrosis, and to be honest, I didn't ask for great health either. Yet, I am grateful everyday to be alive and as well as I am, and hardly ever take a day for granted. Sure, I have my days, weeks, and even months where I'm feeling down and anxious, but that's just a part of life. I also go through seasons of doubt and questioning. Everyday, it seems, I come up with another increasingly difficult question for God. But, from experience, I don't ask for God to present me with anymore challenges to answer my questions. I've been down that road too many times, and know how it ends. This isn't to say I regret those past prayers that have led to rather scary episodes, but now I've learned that it's ok to admit that I don't know the answer to every question, and I should just be grateful for the knowledge that I have now.
Every day is a new day with endless possibilities. If I've learned anything so far, it's that I should live every day to the fullest that I can live it. Of course I have days and even weeks where I'll just stay home and relax, but eventually I have to go on another crazy adventure, or else I'll be rather unpleasant to be around. One would think that my life experiences would tame me, and in some ways they have, but I also need an outlet in life to let out all of my pent-up energy and satisfy my need to experience and learn new things regularly.
But the way life certainly tamed me is by teaching me to avoid unnecessary suffering. I struggled to get along with my peers outside of school, especially in high school, because they regularly played with fire in their free time. I never enjoyed going to loud and wild parties or tempting fate in really dumb ways like many of my peers did. My peers thought I was boring because I didn't even think about doing the things they did. I take calculated risks. I don't usually do things without thinking first. Usually.
I'm still immature in a lot of ways, especially when it comes to the humor I find funny. While I can enjoy a good, intelligent joke every once in awhile, I thrive on Jackass style humor. I'm not ashamed to admit that I relate to that humor on a personal level. No, I don't purposefully put myself in harm's way just for a laugh, but my health issues really force me to laugh, because otherwise the only alternative is to cry.
Cystic Fibrosis is more than just a lung disease. I can't digest food because CF clogs up my digestive system much like it clogs up my lungs. Unfortunately, I can't unclog my digestive system like I can unclog my lungs. I just have to rely on medication to digest food for me, but even the best digestive medication in the world isn't as good as an actual digestive system. Because of this, I suffer from indigestion often, especially when I eat something I really shouldn't.
Trips to the bathroom are hardly ever short and pleasant for me. While I have an entire bathroom to myself at home, and no one questions me when I'm in there, I don't have these luxuries anywhere else. I usually try to limit what I eat and how much I eat when I'm out of town, especially if I'm staying with relatives who don't completely understand my condition. But, that usually results in other health issues, such as feeling hungry all of the time, losing weight, and getting very stressed out. I'm never easy to be around when I'm even a little bit hungry, and my mood only gets worse the hungrier I get.
I try to limit my time spent with those relatives. I love them, obviously, but my health is just as important. I hate being harassed by uncomfortable questions regarding my health by those who seem to forget my answers in minutes. Of course, there are other people in my life, like Clarke, who I'm comfortable talking about my health with, but that's because they understand, at least to a certain extent, and can laugh along with me.
My paternal relatives in Minnesota understand my condition the best. My grandpa Bob suffered numerous health conditions throughout his life, most notably a brain aneurysm that took away his ability to walk and talk with ease. He still got on with life, and he never complained about his condition. He never really talked a lot about his condition either. To him, it was just life, and instead of thinking about how much his body failed him, he needed to just get on with life the best way he knew how. He did everything he could, and never thought about the things he couldn't do.
Because of his condition, his family, most notably his wife, my grandma Shirley, did almost everything for him. He could still feed himself with some difficulty, and dress himself, but he often needed help bathing and going to the bathroom. When my grandma wasn't around to help him, there were other family members around who could. Most of my family still lives within a mile radius of each other, so my grandpa was never truly alone. My uncle Wade lives on a farm about a mile down the road from my grandparents' farm, and in between the two farms lives my uncle Wes, who doesn't really farm but still has a large house and lots of land for his family to enjoy.
Because of my grandpa's health issues, my family out in Minnesota easily understand and respect my health issues, which are similar to my grandpa's in some ways. Like my grandpa did, I take a ton of pills. And, like my grandpa, I also spend a lot of time in the bathroom. My grandma has health issues stemming from diabetes, so she knows how to cook great food that won't make me or her sick. But best of all, my entire family shares the same sense of humor I have, which makes my trips to Minnesota a breath of fresh air rather than a great source of anxiety.
I'm extremely grateful for the family that I have. My family is large and blended. My parents divorced when I was a toddler, and while that certainly made my life even more difficult, that allowed a lot of blessings to happen as well. Clarke is the father of my little half-brother, Jack. I consider Jack my full brother. Not only do we live together under my mom's roof, but whenever Jack goes to his dad's house, I usually tag along. Jack and I are 8 years apart, which makes Jack the annoying little brother. But even though we don't usually get along and have vastly different hobbies and interests, he's still my brother, and I still love him very much. I'm very protective of him, and that's because I'm the only person (besides Jack's other half-siblings on his dad's side) who gets to mess with him.
The weird thing about my family is that my dad also has a son, my other little half-brother, Ty, who is just 6 months younger than Jack. However, I don't know Ty very well, or the rest of my dad's married-in family for that matter. When I was 14, after a decade of fighting nonstop with my stepmom, I left the household. My stepmom also has a son who is my age, but I don't know him at all. My stepbrother has numerous mental health issues that made him a danger to me when we were 6 and 7 years old. It got so bad that my mom took my stepmom to court, where the court declared I should never be around my stepbrother again for my own safety and well being.
Of course, that little paragraph doesn't even begin to scratch the surface of that complete shitshow. However, it does begin to show just how complicated my family life's really been. In fact, everything in my life has been extremely complicated. There are endless things to worry about, all of which are very important. That probably explains why I'm so anxious and often overwhelmed.
I'm just glad I was born into everything, and didn't really experience what life was like without Cystic Fibrosis or a broken, blended family. I think I'd be much worse off had my health and family issues set in later on in my life. But since I was born with Cystic Fibrosis, and my parents divorced when I was only a toddler, I've never known what it's like to be normal. I'll never know what it's like to have a body without Cystic Fibrosis, and I'll never know what it's like to have both biological parents in the same household. While that sounds depressing, I don't know any different. I've adapted to my situation and have so far successfully maneuvered through it, even though it has always been very difficult to deal with.
But, personally, the hardest part about all of this has been dealing with the strong, constant feeling of loneliness. I really struggle to relate to people on a very personal level, because there really isn't anyone else out there who can relate to my struggles. Sure, there are other people with Cystic Fibrosis and broken families, but my situation is so unique that nobody I've ever known has been able to truly relate to me. People can sympathize with me, but they can almost never empathize with me.
I've been fighting most of my battles alone. There are people everywhere around me who have expressed their sympathy and have done everything possible to support me, but nobody can fight my battles for me, or truly understand what I've been dealing with my entire life.