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.
