My whole life I have been a leader, the rule maker, the boss, a take charge and a “get stuff done” type of person. These qualities I attribute to being the oldest sibling, raised by a strong mother, and a stepfather determined to raise another man’s child as best he could. I thrive in situations where I can have control and can help guide a team or myself to the best possible outcome. I apply these characteristics to nearly every aspect of my life, sometimes to a fault. After dropping out of college eight years previously, to follow my dreams of being a makeup artist, I woke up one day and decided my life need a change.
Not completing school had always weighed on me over the years like an unfinished task needing to be done. So, why now, what changed? My outlook on life shifted after meeting a special little boy named Jackson. I first met Jackson’s family while working in a spa in Austin. I was waiting for my next client to show when I saw a mother with three small children attempting to get her haircut and not succeeding. Since I had some time to spare decided to help wrangle her brood and entertain them while the stylist finished.
After a couple of minutes with them I began to notice that each child had a special quirk about them. The oldest, 4-year-old Jakob, had a tough time with the noises around him and stared intently at his iPad. Mackenzie was 2 years old, very shy, and did not speak a word. She silently followed me around the salon. Which leaves Jackson, at the time he was 8 months old, but looked as though he was a newborn, in his first couple days of life. The mother watched in shock as managed to get all three kids quiet and mostly still enough for her to complete her appointment.
The very next day I was shocked when she walked into the spa and offered me a position and a hefty salary to help her with her children. At the time, I worked long hours and barely made ends meet, so | gladly excepted. Accepting that offer started a two-year journey that would forever impact my life. I soon learned that this family was unique, everyone excluding the father had a grocery list of ailments and disorders. The oldest son had autism and sensory processing disorder, while the middle child could speak, but had recently become mute.
Then there was Jackson. He was born at 24 weeks gestation, spent his first 6 months in the NICU, and developed neurofibromatosis a skin disorder that causes discoloration of the skin and growth of tumor along his nerve endings. After a week working with the family, I began questioning what I had done accepting a position I was clearly unqualified for, but being the determined woman I am I continued on. I spent most of my days working with lackson. learning his medical needs and how to best care for him.
Overwhelmed and scared to death, every day was a challenge as I was responsible for a fragile little person whose quality of life seemed to rest in my hands. Being born extremely premature, Jackson was underdeveloped and far behind other babies his age. He couldn’t hold his head up, ate through a gastrointestinal tube, and couldn’t gain the weight he desperately needed to continue growing and developing. The situation at times seemed hopeless. And then, almost overnight, Jackson began to make progress. He no longer looked as frail and began to gain weight, growing stronger with every day.
A year into working with Jackson he was crawling, eating solids on his own, and had grown enough to wear infant clothes closer to his actual age. He was making so much progress and so fast that he seem to be a normal healthy child. True to Murphy’s Law, Jackson started developing cafe au lait spots that are signs of tumor growth. At first they were small and not as concerning, but when they started to grow and become more prevalent we all feared the worst. Our fears were correct, and those tiny brown spots had produced 3 major tumors, all of which turned out to be cancerous.
The tumors contradicted his progress and he started vomiting randomly which caused him to lose weight drastically. All his hard work toward learning to walk came to a halt as the tumor on his foot made walking painful while adding to the difficulty of balancing. Jackson began sporadic rounds of cancer treatments as his body wasn’t strong enough to tolerate full treatments for fear of kidney failure or worse. On paper and in medical charts his life seemed to be dangling by a thread, but in actuality you would never know he was severely ill.
We spent days at the park chasing birds as he would scream and laugh with excitement. He ate anything and everything even though it was likely that he would only throw it up moments later. He loved to color, play ball, and dress up. To the unaware Jackson was a normal happy toddler. He attended school twice a week and made friends with all the children in his class. He continues to be an inspiration to almost everyone he meets. He recently underwent brain surgery to remove a tumor that had grown on his brain.
Days later his was back at, running down the halls of the hospital laughing and giggling like he didn’t just have a serious operation. Life can be cruel and often times it seems to be unfair to the best individuals. When I have a hard day struggling with balancing school, working full time, and maintaining relationships with friends and family, I always think about Jackson and how hard life has been on him in just his short life. I think about all the opportunities he may never get to have like learning to drive a car, going to prom, or completing his education.
If he can face every day with an unthinkable amount of exuberance and zest for life, living for each day, I can certainly get up go to school, spend that extra time studying when I’d rather be hanging out with friends, and continue to challenge myself academically. My current goal is to get into a reputable business school and obtain an MBA in Business Management. It may not be the easiest of challenges and it might take me longer to achieve than most, but I owe it to myself and I owe it to Jackson who may never get the opportunity to follow his dreams.
