SmartPak Monday Morning Feed: Saving Jaise
At the age of two, Jaise was diagnosed with a rare form of cancer. Despite the diagnosis, Jaise continues to find the strength to persevere. “Being in the presence of horses made her laugh, smile, and form close bonds with the horses she was caring for regularly. It’s a place with freedom to just be herself.”
This story was originally published on the SmartPak blog by SmartPak fan Lydia.
It is 3:17, on the morning of October 29th, 2020. I am sitting alone in my daughter’s hospital room. An occasional beep from her IV pump interrupts the deafening silence in protest at the bending of her arm, obstructing the flow of her much-needed medication. I turn my head and gaze over at her fast asleep, desperately wishing I could trade places with her. Her team of doctors has estimated that she will be here for at least five days this time. She has been admitted for an infection in her cheek along the rim of the implant she had placed to reconstruct her cheekbone and the floor of her eye as a result of radiation treatment that stunted the growth plates in her face. She was just two years old when she was diagnosed with a rare form of cancer called Rhabdomyosarcoma; a fate I would not wish upon my worst enemy.
Jaise had a golf ball-sized tumor growing in her eye socket that was attached to one of the muscles that controlled her eye. She was fortunate enough to have access to and to be treated by some of the finest health institutions and physicians in the country. Thankfully, Jaise has been cancer-free since she was three. However, as a result of treatment, Jaise has been left with short-term memory loss, dyslexia, dysgraphia, dexterity deficits, a cataract, cataract surgery, facial reconstruction, anxiety, depression, and other learning differences that haven’t been identified. Learning for Jaise is HARD, really hard and rarely does retaining information come with ease.
Despite her learning difference, Jaise is a gifted writer, analyzes literature with the skill of students several years her senior, is a masterful photographer, and has the ability to shape one’s perspective through her photography. She has faced a series of hopes, fears, triumphs, milestones, disappointments, challenges, and victories. She is constantly having to adapt to her limitations and will continue to have to do so for the rest of her life. I know Jaise would love nothing more than to put cancer behind her, but, it is always there lurking in the shadows waiting patiently, quietly to tap her on the shoulder when she least expects it; reminding her of its lingering longevity and persistent presence. Yet, despite cancer’s nagging and incessant ways, Jaise continues to somehow find the strength to persevere.
In an attempt to help my daughter cope with her daily struggles, I decided to introduce her to horseback riding as a healthy way to manage all of the challenges she was facing. As she grew, the left side of her face did not and, as a result of radiation, her face became markedly asymmetrical. Jaise has always been wise beyond her years and has had a hard time with peers her age as she is not afraid to speak her mind, move on from relationships that harm her, and often speaks freely without fear of offending.
As a teenage girl growing up with peer pressure, the added stress of social media, having an asymmetrical face, and being a person of color in a predominantly white private school, Jaise began to feel like she did not fit in. As a result, her self-esteem began to suffer tremendously. The daily reminder when looking in the mirror, the unwanted stares, snide comments from strangers and even worse-her friends often proved to be too much. I knew from my experience with childhood trauma how horses became my escape — my healthy form of self-prescribed therapy. I feel the relationship between horse and human is arguably one of the most unique, therapeutic, cathartic, and rewarding kinships that exist. I thought that perhaps introducing her to horseback riding would allow her to begin to heal.
Jaise’s entanglement with horses began at the age of five. She began to take riding lessons regularly and was fortunate enough to ride as an after-school sport. In seventh grade, Jaise got a job at the barn and spent her Sundays working in exchange for her weekly lessons. She learned the value of hard work, responsibility, reliability, team-work, stable management, horse management and was able to form close relationships with people that shared her passion for horses. As time went on, I watched in awe as Jaise’s mood seemed to change the minute she knew it was time to go to the barn. The miraculous transformation of my often sad, frustrated daughter recast her into an increasingly confident, bold, happier child. Rearranging the tack room, cleaning tack, or simply mucking stalls seemed to chisel away at all the heaviness that had been burdening her.
Being in the presence of horses made her laugh, smile, and form close bonds with the horses she was caring for regularly. A place with freedom to just be herself. It was inspiring to watch her learn about a subject she was so passionate about. Horses are masterful teachers and Jaise was effortlessly learning and retaining an impressive wealth of knowledge. For the first time in her life, Jaise was not being judged by her appearance or how difficult it was for her to learn, or the texture and length of her hair, or what she chose or didn’t choose to wear to school that day. She was giving and receiving unconditional love from the horses with which she had formed a close bond and it was simply astounding and heartwarming to witness.
In eighth grade, Jaise decided to start a new discipline of riding called Mounted Games and, after many months of attending practices, joined their organization, Mounted Games Across America. I would liken this particular discipline of riding to the equivalent of relay races on horseback. Something I knew nothing about as I grew up competing in Pony Club until I was 21. Mounted Games was something completely foreign to me as I was used to Eventing and Pony Club rallies where presenting myself and my mount in a flawless display of polished perfection was paramount. I was not at all accustomed to bright, colorful knee-high socks or jerseys that looked like I had somehow stumbled onto a soccer field instead of into a riding ring, equipment that resembled a cross between recycling day, a construction zone, and a jousting match, it requires jumping off your horse mid-stride and vaulting back on at an impressive speed.
It was all so different but fascinating to watch as Mounted Games requires a profound amount of athleticism, precision, teamwork, and courage sprinkled with a dash of grit. What I love the most about Mounted Games is the team that completes each task in the fastest time wins; there is zero importance placed upon outward appearance, winning is purely based on skill. As a person who has always been judged for her appearance, I could not think of a better organization for her to be a part of. Jaise entered her first Games competition in April of 2019 and loved it! She attended practices and camps and honed her skills to prepare for her first competition.
Witnessing how happy Jaise was, I made a rather impulsive decision to buy Jaise her own gaming pony, Luna, which is quite possibly one of the best decisions I’ve ever made. Somehow, I managed to pick the one pony that is the literal equine version of my daughter. Luna is a feisty, temperamental, sassy, sweet, loving, smart, silly, isn’t-afraid-to make-her-presence-known, sometimes pushy pony that takes care of my daughter in ways I never could have imagined. Luna has been a cure for her sadness, depression, stress, and frustrations. She is her sanity and her savior when she feels hopeless and alone. Luna is the keeper of all of her secrets, boosts her confidence and trust, and restores her faith in love and acceptance-they love each other unconditionally and there is nothing more rewarding to discern. They are perfectly matched in every way and challenge each other’s patience in a healthy manner that makes me chuckle sometimes as Jaise often gets a glimpse of what it is like to parent her. I could not have asked for a more indefectible gift for her that was somehow delivered in the form of a perfect-to-us little 13.0 hand, opinionated, cute as a button, chestnut mare. (Yes, I said chestnut mare.)
After Jaise competed successfully for a season, I decided to buy my own Games pony to share our love of riding. I have had to learn a completely new discipline that has tried my patience and quite frankly made me question my judgment as to why I felt the need to start a new discipline that involves hanging off the side of a horse while they are moving at the age of 49. Against my better judgment, in October of last year, I purchased my own gaming pony, Shiloh. I have had to depend upon Jaise’s skill, knowledge, and expertise to teach me the rules as COVID prevented us from attending formal practices for much of the spring. I must say it is a humbling experience to have your child teach you something you know nothing about. I am proud to say I couldn’t have asked for a more patient, kind, tolerant, and forgiving teacher to show me the ropes.
Thank you, SmartPak, for hearing me. For listening to and allowing me to share Jaise’s story. I am so grateful your company is committed to creating an environment where EVERYONE is noteworthy. Your inclusion, statement, and commitment to change brought me to tears. I can assure you it is not easy being a person of color in the equestrian world as we are seldom represented in a sport that throughout history has been reserved for the wealthy and elite. Fortunately for Jaise and generations to come, times are changing.
I am thankful that Jaise will see other riders that resemble her. Within the last few months, I have beheld more people of color gracing the pages and website of SmartPak than I have in the 40 years I have been riding and for that, I am so very grateful. In the horse world, we celebrate and embrace how wonderfully different they are. Horses come in all shapes, sizes, and colors. They form meaningful, trusting relationships and bonds. They search for acceptance, belonging, and guidance. It has been my experience that people do not differ greatly in that regard. No matter your race, background, or difference, I think horse lovers can all agree they are majestic creatures that possess an almost indescribable beauty.
I am hoping Jaise’s love of horses will continue to provide her with positive and rewarding benefits to help her cope with the challenges she will continue to face. I hope her passion will assist in her healing. But most of all I hope that one day Jaise will discover that she has ALWAYS been, quite simply, extraordinary.
What has been most valuable to me on my journey with Jaise is that my experiences have given me an insight and perspective that has taught me to pause before I judge, be patient when I don’t want to be, show compassion even when I feel it isn’t deserved and to be humble as life will always find a way to put me in my place. As the mother of a child with cancer in addition to being a Neuro-trauma nurse for 14 years and now, ironically enough, an Eye Emergency Room nurse, I continue to come back to what always seems to ground me; perspective. I have seen a lot of sadness and suffering in my career and my personal life. I have witnessed firsthand how difficult it is to be “different” in this world. There seems to be no limit as to how callous and incredibly cruel people can be.
Watching my child struggle has been a formidable and strenuous challenge. It is a heavyweight that never lifts but with that heaviness comes awareness, the awareness that matching socks, tidy hair, and perfectly manicured lawns don’t matter; time and health do. Time and health are, in my opinion, the two most valuable gifts we have on this earth. So tell the people you love, you love them with a fervor that borderlines annoying. Compliment one another, offer support and understanding for those that may differ from you because at the end of the day on a very basic level we all want the same things: health, happiness, love, a home, and well….horses. Some of us want horses.
I felt compelled to share Jaise’s story with the hope that she may inspire and give strength to someone else who feels they are different or perhaps are going through a challenging time in their life.
I don’t know what the future holds for Jaise but I do know I’ve done everything within my power to raise a compassionate, kind, funny, thoughtful, well-rounded, independent, resilient child despite her diagnosis. She is so very deserving of all things good as we all are. I don’t know where the road will take us next, but I hope that there will be an opportunity one day for Jaise to realize her greatness. I hope she will find peace, whatever that means for her. It has been a long, tiring, and unpredictable path but like the saying goes; some of the most difficult paths often lead to the most spectacular views. In the meantime, you can find me and Luna spending our days saving Jaise.
You can find this and more stories on the SmartPak blog. Go SmartPak and go riding!