Congratulations to Runner-up Guadalupe A. from Texas.
When I first read this year’s 21st Annual Caregiver Story Contest question by Shield HealthCare, I must admit I was initially stumped. When I think of the word “Inspired”, I think of acts of bravery, kindness, risk taking, exploration, creativity, and discovery, but on a grander scale than caregiving. In fact, if you look up the meaning of “Inspired” in the dictionary it states that: “mentally you are stimulated to do or feel something.” Per the definition, an inspired person often feels compelled to be different and do better than they currently are; honestly, I can’t say with certainty if my story falls into this category, but I will definitely do my best to tell my story.
As a child, I grew up in a single parent household in a low-income environment with a total of five children (including myself). The youngest of the children is our kid sister Chaya, who is both autistic and intellectually challenged; truth be told, while our mother did her best to care for each one of us, the care our younger sister needed required all of us to pitch in as needed. Early on, we as a family learned to take on the role of a caregiver in one form or another; my three older siblings especially took on these responsibilities more since I am only two years older than my sister Chaya. I believe the age difference between myself and my younger sister, however, afforded us the ability to be close friends even with her limitations. As such, that allowed us to learn how to communicate with one another in a way no one else in our family could. I believe this was one of my earlier times of being inspired by my kid sister; that is, knowing that there were differences between us but wanting to have some kind of relationship/bond with her in a more intimate level.
Initially, my role as a caregiver was limited in our younger years; however, as the years passed and our older siblings got older and began to make their lives, I was the one who helped our mother the most with my kid sister’s care. This was another point in my life where I again felt inspired to do more for her with the hope of providing her with as “fulfilling a life” a person with special abilities could have even with the challenges presented to her for being an autistic adult with intellectual disabilities.
Unfortunately, in the year 2008, our mother was no longer in a position to continue to care for Chaya on a full-time basis due to her own health challenges. Once again, I felt inspired to do my part and to provide some stability to my kid sister by becoming her sole caregiver. Ultimately, after considering all options, I personally felt it would be in her best interest to remain with family while my mother attempted to regain her good health. Unfortunately, our mother ended up losing her battle to Uterine Cancer and passed away in July of 2018. I cannot deny that the loss of our mother was a difficult one for me and all my siblings but, not surprisingly, a bigger loss, for my kid sister Chaya. Honestly, how does one explain this to a special needs person with the mental understanding of a little child? That the mother who was always there for her would no longer be around to comfort her; to show her love; to sing to her; and wipe away her tears when she was upset or angry or simply needing a comforting hand? Unfortunately, our family had never experienced a loss with an immediate family member and with it being the matriarch of our family; everyone struggled in their own way. Nonetheless, to this day, I still do my best to remind my kid sister of our Mom even if it pains me at times to speak of her. Whether it is by talking about her; replaying recordings of their interactions; repeating certain phrases that our mother would say to Chaya; and most importantly, reminding Chaya that she was greatly loved and still is by the life I have created for her as her sole caregiver.
In 2024, it will now be 16 years that I have been my kid sister’s sole caregiver and truth be told; it has been a rollercoaster of a ride with her. Yes, taking on this role has been a stressful one – not only is it physically and mentally demanding but also emotionally and spiritually challenging. One would agree that being “responsible for oneself” alone is a lot for most adults; but being responsible for another human being who is limited in her ability to communicate and express her needs is outright scary. While I feel I have had an advantage because I grew up with my kid sister, it doesn’t mean there aren’t difficulties or challenges with the role of not only being her sister but also being her parental figure. Because I will never know what it is like to be autistic and/or intellectually challenged, I feel that we will both continue to be inspirations to each other as long as I continue to be there for her. Being her caregiver has really shown me how to be more compassionate and patient, even with others. These last 15 years have been a window into her soul. As her sole caregiver, I can truthfully say that I’ve gotten to learn more of whom she is as an individual, as she is wickedly smart; artistic & creative; has a great sense of humor (a dark one at that); a perfectionist to a fault; not big on sharing (LOL); but always kind, caring, independent, and eager to learn from her surroundings. I could go on but that would take way too many additional pages.
In closing, while I will contend that some sacrifices have been made personally to be her sole caregiver, I can honestly say that if given the opportunity to do it all over again, I would not change my decision. Where others may see missed opportunities, I personally see a life with “meaning and purpose” outside myself as I am regularly surrounded by family and friends who love and support me in my role as my kid Sister’s sole caregiver. While there will always be challenges in this role that I have taken upon myself, my life is truly Blessed with my kid sister Chaya by my side. Ultimately, it is because of her that I continue to be inspired to do more and be more each and every day, not just to her but to everyone I come across in my daily life; and that is what inspires me about being a Caregiver.
Sincerely, my Kid Sister’s “Ride or Die”
