Celebrating an unbreakable bond between sisters

“Having a sister is like having a best friend you can’t get rid of. You know whatever you do, they’ll still be there.” — Amy Li

My sister, Jessie, and I have always shared the closest bond among my four wonderful siblings. Growing up, she understood that I couldn’t walk or move much due to SMA, but in her mind, that didn’t matter; I was still her beloved little sister.

We spent countless hours playing together, whether it was her tying jump ropes around my arm while she twirled the other end and jumped in, pretending to be mother and daughter as she dressed and undressed me, or me reenacting the role of a student while she mimicked what she’d learned in school. These cherished moments with my sister are among my fondest childhood memories.

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Jessie Ramos, left, bends down and makes duck lips while holding up a peace sign over her sister Jasmine Ramos’ head. (Courtesy of Jasmine Ramos)

As the oldest of my mother’s five children, Jessie embodies a motherly instinct and has always protected me. Whenever we went out with our parents and people stared at me, she’d instantly go into defense mode, shouting, “What are you staring at?! You might as well say hello because she can talk!” I would always chuckle, knowing I had nothing to fear if my sister was around. We have a mutual agreement that only she can bully me!

Even now, as adults, there’s a running joke between us that I think of her as my second mom. Whenever it comes up, I always say, “You are my second mom. Duh!”

The other half of my heart

Jessie isn’t just a big sister and a second mom to me; she’s also my best friend. From comforting me through sickness and heartbreak to being the first to know when I’m talking to someone new, to encouraging my indulgence in highly caffeinated coffee and exotic foods, she has always been there for me without question.

She’s even saved my life countless times. I once had a mucus plug when my mother was at church, and no one else in the house heard my vent alarm going off. My airway was completely blocked. Fortunately, I happened to be on the phone with my ex, who called my sister. Jessie rushed over from her house five minutes away, even driving on the wrong side of the street to get to me in time.

My sister has a remarkable ability to calm my anxious mind, reassuring me that if anything ever happens to our mom, who cares for me currently, Jessie will never let me go into a nursing home or some kind of dreadful facility.

From left, Jasmine and Jessie Ramos look out at a baseball field under overcast skies. (Courtesy of Jasmine Ramos)

She always shrugs and says, “You’ll just have to live with me wherever I end up.” Of course, that is if I’m not already happily married and living my fairy-tale life.

Because of Jessie, I continue to excel in college and reach my full potential as a scholar. When I started working toward my associate degree, she stepped in to support me, balancing getting my nieces to school and arriving at my house before paratransit came to accompany me to classes. She served as my notetaker and scribe before I had eye-gaze technology, often rushing to the library with me to help type up my papers before class. In many ways, she was and still is my hands while I am her brain and life-size rag doll — another darkly humorous joke between us.

Now that I’m pursuing my bachelor’s degree, I’m somewhat more independent, thanks to the advanced technology devices provided by the Pennsylvania Office of Vocational Rehabilitation. I also take many more classes online since the COVID-19 pandemic prompted colleges to offer more virtual options.

Despite these changes, Jessie remains my No. 1 cheerleader, steadfast in her belief in my ability to become a social worker. When frustration and exhaustion strike, she reminds me that I’m achieving something not many could do, forging a path and inspiring her to continue pursuing her own goal of becoming a nurse.

Although I’m her little sister and look up to her in many ways, she also looks up to me. That is the beauty of our unbreakable bond. Despite my physical limitations and the hardships that come with having a family member with a genetic progressive neuromuscular condition, our relationship remains strong. My sister is the other half of my heart, and I would be lost without her.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.