How I navigated elementary school while living with SMA
When my mother was 7 years old, she moved to the United States without knowing a word of English. I’ve known this all my life but had never asked her what the experience was like until recently.
After questioning her about it, I learned that my grandparents had sent her to the third grade to fend for herself. Despite having no friends and no understanding of the language, she still managed to pass that year. When I asked her how she did it, she shrugged. “I just did. I had to survive.”
At that age, my experience was much different from hers. I had friends. I understood English. Two parents were actively involved in my schooling and always advocated for me. Nevertheless, while living with spinal muscular atrophy (SMA), there were many times I felt like I just had to survive, too. Although I couldn’t understand how my mother had managed to pass third grade without knowing English, I knew exactly what she meant by saying that survival was her only option.
Inevitable illnesses and a will to survive
While my mother recalled vivid memories of elementary school, I realized that my own memories were more fragmented. Those fragments mainly consisted of hospitalizations, illnesses at home, and bits of joy in between. I know there was lots of joy, but I had to rely on my parents, older brother, and friends to fill in the gaps. What I remember most about those early school days was the endless fight to maintain my health.
As a kid, I did as kids do and caught germs from other students. Being a kid with SMA, though, made getting sick dangerous. After all, living with this disease meant weakened muscles that affected everyday life, such as breathing, speaking, and swallowing. In turn, this made it challenging to fight off an illness on my own. Sometimes it was life-threatening.
I didn’t quite grasp this concept as a young girl, nor did I understand how deeply it had affected the fragility of my health. Getting sick wasn’t a life-or-death matter to me at the time. Even so, it influenced how I learned in school. It kept me from socializing with my peers and having the same experiences as them.
Regardless of whether it was a hospital bed, classroom, or the comforts of my own home, our priority was my health. When I was sick, it was round-the-clock respiratory treatments, suctioning, and staying vigilant about my treatment regimens. Some days, that included catching up on my homework. Other days, it meant catching up on rest.
During that time, I’d miss weeks of school and rely on my mother to teach me the information that I’d missed. I’d eventually catch up with my peers until inevitably, another illness came. Despite these setbacks, I was determined to do well in school while still prioritizing my health.
Some days, I had no other choice but to keep going. I had to keep fighting. In my mind, my hospitalizations and illnesses at home were detours on the road to my education. I was always eager to return to school and learn alongside my friends, and I knew I had to do whatever it took to get there. Just like my mom did decades earlier, I had to survive.
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.
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