How blowing on dandelions helped shape my SMA journey

When I was a little girl, I loved searching for dandelions at the first sign of spring. My mother would pick one off the ground for me, and I’d excitedly use all my strength and breath to remove the fluffy seed ball, or blowball, from the stem. One by one, I’d suck in air as deep as my little lungs would allow. Then I’d blow out as hard as I could, hoping to release more of the blowball than the time before.

To me, it was a fun game. To my mother, it was an easy way to get me to practice taking deep breaths.

I was hospitalized often as a child, each admission because of pneumonia. Though I have fragmented memories from those days, I remember doctors stressing the importance of keeping up my respiratory health. It wouldn’t ward off inevitable infections, but it’d hopefully keep me strong enough to fight them.

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Respiratory problems and illnesses have always been my biggest struggles living with SMA. As a kid, I dreaded my respiratory regimen, so my parents found creative ways to make it fun. I can still hear the song my dad would sing while giving me chest physical therapy. He’d freestyle the lyrics to the beat while tapping against my chest, but the first line of the song was always the same:

“I love a girl and her name is Alyssa. Boom, boom, boom, boom.”

Other times, when I was sick with a cold, my parents would tell me to cough onto the neighbor across the street. Of course, that was an exaggerated request. But rather than telling me to cough hard — difficult in my weakened state — they’d lift my spirits by turning it into a silly game that attracted my participation. And it worked: I’d produce strong coughs to clear the phlegm from my lungs. (Don’t worry, I never actually coughed on the neighbor.)

My parents tried their best to make the challenges of SMA fun. My respiratory regimen was one example. Then, of course, there were the dandelions.

The resilience of dandelions, and me

Little Lyss, loving an early spring. (Courtesy of Alyssa Silva)

I recently learned that dandelions are a symbol of resilience in many cultures. These weeds manage to grow in unlikely conditions, such as the dirt between concrete slabs, and yet they thrive. They persevere and grow every year.

Although I didn’t realize it then, those moments in my childhood were building my own resiliency and strength. Gleefully blowing blowballs off their stems, coughing “on the neighbor,” and all the other little ways my parents turned exercise into happy memories were setting the foundation for my fight with SMA.

Somewhere hidden in those carefree moments was a girl learning to thrive in unlikely conditions and persevere in her most harrowing moments. There was a resiliency blossoming within.

Today, I’m not only equipped to face respiratory challenges, but I also have a fighting spirit because of the love and creativity my parents showered on me during those times. I’m prepared to fight whatever comes my way. For that, I’m grateful.

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.