A Mother’s Day tribute to a mom who’s always present
In the late summer of 2021, we took a family vacation to Orlando, Florida. Our resort had an accessible outdoor pool, so we couldn’t resist spending a sunny morning relaxing in the glittering water.
As I sat in my mom’s lap, my smaller, floppy body held upright by her stronger, supportive one, we were entertained by two young girls joyfully frolicking at the shallow end. Before leaping through the spray of a fountain, one of the girls called out, “Look at me, Daddy!” From his seat on a nearby lounger, her father redirected his attention to watch his daughter’s stunt.
Mom mused that she didn’t recall my younger brother or I voicing requests for her to watch our antics as children. As my fingertips drifted back and forth through the water at my sides, I contemplated this observation. “That’s because you were always watching,” I replied.
What being present for her children looks like
When I say my mom was always watching, I’m not speaking literally. It isn’t possible to keep a direct eye on two children at all times. Plus, she has other things to attend to like her career, hobbies, relationships, and sleep.
What I really mean is that we’ve been gifted with our mom being present. She’s involved in the big and small parts of our lives, and even when she’s not physically in the same room with us, she remains in tune with her children’s needs and desires. We don’t have to ask for her attention because it’s already available to us.
A mother, caregiver, and advocate
I don’t know what my life would look like if my mom wasn’t like that. I’m unsure if I’d even be alive and healthy without her dedication and care. She’s spent countless hours and sleepless nights being my full-time caregiver, nursing me back to health, navigating assistance programs, cleaning up messes, praying for me, and supporting me in every way possible.
In a 2019 column titled “Days That End in ‘Why’: A Letter to My Parents,” SMA News Today columnist Katie Napiwocki expressed gratitude for the roles her parents have played in her SMA journey. To her mother, she writes, “When physicians coldly told you I wouldn’t live beyond my teenage years, you waved them along amid your tearfulness and sought supportive, knowledgeable healthcare providers. You never gave up.”
My family wasn’t promised that we’d even see those teen years. My total life expectancy wasn’t predicted to surpass three years. The only thing to do, doctors advised, was love me for as long as I had left. And I’ve been blessed to receive that love in abundance for 25 years and counting.
Like Katie’s mom, mine also dedicated herself to providing me with the best life possible. She built a solid healthcare team that worked with her (and me, when I became old enough) to implement a plan that would allow me to thrive. Aside from God, she’s always been my greatest advocate and closest ally.
Extending her presence beyond the medical world
SMA often demands as much time and energy from my mom as it does from me. But that doesn’t prevent her from intentionally being present in all other aspects of life, too. We both recognize the importance of enjoying life and making cherished memories together, including when life is uncertain.
Mom painted a picture of this mentality with her own words in her contribution to SMA News Today’s “31 Days of SMA” campaign in 2020. She wrote, “My camcorder captured nearly every moment of my daughter, Halsey’s, first year of life. The times when she smiled so greatly her cheeks swelled up as sweetly as a marshmallow becoming a S’more. And as she rolled over from her back to her side, but just once.”
While my brother, Lucas, doesn’t have a disability, Mom still makes it a priority to care for him in the ways he needs, too. As he prepares for his senior year of college, caring for him could include giving career, financial, and general life guidance, and it leaves room for lunch dates and learning about his favorite video games and anime shows.
Our mom is a true blessing
As Lucas and I have become adults, our relationships with our mother have naturally grown. She’s become a friend in addition to everything else she does for us, and that relationship is one of my most valuable blessings. One thing that never changes, though, is her unwavering presence.
Mom has remained faithfully by my side from the beginning. She’s the person I trust most because she’s loved and supported me — literally and figuratively — through everything. No rare disease, or anything else, can break or diminish what we have. If anything, every hardship we’ve endured has only pushed us closer together as we seek goodness in all things. And I wouldn’t have it any other way.
Happy Mother’s Day, Mom. I love you more than words could ever express.
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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