With our SMA assignment, glasses didn’t help me to see clearly

I learned my vision needed assistance in fifth grade. Although I unwittingly squinted at the chalkboard, my report cards never indicated a problem. I was a model student because I adored my teacher, Mrs. Chandler. I didn’t want to disappoint my teacher parents, either. They never needed to prod me to do well; as a typical firstborn child, I aimed for perfection.

Consequently, when annual vision screening in the nurse’s office revealed that I couldn’t see everything as I should, I was devastated. The nurse handed me a pink slip to take home, but because it would’ve disclosed the fact that I wasn’t perfect after all, I didn’t share it with my parents. Luck was with me, though, as the school nurse never followed up — hence, no glasses for me.

My luck held out in the sixth grade. I miraculously managed to avoid the annual screening, due to inadequate recordkeeping or something. The squinting and good grades continued.

Alas, there was no escaping the following year. In the auditorium, with the entire seventh grade in attendance, the nurse proclaimed I needed glasses. So I got them.

I admit it was nice to finally see clearly, though in ninth grade, I celebrated when I switched to contact lenses. The adjustment period for those tiny, hard, plastic discs that resembled bricks in my eyes lasted a couple of weeks. The discomfort was excruciating, but my eyes eventually quit protesting with relentless tears and performed magnificently.

Recommended Reading

November 30, 2020 News by Marta Figueiredo, PhD

Extensive Trial Monitoring Confirms Evrysdi Does Not Damage Vision

When everything’s blurry

Later in life, when my husband, Randy, and I learned that another baby, Jeffrey, was on the way, we were flabbergasted. We’d already had two children, Matthew and Katie, who rounded out our family perfectly.

My 43rd birthday came three days before Jeffrey’s early arrival. Since I’d survived new parenthood twice before, and our schedules remained hectic, I never considered refreshing my memory on infant milestones. In retrospect, my naivety enabled me to regroup and establish a routine of sorts before the ultimate sucker punch upheaved it all.

I still wore contacts when Jeffrey was born, relying only occasionally on my backup glasses. However, I was fast approaching the age when items close up were blurry with contacts — a perfect metaphor for what was going on right in my lap. Our sweet Jeffrey was the easiest, quietest baby I’d ever seen. He never wailed when he was hungry or squirmed when I changed his diaper. He loved nursing, seemingly content enough to drift off to sleep in utter bliss after just a few minutes.

None of this was normal, yet I paid no attention. It never occurred to me that after having two perfect children, our bonus baby wouldn’t follow suit.

Actually, Jeffrey was perfect. Neither contacts nor glasses could’ve helped me see that his perfection was just packaged differently. It took a shocking diagnosis of SMA, along with its crushing prognosis, to open my eyes.

The diagnosis hurled us into survival mode. The internet, which was new to us at the time, allowed me to learn more about this progressive neuromuscular disease and connect with fellow SMA families. While most connections provided a boost to our resolve, many also reinforced the acknowledgement that prolonging Jeffrey’s earthly stay might not be part of God’s plan.

My head and heart scrambled. With a long-range vision in mind, we searched for alternative treatments, desperate to figure out how to thwart SMA’s destructive nature and prove the medical experts wrong. Simultaneously, I began paying close attention to Jeffrey’s every move (or lack thereof) and breath. I pondered whether I was zeroing in on typical baby issues or SMA-related ones.

Glasses were no help. I needed a magnifying glass.

Depth perception

The switch back from contacts to glasses came almost 20 years ago. About seven years ago, I aged to progressive lenses, which I had to remove in order to see things right in front of me. It baffled our young grandchildren, Clara and James. When they’d show me something up close, I’d explain to them that I had to take my glasses off to see, which prompted them to ask why I wore glasses in the first place.

I was recently fitted with bifocals, which have made walking across our uneven yard an adventure. Sometimes the brown grass, covered with patches of snow, seems 3 feet away; other times, I feel like I’m walking on stilts. Surely, accurate depth perception will improve with time.

With respect to our brief SMA assignment, my depth perception, so to speak, was all over the place. I initially grieved over the fact that we’d been handed such a crushing assignment, especially since Jeffrey was unplanned. And yet when he took his final breath, snagging his wings and soaring to the perfect place, my optimistic self began unearthing continuous blessings. I remain appreciative that God entrusted us with such a paramount task.

And I don’t even need glasses to see that.

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.