Musings of a Visually Impaired Mother

I come from a long line of mothers. Women have been birthing babies since the beginning of time. You know that excruciating moment during childbirth when you are screaming “I can’t do this!” and then you dig deep and discover you can after all? I told myself in that moment “If my mom could do this seven times (yes, seven!), then I can too!” And then when the nurse placed my squalling, slimy, bundle of joy in my arms for the first time, I suddenly realized the labor was not even the hard part of being a mother.

I learned that I was expecting my first child from a neurologist, who was working me up for some unknown vision problem. The news was dulled by the uncertainty of my diagnosis. But I decided in the end that it was indeed good news and worth celebrating. Like every other expectant mother, I began to plan and dream of the days to come with my first baby. Before I knew it, my husband and I had two more babies, each two years apart; two boys and a girl in between. When I told my mother I was pregnant with my third she asked me “How did that happen?” and I replied “Oh, the usual way, Mom.”

The baby years are largely a blur, especially after the third one. It was a time of sleepless nights and exhausted days; the tired years. Someone always needed something from me. I remember feeling like a 24- hour Dairy Queen. I constantly “wore’ a baby around my neck or on my hip and my clothes were often adorned with baby body fluids. My body was no longer my own. But I remember those years with a special sweetness and wonder at what my husband and I had created together. There was sheer joy in cuddling my precious babies, taking in their milky breath, sleepy grins, and clutching fingers. During that time, I still did not know what was wrong with my vision and I didn’t think about it much.

Life got a bit busier during the toddler years. I call them the “sticky” years; Cheerios stuck to the kitchen table, gooey jelly fingers and tacky walls and windows. I had trouble conjuring up my inner June Cleaver. I was probably somewhere between Carol Brady and Roseanne on the mother spectrum. I much preferred playing with my children to cleaning up after them. I learned that children are incredibly resilient and durable. Eating a little dirt and even an occasional dead fly off the window sill, did not make them sick. In fact, it may have even boosted their immune systems. Most days, my lunch consisted of half-eaten PB and J crusts gleaned from the kids’ plates as they hurried away from the table. At that time, I finally got a diagnosis: Retinitis Pigmentosa. I began to have a few issues like tripping and bumping into things. One day, while running after my youngest son who was headed for the street, I fell into a hole and broke my ankle. It was also during these years that I lost my driver’s license due to vision loss. This put a huge cramp in my style and an extra burden on my husband. Gone were the days when I could just run up to the store for diapers and milk.

Birthday at the beach-happy and tanned!

Celebrating my birthday at the beach-1995

The school-aged years are remembered as “controlled chaos.” We were in the thick of raising our children while balancing our careers. It took team work and creativity to meet the demands of our busy household. The kids needed rides to baseball practice, ballet, and piano lessons. I needed rides everywhere; to the grocery store, haircut and doctor appointments, and to work. Transportation was the biggest challenge for our family. We were fortunate enough to have friends and neighbors who were supportive. I offered services like after-school care or baked muffins in exchange for rides for my family. It required careful orchestration, but we got where we needed to go and survived those busy years. As my vision deteriorated my children learned to pitch in and help. They learned to guide me and give me descriptive narration at ball games and movies.    

During the teenaged years, when aliens take over kids bodies, it’s difficult to have a visually impaired mother. Now adults, my children admit it was sometimes painful and embarrassing for them. One year on Mother’s Day, we went out to dinner at our favorite restaurant. We were escorted to the table and I began to sit down on what I thought was a bench and went crashing to the floor. I looked like a bug on the rug, my dress crumpled to my waist and arms and legs flailing. I began to laugh so hard that I could not get up. My three teenagers were mortified and asked to leave the restaurant. We stayed. For them, my vision loss was an aggravation and an inconvenience. They had to take turns driving me on errands, much to their chagrin. For me, it was becoming an all-consuming struggle to keep up at home and work. By now, reading print and mobility were my biggest issues and I needed to learn new ways of doing things. I needed to embrace technology and my earliest computer lessons came from my kids.

Before long, my sweet little babies were grown and off to college. Our house became empty and quiet. All too soon, the years flew by, leaving me with the echoes and trappings of child rearing. My role as a mother has changed from caregiver to counselor, confidante, cheerleader, and consultant. As I look back, I can honestly say I relished each phase of motherhood. My children and my husband made it easy for me to be a “good mother” and I have often joked that “they were so easy, they practically raised themselves.” Despite my anxieties and limitations as a visually impaired mom, my kids have said they feel they had a very “normal” childhood. And I can see many wonderful qualities in them which resulted from growing up with a visually impaired mother. Compassion, empathy, cooperation, advocacy, problem-solving skills, resourcefulness and patience are among them. My adult children are truly my favorite people in the whole world.

In truth, motherhood is hard work and it requires intentionality, resilience, and patience. Fortunately, we are naturally endowed with a certain measure of courage and grace to be mothers. The other necessary things, we find amidst the love and laughter of our children. Even vision loss cannot suppress the joys or dampen the pride of being a mother. My humble advice to other visually impaired mothers: don’t sweat the small stuff, keep it simple, live in the moment, and don’t aim for perfection because you will miss every time

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