Guilt, burden, motivation: a blind lady faces the robust questions of parenthood and marriage

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“Do you feel guilty about having children even though you are blind?”

That wasn’t the first question from a blind adult audience during a Zoom talk I recently gave. But it was one of the most cordial ones I’ve answered in 50 years. I had started telling them my story of blindness and their questions popped up. Well-known questions like the advantages and disadvantages of a guide dog versus a walking stick. My answers slipped out easily, automatically.

But within 15 minutes, one question changed everything – to hit the deepest and most sincere worries.

“I’m 38 years old, so my biological clock is ticking.” She hesitated. “I want to ask something, but I’m afraid I’ll hurt your feelings.”

I imagined each participant leaning forward.

“Please continue.”

“Well, do you ever feel guilty about having children? Did you fear that you might go blind? Also, you couldn’t drive her to places or do many of the things a sighted mother could do. Do you feel that your children have been disadvantaged? “

I first asked her a question myself before answering, and learned that this woman was born blind due to a health condition inherited from a parent. She worried that she too could pass this problem on to a baby.

“No one has ever found the source of the retinal hemorrhage that caused my blindness,” I began, “even though I went to see medical experts in three corners of the country. My deafness is also a mystery. ”I paused. “My husband and I wanted children. So we asked specialists whether we should get them organically or adopt them. The ophthalmologist who was closest to my case said, “Nobody ever told me what happened to you, Sally. We all have genetic defects. Don’t put up another loss. ‘”

Sally Hobart Alexander is sitting with her guide dog Dave in July 2020. (Photo by Ryan Loew / PublicSource)

I continued, “Following this advice, I gave birth to our son a year later, but you can bet my first question was, ‘What are his eyes like?’ If he or our disability had improved my upbringing. Blindness made me a better listener; my ears were my feelers, so I hung on to the words of my children. ”Daughter, who arrived three years later, was born blind, I would definitely have felt guilty. If you ever develop vision loss, I will be sad. But my husband and I gave them life and they are grateful. “

In response to the woman’s second concern, I said, “Sure, I couldn’t drive her, although my brother claims that I could drive as well now as with eyesight.”

Some giggle.

“But I took them on buses and walked many places with them. My children often taught their friends the skills of local public transport, for example by taking the bus to a pirates game. “

Then I explained that I took care of the small motor activities, art projects, music, and baking while my husband oversaw the big motor activities like cycling. I was also lucky enough to be able to afford babysitters and use their help creatively – by hiring them to take me and the kids to playgrounds.

I added, “Disability has improved my upbringing. Blindness made me a better listener; my ears were my feelers, so I hung on to my children’s words. Touch was a lifeline too, so I held it and had much more physical contact with it than if I had been spotted. Blindness also influenced my discipline. “

Then I told this story: “I swore I would not hit as a parent, but when my son and a friend had a pillow fight and broke my Hopi pot, I was swinging. The ground I collided with, however, was his friend’s, not his. And my knock fell next to the open front door, which the boy’s mother opened. ”

Now everyone was laughing.

“Fortunately, she had a good sense of humor and didn’t report me to the youth welfare office.” So, did I feel guilty? I said to her and the others, “I think all parents feel guilty. Every area of ​​child rearing offers immaculate opportunities for our children to seize. But do I feel guilty for having them blind? No. I think we all with disabilities bring gifts to our children that we would not have without them. “

“Disability has improved my upbringing. Blindness made me a better listener; my ears were my feelers, so I hung on to the words of my children. “

“Interesting,” said the woman. “One more thing – I’ve been living with my boyfriend for four years and he is worried. Has your husband ever found you a burden? “

Uff! I took a deep breath. I picked up my husband and had the wife repeat the question.

“No,” said Bob immediately, like a dutiful husband.

“He didn’t say that directly anyway,” I said, “but sometimes he forgets to push a chair back under our dining table and I slam into it. … And I accuse him of passive aggression. “

Bob laughed. “Seriously, Sally cooks everything, so I do all of the dishes.”

He moved his chair closer to me. “And we talk – all the time – to find the balance.”

I interrupted. “I think Bob does more than 50% of the duties in this marriage. I am the debtor. But a friend said to him when we were engaged: ‘Just don’t have any children because you have to take care of all the children.’ “

Bob cut him off. “But then the balance was distorted in Sally’s direction.” He spoke of the times I took charge of the kids as he advanced his career, how I quit my teenage therapist job to stay home. Basically, it’s about talking. Bob said to the audience, “I didn’t marry Sally 47 years ago to be her reader. I have my job. She did her writing and teaching. A burden? Ball and chain? Never.”

People laughed and hooted. Then someone else cleared his throat on the microphone. I braced myself for another haunting question.

“How did you go on?” he asked. “How are you doing?”

My throat swelled up and I couldn’t speak for a minute. Many of the people in this audience were like me 50 years ago – before a major life change, a change in status, identity, career, and relationships. They struggled to put one foot in front of the other.

“At first, the timing of my blindness was good. I was 26 years old, had college behind me, three years of teaching, and my ego was reasonably intact. I had lived 3,000 miles away from my family so I had got used to new surroundings, made friends, found a life. I also had great and supportive friends – one who came to the LA hospital every day, one who came to the New York hospital every night – and I was often in the hospital for three weeks at a time. I had a supportive family. Besides, two thirds of my life lay ahead of me. I felt compelled to adjust. And I had the elasticity of youth. Family and friends didn’t expect anything other than that I would adapt. And frankly, there were plenty of government-funded programs – four months of government-funded rehab, government grants to graduate school that paid for the university, and my rent and food. After all, Pittsburgh is a convenient city with public transportation and diversity. All of this helped me to find my way forward. “

I swallowed. “And how do I go on now? This is a statement I’ve made so many times, but it’s true nonetheless. Blindness made my life bigger. It made me stronger, more hardworking, more disciplined, more organized, more empathetic, more confident and more determined. Blindness sometimes exhausts me. But having children and grandchildren, a great husband, siblings and great friends – I enjoy all of that. Humor helps, and I’ve come to know so many good things in an often cruel world. I want to go ahead and share this goodness. “

Sally Hobart Alexander is the author of numerous articles and eight books. Six books were selected by the Junior Library Guild, and one, “Taking Hold: My Journey into Blindness,” won a Christopher Medal. After teaching in Chatham’s MFA program, she now leads a writing group accompanied by her guide dog (Instagram: @davetheguidedog). If you’d like to message Sally, send an email to firstperson@publicsource.org.

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