Finding Her Own Way as a Mom Without Vision: Meet May
May Hughes of Sparks, Nevada, remembers the last time she saw her baby girl’s face before losing her vision – Lara was just 11 months old.
“I remember thinking, what am I going to do? I have a baby. How am I going to take care of her?” May said.
Diabetic since birth, May knew it was risky to carry a pregnancy at age 34. She had already lost one baby and knew she could lose this one too. When Lara was delivered via c-section in 2013, she was just 7 months old and went straight to the neonatal intensive care unit (NICU). At the same time, May’s kidneys began failing.
“While they were getting ready to discharge Lara from the NICU, I was at the dialysis center trying to survive while also trying to welcome my baby home,” May said.
Each time May had dialysis, she would complain that her eyes were in pain. She said she had to shout and stop the process because her eyes hurt so badly. No one knew what could be causing the pain, so she continued. When she went to see her doctor, he said her eyes were bleeding. Her mom came to visit from the Philippines, and three days later, May was having dialysis when her blood pressure suddenly dropped. They laid her head down and when she got up, she could no longer see anything.
“Suddenly I was walking in the dark and didn’t know where to start,” May said. “I was glad I had my husband and mom to help, but I was so down and depressed. I had a nice job, a nice house, I could go everywhere I wanted, and then all of a sudden – bam – freedom removed. I just wanted to disappear. The blindness services I needed at that time were nowhere to be found in Nevada, so I felt like the only blind person here. I stopped visiting with people and just sat in the corner of our bedroom.”
When Lara was 1 ½ years old, May had a kidney transplant and was able to stop dialysis, but could not risk infection and had low energy, so she stayed home for a year. One day, her daughter started walking toward her, and everything changed.
“I realized, my God, she’s growing up and I want to be there for her,” May said. “I wanted to change my life, and I knew I couldn’t expect anyone to change it for me. I had to start within myself.”
May began researching again for services and still could not find anything. Eventually she found a program in Las Vegas – more than 400 miles and seven hours away. She had nowhere to stay, but she was determined to learn what she needed to be the best mom she could be, so she enrolled in the basic training in 2019 beginning with orientation and mobility.
“I learned a lot about blindness there,” May said. “It’s not the end of my life, and I can still be a mom and wife. I can still do things that other sighted people do. For me, this is normal now. Acceptance is key, and when there’s acceptance, there’s a clear answer about what to do with your life.”
She began attending group sessions and enrolled herself in rehabilitation services. But she wanted to learn more, and the only option she knew of was a school in Colorado where she would need to be away from her husband and daughter for nine months. That was not an option.
She asked her counselor to help her find somewhere where she could learn additional blindness skills while still caring for her daughter. Fortunately, the state of Nevada had just signed a contract with Society for the Blind that year. This spring, May began Assistive Technology classes, learning how to use Microsoft Outlook and Word.
“I just love my instructor at Society for the Blind, and I really appreciate that this organization exists,” May said. “They are staffed with certified and qualified people whose positivity resonates with me even if we’re just talking on the phone. Covid was a blessing in disguise because they created their remote learning programs, so I do not have to leave my daughter to continue learning.”
One of May’s biggest fears when she lost her vision was that she would not be able to bond with Lara because she could not participate in her activities. Now, May is especially proud of how she has learned to be an involved mother of her now 8-year-old daughter. She homeschools Lara and is a leader for her Girl Scout troop. She even took Lara roller skating recently after working with her instructor to familiarize herself with the rink before the event.
Lara has often encouraged her mom to stay active in her life. A few years ago, a neighbor had a birthday party, so Lara went, but May stayed home. Lara came home and asked her to come. When May said she could not go because she was blind, Lara said, “That’s okay, you can still talk to the other moms.”
“I get to do regular mom things now,” May said. “The only difference is I can’t see. But I can feel, hear and converse. It’s just a matter of parenting style. I use a lot of verbal communication, and I see with my other senses. I have my own way of being a mom.”
May eventually wants to go back into the workforce. Though she was previously employed as a nurse, she now wants to teach people who are visually impaired or answer medical questions over the phone.
“If I have to go back on this road again in my next lifetime, I would not hesitate to come back,” May said. “I’ve learned a lot and I’ve changed as a person. It is a very humbling experience. I don’t need a pair of eyes to be a wife, mother or friend. I can be the person who I want to be and do what I want to do. I am the guardian of my own happiness.”