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The intrepid: What it's like to be a blind parent

By Stephanie Booth, Real Simple
updated 2:12 PM EDT, Fri March 28, 2014
Mothers with vision problems can face a set of challenges that most moms don't.
Mothers with vision problems can face a set of challenges that most moms don't.
STORY HIGHLIGHTS
  • Parenting is hard enough; imagine trying to do it while blind
  • A Portland, Oregon, support group of blind moms met through their guide dogs
  • The mothers share tips on safety, communication and other unique challenges

(Real Simple) -- It's Saturday night at a vast indoor playground in downtown Portland, Oregon. Dozens of kids clamber through three stories of tunnels and slides while their parents sit at tables nearby. In a brightly painted room usually reserved for birthday parties, a mothers' group is meeting. For the next two hours, the four women in attendance will trade stories about their families. They'll talk about their kids, their homes, their husbands, their dogs -- but their dogs are here with them, under the table. All these moms are legally blind.

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A meeting of minds

One of the group's members is Tracy Boyd, 44, a mother of four (though she looks like a kid herself). Tracy was born with congenital glaucoma that worsened as she got older. In high school, she was still able to read large-print books. Now she can only detect blurred shapes and colors (say, whether a person is a blond or a brunet).

Last April, Tracy attended an alumni meeting set up by Guide Dogs for the Blind, the largest guide-dog school in the country, where her dog, Chiffon was trained. Tracy brought along Desmond, her then 5-month-old son. (Tracy's daughter, Alina, is 18, and her sons Colin and Tristan are 12 and 8.) "People at the meeting couldn't see Desmond, but they could hear him, so everyone wanted to hold him and know how I was doing," she remembers.

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One of those people was Kelsey Sparks, 24. Kelsey was born with a retinal disease. She can make out some shapes, but they're blurry, and she has no depth perception or peripheral vision. At the time of the meeting, Kelsey was five months pregnant with her first child. "I said to Tracy, 'I have so many questions. How can I be blind and take care of a kid? How am I going to carry a baby when I'm holding onto my guide dog?'" she says. "I had no idea how other moms did it."

Joy Ross, a blind mom of two at the meeting, nudged Tracy. "We should start a moms' group," Joy whispered. Tracy was thinking the same thing.

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Up for the challenges

Tracy had 18 years of parenting under her belt; she was an accidental expert in the difficulties facing blind moms. "If you see your baby crawling toward an electrical outlet, you pull him away. But what if you can't see him?" she says.

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Communication is a big issue. Tracy says, "I'm always wondering, 'Are my kids happy? Are they sad?' When you can't see their faces, you have to build a deeper dialogue. There's much more talking."

There's also more planning. Tracy and her husband, Preston (who is sighted, as are all the Boyd kids and the children of the other women in the group), keep furniture in front of all outlets as an extra safety measure, backing up the outlet covers already in place. Tracy memorizes the words to board books so she can read to Desmond. She buys only white socks, so matching is never an issue. To ensure that diaper rash doesn't go undetected and untreated, she applies lotion during every diaper change. She has a phone that reads texts aloud to her, enabling her to stay in frequent contact with her older kids, who all help out with the baby, locating and putting on his shoes, getting him into his car seat, pairing up his shirts and pants (which Tracy stores on outfit hangers, so they're ready when she needs them).

Joy had developed plenty of parenting strategies of her own: "I lay out rules when my girls have playdates: Don't put stuff in the walkways where I can trip. Don't leave your cups full of liquid or plates of food out. And please let me know if you're right in front of me."

Tracy used to worry that other parents wouldn't feel comfortable having their kids over to her house, but that has never been the case. "I might not be able to see what's going on, but I can hear the different sounds and know exactly what the kids are getting into," she says.

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A group is born

After the meeting of Guide Dogs for the Blind alums, Tracy traded contact information with Kelsey (who had to head home) and invited Joy and her friend Rhonda Patrick to grab a bite. It was a Friday evening. The restaurant was packed, the music blaring. "There we were, three blind women who could barely hear each other," says Rhonda, 44. The waitress had to step over their dogs, who couldn't all fit under the table. For hours the women traded personal stories. "It was so much fun," says Joy, 36. "We had this instant connection -- a feeling of 'You know exactly what my life is like.'"

Joy and Rhonda had traveled to the GDB meeting together on mass transit. They had become friends a couple of years earlier, when Joy's husband had noticed Rhonda and her service dog walking in their townhouse complex. Rhonda wasn't born blind. When she was in her teens, she was diagnosed with a degenerative retinal disease. "It wasn't physically painful, but my sight went away in stages, and that was scary," she remembers. "I'd be fine one day, then the next I'd be falling down a flight of stairs." She didn't become legally blind until her 20s, after she had graduated from college with a business degree and begun working at an insurance company.

Joy had a similar history, which made the women fast friends. As a child, she was diagnosed with juvenile rheumatoid arthritis, which causes painful inflammation of the joints, as well as uveitis, which causes severe inflammation in the eyes. Joy became blind in her right eye and had limited vision in her left. Then, five years ago, she was hit with a devastating trifecta: Her older daughter, now 11, had inherited her rheumatoid arthritis. Her younger girl, 8, was diagnosed with uveitis. And Joy, whose remaining vision had been steadily worsening, lost all sight in her left eye.

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"I had so much grief," says Joy. "I was used to being independent. Now what was I going to do? How was I going to take care of my kids? Because of my daughters' diagnoses, I had to be brave. I had my family and my faith, but I had no community of people who knew what I was going through."

Getting her yellow Lab, Antonia, from GDB in 2009 was a turning point for Joy. After she lost her vision but before she got a dog, she used a cane and jokingly referred to her kids as her "guide daughters." But, Joy says, "I didn't want them to feel like they were the mommy." Once Antonia arrived, they no longer did.

Joy even began shopping at the mall near her home by herself. (She relies on her sense of touch and on descriptions from sales-people.) "My girls trust Toni to safely get me around. They can just be kids again," says Joy. "And that's a huge deal to me."

Woman's best friend

Tracy, Rhonda, Joy and Kelsey all agree that the lives they live now would not be possible without their dogs. They say that these intelligent animals allow them to be exponentially faster and nimbler than a cane would. "You can't go into a public restroom and say, 'Cane, find me a changing table!'" says Tracy. Chiffon guides Tracy to the bus stop near her home so that she can get to her customer-relations job at an auto dealership. If one of Tracy's sons forgets his lunch, Chiffon not only directs her to the school cafeteria but even finds Colin in a crowd of middle schoolers.

Rhonda recounts teaching her dog to take her from the bus stop to a new gym in a strip mall. "There's a row of storefronts, and Dempsey knows exactly which one it is," she marvels. Kelsey's dog, Louanne, can sense when Kelsey's asthma is acting up and slows her pace accordingly.

Ironically, none of the women started out as dog lovers. "I generally don't even like dogs," admits Tracy. But, Rhonda says, these dogs "are our foundation. We're entrusting not just our own lives to them but our children's lives, too."

According to GDB, a service dog typically finishes training at age 2 and works for seven years, so the intense relationship between dog and owner comes with inevitable heartbreak. When Rhonda's first dog developed melanoma and had to be put down, Rhonda was so distraught that she threw up in the bushes after the procedure. "It still brings tears to my eyes," she says. After her second dog retired, in 2011, Rhonda brought home Dempsey. "It's like having kids," she muses. "You can't imagine loving another one as much as your first. But you do."

Strategies and camaraderie

A week after the impromptu dinner at that noisy brewery, a string of regular get-togethers began. The women dubbed their group Mommies With Guides. Now they gather at play spaces and at their homes (they all live within 45 minutes of one another), and when they're not together, the phone calls, texts, and e-mails fly among them.

The kids spend time together when their moms meet. Although they range in age from 17 months to 18 years, they've formed a tight bond. "They know that their moms have this strong connection," says Joy. "And, like us, they understand what the others live with every day."

Joy is the most vocal about her condition; she and her family have traveled to Washington, D.C., on behalf of the Arthritis Foundation to lobby Congress to increase funding for JRA research. Joy is also active in raising awareness in Portland. She has spoken at her daughters' school, where she has even demonstrated how she removes her prosthetic eyes. "The kids love it," she says. (Joy still has her natural eyes, but they're small, a result of deterioration caused by the arthritis. She wears prosthetic eyes for cosmetic reasons.)

With her friends, Joy talks about everyday life and bigger issues. She wants to ensure, for example, that she's contributing enough to her family. "I take care of our home and the girls, but George [her husband, who is sighted] has to run all the errands and do the grocery shopping," she explains. "We have a great marriage, but I don't want him to feel as if he's doing everything."

Like all pals, this group commiserates and helps problem-solve. Tracy has tips galore for Kelsey. (How can Kelsey know if her baby, Khloe, has awakened from a nap if she doesn't cry? Put bells on her booties.) Joy truly understands the bout of nearly unbearable eye pain that Tracy endured at one point. And all the women have been supportive of Rhonda, who divorced last year and is adjusting to life as a single mom. "When I feel old and haggard, Joy tells me I'm beautiful," says Rhonda. "I know she can't see me, but there's a sweetness to it that I appreciate. And, likewise, I feel these women are the most beautiful people I've ever met."The more time the friends spend together, "the more we're in awe of each other," says Joy. "It's like each of us has mastered a skill or has a bravery that the others don't."

A safe zone for venting

Because they lack sight in a world that relies heavily upon it, the women's blindness doesn't just affect them. They all have loved ones -- partners, parents, siblings, and children—who help them navigate everyday life. "We're high-maintenance by necessity. We know that," says Tracy. "Our families are extremely patient with us." As you can imagine, this means that complaining to their spouses and kids can feel uncomfortable. Not so to one another. They all groan sympathetically when Tracy tells how she put a cup of coffee down on her kitchen counter, then had to hunt for it for an hour and a half because a family member had accidentally moved it. "I hate that!" says Joy. They wish that strangers wouldn't pet their service dogs without asking, since it inadvertently distracts them. They can't even keep track of the number of times that they've been asked if they do their own hair and makeup. ("Yes, and I pick out my own clothes, too," says Joy.) It's frustrating when family members or coworkers enter a room without announcing themselves. "The other day, I was yelling to my daughter that she's going to be late for school and needs to come downstairs for breakfast, only to find out she was already sitting at the table, 10 feet away," recalls Joy.

"These things may seem trivial to sighted people, but not to us," says Tracy. That said, the friends have a sense of humor about their lack of sight. Joy enjoys sharing the news that she and her husband met...on a blind date. (Ba-dum-bum.)

As Rhonda says, "I can get sympathy from sighted people, but Tracy, Joy, and Kelsey are the only ones who can give me empathy. When I say to them, 'I wish I could see my son's face,' they know exactly what I mean."

Ripple effect

These four mothers have found such comfort with their small group that they want to expand Mommies With Guides, maybe even to a national level. "Some people think [a blind person] can't have a baby," says Joy. "That's a stereotype I want to break. It's really about the person you are, not the disability you have."

Plans to send the good vibes and the sense of connectivity out to others are already in the works. Thanks to Tracy's husband, Preston, who is an artist, there's even a potential logo.

At the indoor playground, while the kids romp, Preston enters the room where Tracy, Joy, Kelsey, and Rhonda are chatting. He passes around an image that he's created using 3-D paint on a pane of glass. Each woman takes turns tracing the lines of the picture while Preston talks them through it. "It's a mom with a ponytail swinging behind, walking quickly," he explains. "She's holding a service dog by its harness and has a baby in a carrier on her back. Behind them is her little boy holding his sister's hand. She's clutching her doll as they hurry to keep up."

The friends smile and unanimously approve.

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