Starting a family can be one of the greatest adventures in life. You imagine your baby crawling and cooing and dream about her growing up and one day living on her own. These visions fill your heart with delight as you begin the path to parenthood.

But what happens when the family portrait you picture includes a child with a disability? How do you proceed from the day pre-natal tests show your baby is developing in a different way? Or perhaps after your baby is born, you notice that he is not reaching developmental milestones. Where do you go from there?

When children with special needs are born, families develop a bounty of love and patience and often learn life’s most important lessons. This month, three extra-special Tidewater mothers tell their stories.

ONE DAY AT A TIME

Robin and Scott Mayo live in a modest, comfortable house in the Chimney Hill neighborhood in Virginia Beach. Baby toys and several pastel-colored infant seats encircle the living room. It’s nearly ten in the morning and their son, Nathan, is in kindergarten. Soon their two-year-old daughter Kaylyn will wake up for one of her four daily feedings, delivered through a g-tube—a gastric feeding tube—since she doesn’t take her meals orally. Scott, executive pastor with Harvest Outreach Church, handles this morning’s feeding while Robin chats with a visitor.

Robin and Scott met at a Christian college in Franklin Springs, Georgia. After ten years of marriage, the couple had their first child, Nathan. Robin prayed that her maternal instincts would kick in, and they did as she learned to parent the “beautiful, little five-pound boy who took over our world,” as Robin described her son.

The couple planned to have another baby within two years. Sadly, it wasn’t meant to be. Their daughter Naomi was stillborn. The Mayos’ church community embraced the family and helped them grieve. Before long Robin was pregnant with another daughter.

“When I was at 20 weeks, we went for the ultra sound,” Robin said. “I could tell by the technician’s tone that something wasn’t quite right. Then I asked her ‘Is everything okay?’ And the technician said, ‘Honestly, I’m concerned.’” That afternoon, the couple went to Children’s Hospital of the King’s Daughters, where they learned that their daughter had a number of chromosomal issues.

After more genetic testing, knowing that the baby was growing very slowly, the couple were told that their daughter had Wolf-Hirschhorn syndrome, a rare chromosomal condition, which would probably result in her having a very unusual look. In addition, she could be deaf and have mental retardation.

“We knew from the start that no matter what they found about our baby, we would proceed with the pregnancy,” said Robin. “We didn’t research Wolf-Hirschhorn because we didn’t want to create images in our minds about what would come to be.”

When Kaylyn was born, weighing 4 pounds 11 ounces, she could not breathe on her own. She was tube fed and remained at the hospital for six weeks. The geneticists told the couple that Kaylyn’s condition was a result of a “chromosomal rearrangement,” but since very little research had been done, there was no prediction about her future.

Robin and Scott parent with day-by-day love and commitment. “We don’t sit around waiting for this to happen or not to happen,” Robin explained.

Kaylyn had some breathing issues, which have begun to ease, and her hearing and vision tests have been hopeful. She receives regular visits at home from physical and occupational therapists. She’s still not able to eat and swallow. She makes unusual shapes with her hands, sometimes flashing a peace sign with two fingers. Her curly brown hair and dark eyes draw in visitors and friends. She appears as a wise baby who knows more than she lets on. According to Robin, Kaylyn is as strong as an ox and can be ornery if she wants to be.

Nathan, whom Robin describes as slightly shy but beginning to “venture out to make friends in the neighborhood,” brought a flock of children to the house last week to meet his sister. Robin says that Kaylyn lights up whenever Nathan is near her.

Parenting a child with potentially life threatening medical issues can be very difficult. But when Robin’s mother, an ob/gyn nurse, asked Robin if she were scared, Robin said no.

“Bottom line: Kaylyn’s life may involve a lot of dramatic episodes, and I won’t be any good if I fall apart,” said Robin, who credits the couple’s strong faith with helping them meet the challenges of parenting Kaylyn. “God has truly given us a supernatural grace and strength that we couldn’t have mustered on our own.”

Robin says that from the beginning, she made up her mind to be optimistic, believing that she and Scott and Nathan could get through this challenge. And yet, even with a strong faith, she remembers a mixture of feelings.

“You are told that you may have a baby that other people may look at as a freak,” she said. “But when you meet Kaylyn, she’s beautiful, she’s angelic, and she is sweet, and you feel guilty for ever feeling that way.”

“Scott said recently that Kaylyn is our teacher and we have become her students,” Robin said. “She teaches us patience, unconditional love, not to worry about the future, and to take it one day at a time.”

LIVING WITH WHAT IS

Staying in the present is the best lesson Tanya and David Cuffee have learned from their three-year-old son, Jordan Daniel. He’s a gentle, fair-haired boy, tall and very affectionate. His German grandmother, Petra, calls him her “little snowflake.” Jordan arrived in the midst of the couple’s busy lives when Tanya worked as a personal trainer and David played music with a reggae band.

“David and I were kind of on the fence about having children at first. We left it up to God,” said Tanya in her kitchen, making a batch of chai tea. “When we learned we were going to have a boy, we were filled with joy and excitement and knew it was going to be a life-changing experience.”

Jordan was born in 2006 just after Christmas. He was a sweet, docile baby. Tanya noticed that his development seemed slow compared to other babies born around the same time, but she and David thought everything would work out. Tanya admits a certain naiveté, recalling when she threw away her baby books and tried to stop comparing.

“Our pediatrician at the time told us that if Jordan wasn’t able to hold his head in neutral by six months, we should go for some diagnostic testing,” she said. When Jordan didn’t reach this milestone, the couple met with specialists, geneticists, and neurologists. It was a very challenging time. When Jordan was two, they learned he had cerebral palsy.

No matter, love was the true medicine, and the Cuffees had a surplus. Family members and friends were completely loving and accepting, as Tanya and David learned to be patient and extremely happy with their boy exactly as he is. Jordan eventually started receiving therapy visits at home and now attends preschool at Corporate Landing Elementary in Virginia Beach, where he has a walker and goes “zipping down the hallway,” according to Tanya. At home, he’s not quite walking, but he is climbing, and like all preschool children, he tests his parents.

“He says ‘Yeah’ and ‘No,’” David said and then chuckled. “He definitely knows how to say ‘No.’ He goes for the challenge.”

The Cuffees have been supported by state and federal programs, which allowed them to move to a single-story house, where Jordan has an easier time getting around, and provides insurance and a stipend for a part-time caregiver. Tanya now works as a nutritional counselor and personal trainer for a small company called Metabolic Bliss, while David, known in the reggae music community as “Young Lion,” continues to make music with “Nature’s Child” and builds drums.

“Jordan has a lovely spirit, and David reminds me that life is all about what is and to embrace that,” said Tanya. She and David shared a hug, their eyes brimming with tears.

“We’ve learned that our job is to be present to his needs and learn to share the time we have together,” she added. “You can’t let your mind wander to when and if; it’s just now.”

Like most moms, Tanya has learned to put the needs of her family first, but she feels rooted, healthy, and happy in her vegetarian kitchen, where the scent of cinnamon, cloves, and black tea fills the air. Now that Jordan has grown a little older, there’s more time for her to attend to her spiritual self.

“The goal is for me to go to yoga at least twice a month,” she said. Tanya and David also take time for date nights to refresh their relationship, something that benefits all couples with or without a child with a disability.

A NEW DESTINATION

After a child with special needs gets beyond the toddler stage, parents face more challenges and opportunities as they try to meet their maturing children’s needs. That’s certainly the case with Amber Pittman-Hester and her daughter, Austen, 15. Amber is an art teacher at John B. Dey Elementary School, and Austen is a student at Great Bridge High School. Like many teen girls, she attends camp and goes on overnight sleepovers.

Unlike her peers, however, Austen has Turner’s syndrome, another chromosomal disorder, discovered when she was eight years old. She takes shots of growth hormone, estrogen, and progesterone, has no ovaries, and a number of physical limitations. Born two weeks premature, she was very small and had hip dysplasia, requiring her to wear a brace for a while. In her toddler years, she had many seizures. Like Tanya, Amber sought answers for her daughter’s developmental delays, and because Amber is surrounded by educators, she had resources. She knew that early intervention would help her daughter.

“I had her in preschool at two with a Head Start Program,” said Amber, who received little support from Austen’s father, now deceased. For some families with special needs children, one parent is often better at coping while the other may become uninvolved or distanced.

Amber remarried and has a six-year-old daughter, Taylor, with her husband David, who has two teenage daughters from a previous marriage. Step parenting is delicate enough, but very challenging with a special-needs teen.

“David works in the medical field, where everything is black and white,” Amber explained. “With a special needs child, you make a lot of adaptations and accommodations, and you have to let a lot of things go.”

Being a teacher has helped Amber immensely with her parenting. Both at school and at home, being organized and creating structure is so important. “How I deal with my children at school helps at home,” she said, “and I constantly have to step away and learn lessons all over again.”

For the last seven years, Amber has been active with the Chesapeake Special Olympics, serving as a co-coordinator and board member. The organization made a huge impact on their lives. Suddenly, Austen had more peers, and Amber forged relationships with parents of kids with all kinds of abilities and challenges.

“I’ve learned so much from parents in Special Olympics, and I can always ask them ‘How do you deal with this?’” Amber said. “As an optimist, I always believe in making lemons from lemonade. I don’t dwell in the negative, I don’t hate the world, and I just say ‘Hey, this is how it is, and what are we going to do?’”

Amber says that all parents of special needs children need to remember they are their child’s best advocate. “You have to research what is available and connect, and remember that no one knows your child better than you do,” she said.

An organization called PEATC—Parent Education Advocacy Training Center—helps parents of special needs children in Virginia create positive outcomes and connections with schools, organizations, and communities. PEATC’s director Kathy Healy, mother of a 24-year-old son with Down syndrome, admits that raising a child with a disability is “a tough slog, no question about it.” She advises all parents to reach out as early as possible to other families whose children are in similar life circumstances.

“The birth of a child with a disability can be a traumatic event in a family, and though friends and family can be extremely helpful, they may not understand exactly what you are experiencing,” she explained.

“In our culture, people expect you to get over it, get on with it, whatever stress you have in your life. But life with a special needs child is not a train station. Every day is a new destination,” Kathy said. “Our organization hopes that by building up parents, they can stay positive and fall in love with their children all over again every day.”

And that’s what Robin Mayo, Tanya Cuffee, and Amber Pittman-Hester do. They’re regular women given extraordinary challenges they didn’t feel prepared to meet. Yet they have discovered they possess an abundance of strength, patience, and most of all, love and gratitude for their special children—just as they are.

For more information, see www.peatc.org.

Kathleen Fogarty is a regular contributor to Tidewater Women. She lives on a farm in Virginia Beach with her husband, John.