A child shall lead them: spiritual lessons from parents of kids with disabilities.

Like other little girl her any age, Julia loves going to kindergarten, where she enjoys story time, learning new words, and working on her papers. Looking at Julia, most people see a tall, shy 6-year-old who has some physical and speech delays. She has occasional tantrums, but few know they are caused by frustration with her inability to communicate.

Just before her third birthday Julia was diagnosed with Sanfilippo Syndrome, Type A, an inherited neurodegenerative disorder with no cure or treatment. Becca Dopheide, Julia's mother, doesn't know how long school--or even language--will be part of her life, but she calls these miracles in their journey.

Dopheide knows Julia's normal development is being replaced by increasing symptoms of hyperactivity, sleep disorders, loss of speech, mental retardation, and dementia. Most children with the disorder die between 10 and 15 years of age.

Today, however, Dopheide talks about how Julia is going to school and the new words she uses with friends and family. "I don't know what is going to happen at dinner tonight, let alone in five years;' says Dopheide from her home in Omaha. "If I grieve and worry about what's going to happen, I miss out on today."

Her choice to focus on the present may have begun as a coping mechanism but it has become a gift. It is one of the many spiritual lessons learned by parents whose children face incredible obstacles, pain, am odds. The lessons they glean from living and loving in spite of adversity have had a ripple effect in their relationships.

Whether we intend it or not, we are touched by these families. There is often pity for what they must endure, and gratitude that it isn't happening to us. We take special note of people who transcend obstacles and live full lives.

This is not to romanticize or glamorize disabilities. Most of these parents have learned their spiritual lessons after walking through a daily barrage of embarrassment, exhaustion, fear, and solitude, not to mention the anguish associated with having to watch their child struggle and suffer.

Focusing on the present is only one of these lessons, but it involves more than living without worry. Dopheide says she lives each day as if it were her last "not because it could really be my last, but because I'm not waiting to live." Many people put off doing things, Dopheide says, because the time isn't right. They wait until they have a bigger house, more money, or their children are grown. For a family with a special-needs child the reality is that tomorrow will probably not be much different from today, so why wait?

Doing it now begins within the family. These parents must carve out time for each other. They know that if they don't, the added physical and emotional stress of caring for a child with disabilities can accelerate fissures in their relationship.

"My spiritual journey didn't really begin until I had Caitlin. I just went through the motions until I had to question everything,' says Carolyn Quinonez, the mother of two special-needs children. They live in the Washington, D.C. area.

Quinonez and her husband, Louie, have four children. He is a federal special agent. She is the author of Bless My Special Child: Prayers and Insights for Parents (Liguori). Their second and third children both have disabilities. Caitlin, the older of the two, has an unspecified genetic disorder that involves cerebral palsy, autism, and moderate to severe retardation.

No matter how taxing the week has been for either of them, their date night is necessary. Conversation can turn to philosophical topics, but most dates are simply an opportunity to reconnect and enjoy each other's company outside their roles as parents and caregivers.

Initially the cost of childcare was a sacrifice, but they realized they couldn't afford to wait on nurturing their intimacy. "We may have a child living with us for the rest of our lives" Quinonez says. "You have to find ways to have intimacy and couple time on an ongoing basis. It's a make-or-break situation."

Spending time as a family is also important. A sledding accident nearly killed Kelly Connolly's daughter Chelsea and left another daughter, Rachel, with permanent paralysis. The Omaha family of six connects daily now. Their schedules can prevent them from sharing dinner. Still, they gather nightly on their parents' bed to talk about the day. Telephone calls at bedtime are picked up by the answering machine.

"It's generally a happy time. There's laughter, tears-everything," Connolly says. "I used to think it was important to have a clean house, but time matters with the kids? This connecting time sends the message that each family member is important and valued.

It also renews and refreshes, which is vital for handling daily challenges. Dopheide refers to Julia's declining health and ultimate death as the "big gray elephant" that sits in the family's living room. They ignore it. They live around it. When they stumble into it, they lean on the promises of their faith to keep going. Dopheide's mother taught her to leave her worries at the foot of the cross. When Julia's sisters ask about her struggles in life and death, Dopheide relays a similar message--"Give your cares to God and trust him?'

Dopheide believes every life was created for a purpose that can be as simple as "passing love around" Trusting that "all things work to the good of those who love God" allows her to live without the worry.

"It is such a comfort to know that prayer will guide you in your choices;' Dopheide says. "It's such a safe feeling to know that if you trust the Lord, he's going to take care of you. I feel like his hand is in everything, but I don't feel that God cast this disease on Julia. Why she has it is a good question for when I get to heaven."

Knowing the "why" doesn't change the reality, anyway. These parents have had to face their limitations in being able to "fix" problems. Self-help gurus and humanity's quest to master the universe propagate the belief that we can fix anything with just the right knowledge, tool, or specialist. Sometimes, however, things are beyond our control. Comfort comes from trusting in God's provision and mercy.

Not being able to fix their children's challenges also leaves these parents open to the opinions and judgments of others--ones based on expectations for certain "normal" behaviors and outcomes. But with a special-needs child, parents must keep the judgments of others from penetrating their psyches and shaping their thoughts.

Calling someone or something "normal" makes people feel accepted. It is a label to put on all our expectations and controls, says Quinonez. Instead, parents should "strive to be the best [they and their children] can be, whatever that is, and who is the judge?"

Still, expectations permeate society. Studies tell us when children should sit up, walk, and talk. Formal schooling begins at 5 or 6 with reading and math. Parents experience stress if their children stray from these expectations. Children, however, have their own timetable for meeting developmental markers. Parents of special-needs children know their children won't follow the expected timetable. For some, reaching a milestone is beyond their ability completely.

"We are continually going through the six stages of grief because we face it again at every missed milestones," says Quinonez. These little deaths are a reminder that parents want their children to succeed and that all parents, whether they admit it or not, have dreams for their children.

From the moment parents learn about a pregnancy there is anticipation and hope. Lives fill with dreams of what will be. Expectations grow with the child as interests develop and aptitudes are honed. But every child is an individual and has the opportunity to realize his or her gifts and talents in unique ways. Some will disappoint. "The child that you thought would be a music major can come home saying he's joined the military," says Louie Quinonez.

In the case of the special-needs child, the reality is that their disability or disease can prevent them from even contemplating these expectations. Parents are forced to release these hopes and dreams. Holding onto these expectations takes them out of the present and places them on a path of pain.

Even children without mental disabilities look to their parents for guidance as they mature and develop their strengths and interests. But parental expectations can stifle growth, preventing some from reaching their potential. Carolyn Quinonez acknowledges it is a fine line. She and Louie try to encourage John, 13, and Cassie, 6, to pursue areas in line with their strengths and interests. Love is the difference between no expectation and healthy expectations of behavior and achievement.

"Look at the teenage years. I think kids appreciate love more and remember love the most when they haven't been perfect," Quinonez says. "I think that's where most parents miss an opportunity. We think of disciplining first and not loving first. They will remember the love. They won't necessarily remember the punishment."

Louise Ramey of Waukesha, Wisconsin discovered her latent expectations when her son Alex was diagnosed with autism. "I was crying when I told my husband that Alex would probably never go to college;' she says. "That's when my husband said, 'Does he have to go to college to be happy? Isn't his being happy the most important thing?' That's when I realized that was my dream for him."

Through prayer and accepting his diagnosis, she has begun dreaming different dreams for her children."[Now] I don't view success as our world does--by financial success and things you have. I just want my kids to have the best souls. That's the best we can hope for them," she says.

It is hard to measure the value of a good soul, but society has taught us to measure the worth of all people. Of the personal information exchanged when people first meet, occupation and level of achievement are high on the list. It would be absurd to say "I simply exist" or I give and receive love." Yet children with severe disabilities touch the lives of others in this way.

Jo McGowan is the mother of three. She and her husband, Ravi, who live in India, adopted Moy Moy, their youngest, when she was 2 years old. Her profound disabilities and mental retardation led McGowan to open a school for special-needs children and to educate the public about disabilities through her writing and speaking.

"I have had to learn how to value a life that has no apparent purpose;' she says. "This is extremely difficult given the world we live in, which values ambition and achievement."

Almost universally and regardless of handicap, these parents say their children embody lessons of love and offer insights into the human spirit. Caring for the needs of these children can be a thankless job, but lessons are learned there, too. Some are incapable of acknowledging their caregivers. Caring for Caitlin Quinonez, who at 10 has just begun initiating hugs, has been difficult. As her primary caregiver, Quinonez says she has gained insight into God's unwavering love and care for us.

She has also seen how special-needs children draw the best from others. People learn how good it feels to give love to another without strings attached. They learn compassion and patience. Love is given and received freely. There are not defined rules of how it should look.

"Caitlin is the only person on this earth who can give her siblings unconditional love. I would love to say that as a mother I love unconditionally, but if I am honest, I don't know if I can be," Quinonez says. "But Caitlin can. She has no expectations, no control issues, no need for it to he returned. She just does, and it inspires me to get there."

Living fully means feeling life's pain but moving on to celebrate its joy. "We don't live in misery, in spite of the extra work and how frustrating it can be," says Louie Quinonez. Accepting his daughter's--and later his son's--disabilities was difficult. He says he struggled with why this could happen. He wrestled with the idea that he caused their suffering because of his failures. No answer seemed to fit. Ultimately he chose to accept his life and make the most of it.

Many parents of special-needs children learn that enormous amounts of time and energy can be wasted wishing away reality or railing against what cannot be changed. They have learned to look for beauty in chaos and find hope in despair. Every life has challenges, acknowledges Dopheide. It is what you do with the challenges that matters. She believes people have two choices: "to either celebrate the life they have, or to constantly want something they don't have."

These parents strive to make the best life for their children. The Dopheides, Quinonezes, Connollys, and Rameys all stay current on the latest medical advances and treatments. The Rameys moved to Wisconsin so their son could receive intense therapy. Dopheide and her husband raise money annually for Sanfilippo research. Kelly Connolly helps Rachel to swim and ride horses because they keep her strong.

Caitlin's condition taught the Quinonez family to appreciate what is and to make the most of it. When confronted with their son's diagnosis of autism, their response was, "That's awful, but what are we going to do about it?" says Louie.

"It's a lot like being in London during World War II," he adds. "You have to go on with your life. You can't just hide in a bomb shelter. Patience, resilience, tenacity, and endurance are real things for us. You learn to play through it, to play through your injuries.

"You've heard it said that God only gives you what you can handle. Well, we didn't realize what we could handle?' He talks about emotional endurance as "not how quickly you run the race, but how fast you recover."

There is a special gratitude for simple things as well. Louie Quinonez is awestruck by his daughter's ability to pick a flower, smell it, and fall on the ground laughing in pure bliss. Kelly Connolly rejoices each morning when she sees her children open their eyes because it is one more day they get together. "I just wonder what's next, not what if," she says, but adds she doesn't stay there long. Jo McGowan gives thanks for Moy Moy's silent presence.

Like the other parents, McGowan considers herself fortunate in caring for her special-needs child. She believes the spiritual lessons learned by parents of special-needs children apply to all parents. "We are just luckier as parents," she says, "in that we have had no choice but to develop spiritually. It is always an easy thing to put off."

ELIZABETH WELLS is a writer living with her husband and three children in Omaha, Nebraska.