Special Parents

Even before their baby was born, Gary and Linda Andrews of Santa Ana could clearly picture what he would be like.

The child--Gary’s first, Linda’s third--would be a boy, of course. Gary, already a Little League coach, would teach him to pitch and hit and catch with the best of them.

And for Gary, he would be something extra--the beginning of a legacy. Gary is adopted, and he has never known any of his blood relatives. “I’m the first me,” Gary says. “He was going to be the second me, and then he would have children. . . .”

At the hospital Dec. 3, 1986, Gary watched while the obstetrical staff prepared Linda for a Cesarean section because the baby was in the breech position.

After the doctor made the incisions and pulled out the baby--yes, it was a boy--”I was expecting some cheering or clapping from the staff,” Gary says. “But there was silence.”

The umbilical cord was wrapped around the baby’s neck, but he was “pink and cute and crying. So I was relieved at that point. When the doctor finished cutting the cord and cleaning fluids from him, I noticed a red splotch on his back. The silence was dreadful.

“I didn’t want to mention anything for fear of upsetting Linda,” Gary says. “When they started to move him out of the room and quickly down the hall in his little Isolette, past the nursery and into the neonatal intensive care unit, I knew something was tremendously wrong.”

Soon afterward, the doctor told the Andrewses that their son had spina bifida, a defect that occurs in about one to two of every 1,000 births. The infant’s spinal cord and the bones surrounding it were not fully formed, and that red splotch Gary had noticed was the exposed spinal cord itself. Although doctors operated immediately to close the opening in the baby’s back and repair what they could, much of the damage was permanent.

When Family Life asked parents of disabled children to share their experiences, the Andrewses and others wrote to tell about their frustrations--and how they deal with them--as well as their hopes and how they had been forced to revise them.

Whether their children are afflicted with spina bifida, Down’s syndrome or other forms of retardation, cerebral palsy, blindness or other problems, these parents all have some things in common.

Although some of their friends and neighbors consider them unfortunate martyrs or brave heroes, they insist that they’re just ordinary people who have been thrust into extraordinary situations. And the experience has forced them to re-evaluate their goals, their priorities and their beliefs.

Little Jeffrey Andrews is 2 years old now, and soon he will be getting his first wheelchair. He can crawl, though he has no feeling in his lower body. Sometimes his feet get stuck in awkward positions and “he’ll yell ‘Feet! Feet!’ so we’ll help him move them,” his father says.

Gary, meanwhile, has long since quit coaching baseball. “I don’t even play anymore,” he says.

He and Linda love their son, of course, but they still mourn the loss of the child they had envisioned. And the grandchildren too. Although about 60% of men with spina bifida are able to have children of their own, “the odds of him fathering a child are zilch,” Gary says.

“We’ve talked about having more children; we’ve even gone through genetic counseling,” he says. “But we have so much responsibility already.”

In addition to holding down jobs--Gary, 40, is an engineer and Linda, 33, is a nurse--the Andrewses take Jeffrey to therapy 5 days a week. They must catheterize him three times a day to empty his bladder “or his kidneys will fill with urine and he could have renal failure,” Gary explains.

Like many spina bifida victims, Jeffrey has hydrocephalus, and shunts were installed soon after he was born to drain excess fluid from his brain. If a shunt fails to drain, the fluid buildup could cause irreversible brain damage.

“Every minor thing could turn out to be something major,” Linda says. “If he throws up, is it a shunt failure? He fell off the bed the other day, and I had to look at his legs to make sure they weren’t dislocated. That can happen very easily.” Since he was born, Jeffrey has had three back surgeries, meningitis and a resulting grand mal seizure, and five shunt revisions.

“Sometimes when I’m driving, I wish I could just keep driving and not come back,” Linda says. “You do feel trapped sometimes.”

Linda goes to a therapist regularly for help in dealing with the frustration. Gary takes a different approach. “I play golf once a week.” he says. “I go out and hit the ball and walk. And think.”

They also attend spina bifida and hydrocephalus support groups. “It helps just to be around people who know how we feel,” Gary says.

“You have to take another look at all the myths you’ve learned in the past,” Linda says, such as the assumption that bad things won’t happen to good people.

“People say, ‘Oh, God chose you for this.’ And you want to say, ‘Why does it have to be me?’ ”

A prenatal test is available to identify unusually high levels of certain proteins and enzymes associated with spina bifida, but the Andrewses say their doctor did not recommend the test for them and they didn’t know about it.

“If we had had the test, then I would have had an abortion,” Linda says. “At that point it’s early enough that there’s a bond there, but it’s not real strong. You’ve got to weigh it all out.”

“There’s enough problems for anyone growing up,” Gary says. “You don’t need handicaps.”

A prenatal test is also available to diagnose Down’s syndrome, a chromosome disorder that usually causes delays in physical and intellectual development. Down’s syndrome occurs in about one in every 600 to 1,000 births.

But because the test, amniocentesis, is usually reserved for women 35 and older who are more likely to have Down’s syndrome babies, Dana Odell, Susan Pappas and Sharon Scott didn’t know that their children had the disorder until after they gave birth.

All three are active in PROUD (Parents Regional Outreach for Understanding Downs), an Orange County support group.

Odell is the mother of 2-year-old Erin, who has Down’s syndrome, and 4-year-old Katie, who does not. Pappas is the mother of 3-year-old Haley, who has Down’s syndrome, and two other daughters. Scott has three children, including 3-year-old Dylan, who has Down’s syndrome as well as other medical problems.

“It does seem horrible at first,” Pappas says. “But it’s not really that horrible. Still, you wouldn’t wish it on anybody.”

“A lot of the things that they say about having kids with any handicap is that it will ruin a family, it will be a burden on your family and society,” Pappas says.

“But you can have a perfectly healthy, normal child who at 10 dives into a swimming pool and is paralyzed from the neck down. Do you send that child away because he’s now a burden on the family? Or do you give them all the love and attention and nurturing that you were giving them the day before, and more so?

“Well, with our kids, their handicap happened before we knew them.”

“I found out in the recovery room,” Odell says. “My doctor came in and said, ‘I have a concern about Down’s syndrome.’

“Of course, I just panicked,” she says. “At that point, we gave ourselves an out; maybe it wasn’t, because they hadn’t taken the blood test yet.”

Three weeks later, the diagnosis was confirmed.

“The denial gives you time to get yourself together,” Pappas says. “You’re going to have to deal with it on an everyday basis forever.”

Odell says she didn’t cry until a few days after Erin was born, when a nurse came in and told her, “ ‘You can’t hold it in anymore. You’ve got to let it out.’ After that, I just lost it.”

“I just really felt like I had lost a child,” Odell says. “I had lost the image of the child that I thought I was going to have. You really have to grieve awhile. I still sometimes think, let’s get rid of that chromosome for just a day. What would she be like?

“But she wouldn’t be Erin if she didn’t have it, and I’m not sure I’d want her without it. “Isn’t that a ridiculous thing to say?”

Dylan was born 6 weeks early, so Scott expected some medical problems. But not Down’s syndrome. “When he was born, he didn’t have a heartbeat,” she says. “That was pretty scary; they had to revive him. And then they told us right away that he had Down’s syndrome.

“I cried for months.

“Eventually you just kind of get past it. You have a baby, so that gives you something to do with that child. Dylan had to have heart surgery at 10 months, and by then we were panic-stricken we were going to lose him. I don’t know when it happened, but we changed from when we almost lost him at birth and we were going, ‘Maybe it’s the best thing.’ ”

“I’m a lot better for it,” Scott says. “I feel like I’ve grown a lot.”

Many of the mothers who do discover through amniocentesis that they are carrying Down’s syndrome babies choose to abort.

“I can’t honestly say that I would not have had an abortion had I known sooner,” Pappas says. “But now, give up my daughter? No!”

“I think this broadens your view of, ‘What are we here for?’ My daughter’s not going to get an MBA, start her own business, make some great change at General Motors that will benefit the world. What she brings out in other people is how her sisters and the people around her are growing up with more tolerance for people who are different.”

All three women say they hope their Down’s children will someday be able to live somewhat independently in a group home or other facility.

As disabled children grow older, they face different problems, says Barbara, who lives in Irvine and who asked that her full name not be used. Her son, James, has a mild case of cerebral palsy.

“There is something about a child, particularly one with an illness or handicap, that evokes the best and most positive feelings from other people,” she says. “However, once that handicapped person crosses the line from childhood to adolescence and then adulthood, changes occur.”

Her son became more frustrated at being unable to keep up with his peers, and it hurt him to lose some of his old friends. “Some peers couldn’t see his strengths and laughed at his weaknesses, and even adults didn’t always have patience for him. . . .

“I don’t think there is any easy way a parent can learn to cope with the prospect of a limited future for his child. We have to work very hard at finding the best possible avenues open to our child and be persistent in making them available.”

Catherine, who lives in Fountain Valley and who also asked for anonymity, says she tried every resource she could find for her daughter, who suffers from spastic cerebral palsy and other problems. Today, her daughter is 16, a junior in high school with a 4.0 grade- point average.

“Two years ago I would have said she doesn’t have enough daily living skills to achieve independently,” Catherine says. “Today I say, ‘She’s going to be OK.’ There are still some areas where assistance is required, and we still haven’t adjusted to the fact that she hasn’t been accepted socially by her ‘normal’ peers.”

But Catherine says she tries not to dwell on the negative. “I know my child will continue to strive for the most she can be, which is an extraordinary individual.”

“The worst worries come at birth,” says Lois, mother of 25-year-old Eric, who has Down’s syndrome. In her quest to learn more about her son’s problem, Lois, who lives in Anaheim, went back to college and eventually became a school psychologist.

When Eric was 18, his parents placed him in a care facility, where he lives during the week. “He continues to be a vital part of our family,” Lois says. “He attends a sheltered workshop. He looks forward to weekends and vacations with us.

“Our Eric will never do drugs, drive drunk or get anybody pregnant,” Lois says. “He may remain childlike, but he loves, he has worth and personal integrity.”

“I have met a few people with retarded children who spend an inordinate amount of time feeling depressed and cheated, and who never do seem to get on with it,” says Lois Powers of Irvine.

Powers says she felt that way at first, but “‘I was so busy trying to do the best job possible for everyone . . . that I failed to notice that everything had fallen into place and we were all doing a great job of adjusting and, in fact, were a happy, healthy family. We had metamorphosed!”

Despite the heartache of facing her daughter’s retardation, Dixie Mitchell of Irvine says that “this sounds strange, (but) today at her age of 23, I don’t wish her to be anyone other than who she is. . . . She has taught me what it really means to love, to forgive, to be patient and not to carry grudges. . . .

“Having said all that it does make my heart heavy to know that she can never drive a car (her dear wish), almost certainly cannot marry, have a baby (her heart’s desire), and to know that someday I will not be here for her.”

But Lauren, of Newport Beach, says that after 8 years of parenting a Down’s syndrome son, “I could feel and see the stress from having a ‘special’ child start to pull heavily at the seams of our family cloth. My oldest was becoming angry. I was always tired or depressed and grouchy. My husband and I argued more easily. Life was just not much fun.”

So the family made the difficult decision to place their son, Adam, in a residential care home.

“Every other weekend he’s with us. We truly miss him. Sometimes when he leaves I walk by his bedroom, empty again, and cry.”

Barbara Schroer of Tustin has a 27-year-old daughter who is blind, retarded and has autistic-like behavior.

“Why does one go on?” she writes. “All I know is that when something connects and her face lights up and she laughs and responds, the world lights up with me. It’s like a beautiful sunset when the world is pink and the sky is full of white puffy clouds and you say to yourself, ‘There must be a God.’ And at that moment I know I will go on fighting all the dragons in the world for this beautiful ‘special child.’ ”