Distance from specialized care takes toll on parents, too

This is the second installment of two-part story on special needs children in rural California. For the first part, an overview of the challenges rural families face in getting their children medical care, click here.

Crystal De Witt coos her son to sleep. She sings “O Holy Night,” a Christmas tune, though it’s a sweltering almost-summer day. She hugs Jace, aged 3, so tightly to her chest that her arms become a swaddle.

Jace, still dressed in the crisp linen shorts he wore to Sunday morning services, fights sleep. But he’s down for a nap in less than five minutes, tired after an afternoon talent show with some dancing, a few tries at the splits and plinking on his mom’s piano.

His fascination with music and dance surprised Crystal, because Jace is hearing impaired – one of many health challenges he’s faced since birth. He also has a cleft palate, a recessed chin, and a too-short esophagus that needed surgery when he was three days old.

Possibly his problems are all part of a related syndrome, but doctors still can’t say for sure. “Right now, he’s our mystery baby,” Crystal says. She’s not looking for answers about what caused his problems. “Sometimes, things just happen.”

Instead, most of her energy is spent getting Jace the ongoing medical attention he needs while keeping up with her fulltime work running an in-home daycare. His list of doctors is as long as his list of health problems and includes a gastroenterologist, audiologist, plastic surgeon, orthopedic surgeon and more, all specialists in pediatric care.

Meeting these needs can become a fulltime job for any parent. But the task is even harder for people who live in the rural areas of California. Crystal and Jace live in a small town outside of Marysville, in Yuba County, at the far north tip of the Central Valley. Despite the suburban feel of Crystal’s neighborhood, with its neatly spaced ranch-style house and square patches of lawn, Yuba County is distinctly rural, relatively poor, and home to few services.

Residents can satisfy everyday needs by crossing the river into Yuba City, in Sutter County, where there’s a mall, dentists, and familiar restaurants. But there is no medical center with pediatric specialists. Finding that level of training usually requires a trip to Sacramento or beyond. Some parents must travel as far as Palo Alto for care for their children.

Getting Jace to the doctor means an hour-long drive each way, a trip parents say can be a nightmare with a special needs child in the car.

“It was horrible,” Crystal says of the early back and forth. Help recently came in the form of a portable DVD player, purchased in the early hours of a Black Friday sale last year. But challenges remain. Jace’s father usually drives him to Sacramento after working a 24-hour shift as a paramedic. His grandmother helps too.

Guille Grande-Reyes’ challenges started with getting her son, Esau, who was born with spina bifida, home from the hospital. Guille had been diagnosed as infertile after years of trying to have a baby following the birth of her daughter, who is now 20. Guille found out that she was pregnant in her second trimester, and that Esau would have spina bifida two weeks before she gave birth. She had little time to prepare for her son’s needs.

His surgery on the day he was born to close a dime-sized hole near the bottom of his spinal cord lasted 9 hours – the first of the seven operations that Esau has had so far. He couldn’t use a typical car seat, so the hospital gave Guille one to accommodate his back.

“They gave me this casket looking thing,” she remembers. “Someone had to be there, because if he moved, he could suffocate.” Her daughter, Marisol, 16 at the time, started homeschooling so she could help her mother care for Esau. She stayed with her mother at the Ronald McDonald house while they waited for him to be released from the UC Davis Medical Center and sat in the backseat with her brother on his first trip home.

Today, Esau, 3 years old, handles his walker like an extension of his body. He glides over the intricate tile floors of his grandparent’s house in Yuba City and follows Guille into the paved front yard to plead for figs, which are not quite ripe, from their small tree.

He is too comfortable for his mother’s comfort, and Guille calls him back when he wanders out of her sight for too long. They talk in English and Spanish about Buzz and Woody, characters from Toy Story.

For the first months of his life, Guille didn’t want to take Esau out at all. Trips meant putting him in the car seat that reminded her of a coffin. And the family was forced to move from Yuba City to a trailer park on the outskirts of Marysville, surrounded by crops and tractors. Guille left her job running a daycare after Esau was born, which made the rent in Sutter County out of reach. The isolation is hard, Guille says.

Navigating the system was hard too, but she’s learning. Her doctor gave her a prescription for medication for Esau, which Medi-Cal declined to pay. When she went to the doctor to get a new prescription, she also got some advice: fill it in a different county – if Medi-Cal would not cover it, California Children Services (CCS) would. She got the medications at UC Davis with no problems. But she’s still waiting for CCS to process a request for a special stroller that her doctor also prescribed.

The toll of constant care, complicated systems and distance from services is exhausting for parents of special needs kids in rural areas.

Cynthia Winward’s son, James, now 18 months old, is a hemophiliac. Cynthia moved to Olivehurst shortly before James was born, when her husband Thomas started work at nearby Beale Air Force base. Unlike Crystal and Guille, Cynthia and her husband have no family nearby. Doctors took six months to diagnose James with factor 13 deficiency, the rarest form of hemophilia. He also had a severe reaction to the hepatitis B vaccine that was administered at birth, Cynthia says. Within the first year of his life, he had cerebral palsy and partial blindness caused by bleeding into his brain.

Cognitively, James is three months old. He hates the car, and screams with the power of a one-year-old child. Cynthia has earplugs to help make the frequent trips to Sacramento bearable.

Coordinating James’ doctor visits and tending to his health needs at home is a fulltime job for Cynthia. She doesn’t get out much, she says, and hasn’t been able to build a network of support.

When the phone rings with a call from a doctor’s office about a scheduling mishap, Cynthia leaves the room to try to work it out, while Thomas rolls James gently on his therapeutic pillow. Cynthia returns to say she thinks she’s going to have to cancel her upcoming trip to Texas. The next appointment isn’t for a year.

That visit was to be her first trip home to visit her family since James was born, Thomas says quietly. He watches Cynthia walk back to the kitchen to finish her call.

He looks relieved when his wife returns a few minutes later with the news that the doctor said it was okay to delay James’ visit and put him on the cancellation list. She could go home after all.

Cynthia says she’s learning to care for herself more. She worried that getting help would make it seem like she was a bad mother, but she sought therapy after her mother-in-law gave her some sage advice.

“She said, ‘if you had a broken arm, you would go to the doctor and get help. You have a broken heart. Go to a doctor and get help.’”

But some limits of rural life are very hard to overcome, even with support. Second medical opinions, for instance, are almost impossible to come by.

Crystal worries that Jace’s cleft palate is making it difficult for him to speak. He only says four words at age 3. His doctor wants to wait six months to see if he can do without the surgery, but Crystal is worried that the delay will impede her son’s already slow speech development.

The frustrations are constant. But Crystal has also shifted her expectations and accepted her son for who he is, a change in perspective that lets her find pleasures in everyday tasks of motherhood that might otherwise fly by.

“This is one of my favorite times,” she says as sleep relaxes Jace into her embrace. She holds him close for a moment before bringing him to the bedroom for his nap.

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