PUBLICATION: Goldendale Sentinel, WA print edition

 

Belinda Cuevas was secretly hoping for a boy.

When the ultrasound technician announced she would get her wish, the mother-to-be was thrilled: her baby’s heart was beating, his body was moving and, according to doctors, everything looked normal.

She and her husband Joe left the doctor’s office excited, with plans to decorate the nursery blue.

Not long after, at an August baby shower, the Goldendale resident’s contractions began and, five hours later, a tiny baby boy lay on her chest.

But Belinda says she noticed from the beginning something different from her other pregnancies: her newborn didn’t cry.

“I didn’t think anything of it yet,” she recalls.

Seconds later, the infant was taken from her and out of the room in a shuffle of footsteps and voices. She doesn’t remember much from the minutes that followed, she says, only that it “felt like hours” before anybody returned.

“My husband came back up and said to me: ‘There’s something wrong with our baby,’” the mother remembers.

The couple would later find out Jayson had a rare condition known as 6q deletion syndrome, shared only by 21 recorded cases at the time. They were told he would likely never open his eyes, see clearly, sit up, stand, talk, or walk.

Doctors insisted she and Joe learn infant CPR before leaving the hospital because her baby, they said, could stop breathing at any moment. The weight of this responsibility terrified her.

Three days later, the Cuevas returned home uncertain what the future held. For two months, she says, Jayson’s eyes were closed almost completely.

But one day, Jayson did something doctors hadn’t predicted: he opened his eyes. In the weeks and months that followed, he began doing other unexpected things: he rolled over, he lifted his head, he sat up, he stood. One day, he pointed to his father and said: “dada.”

“Every day he was doing more and more,” recalls Belinda. “Every day he was improving.”

The 22-month-old, who will be the guest of honor Friday at a local fundraiser, now has a small cache of words including dada, mama, and “nana,” for his big sister, Briana.

Belinda says raising Jayson has taught her lessons she might not have learned otherwise.

“When they tell you your baby is not going to talk and then he does…everything is a milestone,” she says. “These things we took for granted with our other kids. These things are a miracle with him.”

Moreover, she says, there are all the regular joys that come with motherhood.

As she watches Jayson make his way around the living room in his walker, smiling beneath a head of wispy “hippy” hair, he bats his eyes back at her with a smirk.

“He’s just happy,” she says. “He loves everybody. He loves to blow kisses and flirt. The nurses at Memorial Hospital know him so well.”

However, Jayson is still significantly behind other kids his age, developmentally. Although nearly two, Belinda says he looks and behaves like a 6-month-old.

The developmental delay is thought to be caused by a genetic deletion or mutation, which occurs when chromosomes pair up to swap DNA. Essentially, Jayson is missing part of a chromosome, or sequence of DNA, that should have been exchanged in the swap.

The missing DNA contains genetic material crucial to early development.

At present, about 50 cases of 6q deletion syndrome are known of worldwide. While there are likely many more unreported, it remains extremely rare.

The few references that exist are found mostly in medical journals and genetics magazines. Within the disease, there is a wide variety of symptoms.

For Belinda and Joe, that means they have little in the way of a roadmap. Doctors have told them, in fact, they are studying Jayson as they go.

Belinda says she often wonders what goes on inside his head. Her mother, she says, believes he is more lucid than he seems.

“A lot of times I see frustration in his face, like when he’s trying to roll over,” Belinda says. “He knows what he wants to do but he can’t get his body to do it…You can see in his eyes he knows.”

She worries about how life will be when he gets to be school-aged, noting that “kids can be mean.

Her other two children—eight-year-old Briana and three-year-old Joey—are already protective of him. Briana, she says, bounds out of her bedroom every morning to check on him.

Watching the eight-year-old bounce her brother on her lap, singing: “I’m a perfect baby, I’m a perfect baby,” one can see the mutual adoration between the two.

Belinda says it is support from her family and community that keeps her and Joe grounded.

Her work, she says, is incredibly supportive and her friends are amazing. One friend in particular, who is also a mother, seems to understand. She adds that her parents “think for them” when she and Joe are too overwhelmed.

“The community has supported us so much,” she says. “It’s not just one person…the whole community has helped out.

Her Catholic faith has also provided help and she believes God watches out for her son.

Moreover, Jayson himself has a will of steel.

An example of this will was in March when he came down with pneumonia and two lung infections.

Jayson was taken by Life Flight helicopters to Seattle where he spent three weeks in the Intensive Care Unit (ICU). While there, Belinda says other babies died in nearby rooms and the medics questioned whether he would make it.

“The doctor said, ‘He’s giving up,’” Belinda says.

But Jayson pulled through.

“He’s a fighter,” she says. “My baby’s so strong. Yeah, he’s disabled. Yeah, he has respiratory issues, but he fought to come home.”

A spaghetti fundraiser will be held at 6 p.m. on Friday, May 9 in the Goldendale Middle School Cafeteria to help pay Jayson’s medical bills.

 

This article was originally published in the Goldendale Sentinel newspaper. Goldendale, Washington. Photo with permission from Pixabay.