Raising little people: Moms of kids with dwarfism advocate embracing differences

WASILLA — Two days before the start of 2015, Jessica Weber went in for her scheduled C-section and got ready to welcome Jace into the world.

At 35 weeks, she’d looked into the face of a specialist with a solemn expression and a thick binder in hand as he prepared to tell her why the ultrasound had come back with measurements that weren’t normal.

She tears up now as she thinks about it.

“Not because I don’t love my son the way he is, but because I’m remembering now the emotions, and the fear that I felt,” she said. “Now, I wouldn’t have him any other way. But those are steps you have to go through, grieving for the child you thought you had, and accepting and welcoming the child you do have.”

The small window of time she was given to process that her son has achondroplasia, a form of dwarfism, is typical, she said, since the genetic difference doesn’t usually show up until it’s detected on ultrasound in late pregnancy.

As Weber and her husband celebrated the birth of their baby boy, Jaime Finch was at the hospital, too, rescheduling a planned C-section for the following day. Her son Jaxon, like Jace, had been identified as a child with dwarfism near the end of her pregnancy.

He was born on Dec. 31.

The two women had never met, but they were already traveling remarkably similar journeys. Both are stay-at-home moms who lived in the valley. Both have husbands who work on the slope. Each had been absorbing new information about their children’s dwarfism, researching all they could to prepare for a child who would be different from what they were expecting. Their sons were the first biological children for both mothers, who also have two older children. Jaxon was born the day after Jace. But it would be more than a month before the two women found each other.

Weber, for her part, said her family was mostly supportive. But she still found herself explaining basic things about her child to people who didn’t know better. One relative thought it must have been something that she did to make her son turn out this way. She tried to explain that dwarfism is a genetic difference, and not influenced by the environment in the womb. One person had a recommendation for how she could “fix” her son, asking, “Well, can’t you just give him hormone therapy?” People who have dwarfism have shorter bones, something taking growth hormones won’t change.

“I felt really alone,” Weber said.

When the two mothers found one another on a Facebook page for little people, they were ecstatic.

“I don’t know where we would be without Facebook,” Finch said. “We probably would eventually find each other, but we wouldn’t be able to give each other regular updates.”

Now, the two moms and their sons are close friends, and active in a group Finch started for Alaskans who have dwarfism or who are raising children with dwarfism, called Alaska LP.

The informal group provides a support network and occasional social outings, with about 10 families from Anchorage, Eagle River and the Mat-Su participating.

Weber said it’s been wonderful to have another mom to go to for support.

When it comes to relating to the wider community, Weber and Finch said they both find themselves explaining to others that dwarfism is a genetic difference and not a disease.

“There’s nothing wrong with them,” Finch said. “I love him as he is. There is no fix. And you don’t need to feel sorry for me.”

Weber chimed in, “Oh, I know!”

She commiserated with Finch during a Sunday interview at Weber’s house, while Jaxon and Jace played with toys in her living room.

The times they’ve had to repeat to some people that no, it doesn’t “suck” that Jaxon and Jace are little people.

“It’s like, ‘No, it’s fine, this is great,’” Finch said. “God gave us these children for a reason.”

Both moms said they don’t want people to use what they call “the m word” around their children, calling it a derogatory term for people with dwarfism that has been used to dehumanize them. They call them little people, if making the distinction, or people with dwarfism, and use the term “average-height people” instead of calling everyone else “normal.”

“The biggest thing is just knowing he’s a person and he has feelings,” Finch said of her nearly-two-year-old son Jaxon. “He’s not an object. They have feelings and he can do things just like anybody else. He’ll need a few extra step stools, but otherwise, he’s the same as anyone.”

The women said shows like “Our Little Family” and “7 Little Johnstons,” do a good job of portraying people with dwarfism.

Both women cited a local friend who is an adult with dwarfism as a good example for their children who demonstrates that people with dwarfism aren’t any more inhibited from connecting with their communities and making positive contributions than average-height people are.

Sometimes, Weber and Finch said, they do get stares.

“I understand, but if you want to talk to him, just come up and talk to him, ask questions,” Weber said. “I’m not opposed to that.”

Finch added, “I’m not shy about that at all. If your kid goes, ‘Oh, my God!’ Well, come and ask some questions.”

“It’s hard, but yeah, I’d prefer that,” Weber said.

“I know some parents try to shush their kids when they see that kind of stuff,” Finch said. “When you see something different. But we actually want you to ask us, ‘I notice he’s a little shorter. Can I ask what he has?’”

There are around 200 types of dwarfism, of which achondroplasia is the most common. Medical literature does doesn’t define dwarfism as a disease. However, there are some health complications that can come along with it. C-section births are recommended because of the size of the babies’ heads. Sleep studies, MRIs and visits to specialists to monitor for common health problems are typical.

“We’re drowning in our medical bills right now,” Finch said. “With the oil, everyone got pay cuts. We do what we can, and pay as we can. With the PFD chopped in half, that was hard. Usually we use that to pay all our bills off. Such is life, I guess.”

Finch said she first heard about TEFRA, a form of Medicaid based on children’s need rather than income, from Weber after she got it recently, and is applying for it for her family, as well.

It’s another example of how mutual support and information sharing among parents of children with dwarfism in the Alaska LP group has made raising Jaxon and Jace better for their moms than it would have been without.

As the two prepped their toddlers for photos, Jaxon and Jace drew their attentions away from toys to look at the camera, gazing and smiling at the Elmo and Cookie Monster toys their moms held up to elicit smiles.

“I think it’ll be good for Jace,” Weber said, “Growing up with at least one friend who is like him.”