Families with special needs share their stories for photo project

Like many parents, Kelly Kirksey Fisk worried throughout her pregnancy that something would go wrong. But she gave birth to a beautiful and seemingly healthy boy. Her fear resurfaced when her baby Noah was 9 months old and couldn’t sit up without help. Around the same time, his seizures began.

Though Kirksey Fisk wouldn’t understand what was causing her son’s symptoms for years, her vision of Noah’s future began to change.

“There’s an expectation when your child will say they love you for the first time or color a picture,” she said. “I imagined dancing with Noah at his wedding. That may never happen.”

Noah has a condition called 15q13.3 Microdeletion Syndrome. Or, as Kirksey Fisk explains, “he’s missing some chromosomes.”

The syndrome shows itself in different ways. For Noah, it means he has anywhere between 12 to 20 seizures a day. His brain has difficulty receiving and responding to information. He also has some developmental delays. Kirksey Fisk said Noah, now 8, has the vocabulary of many 5-year-olds.

“As a parent, you have to process to be OK with that, to not be angry or even sad,” she said. “I may not dance with him at his wedding, but I’ll dance with Noah in our kitchen when he’s older.”

Saturday, Kirksey Fisk hopes to help other parents of children with special needs share their stories.

A Kalispell photographer, Kirksey Fisk posted an event on Facebook inviting people to write on a poster what they want people unfamiliar with disabilities to understand. She plans to take individual family photos with the messages as well as a group shot. She said she intends to share the photos online.

She’s called the effort the Special Needs Children’s Project. Participants will begin meeting in Woodland Park in Kalispell at 2 p.m. on June 10.

“Like me, all parents that have special-needs kids have a story we are gratefully consumed by,” Kirksey Fisk said.

WHEN ERIN Floures saw the Facebook event, it was the first time she heard a call for families in the Flathead Valley to give a voice to their experience.

“People have been craving something like this for a while,” Flores said.

Her son Jaxen has Pompe, a genetic disease that affects about one in 40,000 people in the United States, according to the National Institute of Health. One of Pompe’s features is severe muscle weakness.

Jaxen is 3. He can’t walk yet, but he’s strong enough to scoot on his bottom. When he wants to go on a walk with his mom, he puts his gloves on so he doesn’t scrape his knuckles on the ground.

Jaxen struggles to talk — a tongue is a muscle he’s still learning to control. But he’s learning sign language.

“He’s at an age where he makes up his own sign for things and I have to try to figure it out,” Flores said with a laugh.

Jaxen gets nourishment from a feeding tube — which a stranger recently mistook for a leash. Flores said it wasn’t the first time she watched as someone’s face transition from confusion to judgment.

“She looked at Jaxen then asked her boyfriend if they would ever put their kids on a leash,” Flores said. “I wanted to say, ‘that’s how he stays alive, not a leash.’”

She said that situation can be hard to explain after the sting of a stranger’s invalid assessment.

Flores’ poster states Pompe may make her family physically different, but they are strong and smart.

“We are just like you,” she said. “[Jaxen] has his own character, a way to communicate and understands everything we say to him. He’s a brilliant child, the only things impacted are his muscles.”

Flores said if people are curious about why he has a feeding tube or scoots on his bottom, they should just ask.

“Most of us moms are more than happy to explain why our child is the way they are,” she said.

KIRKSEY FISK said she has a few ideas for her poster.

“‘I’m scared,’ because I don’t like the unknown,” she said. “Don’t be afraid of him — try to understand him — get beyond what you see — we need support.”

Kirksey Fisk said she’s often felt like her family’s alone in their experience. But since posting the event, she’s met parents who also have hours of doctor appointments a week. They are people who are used to being stared at and know what it’s like to reimagine their child’s future.

“I am not special. So many other people are going through the same things I’ve gone through,” Kirksey Fisk said. “This could be part of our healing, walking with others to not feel isolated, and a way for us all to share something we want the world to know about our story.”

For more information, visit the Facebook event page “Special Needs Children’s Project.”

Reporter Katheryn Houghton may be reached at 758-4436 or by email at khoughton@dailyinterlake.com.