A prom for Seaira

About 30 minutes into Seaira Hiebert’s 18th birthday party, while posing for portraits in her wheelchair, she had a couple of seizures. Her loved ones crowded around her under the balloon arch to make sure she was OK.

Seizures are a regular occurrence for Seaira, who has Rett syndrome, a debilitating neurological disorder that effects 1 of every 10,000 to 15,000 girls born in the U.S. Family friend Sherri Miller knows that just before a seizure Seaira’s body tenses and her eyes roll back. Swiping a magnet across a Vagus Nerve Stimulator implanted in Seaira’s chest stops or minimizes the seizure’s severity.

“For her to have lasted this long, she did really good,” Miller said, watching as Seaira was carried to a couch.

The onslaught of people and attention at Seaira’s prom-themed birthday party was overstimulating. Dozens of people came to an event-planning studio, We Plan It, by the Vancouver waterfront on Saturday to celebrate.

While lying against her mother, Gail Hiebert, Seaira let her eyes droop and arm go lax, her corsaged hand grazing the floor. As Gail gently stroked her daughter’s face, some teenagers walked past the windows dressed in black-and-white formal wear — evidently heading to a school prom.

Hiebert said her daughter’s disabilities are too severe for her to go to a traditional school prom, or to even attend school. She was last a student at Jason Lee Middle School, where she went for about 2 1/2 hours a day.

“It’s just not something that she’s able to do,” Gail said.

Seaira doesn’t talk, but she does communicate with her eyes.

“She will blink for ‘yes.’ She will stare at you like you’re an idiot for ‘no,’ ” Gail said. “If I put two movies in front of her and I ask her which one she wants to watch, she will stare at the one she wants to watch. She is in there. She understands everything that’s going on around her. There’s just no output.”

Holding a big birthday bash every year has been a way to celebrate her daughter in a safe, inclusive way. Last year’s birthday was Hawaiian themed and the year before that, for Seaira’s Sweet 16, it was “Candyland.” This year, though, Gail wasn’t sure the party could happen due to the hefty cost of applying for legal guardianship of her now-adult daughter. Thankfully, the single mom said, friends and family raised money for the party and bought the dress and jewelry.

“It’s been quite the team effort of making this happen,” Gail said. “This couldn’t have been better. A lot of love went into all of this.”

There were all the fixings of a traditional prom: Food, drinks, and Top 40 hits blaring through a stereo system. Seaira had her hair and makeup done by her brother’s girlfriend. She wore a pink dress, matching leggings and a lace bib. The tables were sprinkled with pink-and-black butterfly confetti. (Seaira has butterflies hanging from her bedroom ceiling.)

“It’s just something I think every girl should get to experience: that sense of dressing up and feeling special for that day,” said Gail, who went to five proms when she was a teenager.

“It’s good that she gets to have that experience,” said her brother, Cody Loyer-Hiebert. He attends Fort Vancouver High School and plans to go to prom this month.

Prom is one of those rights of passage, said Gail, who wants her daughter to live a life as full as possible. That’s why she goes all out for birthdays, even if it means adapting from one minute to the next.

“It’s a really big deal. The hardest part is not knowing if we’ll get a chance the next year,” Gail said. “Every year it’s a blessing that she’s still with us. Doctors say it’s because of me, but I don’t believe that. I think it’s her and her strong will. She loves life and she loves the people around her.”

Being a rare disorder, not much is known about the life expectancy of those with Rett syndrome. Those who have it may quit breathing in the middle of the night or die from seizure complications.

On Seaira’s actually birthday, which was Wednesday, Gail woke up crying.

“For me, it was very emotional,” she said. Specialists didn’t expect Seaira to reach adulthood. “It’s exciting and scary at the same time.”

Gail read over the guardianship paperwork, which strips Seaira of rights such as voting or applying for a loan. These are things Seaira wouldn’t do anyway, but “it was weird seeing it in print right in front of you,” Gail said.

As with many parents of Rett syndrome children, she remembers the day that her 18-month-old daughter seemed to “switch” and the symptoms started to show. Seaira bit her and made her bleed, something she’d never done before. When she told Seaira to say sorry, Seaira started screaming and banging her head against the wall.

“Looking back on it, I feel awful. I was mad at her,” Gail said. “I can only imagine how she must’ve felt. If all of a sudden you’re trying to open your mouth to say something and nothing’s coming out and you don’t know why. You can’t reach to pick up your cup or bottle that you’re used to having.”

Rett syndrome mostly affects girls. As newborns they appear developmentally typical. After six months or so they lose skills they once had, such as crawling, communicating and using their hands. Although Seaira was first misdiagnosed with autism, at age 3 a specialist at Oregon Health & Science University determined she had Rett syndrome.

“When you go down the list of all the things that Rett syndrome can do, you can check off every single of them for her,” Gail said. “I do truly believe God had a plan for me in this.”

She said, for instance, that Seaira has helped teach the foster children that have lived with the Hieberts that there is such a thing as unconditional love and that life could be worse.

Gail and Seaira’s caregivers go into any outing knowing that they may have to take a break or head home early. That doesn’t stop them from trying to go to the movies, or out to lunch, or to the Washington Coast to feel the ocean air.

Sometimes, birthday parties are spent on the couch.