After the death of 5-year-old Avery, this Raleigh family is finding a new kind of normal

Bekah Neill had a loose tooth. One of her bottom front teeth was hanging on, by slimmest of threads, but she wouldn’t let her mom get a good hold on it. She giggled and turned her head away.

The 6-year-old started kindergarten this month. Her 3-year-old brother James started going to preschool two days a week. Their mother, Emily Neill, has resumed her 12-hour shift each Friday at WakeMed’s neonatal intensive care unit. Their dad, Andy Neill, is back at work as an engineer.

“We’re back in a routine, and that’s good,” Emily said. “We’ve kept busy.”

The Neills are learning to live without Avery, Bekah’s twin sister who died on Mother’s Day, less than five months after she was diagnosed in December with an incurable brain tumor. The family shared details of Avery’s final months through a Facebook group, Bravery for Avery, that had more than 40,000 members hoping for a miracle. The News & Observer has also chronicled the family’s journey.

So much of their lives became public — the medical treatments, the good times and the disappointments, the final moments of Avery’s life. While the family still occasionally posts Facebook updates, they are settling into a new kind of normal.

The Neills had hoped to have a final nine to 12 months with Avery, the typical prognosis for a child with diffuse intrinsic pontine glioma, or DIPG. They wanted to make memories together instead of focusing only on Avery’s declining health, which left her with double vision and trouble walking.

But Bekah and James didn’t get to spend one last summer with their sister. Instead they went to day camps, and the family went to the beach with both sets of grandparents. The girls’ June birthday was only two weeks after Avery’s funeral, so the family celebrated with a low-key pool party.

“That was so fun!” Bekah recalled of the celebration.

After the party, the family visited Avery’s “spot” at the columbarium at Bay Leaf Baptist Church in Raleigh. The Neills donated Avery’s brain and spinal cord for research, and Emily can’t decide what to call the place where Avery’s ashes are inurned.

“I had gotten through the whole day,” Emily said, “but when we got there, I was really feeling it. And then a friend texted me, ‘Look up into the sky.’ There was the brightest rainbow I had ever seen. It was a double rainbow, and it was really perfect.”

Early on the morning Avery died, Emily held her in her arms and told her, “It’s OK. You can let go. Send me butterflies and rainbows.”

Back to school

A friend described grief to Emily as huge waves that come so fast you can’t breathe. They eventually slow down, but a rogue wave strikes every now and then.

On the day Emily went to meet James and Bekah’s teachers at the church, she texted Shelly Wenzel, the hospice nurse who spent the entire weekend with the family when Avery died. They continue to keep in touch.

“I just don’t know if I can do this,” Emily wrote.

“You’ll be fine,” Wenzel texted back.

But Emily didn’t feel fine. “I just walked down the hall, and I couldn’t do it,” she recalled. “I went right to the office.”

A friend who had also lost a daughter happened to be there.

“We just cried together,” Emily said. “Everyone just kind of circled around me.”

Bekah had separation anxiety over the summer. That’s why Emily and Andy decided half-days at Bay Leaf would be best this year. Next year, Bekah will start first grade at Brassfield Elementary School.

She’s starting to read, and she recently finished the book “Otter Going Swimming” at the kitchen table with her mom.

“We’ve never read this book before, actually,” Emily said in amazement. “We’re gonna send you off to college now.”

“No you’re not,” Bekah said, giggling. “I’m not even close.”

Emily recently took the kids to a museum with her friend, Amanda Bailey, who has two children of her own.

“She has her days that are better than others,” Bailey said. “We are all learning how to try to get to a new normal. I love Emily like a sister, and it’s been great for us to do life together. I know if something happened with my family, she’d be there in a heartbeat.”

The women’s church group has talked about walking through the fire and leaning on Jesus, Bailey said.

“We’re hoping we’re able to walk through the fire and come through that fire as a testimony to others that Jesus isn’t going to leave you just because you’re having a hard time.

“Our worst day was on Mother’s Day, and Avery’s best day happened that day.”

Emily and Andy are attending a 13-week GriefShare course.

“It’s definitely helping,” Emily said. “It helps us know that we have a way out of things. You never know when you’ll get hit by a wave.”

For example, the couple thought about hosting Thanksgiving for their family, and then decided that wasn’t the best thing to do after all.

“She’s been gone for four months,” Emily said of Avery, “but we’ve been processing the loss since December, when she was diagnosed. We were grieving her in a different way, and who she had been.”

Emily found photos and videos that show Avery before she got sick. She watches her daughter sing and dance and act silly. That makes her happy.

Andy said he also experiences the waves of grief.

“The other night I just broke down and cried for no reason,” he said. “This summer, Bekah had swim practice, and afterward she was playing with a friend. It was weird it wasn’t Avery. I have to take pictures for work, and these old pictures of Avery crop up on my phone.”

Emily said her husband prefers to stay busy. He took about a week and a half off work after Avery died, while Emily returned to her job just recently.

“He kinda wanted to rip the Band-Aid off,” Emily said.

No regrets

In GriefShare, Emily and Andy have learned that the grief process is different for everyone.

“Some days when it’s really hard and really sad, I’m grateful she’s not hurting,” Emily said. “The last month, you could tell she was feeling more symptoms.

Emily is grateful that Avery was never “locked in” to her body, and that she even ate breakfast the day before she died.

“Once the tumor started growing again, it was fast,” Emily said. “I’m sad and I want her here, but if she can’t be healed, I’m glad she’s in heaven. There was nothing we could have done differently. There are no regrets in that way. We didn’t do extreme treatment. We didn’t want to take away from her quality of (life). We did radiation, the only thing they know that helps. We didn’t really get that honeymoon period most kids get.”

Emily takes comfort in knowing the family raised more than $68,000 for the Michael Mosier Defeat DIPG Foundation, a Maryland-based organization committed to finding a cure. Between 200 and 400 children in the United States are diagnosed with DIPG each year, according to the foundation.

“She wasn’t saved,” Emily said, “but maybe somebody else could be.”

Emily stopped what she doing to wiggle Bekah’s loose tooth one more time.

The tooth came out, eventually. Bekah pulled it herself.

This story was originally published September 28, 2018 at 11:31 AM with the headline "After the death of 5-year-old Avery, this Raleigh family is finding a new kind of normal."