Everett resident writes a portrait of excruciating grief

Natalie Johnson is living through the unthinkable — the loss of a child.

The Everett resident is the author of the memoir “An Angel Named Sadie,” an emotionally raw and painfully honest account of how the death of her 3-month-old daughter changed her forever.

Johnson was 19 when Sadie died in 2000. Twenty-one years later, she is still grieving the loss.

“Ultimately, though, it’s a love story about how a sweet little angel named Sadie transformed my life,” Johnson said. “(I) spent 15 years quietly writing and rewriting the book, often through a veil of tears.”

“An Angel Named Sadie” is a self-portrait of a mother who is in mourning. Johnson recalls the complications of her pregnancy, the joy in the birth of her daughter, the devastation of Sadie’s death and her continued bereavement.

Johnson, now 40, has phenylketonuria, also known as PKU, a rare inherited disorder that causes an amino acid called phenylalanine to build up in the blood. PKU is caused by a defect in the gene that helps create the enzyme needed to break down phenylalanine.

If a special diet that limits phenylalanine isn’t followed, it can lead to serious health problems.

Johnson was told to not have children because babies born to mothers with high phenylalanine levels can have serious consequences. Complications at birth can include low birth weight, delayed development, facial deformities, an abnormally small head, heart defects, intellectual disability and behavioral issues.

“I was terrified when I found out I was pregnant,” she said. “But I was also happy because I’d always wanted to have a baby.”

She left her baby’s fate up to God.

Sadie was born after doctors induced labor 38 weeks into her pregnancy. She was 17½ inches long and weighed 4 pounds, 5.8 ounces. She was diagnosed with a heart defect that would require surgery at birth, as well as every five years until Sadie turned 18.

Three months later, Sadie died while Johnson was singing at her best friend’s wedding. Left in her grandparents’ care, Sadie was transported to a hospital when they realized she was struggling to breathe. They couldn’t bring themselves to tell Natalie until she got back from the wedding, about three hours after the baby’s death.

Johnson’s husband encouraged her to finish writing her memoir. He said it was therapeutic for her.

“I thought it was something she needed to do to help with her healing,” Dexter Johnson said. “And if it helps others in her situation, then I thought I’d be great also, too. I was always behind her 110% — ‘Go on and write your book.’”

As newlyweds, Dexter said he made the mistake of saying “I know how you feel” whenever Natalie was reliving the nightmare of losing Sadie. It took years for him to understand her grief.

“She always told me ‘No, you don’t know how I feel because you haven’t experienced that loss,’” he said. “Unless you’ve experienced loss, especially the loss of a child, you can’t know what they’re feeling.”

Every year, the Johnsons celebrate Sadie’s birthday and memorialize her death day.

They have good times and bad times. The milestones are the hardest — five years, for when Sadie would have started kindergarten, 10 years, when she’d have made it to double digits, 18 years, for what would have been her high school graduation.

Natalie Johnson goes through a rollercoaster of emotions because of her loss: sadness, anger, numbness, jealousy, regret, guilt, shame.

For a time, she turned to drugs and alcohol to treat the pain. Then she found the self-therapy of writing her memoir.

“Parents are not supposed to bury their children,” Dexter Johnson said, “but so many do every day.”

Though it’s not terribly common in the United States — about 10,000 children between the ages of 1 and 14 died in 2018 — the horrific potential for childhood mortality looms large.

Johnson is a grandmother now. Natalie and Dexter have been married for 20 years. Together they raised three children, and now have three grandchildren.

Natalie’s mom hasn’t yet found the strength to read the book, but her husband has.

“I’ve learned that she is stronger than she admits she is and that she leans on me more than I realize,” Dexter Johnson said. “I always thought I was no help.”

Natalie Johnson said she hopes her book will help mothers and fathers also grieving the death of a child.

“This was my chance to give back,” Johnson said. “To communicate through Sadie’s story that (parents) should never grieve alone … that the pain never fully goes away, but it does get better over time.”

Sara Bruestle: 425-339-3046; sbruestle@heraldnet.com; @sarabruestle.

If you stream

Everett author Natalie Johnson worked on her memoir for 15 years. Johnson will read from “An Angel Named Sadie” at 6 p.m. Oct. 13 via Zoom. Johnson lost her newborn named Sadie when the new mother was just 19 years old. Hers is a story of grief — but it’s also about how a 3-month-old child with a faulty heart would inexorably alter the author’s life forever. Email nmjandddj_06@yahoo.com for the Zoom link.

“An Angel Named Sadie”

By Natalie Johnson

Amazon. 49 pages. $17.