A mother’s grief is powering new center for NC families with dying children

Charlotte Observer - 12/27/2021

Little 3-month-old Mitchell Turner’s hair was still wet when his mother noticed bruising on his legs while changing him out of his baptism gown.

It seemed unusual to Meg McElwain, but she remembers thinking it was due to the church being cold.

It was still bothering her the next morning, though — enough to call her pediatrician.

“You need to come to the hospital right now,” she recalls the doctor saying, voice tight.

That day, in 2012, McElwain’s family went to the hospital and her baby, “Mitchie,” started a nearly 2-year fight against leukemia.

“This was my 3-month-old baby. My entire world was turned upside down,” McElwain said. For the first two months of his diagnosis, McElwain spent almost every hour with her son at the hospital.

“There was no time for me to do anything but put one foot in front of the other. All I could think about was getting to the next step.”

Now McElwain is helping other families through that journey, too. And her organization is expanding to open Mitchell’s House — where her son’s legacy can live on.

Mitchell’s story

After her son’s diagnosis, McElwain’s life rolled to a stop.

Everything — her thriving marketing business, her friendships, relationships with the rest of her family — had to be put on pause. Doctors told McElwain that Mitchell would be in aggressive treatment for 2 years.

She repressed her emotions — as a mother, she knew Mitchell and her older son were looking to her. People kept telling her how strong she was, but to McElwain, there was no other option.

Many times, McElwain wouldn’t leave the hospital for days on end. Looking back, it was traumatizing.

Mitchell’s medicines made him scream for days, and the chemotherapy burned his skin. All she could do was sit with him, and tell him that it would all be okay.

And slowly, it finally seemed that it actually might — Mitchell was responding well to treatment.

Months passed, and McElwain’s hope grew.

“But then he relapsed, right before the two years were up,” she said. “I knew then that my baby was fixing to die.”

He died on Palm Sunday in 2014. He was two years old.

“When I walked out of the hospital without my child, my fear of just about anything in the world went away,” she said. “I had faced the worst.”

But some of McElwain’s worst days were ahead.

The darkest days

She describes it as the darkest time of her life, the first year without Mitchell.

“I literally laid in my bed under the covers in silence,” McElwain said. “I got my living child ready for school, and then I’d get into bed and just lay there. I didn’t always have the energy to cry. My body hurt with this deep weight and pain, like deep in my body.”

By the time the first anniversary of Mitchell’s death came around, McElwain’s marriage was in shambles. She was on antidepressants, but she just wanted the pain to end.

Finally, she called a mental health facility and asked for help. She was hospitalized for suicidal thoughts.

McElwain separated from his husband, and the next year, she got a divorce. That’s when McElwain said the clouds started clearing.

She still hits bumps when his birthday comes around, or the anniversary of the day he died, but the “weight is not as heavy as it used to be.”

When a family goes through trauma and grief, it bleeds into every other aspect of life, too. Almost one in five marriages end in divorce when a couple loses a child.

“When a family is diagnosed, whatever is happening in their home, that’s only going to be magnified by the stress of the sick child,” she said.

And McElwain started to worry about her older son, Frank, who was three when Mitchell was born.

“In the first few weeks, his daycare teachers said they’d watch him on the playground go off to himself and just stare,” McElwain remembered. “He was really trying to process it.”

After Mitchell’s death and the divorce of his parents, Frank started having outbursts, because he wanted to tell people about Mitchell and didn’t know how, McElwain said.

But therapy and a new school environment changed everything.

“A lot of people think since they’re a child, they’re not going to remember it, but it impacts kids in different ways,” she said. They reached out to the school counselor, too.

And McElwain has since been dedicating her time to making sure other families have those resources to help them navigate the grief process, too.

Filling the gap

McElwain started Mitchell’s Fund right after her son was diagnosed.

Lots of people wanted to donate to Mitchell’s treatment, and McElwain said the family just didn’t feel right taking the money when there were people who needed it more.

Originally a donor-advised fund as part of the Novant Health Foundation, it’s since become an entity of its own. The fund has helped over 300 families with children with terminal diagnoses receive needed counseling services, make their rent or mortgage, and pay for treatment.

But now, she wants to expand.

Mitchell’s Fund will officially become Mitchell’s House on Feb. 27 — Mitchell’s 10th birthday.

A new facility, which will be located in uptown in the Charlotte National building, will be a refuge for families that have a child with a terminal illness, with therapy and counseling for the whole family — especially siblings. Services begin in March.

Mitchell’s House will have two therapists on staff who focus on child-focused art, play and talk therapy sessions to help young children learn to cope with the changes and feelings they might be experiencing.

McElwain wants to create a community that supports each other in this underserved space — she said there’s a gap between a diagnosis and death, and Mitchell’s House will fill it.

“Mitchell was never terminal until the end,” she said. And a lot of facilities don’t provide services until after death.

April Robson remembers that liminal space well.

It was July 2018 when her 2-year-old daughter Charlotte was diagnosed with a terminal illness. That same week, someone from Mitchell’s Fund came to their hospital room with parking and coffee vouchers.

Robson’s daughter died six months ago, but she said McElwain’s organization was there for her family every step of the journey.

“Even though this is an amazing city, we couldn’t really find resources to help us with a child who was severely terminally sick but who hadn’t passed away,” Robson said. “We were sort of in this weird middle purgatory.”

Through Mitchell’s Fund, Robson’s family got personal counseling, marriage counseling and children’s play therapy, and they never saw a single bill.

“When I think about Mitchell’s House and what it’s going to look like, I’m envisioning a haven,” Robson said. “When you’re faced with terminal illness, you can just hear the clock ticking for one of your children. I’m imagining that Mitchell’s House is going to be families’ safe space that they need during that time.”

Kiley Thiel, a licensed clinical mental health counselor supervisor, is helping establish the clinical and therapy side of Mitchell’s House.

The longtime grief counselor said young children communicate through play and need that outlet to express feelings they don’t have words for yet.

“Grief also comes from any sort of changes, not just death. Children can witness a sibling go through changes, or there are changes in parental time they get, or new people start coming into the home,” she said. “Having a space like Mitchell’s House gives them a safe space to express the worries that they feel.”

McElwain still tenses up when she hears a baby crying. If it’s in public, she sometimes has to get up and leave the environment because she shuts down — she remembers Mitchell’s cries.

“But every day it’s gotten a little bit easier,” she said. McElwain hopes Mitchell’s House makes it easier for other families, too.

In a mental health crisis? Here’s where to get help in Charlotte, NC and beyond.