Sometime this Saturday, the Weaver family will stow the last of their luggage under the 42-foot-long Winnebago parked in front of their Cornelius home, fire up the engine, and pull away for a month-long trek across the United States.
Their most precious piece of cargo will go right up front, propped against the windshield: an 8-by-10 canvas photograph of Natalie and Mark Weaver’s oldest child, Sophia.
It’s the best way they could think of to bring her with them on this journey.
Sophia died May 23 at the age of 10. In the photo, taken just weeks before her death, Sophia seems to smile from her eyes, her shoulder-length hair drawn up into a high bun like so many 10-year-old girls.
Sophia was born with deformities of the face, hands and feet and a degenerative neurological disorder called Rett’s Syndrome, which affected her ability to speak and move.
Earlier this year, her parents knew their time with Sophia was drawing to a close, and they spent months planning what they believed would be her biggest and final road trip — one in which she would take in the vastness of the American west, visit family in Colorado, and connect with well-wishers who have been following her mother’s advocacy on social media.
They didn’t imagine they would be boarding the RV without her.
‘I’m going to fight for her’
To tell the story of Sophia, we must go back to the beginning, when Natalie Weaver was 34 weeks pregnant with her first baby.
She’d done everything right for seven straight months: cutting sugar from her diet, eating only organic foods. Tests and ultrasounds showed nothing amiss, but Weaver had struggled throughout the pregnancy with a nagging feeling. Something’s not right.
At 34 weeks, her obstetrician agreed to an ultrasound to calm her nerves. The technician immediately called for a doctor.
Sophia was born four weeks later, with six medical staff in the room. She was whisked to the side as doctors assessed the deformities of the baby’s face, hands and feet — some they had not seen in the ultrasound.
Doctors placed Sophia on her mother’s chest just long enough for Natalie to get a glimpse of her daughter. As she reached out her hand to comfort the baby, Sophia was rushed out of the room to the neonatal intensive care unit.
Fear gripped Natalie Weaver the first time she visited Sophia a few hours after the birth. But the moment she held her in her arms, the rabid love of motherhood took over.
“In that moment, it was like, ‘This is my baby. I’m going to fight for her. I’ll do whatever it takes for her, no matter what.”
Gaining a following — and internet trolls
The no-matter-what of parenting a child with profound disabilities became more than Natalie and Mark Weaver would have ever imagined.
The couple quickly realized how unkind the world can be to people with severe deformities. Strangers in public were afraid to look at their daughter. When young children would stare and point at Sophia, their parents would shush them and hurry them away instead of striking up a conversation.
And as the years went by, caring for Sophia became even more medically challenging.
At age 1 she could no longer sit up or sing the words to simple songs. She was diagnosed with Rett Syndrome, a condition unrelated to her physical deformities, that robbed her of her speech and motor functions.
Sophia endured dozens of hospitalizations and a life surrounded by medical equipment, round-the-clock nursing care and medications that made her drowsy.
The Weavers had good health insurance through Mark Weaver’s employer, Microsoft, but about three years ago, Natalie Weaver became incensed at a proposed change in Medicaid that would cut funding for the severely disabled.
Natalie Weaver spoke on Capitol Hill and took to social media to advocate for both funding for and acceptance of people with severe deformities. She launched “Sophia’s Voice,” a nonprofit that works to help people with chronic illnesses and disabilities get medical care.
Through her advocacy, Natalie Weaver won supporters by the thousands. But she also became the target of internet trolls.
One Twitter user included a photo of Sophia in a tweet, calling her “the poster child to abort bc she’s disabled,” and repeatedly called out Weaver on Twitter, saying her daughter “will live a miserable life and be a burden on the family and society.”
Natalie Weaver complained repeatedly to Twitter and asked her followers to do the same. The social media platform eventually apologized and changed its reporting tool to include disability when reporting hate speech. Company leaders have asked the Weavers to visit Twitter’s Boulder, Colo., offices when they drive through the state later this month.
As Sophia grew, so did the Weaver family. They had a son, Alex, now 9, and another daughter, Lyla, now 5.
Sophia’s 29th surgery late last year nearly killed her, and Natalie and Mark Weaver decided that Sophia’s body was sending a message: I’m tired. In January, they turned to hospice care and phased out major medical interventions.
And with that freedom, Natalie Weaver hatched a plan of giving Sophia the gift of experiences she could never have tethered to the ropes of constant medical appointments, procedures and drugs that spaced her out.
Natalie Weaver called them “Sweet Sophia’s Adventures.” There were trips to the roller rink, the hair salon, the movie theater, Atlanta’s Georgia Aquarium — all of which opened their doors to the family during special, private hours.
When Weaver tagged President Barack Obama in an Instagram post of her and Sophia in front of Obama’s portrait at the Mint Museum, the former president posted a reply in support of Natalie Weaver’s efforts.
The biggest adventure the Weavers had planned was the trip west in the handicapped-accessible RV, loaned as a gift by the Winnebago company, bearing the name and hashtags for Sophia’s Voice.
Mark Weaver planned the itinerary down to the minute. Four nights in Colorado with family. Salt Lake City. The Grand Tetons. A personalized tour of Yellowstone, given by the director of wildlife who’s become a supporter of Natalie Weaver’s on social media.
Sophia would be at the center of it all.
‘The hardest thing to do’
The Weavers knew that stopping medical interventions meant that their daughter may not live as long as she would otherwise. But they didn’t expect the end to come when it did.
“In my mind we had at least a year,” Natalie Weaver says.
On Friday, May 17, they noticed that Sophia would start gagging when being fed through her feeding tube. The next morning she woke with a fever and heavy breathing.
“But each day (after that) she didn’t get better,” Natalie Weaver says.
They feared Sophia was suffering from an infection in her abdomen, where she’d been operated on months earlier. They started Sophia on strong antibiotics, breathing treatments and steroids.
By Wednesday, the Weavers knew the worst was likely upon them.
“We had that moment where, ‘Do you take her to the hospital? What’s going to happen if you take her to the hospital?” Natalie Weaver says.
“The last people she would have seen would have been doctors and strangers and she would have been cut open and she would have had a tube down her throat and I would have gone back on my promise to her,” Weaver says. “And I never would do that, even though it was the hardest thing to do.”
The family spent Wednesday taking turns holding Sophia: Natalie and Mark, Alex and Lyla, Natalie’s parents and sister and nephew, who all live nearby.
“At one point we all had our hands on her, and she felt that love,” Natalie Weaver says.
Just after 10:30 p.m. on Thursday, May 23, Natalie changed Sophia’s diaper and laid down beside her daughter. She pulled the covers over them and rubbed Sophia’s leg. Sophia’s breaths were getting shallower and farther apart.
Natalie Weaver called for the rest of the family to come. Everybody was in the room when she took her last breath.
Natalie laid with her daughter for a few minutes, and then, in a response she still doesn’t understand, she jumped from the bed and fell to the floor, where she wailed, unable to move, for an hour.
“My strength left me the moment she took her last breath,” Natalie Weaver says.
The first weeks were like “living in a nightmare,” she says.
For Mark, every 10:35 p.m. still brings heartache.
“That’s the time. It’s been a day. It’s been two days. It’s been a week,” Mark Weaver says. “You just keep thinking about that time.”
What would Sophia want?
Barely eight weeks have passed since Sophia died, and the family’s grief is still fresh and raw.
Tidal waves of sadness bring the couple to their knees on a daily basis, but packing up their pain and taking their story — Sophia’s story — on the road feels like the right thing to do.
Last week, the couple got a preview of what driving cross-country will be like, when they drove the RV from the Winnebago headquarters in Iowa back home to Cornelius. Natalie watched as fellow drivers looked up the #SweetSophia and @Sophias_Voice tags on their phones and gave them waves and thumbs-up.
Followers on social media begged them to stop in their towns to meet them. On this month’s trip out west, they will.
On a recent morning less than a week before departure day, Natalie and Mark Weaver sat in their airy family room beside an urn filled with their daughter’s ashes.
“We try to think about what Sophia would want,” Natalie Weaver said.
They walked outside and up the steps of the RV, which Natalie, an artist, has decorated to look like home.
As they drive, they’ll think about where Sophia would have slept and sat in the Winnebago if she were with them, and how much she would have loved all the scenery and faces she’d have seen along the way.
And each time they get to a new place and head off for a new adventure, they’ll bring Sophia’s photo down out of the RV, and snap a photo, and think about their little girl who, even in death, is still inspiring a movement.