Mom and Dad have a daughter, P, after many years of Mom wanting a girl. She's been collecting frilly dresses and nursery decor for years hoping God will answer her pleas. P is born underweight, jaundiced, and lethargic but she perks up over the next few days and by month 2 she's on track with her cohort. She hits all her developmental milestones on time or early but she seems to get sick a lot. They frequently have to take her to the ER in the middle of the night with fevers and rashes, screaming in pain, only to have the baby wake up a few hours later feeling fine, and they have older boys so they know this isn't normal baby stuff. This goes on for months with ER trips and hospitalizations and all kinds of tests. Finally she's diagnosed with a rare autoinflammatory disease and started on appropriate treatment. It works but when they send P to day care she starts picking up kid infections that send her back to the ER. Mom has read the Googles and learned that any infection could send this diseases into a spiral that kills P, so she's pulled from daycare.
At 5 she's declared totally in remission, so they decide to enroll her in kindy. She does great for the six months school is in session before covid shutdowns. Mom becomes obsessed with covid, absolute covid Karen screaming at people walking down the street that they're murdering her baby, there's literally no excuse to ever leave the house, how dare you, obsessively posting the virus stats for her city, posting videos of P saying "I'm who you're killing when you don't wear a mask!" During this time P is doing Zoom school and making friends with her classmates. When they start going back to school she wants to go too. Mom finally decides it's okay to send her back after P is vaccinated.
The day before school starts, Dad has a medical emergency that requires a 911 call and an ambulance ride; he's hospitalized with no answers for several days. Against this background, P starts complaining of new-onset vision problems (double, blurred, behind-the-eye pain, visual processing issues) while at school. They rule out her disease coming back, brain tumors, MS, a stroke, and dozens of other scary things. But by now it's summer and she's feeling better, so they figure it was migraines or some passing thing and she's fine now.
Weeks before the new school year starts she gets covid and is very sick, but survives without a flare of her inflammatory disease. Immediately after the school year starts she's having new symptoms. Her legs collapse under her one day and from then on she can't walk. Mom starts dragging her to doctors who rule out the scary options then tell her it's FND brought on by anxiety and making a big deal about it won't help her get better. Mom insists it has to be a neurological disorder induced by her recent covid infection and starts posting Long Covid infographics. She also starts obsessively documenting P's symptoms. She gains a large audience of weird facebook moms who are constantly suggesting new diseases it might be: PANDAS, POTS, GBS, EDS, chronic lyme, that Brain on Fire disease. She brings them all up to doctors and every doctor says no, it's FND and it won't get better until they start complying with treatment.
One day P wakes up unable to talk. This should have been the wake up call to mom because she works with speech disorders and understands that what the child is doing makes no sense: she can mouth words clearly, her tongue and mouth articulate the words silently just fine. She can swallow, hum, and spontaneously vocalize if she's hurt or surprised, and when something strikes her funny she laughs out loud, and she whistles to get attention, but she can't speak. Doctors and now her SLP colleagues say it's still FND, now with a healthy serving of the child realizing this gets her attention and Mom just needs to ignore it until P gets bored. Instead she buys her a brand new iPad with AAC software to prolong the issue. She buys a secondhand suspension gait trainer meant for a much smaller child, inadvertently giving away that P has full control and strength in her legs. She posts videos where P is behaving normally until she sees the camera and suddenly slumps over or starts moving spastically. The absurdity hits a peak on Easter when P walks downstairs and, clear as a bell, sings "Amazing Grace" and mom just happens to be there with the camera ready to film this tiny temporary miracle.
Meanwhile P gets whatever the fuck she wants because she's sick. She's been pulled out of school again and gets to spend her zoom classes with her beloved dog on her lap, gets taken out for special lunches, they renovate her bedroom to make it wheelchair friendly (and also make it match her personality instead of the fluffy pink princess mom wishes she was), whatever she wants she gets. Even a pet rat she's wanted for years even though mom is terrified of it when it first gets home. Anyone who isn't a prayer hand emoji facebook mom sees what's going on.
The reason I found her was someone sent her to me when she was openly fantasizing about stopping P's medications so that she gets so sick she will have to be hospitalized, then they can work on getting this mystery condition diagnosed. Instead P "stops eating" and loses a ton of weight so they hospitalize her. Mom's demanding a huge workup and a feeding tube. When mom's in the room P retches and spits food back out but when mom's gone and she's presented with food she likes, she eats. Scope shows nothing. Mom finally travels across the country to get her diagnosed with chronic lyme and on treatments that make her sick, antibiotics and "detoxes" and a crazy restrictive diet and all kinds of woo supplements. They're talking about central lines. Mom buys P a bunch of stuff to reinforce the sick role like dolls in wheelchairs and starts getting lyme truther moms posting about her selfless brave journey to get her child properly diagnosed in the face of medical gaslighting.
But there's a happy ending here. Dad's scary health situation happened again, a scan showed a mass and he was told it was almost certainly cancer. It was not, the mass was totally benign and removed without issue, and in the aftermath they decide to buy a rural property and move there. P's now totally homeschooled, her symptoms are gone, she spends her days camping, fishing, and joined an airsoft marksmanship club, all with other kids her age with not a mask in sight. Mom still refers to her as a lyme warrior or whatever but only in the past tense and it seems the only treatment she gets is the one for the real disease.
