NORFOLK, Va. — Editor's note: This story is a part of our "Making A Mark" series.
Over the last several years, Susan Geoghagan discovered a metaphorical connection to flamingos.
"When they have their babies, they lose their color. They lose their pink, and they turn white and grey," she said. "And as the babies age and become more independent, the mama, dada, and even foster flamingos start to get their pink back."
The process symbolizes the kind of restoration Geoghagan hopes to give to others. It's also what led what led her to rent a big, pink house where people could come and find comfort. She nicknamed it The Hideaway.
"This house is magic," she said. "This is exactly where we're supposed to be."
Geoghegan decided the waterfront home is a perfect headquarters for her nonprofit, the Apricity Hope Project, which supports the parents and caregivers of medically complex and disabled children.
"Apricity means the warmth of the sun in the winter," she said. It's another symbolic message that Geoghegan uses to convey the purpose of her nonprofit.
"This can be a cold, dark, isolating season for caregivers and parents who thought they'd be living a different life than what we were handed," she said. "So, Apricity Hope Project wants to be the light, be the warmth for these caregivers during this hard season."
Geoghegan also noted that the warmth they need isn't from the sun but from the community, and she knows firsthand just how important that warmth can be during the journey as a caregiver.
"I was blessed with [my daughter] Lorelei, who came in like a wrecking ball, several months early with a slew of medical complexities. She spent 77 days in the NICU. And halfway through that stay, we were told that we weren't just preemie parents. We were medically complex, rare disease parents," Geoghegan said. "Lorelei had FBXL4 Mitochondrial Disease, and she was the 31st documented case [in the world]."
"They told me that [Lorelei] would never walk, talk, or eat by mouth, and that it was a 25 percent chance of any future children also having this disease," she said. "In 2019, [my son] Benji was born. He, too, has mitochondrial disease."
The severe condition affects multiple body systems, primarily the central nervous system, heart, and liver. It is characterized by brain dysfunction and muscle weakness.
Geoghegan was told to expect Lorelei to have a life expectancy of two to five years. Lorelei tragically passed away on July 7, 2021, at five-and-a-half years old.
Benji turned five on June 24. Geoghegan said his disease is progressing, but he's been on a trial medication since he was born.
Geoghegan said she and her family have spent much of the last several years at hospitals and in doctor's offices, but they've received support from family and friends since the children were born.
"I would have people messaging when we were admitted saying, 'Can we drop off pillows and coffee and whatever you need?'," she said.
But when Geoghegan noticed that other parents and caregivers at the hospital didn't have the same type of support that she and her husband Michael received, she created programs and services through her nonprofit designed to assist and empower them.
"Shortly after Lorelei passed, I lost my marketing job. And I had started a podcast in 2020 called When Autumn Comes... And we rolled the podcast into one program of AHP," she said.
The podcast, which recently released its 100th episode, caters to mothers of medically complex and disabled children and shares stories of hope from special needs families.
The nonprofit also makes up go bags, filled with essential items, for parents who often spend days or months at the hospital with their children, likely at a moment's notice.
"We now give them to CHKD so that they can give them to parents who are in the PICU. We've also given them to Edmarc," Geoghegan said. "We also do caregiver packages that we send out seasonally."
Apricity Hope Project's programs and events bring caregivers together, so they don't feel so alone.
"We have approximately one retreat a month... Moms from all over coming [to The Hideaway] and spending four days," Geoghegan said. "In April, we had 300 campers come out to Holiday TRAV-L Park [for Camp: Hope Full], and we camped, and we raised money."
But some caregivers, she said, actually prefer to just have time to themselves. And that's okay, too.
"Caregivers live a life of hyper-vigilance. We're constantly waiting for the next shoe to drop. We're constantly waiting for the next phone call from the hospital," Geoghegan said. "We have a little beach area [at The Hideaway] where they can go and sit and be alone... to be able to take down those walls of hyper-alertness."
The nonprofit also hosts fundraising events, including Float for Mito Cure and its annual Halloween Party.
She hopes the group serves as a source of strength for caregivers so they can continue to be strong for their children.
"Our goal is to help refill their cup, metaphorically and literally. Like, take care of the caregivers the way that they take care of their kids," Geoghegan said. "In order to help caregivers like me get their pink back, we have to teach them how to take care of themselves, too."
You can support the Apricity Hope Project by making monetary or in-kind donations, becoming a business partner, and volunteering for the organization. Geoghegan said community support is critical for AHP to continue and for caregivers to keep getting the support they need.
"The caregiving community is often overlooked because there's so many nonprofits for our children, which is wonderful. As a medical mom, a local medical mom, I am so grateful for all of those organizations," she said. "But the parents and the caregivers are often lost in that story, and it's so incredible that people are starting to see my community."
For more information about Apricity Hope Project, visit the nonprofit's website, Facebook, and Instagram pages.
Geoghegan is also asking the community to perform random acts of kindness on Love Like Lorelei Day, July 7. The day marks three years since Lorelei passed away and honors her positive personality that made so many people smile.
Click here to learn more about Lorelei and Benji.
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