When Devora Eisenberg had her first child in 2003, there were no signs of any problems. She was thrilled with her healthy and happy daughter, Rose. Then, at 3 months old, Rose had a seizure.
Soon, Eisenberg learned her little girl has a severe form of epilepsy called Dravet syndrome, known for frequent, sometimes lengthy seizures and developmental delays.
The process of caring for Rose and the emotional upheaval that came with her baby’s diagnosis was more than Eisenberg ever imagined she would have to bear. Rose required a near constant level of care including help with feeding. Eisenberg and her then-husband even took shifts to watch Rose while she slept. “We were in chronic crisis mode,” Eisenberg says.
There were joys within that time, she adds, but the strains of caring for her daughter, her own work and school schedules and the demands of home and marriage left her “bone dry.”
As Eisenberg met other mothers of chronically ill kids, many at Boyer Children's Clinic in Seattle where Rose received care, she realized they felt as exhausted as she did.
“The world becomes so hyper-focused on the care and development of your child,” she says, noting how a mother’s own life can lose balance with her needs, health and friendships suffering. To help correct that, Eisenberg and several other moms began meeting once every two weeks in the evenings to share their stories, cry and laugh together.
A helping hand
Moms to Moms is structured similar to Program for Early Parent Support (PEPS) groups and currently has about 60 members. Open exclusively to mothers who have recently learned that their child has special needs such as autism, Down syndrome or cerebral palsy, Moms to Moms aims to give mothers some much-needed, much-deserved attention.
“Everybody’s on your team but it’s always child-focused,” says Eisenberg of caring for a child with special needs. “This is a huge need that’s not being met ... We often forget that a child’s well-being depends upon the entire family.”
Everybody’s on your team but it’s always child-focused ... We often forget that a child’s well-being depends upon the entire family.
Once a new mom joins — typically by word-of-mouth referral — she's placed into a small group of five to eight women, who meet regularly. The broader organization Moms to Moms often hosts guest speakers for larger gatherings and has a private Facebook page for moms to chat online.
There is no requirement or set format for meeting; Moms to Moms members can interact however they choose, providing much needed flexibility for families who are often juggling health and therapy appointments among other commitments. Moms can bring their kids to meetings, which often happen in other members' homes.
No matter what, the goal is to provide a connection. “It's more about the journey than the specifics of your child’s condition,” Eisenberg says. Moms to Moms is a safe place for moms to talk about issues that can be heartbreaking and which others may not understand.
Sometimes that means discussing isolation or depression. Many new moms share their feelings of an ambiguous grief that comes with raising a child who is not as healthy as hoped.
The other side of that grief is the joy of hitting a milestone that parents of children without special needs may never have noticed — like seeing your 4-year-old learn to walk after debilitating illness. “We see what these kids can do, not what they can’t and it’s amazing,” Eisenberg says. She adds that support group members celebrate “the whole village behind these kids that got them there.”
For more information about Moms to Moms Seattle, please email seattlemoms2moms@
rocketmail.com or find them on Facebook.
In 2015, Eisenberg handed the reigns of the group over to Karen Rio, who works for Boyer Children’s Clinic. Rio is also a Moms to Moms member; her youngest, Ella, has a rare genetic disorder and autism. “I realized early on that we were on a very different journey with Ella,” Rio says.
Rio found her ties to friends and other parents who weren’t dealing with similar issues hard to maintain. “There is a subtle alienation that happens,” she says. That, she adds, is what makes Moms to Moms so powerful.: The other women you meet know exactly what you’re dealing with and understand what kind of help you need.
“You can never have enough support," Rio says, noting how important that is not just for Mom but for all involved. "Your ability to grow a support network is vital to the health of the entire family.”