DENVER — There is nothing routine about love, but it's in those "everyday" moments when it tends to grow. Mariah Gillaspie could attest to that. Her voice filled with warmth the minute she walked in to wake up her two daughters.
"Good morning, Abby," she said. "Are you ready to get ready?"
Abby, 4 years old, squirmed in her bed as her mother gently touched her arm before doing the same with 6-year-old Emma.
"This is Emma," Gillaspie said out loud. "I’m going to start with your shakey, shakey."
"Shakey, shakey" is a purple vest Emma wears every morning to help loosen the mucus. Her sister Abby wears it after.
The girls have a genetic disorder that doctors didn't previously know existed. When Emma was born, doctors thought her condition was random, until her sister Abby came along and they realized it was an ultra rare genetic disorder.
"They are actually the only two people we've found in the world that have it," Gillaspie said.
"I always say Abby came along to help Emma find the genetic diagnosis that can hopefully lead to finding treatment for them and other kiddos and other families being diagnosed with this disease," Gillaspie said. "They are the rarest of the rare. I always say I won the lottery but don't get the money."
Instead, Gillaspie landed a lifetime of learning a new kind of love.
"I am not a trained physician. One of my colleagues at Family Voices likes to say I have a M.O.M. degree," Gillaspie said with a smile. "Which is a pretty good degree to have."
Family Voices Colorado supports parents of children with special needs to find the right resources. Gillaspie said finding that support system has helped her a lot as a mother and caregiver.
In the Gillaspie household, love is 90 minutes of medical care before 10 a.m. in matching Valentine's Day pajamas.
"We have to add bows because we are a bow family," Gillaspie said with a laugh. "I've definitely learned a lot and adapted to a lot with these girls. They've taught me to be a much stronger person in many ways."
Strong is an understatement, as Gillaspie carried her daughters down the stairs to get their day started. In a home where syringes replace sippy cups, this family's journey is unlike most others.
"Both my girls are nonverbal, but that absolutely does not mean they're non-communicative," she said as she wrote Valentine's Day cards with her daughters. "My heart completely leaps out of my chest just from her eyebrows raising and her eyes opening, and I see that that is her way of saying she's excited."
"Caregiver" is a title Gillaspie said she never expected. Now it's one she wouldn't give up.
"You have to do everything to keep them healthy, to keep them happy. You’re sacrificing so much of yourself and your time, and you do it because you love somebody," she said. "It is a form of love that people maybe don’t realize what goes into it, but your whole heart, your everything goes into it, and it’s definitely a whole life experience."
With no prognosis, it's unclear how much time Gillaspie will have with her two girls. What she does know is that they don't need a holiday to feel love.
"Just because their life is different and their needs are different doesn't mean they're not surrounded by love and full of love and deserving of love and giving of love," she said. "I hope people are able to see a difficult journey and realize that it is so still so full of so much love."
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