COLORADO SPRINGS — She was born full term at 4.5 lbs with no heartbeat. Now Faith Moser is 12 years old and thriving in her 6th-grade year. While crocheting a hat, she tells me, "I have a little crush." Faith is a lot like any pre-teen but has more going on behind the scenes that make her unique from other kids her age.
Faith is up long before her classmates so she can take care of her medical needs before school starts. Kati and Daniel have spent years navigating their daughter's feeding, sleep, and growth complications. Faith suffers from a very rare neurological condition that does not signal her gastrointestinal tract to move through her body as it should. More children with this condition are coming forward every year, but as of 2020, Faith was one of 30 kids in the nation diagnosed with the condition.
Little is known about the disease which means the Mosers spend a lot of time figuring out what is next. Between appointments, conversations with insurance companies, and medical procedures, it is hard. Through the playful laughs and tears of the unknown, it is clear Kati takes it all in stride, but being the primary caregiver comes with the risk of burnout, "We just want to give her everything and we are in a good state for that. Colorado has resources that most other states don’t and they're so wonderful, but they're for your kid. There are therapies for your kids, retreats for your kids, programs for your kids, but there is not much for the primary caregiver which 90% of the time is the mother."
Nineteen research studies have identified parents of children with disabilities to have an increased risk for depression (95%) and anxiety (90%). The divorce rate is over 85% for parents of children with a disability.
That's where Labeled & Lovedcomes in. The non-profit, created by four strangers whose lives intersected because they simply loved and cared for someone with a label, is on a mission to embrace and strengthen families with disabilities. "Within our own, we've witnessed the isolations that can occur when life doesn't go as planned following a child's diagnosis. We also know the beauty of how connecting with others changes everything."
Labeled & Loved is putting on a retreat in Colorado Springs for mothers of children with any disability or special need. The three days have been carefully curated to empower the women and combat the statistics all while relaxing, having fun, and most importantly finding community.
A community that benefits kids like Faith who, as Kati puts it, give the best perspective on life, "You’re looking through the lens of a kid who doesn’t look at life like most of them do, and you’re realizing that the little simple things that she accomplishes are bigger than anything that you know I will ever accomplish."
Theretreat takes place October 13-15 at the Cheyenne Mountain Resort. Registration is still open and you can also donate to help someone you think may benefit from this.
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