With four children ranging from age eight to two and a husband who travels for work, most moms would call their life “frantic.” For Emily, frantic took on a new meaning when her second child, Lizzie, was born.
Lizzie was diagnosed with Pallister Killian syndrome, a chromosomal anomaly, at 4 days old. She spent a month in the NICU before coming home; doctors told her family to make her comfortable and enjoy their short time with her.
A Fierce Spirit Defies Odds
Despite doctor’s predictions, Lizzie survived. “I like to think Lizzie liked us so much she decided to stay,” says Emily. “Lizzie is universally adored in our house, school and community. To know her is to love her.”
Now six years old, Lizzie has a host of health problems that require round-the-clock care. She cannot sit, stand, walk, talk, feed herself or care for herself and is dependent on her family for everything. She often has bouts of pneumonia that require hospitalization a few times a year; each time, her family braces for Lizzie to not come home.
“In Lizzie’s crisis times, it’s all I can do to put one foot in front of the other,” explains Emily. “Then we learned about Crescent Cove.”
Supporting a Family
Through Crescent Cove, Emily’s family receives services not covered by insurance that support the entire family. The children and Emily receive massage and music therapy in their home, and have a yoga instructor teach the children techniques so they can manage their emotions, an important skill in a home that can be stressful at times.
Through a support group Crescent Cove facilitates, Emily and her husband connect with other parents who are facing similar challenges. “It’s a safe place to share big feelings, to figure out how to stay connected as a couple in circumstances like ours,” Emily says.
“For those of us who have children with shortened life-expectancy, Crescent Cove helps us know that our kids matter, their lives matter and their deaths matter,” Emily says. “I am grateful to those who support this mission for families like mine.”