Lizzie
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 was universally adored in our house, school and community.”
“Lizzie could turn your whole day around with a grin or a giggle,” says Mom Emily. “She was wise and taught us all so many things that we never would have learned without her.”
Lizzie needed round-the-clock medical care and was frequently hospitalized with pneunomia and other complications from her condition. She required several checks in the middle of the night. "It was a newborn sleep schedule for 8 years and we were exhausted,” Emily explains.
Finding a Home at Crescent Cove
Once Crescent Cove opened in 2018, Lizzie began coming to the Home for respite care. “When Lizzie was receiving respite care, we were able to focus on our other children instead of dividing our time,” Emily explains. “Knowing that caring and loving professionals were doing her bath, meds, and her stretches was such a relief.”
“Parenting, loving, navigating life with a child like Lizzie is heartbreakingly difficult. The world wasn’t made for her. We didn’t fit into a ‘normal’ family mold. Crescent Cove was made for her, for us. At Crescent Cove, we found a home.”
At age 8, during one of many hospitalizations in Lizzie’s short life, her condition took a turn for the worse. The family could not move her because they needed the hospital’s resources should she recover. Unfortunately, Lizzie did not improve and she passed away at the hospital. “We wished we had been at Crescent Cove,” Emily says. “Her siblings needed room to decompress and run around. We needed more family time. It could have been less traumatic.”
The family was able to have a special vigil at Crescent Cove to honor Lizzie and later placed a brick in the memorial walkway at the Home. They are frequent guests of family events at the Home and return frequently to visit and honor Lizzie.
“Crescent Cove fills a desperate need that I hope no one else ever has, a place for your child to die,” says Emily. “It’s unbearably sad…and it’s necessary. Families like mine need the support of Crescent Cove.”
