Precious Three Years of a Life that Changed a Family Forever

Brooks enjoys a pontoon ride during his one respite stay at Crescent Cove.

Brooks was the second child of Chelsea and Andrew, and they were excited to welcome a boy into their growing family. Shortly after he was born he began to have seizures and was diagnosed with a rare genetic disorder called SCN2A. Doctors told them that Brooks would likely never walk or talk.

“We were devastated,” recalls Chelsea. “The life we envisioned for our son was gone. Instead of football games and baseball practice our future now consisted of endless doctor appointments, therapies, medication trials, surgeries, and a lifetime full of worry.”

Chelsea and Andrew never imagined themselves being the parents of a child with special needs and threw themselves into the role, determined to give Brooks the best life possible. They became his physical therapist, occupational therapist, respiratory therapist, nurse, and more.

“We were honored to do this. It was beautiful, fulfilling…and totally exhausting,” Chelsea remembers. As Brooks got older, his condition became more difficult to manage, which meant adding more specialists to his care team.

"We were drowning. We needed help, and Crescent Cove was a life saver thrown to us when we needed it the most," says Chelsea.

Chelsea and Andrew were introduced to Crescent Cove by another family and learned about respite care. They could bring Brooks to Crescent Cove for a short stay, during which time our care team assumes his complex medical care, while also providing Brooks with fun and engaging experiences. During his respite stay, they could rest and recharge and spend quality time with Brooks’ sisters.

They were nervous about entrusting their precious boy to Crescent Cove’s care team, but were quickly put at ease when his nurse sent a photo of Brooks enjoying a pontoon ride, cradled in her arms. His day was filled with art, music, and pet therapy, and all while being cared for by our loving staff.  “He was so smiley when we picked him up!” Chelsea says.

Though he had other respite stays planned, Brooks only ever had that one stay, as his health quickly declined. “We vowed to always put Brooks' needs before our own and we knew his little body was done fighting so hard,” says Chelsea. “It had been my life's greatest honor to be Brooks' caretaker, but at the end of his life, I knew I just wanted to be his mom. I did not want to not worry about medications, vitals, positioning, tube feeds, and more. I just wanted to be fully present with my baby boy during his last days.” She and Andrew considered whether Brooks should receive hospice care at their home, the local children’s hospital, or Crescent Cove. His parents never got to make that call to Crescent Cove — Brooks passed away peacefully in his crib on his third birthday.

Crescent Cove’s team was there to immediately support the family after Brooks’ passing, receiving support through grief groups, and connecting them to other parents of children gone too soon. Brooks is honored and remembered at our annual Remembrance Celebration, which is healing to his parents and siblings.

“Brooks’ passing was the most challenging thing I have ever experienced,” says Chelsea, “the support from so many family members, friends, and organizations like Crescent Cove was what helped our family through this difficult time.”