Making the Most of Every Day
Most sixteen-year-old girls are dreaming of their high school prom, taking advantage of their newly-acquired driver’s license and looking forward to the independence of college. Like other girls her age, high school junior, and sixteen-year-old Brooke Ramey spends hours texting, exploring Facebook and listening to music from popular rap and pop artists.
But unlike other sixteen-year-olds, Brooke lives day-to-day, without looking too far ahead. She enjoys Tuesdays and Thursdays when she attends school, and looks forward to the visits from her new friends from Arbor Hospice.
After being misdiagnosed with cerebral palsy as an infant, Brooke was diagnosed five years ago with Ataxia Telangiectasia, or AT Syndrome, a rare, neurodegenerative disorder that affects many parts of the body. Five years ago, Brooke could walk and sing in the local choir. Today, she crawls, but requires assistance. Brooke is losing control of her speech, has a weakening immune system and problems with digestion. Most children with AT Syndrome die before the age of twenty, often times as the result of illnesses such as pneumonia.
In September 2011, Brooke received a feeding tube. For three weeks she experienced intolerable pain and was unable to attend school. She contracted pneumonia in October and spent fifteen days in the hospital. Doctors ordered thickened liquids and weekly injections.
“Brooke didn’t want that,” said Brooke’s aunt and primary caregiver Kimberly Colligan. “She wanted to drink a Coke when she felt like it, and I wanted to focus on her quality of life. If she wanted a Coke, I thought she should be able to have it.”
That’s when Kimberly and Brooke decided on Arbor Hospice and made the call to the Access Center. “We were suddenly flooded with services,” said Kimberly, who is balancing a full-time job, a three-year-old son and caring for her niece. “Before, I was stressed and I know Brooke could sense my anxiety. Now, I have additional help and support from the nurse, social worker, aide and volunteers.”
In addition to the Arbor Hospice aide and nurse that visit Brooke on a regular basis, Brooke writes songs with the music therapist, receives love from Alpine, Arbor Hospice’s therapy dog, and interacts with student volunteers from the University of Michigan. Brooke, who has a natural love for animals, displayed her affection in Alpine’s second visit.
“As we walked into the foyer of Brooke’s home, Alpine and I heard Brooke excitedly yell that she made something for Alpine,” said Helen Buccella-Costa, one of Alpine’s trained handlers and Arbor Hospice volunteers. “When we got into the living room, Brooke showed us a blanket she made, by herself, for Alpine.”
Alpine’s blanket is one of more than twenty-five blankets Brooke and her special education classmates have made for animals at the Humane Society in Jackson.
“She really loves Alpine,” Kimberly said. “Brooke talks about Alpine for two days after her visit.”
Brooke’s love for Alpine runs so deep that she requested Alpine take part in her wish granted by the Make A Wish Foundation. Unsure if a dog would be allowed in the Apple Store, no one promised Alpine would attend. But when Alpine and three Apple employees greeted Brooke as she emerged from a limo, Brooke’s delight was evident. She screamed Alpine’s name in surprise and was overjoyed when Alpine lovingly stood at Brooke’s side as she spent two hours choosing her very own Apple products. And at the end of the shopping excursion, Alpine saw Brooke and her family off in their private limo.
Even with Alpine’s companionship, how does a declining sixteen-year-old and her family stay so cheerful? It starts with Brooke’s aunt, who keeps a positive atmosphere in her home, and plans activities that she, her husband, their three-year-old son and Brooke can all enjoy.
“I have always been a glass half-full type of person,” Kimberly said. “I don’t dwell on the negativity, and I don’t let Brooke either. She is naturally positive and likes to joke around. She has bad days, but they are few and far between. Every night, Brooke will ask me, ‘who’s coming tomorrow’ and will text me at work wondering again what time someone is coming. She likes to keep busy; this has been good for her.”
There’s a lesson for all of us who are lucky enough to know Brooke and her family. Whether we are sixteen or ninety-six, embracing life, giving back to others and making the most of every day is a lesson worth remembering.
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