The view from the Careys' home in the Boise Foothills is a sweeping vista of parks, cottonwood trees and mountains, but the Carey kids mostly look out the windows.
Summers are spent indoors, waiting for the heat to pass. The slightest rise in temperature or even a ray of sunshine can trigger another seizure in 9-year-old Alexis. Trips outside the home are mostly little more than air-conditioned car rides. On a blazing July day last summer, Clare Carey loaded up her cabin-fevered kids for a drive in the hills. She drove along the Boise River, past parks, toward Lucky Peak Reservoir in a rare respite from their usually sequestered life. When they arrived at a vantage point, the Carey children peered out the windows, watching kids splash in the spray of a fountain, play in the water and run on the sandy beaches of Lucky Peak State Park.
The traditional activities of childhood summers in Boise, just feet from their car, tempted Alexis' big brother; but for the Carey children, it might as well have been on TV.
"He asked, 'Can we stop?' I said, 'No, it's too hot. We can't,'" Clare said.
Clare's voice cracked as she told the story of that summer excursion. The matter-of-fact mom usually speaks of the contentious medical marijuana debate with the scientific objectivity and calm she employed in her career as a physical therapist, but she battles emotion as she talks about the price all of her children pay for Alexis' illness.
"I should be taking my kids to the park, not the Statehouse," Clare said.
The kids often hear "no" and "can't" as they ride a roller coaster of canceled vacations and hospital stays while the Careys battle for their daughter's future. They fight for insurance coverage; they fight to keep their daughter alive and comfortable; and, when they have time, Clare, a full-time mom and her husband, Boise pathologist Dr. Michael Carey, fight to change Idaho's medical marijuana law—one lawmaker, one conversation and one study at a time.
During the 2014 legislative session, the Careys quietly lobbied Idaho lawmakers to introduce a medical marijuana bill that would allow patients access to low-THC cannabis for medical use. Legislators told the Careys the time wasn't right: Elections were around the corner. The family was told to wait.
"We can't wait," Clare said. Any seizure could be Alexis' last.
The Careys hold out hope that the 2015 legislative session ends the waiting game. They're asking lawmakers, once again, to allow them to give their daughter a medicine that could save her life. But they need help.
"We just don't have time for this. We should be in the park. We shouldn't have to be dragging our sick kids to the Capitol so they can get their medicine," Clare said.