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Core classes are scheduled in the morning when Maccoux feels at her best. The longer Maccoux sits up, the lower her pressure numbers drop. When needed, Maccoux can rest for 20 minutes in a separate room, adjusting a chair to position her body as needed for pressure numbers to improve. She makes similar adjustments before games, skipping warm-up to lie on the floor as needed to help her pressures settle.
The grind of participating can be costly. When Maccoux came home crying due to pain last week, she postponed her math homework to give her brain the rest of the night off. She is grateful to teachers for their flexibility.
Maccoux and her family share the credo “How do we make it work?” to get through myriad challenges. From carving out padding inside her helmet to make room for the shunts to prioritizing tasks to just listening to her body, Maccoux has maintained a fairly normal life.
“There is a fine line between being cautious and living in fear,” Maccoux said. “I don’t want to live in fear.”
She shares this message as an eight-year member of the Children’s Hospital and Clinics Youth Advisory Council. Maccoux and other council members have provided input in meetings with doctors, nurses and architects on various aspects of patient life. She recently wrote a blog with her tips on keeping up with school work while in the hospital or recovering at home.
The last line read, “remember you can do anything you put your mind to. Don’t let anything [like being in the hospital] stop you.”
David La Vaque • 612-673-7574