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August 2018 our first day of the “school” year (we homeschool) happened and shortly thereafter our whole world changed. . The only thing out of the ordinary about her that day was that she was especially clumsy, but she is my most clumsy child so it wasn’t remarkable. She also confided in me that she had peed in her pants on the way to the toilet a couple of mornings in a row. I dismissed that as well, thinking she had overslept or had a lot to drink the days before. …


The First Panic Attack

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My child had been diagnosed with terminal cancer, a brain tumor that no child survives. She had been through the treatments to prolong her life. She had tried an experimental vaccine to save her. And now, we were facing the end. For many reasons, I had missed the perfect window of time to take her on her Make a Wish trip, and I was now faced with going with a much sicker child. A child under hospice care. My husband and I alerted friends and family. Informed them all that our daughter would need prayers and extra steroids to make it on the trip she wanted to take. …


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She was hesitant about transferring between chairs. The comfort of the wheelchair arms on either side of her, the knowledge that she could be rolled anywhere she needed to go without effort, the fear of falling during transfer; there were so many reasons to stay in that chair. But her mother was constantly worried about the pressure on her skin, afraid she’d get sores, and also a little bit hopeful that one day, the tumor would be gone and she would be able to walk again and if she didn’t keep her muscles up by at least transferring several times a day, she would never regain what she’d lost. It was a silly hope, but the prescriptions for Physical Therapy and the encouragement from doctors and therapists and friends and relatives made her mother think that anything was possible, that miracles could happen for her child. The therapists encouraged her to sit in other positions and other chairs throughout the day, so her mother was disappointed when they moved into the hospital provided apartment and none of the kitchen chairs had arms. She was always in danger of tipping off of whatever she was sitting on; if the tumor suddenly pressed harder on the part of her brain that controlled the half of her body that she could no longer move, or if the experimental treatment she was on caused new swelling that had the same impact. …

About

Michelle Nadari

A woman who knows life isn’t fair, and that her living children deserve the best lives possible.

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