You Can't Take My Vision!
Finding Purpose through the Pain: A Child's Journey to Change the World
Sheila M. Trask
When Nikki Fontenot learned that her daughter Maci had a serious illness, she didn’t fall to pieces. Instead, she took a cue from her outgoing preschooler and met the challenge head-on. By writing about their experiences in You Can’t Take My Vision! Nikki and Maci hope to spread this positive attitude to other families who face shocking diagnoses and exhausting medical treatments.
Maci was only four when a preschool eye exam revealed some problems with her vision. Naturally, Nikki followed up with a doctor’s appointment, expecting nothing more alarming than a prescription for glasses, but what followed was a whirlwind of appointments, tests, and consultations. Maci had an optical glioma, or tumor, behind her left eye. Vision in that eye was already compromised, and quick treatment was the only way to preserve sight in her other eye and prevent the growing tumor from causing even more damage to Maci’s developing brain. Off to Texas Children’s Hospital they went.
In the same bright, optimistic tone she used at Maci’s bedside, Nikki chronicles the family’s journey from chemotherapy to craniotomy and recovery. She concentrates on the things that made the journey bearable—caring nurses, supportive family, and an incredibly responsive hometown community—rather than the fear and pain she must have experienced as a parent. She rarely shows her own vulnerability, although it is implied in the thank-you notes she includes at the end of each chapter. When she thanks the grandparents who “took care of us as we tried to take care of our family,” she reveals a little of the helplessness she felt.
Nikki’s writing is logical, clear, and explains the medical details adequately, but she is always writing with her daughter in mind, as though she expects Maci to be reading over her shoulder. Negative thoughts do not make it onto the page. Every heartbreak is reframed as a challenge, every disappointment is an opportunity. While this attitude clearly has inspired Maci’s post-recovery activities—raising research money through her annual MaciFest, for instance—other parents reading the Fontenot’s story might wish for more transparency about the hard times as well as celebration of the good times.
Maci’s own depiction of her journey echoes her mother’s hopeful account. Handwritten and illustrated by the young Maci herself, this book-within-a-book reflects the trust Maci placed in those helping her. All of the people in her pictures have huge smiles, and her words tell of plans and dreams for the future. Some of those dreams have already come true, as evidenced by the photographs of a grinning Maci meeting The Jonas Brothers through the Make-A-Wish Foundation program.
You Can’t Take My Vision! would make a useful addition to any children’s hospital library. It can also serve as a helpful resource for families dealing with optical glioma and other serious illnesses. Parents and children alike will be encouraged by the Fontenot’s strength.