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Johannah: Magnificent Marvelous Me

“I would get upset because my brother was getting a lot of attention because he had cancer, but the book helped me with those big feelings…”

Johannah likes pizza and soccer, and she loves to read. But favorite foods and grassy fields don’t figure into this nine year-old’s idea of a perfect day. Ask Johannah how she’d like to spend a day doing whatever she wants, and she’ll head right to Children’s Hospital of Wisconsin, where her little brother was a cancer patient in 2008.

“I would like to give the kids in the hospital what they want because I like to see kids in the hospital being happy even when they’re going through a hard time,” she says without hesitation.

This little girl with a big heart has spent much of her life around hospitals. When she was six and her brother Eric was three, Johannah saw her parents worrying over a mole that had grown on her brother’s leg. He was eventually diagnosed with a rare form of cancer often confused with childhood melanoma. His diagnosis set off a string of visits to the hospital for check-ups and chemotherapy.

As her parents became fully focused on caring for Eric, Johannah suffered and began feeling unloved and invisible. Johannah no longer was able to play with Eric like she used to. She often had to sleep over at her grandma’s house, and thought about Eric while playing with her cousins. At school, there were times when classmates avoided talking with Johannah when she was feeling worried or sad.

“She really didn’t understand what was going on. She wasn’t able to express what she was feeling at the time,” her mom noticed.

So her mom signed her up for a “Siblings Like Us” group for kids who have siblings with cancer. The leader Paula used Magnificent Marvelous Me! to help her group express themselves.

“I would get upset because my brother was getting a lot of attention because he had cancer, but the book helped me with those big feelings…”

“The book helps kids organize and label their feelings. If they don’t feel comfortable talking out loud, they can use the book as a kind of diary,” Paula said.

The activities in the book appealed to Johannah, who loved arts and crafts. Through the book, she began to voice the frustration she felt when her mom and dad didn’t have time for her. A self-portrait activity near the beginning of the book helped her focus and begin to express her feelings in a way she hadn’t been able to before. Johannah now had a safe place to articulate her fears and apprehension, too.

“I would get upset because my brother was getting a lot of attention because he had cancer,” Johannah said, “but the book helped me with those big feelings.”

“She’s now able to express her grieving feelings of sadness for her brother – as well as for other kids who are going though this,” her mom said.

On the “Feelings Masks” page in her Magnificent, Marvelous Me! book, Johanna drew a half smile in the section that asked her to draw the face that she shows to others. The other half of the page features a second picture, which is supposed to show what Johannah feels deep down inside.

“I drew a full smile. Because I know that I’m loved,” she said.

NOTE: To protect the child’s identity\, the image does not necessarily match the story and names may or may not have been changed.