By Tina Anima

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 Eric’s leg. Eric 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.

Johannah’s mom and dad were busy caring for Eric. It was hard for Johannah.

“She really didn’t understand what was going on. She wasn’t able to express what she was feeling at the time,” Johannah and Eric’s mom, Jill, said.

Jill signed Johannah up for social worker Paula’s “Siblings Like Us,” a group for children who have brothers and sisters with cancer. Paula used Magnificent Marvelous Me! to ease Johannah and other youngsters into expressing themselves.

“The book helps to organize and label their feelings. If they do not feel comfortable speaking out loud, they can always use the book as a kind of diary,” Paula said.

The activities in the book appealed to Johannah, who enjoys arts and crafts.
She began to realize that sometimes she got frustrated at home when her mom and dad didn’t have time for her.

“I would get upset because my brother was getting a lot of attention because he has cancer,” Johannah said.

A self-portrait activity in the book allowed her to focus on herself, sketching a picture and choosing what type of smile to include on her drawing. She met other youngsters who also had siblings with cancer, and discovered that they were feeling some of the same things, too.

“As she’s grown through this experience, she’s been able to express the other grieving feelings of sadness for her brother and other kids who are going though this,” mom Jill said.

Johannah liked playing with Eric, but that wasn’t possible when Eric was feeling sick or undergoing treatment in the hospital. And she worried about her little brother. She had sleepovers at her grandma’s house, and thought about Eric while she played with her cousins. She turned those play sessions with her cousins into ways to help Eric.

“We’d do arts and crafts and everything. And we would give them to him when we visited him in the hospital,” Johannah said.

In Paula’s group, and with the help of activities in Magnificent Marvelous Me!, Johannah found a place to share her fears and apprehension, too.

“I think that’s one thing that’s on her mind. That her brother might get cancer again.
She’s very protective of him,” Jill said.

Cancer and her little brother filled her thoughts, even at school. When she was seven, Johannah and her classmates made construction paper turkeys for Thanksgiving, and wrote messages of thanks. Johannah’s message read, “I am thankful for my family. I am very thankful for medicine, doctors, nurses for helping my brother live and not die.”

At school, there were times when classmates avoided talking with Johannah when she was feeling worried or sad. As a fourth grader now, she’s had time to think about those days. Her advice to kids who have friends in a similar situation would be to try to make the person feel better by doing something as simple as just talking to them.

And her advice for kids who have siblings with cancer?  “Try to have fun and think positive that your brother or sister is going to get through.”

While Eric’s cancer has been in remission for two years, he and his family will live with yearly check-ups and routine hospital visits for the next 20 years. Because Eric’s cancer is so rare, he is part of a case study in the hopes that he can help doctors figure out the best treatment plans for other children who are diagnosed.

“It is a lifetime experience,” Jill said, and it affects the entire family.

With a cancer diagnosis, childhood rituals like Halloween and the tooth fairy take on extra special meaning. As the older sibling, Johannah guided Eric along. She helped Eric build his first snowman. At Eric’s first sleepover at their grandma’s house, a protective and restless Johannah finally fell asleep when she clasped her brother’s hand.

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.

Annette L., a graduate student in Psychology in Australia, found Art with Heart on the internet while researching effective ways to help boys express their emotions. For her practicum, she is working at one of the State High Schools with 9^th grade boys who have various levels and types of behavioral issues. She began using Chill & Spill with four boys over an eight-week period.

Says Annette, “The four students embraced the whole concept as I integrated the journal into what I had planned. They all found it easier to write or draw and were then happy to share their thoughts with me.”

At the end of each session, students left their books at the office, but knew that they could access their books anytime they needed to.

“I encouraged these students to use their books (instead of their fists or mouths) when other students or even teachers upset them – if they stormed out of class angry, they should put their anger on paper rather than destructively wandering the school grounds.

“By week three, two of my students had started accessing their books outside of session. By week five, three out of four were doing this.”

Annette said that her students began to notice that when they brought their anger and frustration to the book, they didn’t get into as much trouble. One even had a teacher comment that he was not disruptive in class anymore. This was a huge step for the student.

All four students credited the Chill & Spill Program with helping them see where their strengths lay and how they can use these strengths to repair weaker areas in their lives.

Before the Chill & Spill intervention, “Jamie” said that he didn‘t know that he could simply walk away from difficult situations that would normally end in a fight. He also had struggled to take a stand and make his own decisions. Before he began using Chill & Spill, he said he felt a little sad, but also “worried, crappy and pissed off.”

Writes Jamie, “After I finished Chill & Spill, I felt happy. [The book helped me] walk away from my worries [and realize that] I wasn’t on my own and [that I can] talk about my feelings with others.”

His letter ended with this note, “I’d also like to say that I love this book and it’s helped me heaps.”

Chris, a Prevention & Education Specialist, who specializes in helping kids who have been sexually abused, first heard of Chill & Spill from his Program Manager, who showed him a copy. Chris decided to give it a shot by presenting the book as a “thank you” gift to the group of middle school boys he had been working with on a weekly for the past couple of years.

He was nervous that the boys wouldn’t “get into” it and had a second activity up his sleeve…just in case.

“To my surprise, between the time the first boy received his shrink-wrapped copy and the last boy to be handed the book, they had all torn into it and immediately personalized them with their names. They didn’t need to be prompted at all.”

He gives the boys homework, asking each one to come back the next week with any one activity of their choosing completed. The boys then have the option of sharing their work with the group or keep their work private.

Chris tells us that the doodling and sketching aspects of the book have enhanced the group’s ability to dialog, especially in regards to some of the tougher issues brought up. Some great discussions have emerged as a result of the book.

Says Chris, “By keeping their attention split between doodling and dialoging, I believe it creates space for individual reflection and courage to contribute to the conversation at their own pace. I would recommend this book to group facilitators and educators who would like to present their participants with a cool and clever gift which can easily be incorporated into or enhance their group format or curriculum.”

Crystal was in 8th grade when she joined a Chill & Spill group, hosted by the school’s Prevention and Intervention specialist. The group, made up of middle school students dealing with drug and alcohol problems, was a way for kids to find a healthy outlet for the things they were dealing with.

“Chill & Spill helps get your ideas out on paper — and then you actually realize a lot of things about yourself you didn’t know before. I had never thought about how much I was concerned about my family.

“I’ve had a couple of stepdads and the book really helped me cope with the fact that they weren’t the greatest guys to be around when I was little. And I always thought it was just me dealing with these problems, but in the Chill & Spill group, I met a few others that were going through the same thing. The book helped us talk about it and write it down.

“What I like most about this book is that it helps you get over the problems you are going through and move on.”

Today, we got to visit one of our Magnificent Marvelous Me Pilot Program partner schools. This photo was taken of a first grader who used markers to explore the things that are the same in everyone, and the things that are different about each individual. She didn’t know it, but she took a first step in learning what empathy is all about!

The teacher told us that one of the children in her group had never spoken up before starting the MMMe after-school class, but that it has been instrumental in helping him feel self-confident enough to express his opinions.

We had a blast at our first ever Kid Pop Family Dance Party, held at the Crocodile Cafe. Kids danced the Hokey Pokey, the Funky Chicken, and made all sorts of other fun dance moves. The little ones came decked out with feather boas, fancy ballerina skirts and sneakers. Everyone large and small enjoyed doing the limbo, all to benefit kids in crisis! Thanks to everyone who attended and got to enjoy the festivities!

This holiday season Art with Heart would like to help hospitalized children and our Art Buddy volunteers at Swedish and Harborview Medical Centers by holding an Art Supply Drive! Art with Heart trains volunteers twice a year to become Art Buddies to volunteer their time in the pediatric wards. They utilize their artistic talent to introduce children to the joys of creativity in the hospital environment and encourage them to find their own voice amidst hardship. The Art Buddy volunteers and kids work together using Art with Heart’s publications and other art activities with the hope their lessons will carry on and they will become caring, successful, and imaginative adults. In order to fulfill this goal, they need supplies!

We can make their job easier and help them reach out to more kids by supplying them with heART Kits.

These kits include:

• Gift cards to Target or any local art supply store
• Non-toxic crayons
• Non-toxic colored pencils
• Non-toxic colored markers
• Construction paper
• Sticky foam pad shapes or plain colors
• Popsicle sticks
• Snack sized ziplock baggies to pack crayons in
• Blank mask templates
• Stickers (letter, characters, princess),
• Bottles of mod-podge

From December – March we will be gathering art supplies and accepting donations to build these kits for Swedish and Harborview medical centers. If you would like to give back this holiday season and support the positive efforts of our Art Buddies, $25 would provide kits for 5 kids! Donate here or coordinate with us to drop-off donations… Happy Holidays and keep creating!

If you are interested in volunteering to help pack supplies, please contact nancy@artwithheart.org

Art with Heart has helped some 60,000 children deal with the stress and strain of hardship since our founding 15 years ago. We are well known in the Seattle community and nationwide for our work in expressive art therapy, including the creation and distribution of our therapeutic books and supportive trainings for caregivers to help children in distress.

In May 2011, an art gallery opened in Pioneer Square, near our location, using the name “Art with a Heart” that resulted in confused vendors, donors, community partners, and volunteers. We repeatedly and respectfully asked the gallery owners to change their gallery’s name for months, but they refused every time. As a result, we retained pro bono legal counsel who assisted us in taking legal action to prevent infringement of our trademark and trade name. The King County Superior Court ruled that their gallery’s use of ‘Art with a Heart’ constituted trademark infringement and permanently prohibited the gallery from using that name, along with derivatives. As of this writing, the gallery owners have not fully complied with the Court’s order.

Today’s ruling follows other previous rulings from the same court and imposes financial penalties on the owners if they continue to exhibit willful noncompliance. In the previous court decisions, the King County judge has ruled repeatedly in favor of the nonprofit as the rightful owner of the trademark in question.

The gallery owners have attempted to harm the reputation of Art with Heart with disparaging remarks posted online and in numerous emails. In our 15+ year history, we have never experienced this kind of animosity – but this will not distract from our mission of helping fragile children facing crisis, such as after a diagnosis of cancer, a natural disaster, or the tragedy of a school shooting.

The posts in this blog are just a few examples of the healing we encourage to bring joy and creativity into the lives of children facing hardship. Thank you for your understanding and continued support.