Together is a new resource for anyone affected by pediatric cancer - patients and their parents, family members, and friends.Learn More
Not long after his daughter Maya was diagnosed with neuroblastoma, there came a morning when Kirby wondered how he would get out of bed. He wasn’t sure he had the strength.
When he first learned his daughter, then 4, had cancer, Kirby put on a brave face. He outwardly made it look like he was up to the challenge. “It’s not until you’re in the thick of it that you realize how paramount an event it is in your life.”
Kirby relied on the inner strength he had cultivated through his Buddhist faith to get himself out of bed. “You do because you must,” Kirby said. “You do whatever you have to in order to hang on. That why it’s so important to have spiritual practices.”
A child’s cancer diagnosis can cut to the core of a person’s soul, the spiritual principle embodied in human beings. In a moment, the reality of cancer strips away the frivolous and lays bare what is truly meaningful. But in the process, this new reality can drain parents’ emotional strength, spirit, and sense of connection with the people around them. Many parents say it can be helpful to find ways to nurture the soul. These are sometimes referred to as spiritual practices.
Spiritual practices may include:
A person does not have to identify as religious to benefit from spiritual practices. A big part of feeding the soul deals with a person’s ability to experience vulnerability, to feel pain, and to express feelings, said Brent Powell, director of spiritual care at St. Jude Children’s Research Hospital.
Most human beings consider themselves spiritual to some degree. They have a need to connect to something larger than themselves. That may be a community of believers, nature, the universe, or a higher power. Most paths involve some form of prayer or meditation, inspirational texts, and connection to others.
Malise and her family, who are Christians, relied heavily on prayer after her son Evans was diagnosed with acute lymphoblastic leukemia. They prayed everywhere – in the car, during a port-a-cath procedure, before a bone marrow aspirate. It was a continuous process.
“Prayer is communication with my Maker,” Malise said. “I can lay down all my fears, all my angst. He made me. He knows what His plan is, and He knows our path. For me prayer is like drinking water every day or eating oatmeal every morning. It’s feeding my spiritual side, and for me, that’s my soul.”
Prayer is defined by Oxford Dictionaries as a solemn request for help or expression of thanks addressed to God or another deity. People can express prayers in many ways.
For Malise, the book of Psalms in the Holy Bible provided prayer guidance. Psalms has been called the prayer book in both Jewish and Christian traditions. But sometimes her prayers weren’t so structured. She screamed some prayers. Sometimes she sang them or wrote them down in a journal. She often prayed when she ran. Running was one time she could be alone.
“I would run hard, run fast. It was a private place for me. Nobody could catch me,” Malise said.
Kirby relied on meditation, a central practice of Buddhism. Meditation is a mind-body practice in which a person concentrates on something, such as breathing or a repeating of words, to reach a heightened level of spiritual awareness.
When he was at home in Canada, Kirby meditated at the Toronto Zen Centre. When he was at the hospital, he would meditate in Maya’s hospital room or its adjoining parent room. Meditation and prayer are very similar, Kirby said. Both can act to calm and center the mind. “You are reaching out to God or the universe to help you.”
Although there are many types of meditation, most have 4 elements in common, according to the National Institute for Complementary and Integrative Health:
Malise said reading scripture and focusing on specific Bible verses helped her and her family. They kept Bible verses taped to the wall of Evans’ hospital room.
The night the family packed for their first trip to the hospital, Malise threw a Magic Marker® and 4 sheets of construction paper in her suitcase. Later on a green sheet of paper she wrote a verse from the Holy Bible, Psalm 23:1: “The Lord is my shepherd.”
That was 2006. They still have that green piece of paper.
Neighbors put together a box filled with Bible verses. The family has read them many times for strength and focus.
Chaplain Mark Brown has these suggestions for relaxation. The goal is to become restored, refreshed, and renewed.
Focus on your breathing and count to 100. If you become distracted, start over.
Breathe in positivity. Breathe out negative feelings.
Try focusing on a particular color, word, or passage of scripture.
Many pediatric centers have music therapists. They draw on clinical, evidence-based practices to use music to reduce stress and pain and provide a creative outlet for patients.
Some people listen to music as a spiritual practice. Select music that reflects a certain mood or provides a connection to home or pleasant thoughts.
Hospitals, faith organizations, and community centers often have small groups where parents and patients can find fellowship and support. That sense of connection can connect participants to a larger community. They feel less alone.
Brown often encourages patients and families to look for God and goodness to be present in daily encounters and experiences. It makes God and positivity physical and tangible. It helps people feel less isolated. It promotes the idea that one can find God and goodness as part of a community. It helps one feel connected to people and is a source of love, meaning, and support.
Look for good things to happen and for the good in each person. This practice may train your mind to look for the positive. Consider keeping a thankfulness journal. Include everything positive that happened that day:
All of a sudden you may find that you are coping better.
“If you have calm and peace about you then your child will have calm and peace,” Malise said.
Although no one would choose for their child to have cancer, many parents say the experience has deepened their faith and broadened their perspective.
“It sort of woke me up – the preciousness of life, what it means to be alive, what the important things are,” Kirby said. “There is something very pure about going through it. The experience forces you into looking into the core of your being.”