Facing judgment and doubt, they stand strong
For the parents of Spencer Kiernan, finding a reason for their son’s pain was torturous. “He complained that his legs hurt, and we saw him not doing what a typical eight- or nine-year-old would do. It was difficult because he went from one day running to the next day asking to be sidelined mid-soccer game. He loved soccer, so we didn’t understand.”
His pediatrician initially believed it was growing pains. Yet the aching didn’t subside. Whatever activity Spencer did, he would later pay for it; soon, he refused to participate in games. “There were times when my husband became frustrated because he thought he should be fine and he wasn’t,” says Stephanie.
In fifth grade, Spencer was diagnosed with severe scoliosis. He was told he would need to wear a brace 23 hours a day, possibly for the next 15 years. Stephanie was devastated and scared about how his peers would treat him. He was already being teased and bullied at school.
Praying for help
Spencer’s health rapidly declined the following year. He could no longer walk or attend school. His sister Danielle could not give him a hug; even the gentlest touch would cause excruciating pain. He would crawl to the bathroom. Stephanie remembers lying with him, holding his hands while he cried; they both would pray together.
She relied on all means of distraction, including Bingo on the iPad. She and Kevin would reiterate how proud they were of Spencer, how much they loved him and how strong he was. They wanted him to know he wasn’t a burden, yet no matter how many times they tried to reassure him, he still felt like he was a strain on his family.
Facing challenging emotions
During the early period of Spencer’s pain, Stephanie and Kevin felt deep helplessness and sadness. It pained them that he could no longer run around with his friends, or just be a kid. And like numerous children suffering, Spencer faced judgment, including offhand comments from parents about how “he must be fine because he played with kids the other day.”
Stephanie tried her best to shield him from her worries. She would cry in the bathroom so he wouldn’t hear, or only talk on the phone when he was listening to music with his headphones (she discovered later that Spencer would turn off his music so he would know how she was coping).
Money also became an issue when their health insurance began declining treatments for Spencer. Paying out of pocket—and relying on many complementary therapies to bring their son relief—money grew tighter, which added to Stephanie and Kevin’s stress. They never wanted Spencer to feel guilty, so they hid these issues the best they could.
Faith and community support make all the difference
Luckily, their faith—along with family and friends—sustained them during the worst times. For Stephanie, connecting with a group of moms in her community whose children all live with chronic conditions and pain became her lifeline. They helped push her through the ups and downs while giving her hope that her son’s life would get better.
It is now Stephanie’s mission to make others aware of the realities of pain in order to help other families.
“At first, I saw what was happening to Spencer as the worst thing possible. It tore my heart out, as I didn’t understand,” she explains. “I was angry and questioned my faith. I begged God to give me Spencer’s pain so he would not suffer. But then I realized I had to move forward. I had to find a new direction—to seek out therapies that would bring him relief.”
For parents entering into this existence, education and support are key components for survival. “Without us taking an active role, Spencer’s health would have suffered more,” says Stephanie. “Don’t settle. Keep seeking a specialist or practitioner who will work with you to best treat your child’s needs.”
Complementary therapies and self-care
Complementary therapies made a significant impact on Spencer’s health. Stephanie understands the roller coaster from dealing with her own pain from fibromyalgia. “It may not seem like it at the time, but you will get through it. Just continue to love your child, believe in them, and know you are doing everything in your power to make them better.”
It is also important as a parent to take care of yourself. Stephanie had trouble putting her needs before her son’s, as she believed that was selfish. However, in time, she learned the art of self-care. She instilled that message in Spencer, making a pact to take better care of themselves together. She now recognizes that without her own health being intact, she is of no use to Spencer.
Letting go of judgment and learning to listen
Stephanie wishes the public would take children’s complaints about pain more seriously: “Kids inherently don’t have it in them to make up such severe pain. When a child doesn’t want to run, that should be a warning something is wrong. Seek immediate help and listen.”
Stephanie and Kevin feel that all children deserve love and to be able to enjoy life and be happy. It is infuriating to them that kids with pain are not acknowledged. “They need a greater voice,” says Kevin. “As a society, we need to be less judgmental and more sensitive to our children.”
Spencer was a quiet sufferer. “Many doctors did not believe him,” says Stephanie. “It takes a special doctor to really listen to the parents of those children who are quiet pain sufferers.”
Stephanie has seen the lack of empathy at times from other moms on the schoolyard gossiping about her son. It hurts, but she chooses not to take the glances or comments personally. “People don’t know how to act when a child is sick,” she says. “The best way you can help families in these circumstances is to think of what you would want or need if the roles were reversed. Offer to bring dinner one night, drop off or pick up siblings from school, and just ask how they are coping.”
Spencer’s parents still fear his future. While he is currently doing much better, Stephanie worries that a flare-up could send him into another downward spiral. Her fear intensified this year when Spencer entered high school. Six weeks into school, he experienced a terrible, eight-day flare-up in the form of migraines. It was heart wrenching to see him lying in bed, unable to eat—and not be able to help.
The Kiernans don’t know what is in store for Spencer when it comes to his pain, which is why they are committed to using their voices. They hope to inspire others to speak out on the issues affecting children with pain. They hope that someday, children with pain will be treated equally, and new advancements will be developed to help.
“Watching Spencer suffer made me a stronger person and gave me a new purpose as a mom,” says Stephanie. “I will continue to use my voice—and our story—as a way to help children with handicaps, pain and chronic conditions feel not only special, but also heard.”