Childhood interrupted.

Rowan Rody is a typical 10-year-old boy. Describing himself, he says, “I’m kind of funny. I’m very, very short. I’m pretty loud. I’m creative, and I love dogs, but I’ve never had one before, but I really want one.” He wants to be either an astronaut or a paleontologist when he grows up, and he has a goldfish named Chris Pratt.

Rowan and his sisters are homeschooled by their mom, Shannon. Twice a week the siblings get together with other homeschooled children to enjoy interacting with children their age.

“I like to go to school because it distracts me from the pain in my head,” he says. “Even when it’s really bad, I beg my mom to let me go.”

The pain Rowan is talking about is the chronic, intractable migraine he has lived with since he was 8, when he contracted Lyme disease from a tick bite while visiting his grandparents in New York. Lyme is an infectious disease caused by a tick bite and can cause joint pain, flu-like symptoms, fatigue, heart palpitations, and headache. At the onset of the bite, Rowan’s migraine attacks began, and in the two years since, he has only experienced relief from that migraine for “three glorious weeks” last summer.

Translating his pain through art

Rowan doesn’t remember life before his pain began, and is hesitant to talk about it at all. “He actually doesn’t tell people about it very much,” shares Shannon. “He’s pretty shy about it, maybe even a little embarrassed by it. He doesn’t like to seem like he’s in pain in public. He doesn’t like people to see that side of him, so he tries to keep it in, even in front of the doctors.”

Rowan elaborates:

“I would try to explain it, but I can’t really figure out how to say it in words. I try to hold the pain in and try and hide it because people don’t understand. And I don’t want people to see me in pain. I tried to explain it to my friends, but they just don’t listen. They don’t understand.”

His mom helps him share the pain by asking him to give her a number on a scale of one to 10 to describe what the pain feels like to him. Rowan will draw a picture of the pain for Shannon to help her understand, and uses words like stabbing, aching, blinding, and pressure to describe the pain he is experiencing. With that information, his mom is able to help him explain it to other people while also giving him tools to help him cope.

Searching for distraction

When Rowan has his bouts of “frenetic pain energy,” as Shannon has dubbed them, extreme distraction is the only thing that gets him through them. He will bother his sisters—Willow, 13, and Phoenix, 7—and his dad, Jason, if he does not have some form of major distraction, so they do things like ride bikes up impossible hills and take long hikes to nowhere in particular. The family has gotten especially creative—wild games of hide-and-seek, making creations from videos on YouTube, bake-offs, and wiffleball competitions in the driveway are common occurrences.

Rowan loves using his imagination and creativity to help pass the time. Another favorite distraction is LEGOs®. Rowan has become a “master LEGO® builder,” spending hours building and playing with them, especially the Jurassic Park or Harry Potter sets. He even wrote to LEGO® to thank them for providing him with such a fun, creative outlet while dealing with pain.

Although migraine keeps him from playing organized sports, Rowan loves outdoor activities, and on the days that he feels well, he spends extra time outdoors, fencing or riding his bike. He loves the water, and enjoys swimming in the ocean. (The chlorine in most pools can trigger his pain.) In the early mornings, when his pain is the worst, Rowan loves hanging out with his three guinea pigs.

A mother’s challenge

“Migraine has stolen the carefree little boy that I once knew,” Shannon says tearfully.

“This was really hard for me to let go of and it took a long time and a lot of bitterness to get past that. It’s terribly isolating for him, and it is often a shame-filled and angry time for our entire family. It has been a huge adjustment for all of us to learn to live with.”

There are particular challenges with managing migraine in children, Shannon explains. “He can’t actually developmentally comprehend it all,” she says. “I know what he needs to do, but it’s hard for him to always put those things into action because he is so young. There is no awareness or enough focus on his part to do something because of his pain. This is maddening—but this is his journey, and I have to remind myself of that.”

She adds, “When you’re 10, and your mom can’t just fix it for you, you mostly want to hide and escape and do all the things that distract you from the pain, even if, in the long run, they contribute to the pain.”

The Rodys have also struggled with treatment options, attempting various noninvasive modalities to treat his pain. Because of his age and his underlying Lyme disease, there are not a lot of options for a continuous treatment plan, much less an emergency treatment plan. He has found intermittent relief in cannabidiol (CBD) drops (which can be prohibitively expensive), chiropractic manipulation, and a transcutaneous electrical nerve stimulation (TENS) machine. But, like any normal 10-year-old, Rowan struggles with the discipline needed to manage his migraine. His three pain-free weeks last summer were preceded by a strict diet eliminating sugar, salt, preservatives, and grains; a rigorous diet is hard for anyone his age to maintain.

Rowan now goes to a counselor to help him understand that he is in control of his life, despite his pain, and to help him determine the things he can do to make his pain better.

“As a parent, having a child with chronic pain is a constant battle,” Shannon says. “Kids push boundaries—it’s their job. It’s what they were born to do, so it’s really difficult for a parent to know when to push their child and when to pull back.”

The gift of empathy

In the end, both Shannon and Rowan are filled with gratitude for all the things he is able to do, the low-pain days, and the person he has become since his pain first began.

“Rowan has developed a sensitivity toward others that was much more muted before,” Shannon says proudly. “His humor has been such a gift through it all, and his sisters are changed in a good way as a result of having to deal with his pain. He has a really rich life because of it. He understands empathy and sympathy. It’s just hard to see it under the stress of physical pain he faces daily.”

“We just want a regular life… to be able to live and appreciate each day as best we can,” Shannon says. “That’s what we’re fighting for here.”

—by Michaela O’Connor

RESOURCES

American Migraine Foundation:
americanmigrainefoundation.org
Move Against Migraine Facebook Group:
bit.ly/moveagainstmigraine
Parent Support Group for Children/
Teens Suffering with Migraines:
bit.ly/parentsupport-migraine
U.S. Pain Foundation: uspainfoundation.org