Mom’s Determined to Take Back Control Over Daughter’s Vasculitis

“I remember the day Addy was diagnosed with Stage 4 Kidney Disease. At the time, I didn’t know what that meant. I thought it was a death sentence.” It’s been over three years since Jen Wilson’s then-six-year-old daughter, Addison Grace, was told her kidneys were failing and that she had microscopic polyangiitis (MPA) vasculitis.

“In those moments,” Jen said, “I felt helpless. Typically, I’m the kind of person who tries to fix it. No matter what it is, I figure it out and I fix it. But I couldn’t fix this.” Addy walked in the room as Jen told me this over the phone, adding, “Remember, Mom? You almost passed out.”

Ever since then, Jen said it’s been a “yo-yo ride trying to get her vasculitis under control.” Addy has spent weeks in the hospital, went through months of dialysis at home, had heart surgery from fluid buildup around her heart, got a kidney transplant, and spent her 7th birthday in an isolation unit in the hospital. She came down with an infection that was a cousin of tuberculosis. People entering and leaving her hospital room had to wear full HAZMAT suits, “like in E.T.,” Jen said.

“Vasculitis is the silent killer,” she went on. “It’s sneaky and it’s really, really fast. It has caused all sorts of problems, and the medication to treat it causes all sorts of issues, too.” Addy and Jen and their team of doctors are doing their best to keep up.

When I asked Jen to sum up Addy in just a few words, she didn’t hesitate. “She’s a bouncing ball of sunshine,” she said. “Full of energy.” Jen describes Addy as one of those kids who’s always giving to others. “It’s kind of like she carries this joyful energy wherever she goes,” Jen said. “At school, at church, people will be laughing and smiling and just getting a dose of that feel-good feeling from Addy.”

That’s the thing: Addy doesn’t look sick. But, internally, her body is at war with itself. “Everybody with vasculitis looks okay,” Jen said, “but they’re not. And they won’t be unless they find a cure.” This is part of the reason why Jen is committed to sharing Addy’s journey on their Facebook page. While the page started as a way to communicate health updates to Addy’s family, it has morphed into a global community gathering for people living or loving someone with vasculitis.

“One day, I posted a picture of all the medication Addy’s on,” Jen said. “People were like, ‘Oh, my god.’” They had no idea how sick Addy was. “They were shocked to realize it’s like I have a pharmacy in my house,” Jen laughed.

Dealing with vasculitis can be very isolating. Jen explained: “People don’t entirely understand what you’re dealing with. They try to be considerate, so they don’t bring up certain things or don’t invite you out. People mean well, but they don’t realize that their actions put you in a bubble.”

At one point, Jen considered closing down their Facebook page. “I worried I was sounding like a broken record. That everything I was sharing sounded bad. But, after thinking about it, I realized that if I stopped describing Addy’s experience and my experience as a caregiver, other people won’t know.” And knowing is a game-changer. “The only way we’re going to be able to get more information and more studies and more help for people living with vasculitis is by us continuing to talk about it,” Jen said. Telling our stories isn’t just comforting, it is world-changing.

The three years since Addy’s diagnosis have rocked their small family unit significantly. “Throughout this ordeal, it has been me, Addison, and my son,” Jen said. They became “frequent flyers” at the hospital and when Addy needed extended hospital stays, Jen would be there, sleeping by her side. “‘Go home,’ the nurses would tell me,” Jen said. “I wouldn’t leave.” Eventually, the nurses gently kicked her out; the endless care and worry was taking a toll on her.

Jen said, “I realized I had to come to grips with the fact that the life we had as a family pre-diagnosis was gone. It no longer existed. That child I had pre-diagnosis—she was gone. Addy before all of this had no knowledge of sickness or hospital stays or getting injections and experiencing pain. The way she views the world is completely different. I had to grieve that.” She said it took a long time for her to accept.

But coming to accept the ever-changing landscape of their lives, their “new normal,” has helped Jen and her family reclaim some sense of control. “For a while, it felt like there was nothing I could do. Vasculitis kept slapping us with something new…But once I got my bearings, I started to ask myself: ‘What can I do to have control over this situation?’ That’s where the cooking came from.”

After Addy was diagnosed with renal disease, she was forced onto a new—and strict—kidney-friendly diet. “I didn’t know what to feed her,” Jen said. “She was a six-year-old child in renal failure. Six-year-olds are picky. There was nothing out there to guide me; I literally didn’t know what to give her.” So Jen decided to get creative. She and Addy went into the kitchen together, started exploring, and Jen would record what they did so she’d remember their unusual recipes. “And that’s when I thought: maybe I should post this?” Addy’s own cooking channel was born.

After that, Jen and Addy kept saying yes. “Any opportunity that came up, we went for it.” Addy was on the news, in a parade, in a commercial for the hospital. She cooked with a local star chef in their New Orleans hometown. Together, they responded to the uncertainty and unpredictability of vasculitis with curiosity and an attempt to make peace with the uncertainty. Jen decided she was just going to “go with it…I’m here for the ride.”

Another creative way they’ve decided to meet the disease’s challenges is with their “jam sessions.” Jen shared on Addy’s Facebook page: “Addy girl has developed MAJOR anxiety from all that she’s been through these past 3 years. Going to the hospital, even for just a checkup, can make her anxiety flare to panic attack levels.” To keep her panic in check, Jen turns up the music—Lizzo, K-pop, and carnival music are Addy’s favorites—and they “jam” in the car on their way to the hospital. It gives Addy something to focus on and get excited about. As Jen said, “It typically does the trick,” giving her back her mojo.

Life is finally settling into a calmer rhythm for Addy. “I’m working on reminding her that she’s okay.” Jen wants to help Addy step out of panic mode, a mode they were in for so long, constantly waiting for the other shoe to drop.

Addy’s always been an independent kid. Jen says she wasn’t afraid to try anything. But as she got sick, she began to pull back, clinging to her mom. “It’s like she went into a shell,” Jen said.

But her light is returning. She’s getting back to who she was, that bouncing ball of sunshine. That fiercely independent girl.

She’s back in school, in person. “She loves her friends,” Jen said. “She’s having the time of her life.” Addy has been a dancer since she was two years old. She’s gone back to dance, performing in two recitals since her vasculitis diagnosis. Soon, she’ll be tumbling across gymnastics mats. “She wants to do everything,” Jen said. She tried out for her school play and got a part. She is coming home to herself and her fearlessness, again.

When I asked Jen how she’s taking care of herself, she let out an “Oh, Lord,” then laughed. “That’s what I’m working on now.”

For the first three years, she said, her entire existence was Addy. She was a kindergarten teacher. After Addy’s diagnosis, she took a leave of absence, which extended into retirement. She knew she needed to find work she could do from home in order to be there for Addy, all the doctors appointments and hospital stays.

“Caregiving takes a toll on you,” she said. “Depression and anxiety became an issue. It’s not unusual for caregivers. It may be more prevalent than we speak of.” Before Addy got her transplant, Jen had been giving her dialysis at home. “It’s like Addy’s life was literally in my hands when I set up her dialysis each night. I became the eyes and ears for the doctor. It’s a lot to manage. You have to manage yourself, manage your house, manage your family, manage your work.”

But as Addy’s vasculitis storm finally begins to settle for now, Jen has new perspective. She has the wisdom of having been through some of the darkest moments and landing on the other side. “If I could tell other parents one thing,” she said, then paused. “I think, for me, what would have made it a little easier when I first started on this journey was if I knew it wasn’t going to be scary all the time. There are going to be moments. There are going to be bad times. But they’re just moments. You will have more days that feel regular, normal, okay. It might take a minute. But, remember, it’s not even a season, it’s just a moment. It’s going to pass.”

You, too, will find yourself riding the waves: rising and ebbing. Nothing—not even darkness—lasts forever.

Written by Ashley Asti