Meadows - The other side of impossible: ordinary people who faced daunting medical challenges and refused to give up

If you bring forth what is within you,

what you bring forth will save you.

The Gospel of Thomas

What if wed never met Char?

D ARIN AND ME

W HEN MY SON S HEPHERD WAS three years old, he and his twin brother, Beau, took soccer lessons for the first time. They were so excited the night before their first practice that they slept in their uniformsa purple T-shirt with a yellow star kicking the ball with one of its points. But when we got to the field the next day, Shepherds enthusiasm evaporated. While Beau and the other kids zigzagged around the cones, Shepherd stood still and looked bewildered. When it was his turn to kick the ball, he seemed lost. After fifteen minutes, he walked off the field and sat down in my lap, saying he was too tired to play. We watched the other kids, and I pointed out to him the drills I thought he might enjoy, the ones that Beau was charging through. But Shepherd refused to go back to the field.

His reaction didnt concern me muchhe was three, after all, and I already thought of him, in the way that parents tend to categorize their children even as we tell ourselves we shouldnt, as not that interested in sports.

My husband, Darin, and I had recently noticed that Shepherd occasionally walked with a limp, but it was faint enough that sometimes when you looked for it, it was gone. Faint enoughthough it seems incredible nowthat we didnt connect it to his reluctance on the field.

I assumed that Shepherd would warm to his soccer lessons the next time around. He and Beau still donned their jerseys at bedtime and talked each night about soccer school at the dinner table. But the following Saturday, Shepherd broke into tears the moment he started to run.

That week we saw our pediatrician, who referred us to an orthopedist. When no injury showed up on the X-ray, the doctor said that arthritis was most likely the issue. Arthritis in a three-year-old? It sounded more odd than alarming at first, but over the next few weeks, as we waited to see the next specialist, we watched Shepherd spend more and more time on the couch. His stiff-legged walk became more pronounced, though he claimed that it was just an imitation. Im a penguin, he would say. Then he started having trouble getting out of bed.

A month after our first appointment, we went to see Dr. Philip Kahn, a pediatric rheumatologist at NYU Langone Medical Center, who gave Shepherd a diagnosis of juvenile idiopathic arthritis.

JIA is an autoimmune disease. It causes painful swelling in the joints. It can lead to stunted growth, disability, and, rarely, blindness.

When Dr. Kahn tested his joints, Shepherd denied that it hurt even as he teared up in pain. Our son was stoic, Dr. Kahn said, as the kids he treated often were. Shepherd turned out to have arthritis in both knees and both wrists, as well as in his left shoulder and elbow. Many months later a particular memory came back to me, its attendant mothers guilt harsh despite the passage of time: Wed bribed him to go to that last practice with the promise of ice cream.

Before driving home from the appointment, all four of us stopped for lunch at a hummus place that Dr. Kahn had recommended. We sat outside on the sidewalk, and Darin and I pretended that we were celebrating. This is great news, we told Shepherd. Now that we know whats wrong, you can take medicine that will make you feel better. Darin remembered thinking that we were lying to him, but he was trying to be more optimistic than he felt, for Shepherds sake and for mine. Shepherd barely ate his lunch.

When we got home, I called my sister, Rae. She already knew that overwhelmed feeling of getting a childs diagnosis; shed been through it with her daughter, who had severe asthma and fourteen food allergies. Rae talked about how that moment when you receive a diagnosis like this, for your child, eclipses everything. She tried to reassure me that if an illness isnt life-threatening, the fear eventually dies down, and coping with it becomes routine. Her daughter was three, the same age as Shepherd.

Rae must have made a similar call to me when she first got the allergy news about her daughter a couple of years before, but I have no memory of it. Im sure I was sympathetic. I knew that having a child with allergies was difficult and scary, of course. But it was only after we found out about Shepherds JIA, maybe not that first day, but sometime in the weeks afterward, that I realized Id really had no idea before about what she was dealing with as a mother. I called her and told her I was sorry. Partly because I hadnt fully understood it, even though I dont think I could have. I dont think anyone can. But I also wanted to tell her I was sorry for what she went through because I knew now how much there was to be sorry for.

That day of Shepherds diagnosis, Rae mentioned that a friend of her sister-in-law, a woman named Char Walker (short for Charlotte), sent her sons arthritis into remission with alternative medicine. Did I want to talk to her? I told Rae that I didnt, that we liked Dr. Kahn and wanted to follow his advice for now. We were starting Shepherd on a course of naproxen, a relative of the nonsteroidal anti-inflammatory ibuprofen. We didnt want to mess around with something that might not work when conventional treatments were known to be effective. What I thought that day but didnt say to Rae was,