Published on May 25th, 2021 | by Wendy Kennar0
“I got you. I’m right here; I’m right here,” Ryan encouraged me.
My twelve-year-old son walked in front of me, trying to guide me up the stairs. My husband, Paul, was behind me, standing guard and acting as back-up in case I lost my balance.
I hadn’t been upstairs since coming home from the hospital. I had spent the afternoon on the couch and hobbling around between the living room and kitchen. But now it was approaching bedtime, and I needed to get upstairs.
Each step hurt.
I cried—from the pain and from fear.
I had had a muscle biopsy earlier in the morning. A small piece of muscle from my left calf had been removed, because my neurologist and rheumatologist believed this was the next diagnostic test needed to determine an updated treatment plan. For the past ten years, I have lived with an autoimmune disease called Undifferentiated Connective Tissue Disease. UCTD shares overlapping symptoms of rheumatoid arthritis, myositis, and lupus. It means on a daily basis, I experience some degree of pain, fatigue, and weakness in my left leg, specifically my calf. But for the last year, the symptoms had spread to my thigh.
Now, my bandaged leg was tender and sore, and walking was more like a slow, laborious shuffle.
“I know it’s hard now, but it will get better. This will pass,” Ryan said. His tone was soft. Soothing.
I bit my lip, took a breath, and smiled.
Those were all the same words I have spoken to Ryan each time he’s been sick. Reminders that he’s not alone. Reminders that I’ll see him through it. Reminders that the discomfort (whether it was a high fever, a bout of vomiting, or a hard cough) would pass and wouldn’t last forever.
Later that night, as I sat in bed and propped my leg up on an extra pillow and tried to find a position that didn’t shoot pain up and down my leg, I thought again of Ryan’s comforting words. I thought of his hand stroking my arm, as I gingerly sat on his bed, reading, before turning off the lights and wishing him “sweet dreams till sunbeams find you.”
The whole interaction made me think back to my days as a kindergarten teacher.
Once, early in my twelve-year career, during one of my parent/teacher conferences, a parent told me, “We know exactly what you say in class. ‘N’ comes home and plays school. And she must be doing you, your voice.”
I blushed. “Oh, I’m…”
Before I could explain my embarrassment, and my hope that my classroom messages were being accurately re-enacted at home, my student’s parent interrupted me.
“We love it! You’re so good with them. So kind,” my student’s father said to me.
And I now had experienced something similar with my son. Without any prompting, Ryan had attempted to comfort me, to ease my pain, to make me smile during a difficult, scary time.
He had heard me all those times when he had been on the receiving end of the words I had offered him. More than that, he had listened.
I always knew kids listened and watched and repeated. I saw it in the way Ryan would pick up a book that had fallen off the shelf at Target. I heard it in his “please” and “thank you” when he ordered a smoothie at our neighborhood cafe. I smiled when, instead of saying “oh boy,” he’d utter “Oh Boise, Idaho,” just like I do.
But this felt different, because I was on the receiving end.
Usually I feel a strong sense of guilt when it comes to Ryan growing up with a mom living with an invisible disability. I first became ill when Ryan was two years old. This is all he knows. He doesn’t remember me “before.” He has grown up with the confusion, unpredictability, and uncertainty that go hand-in-hand with my life with a chronic illness. Yet everyone (my husband, my parents, my therapist) tells me Ryan hasn’t been short-changed in any way. If anything, I’m hopeful he’s learned patience and acceptance and a gentleness he might not have learned at this stage of his life.
But it’s not easy, when I’m the reason we have to postpone a family outing to a museum. When I have to tell my son I just don’t have the energy or the strength to leave the house, to walk the galleries, to marvel in quiet appreciation in front of my favorite Picasso painting.
And there have been moments when Ryan was younger, when he truly didn’t understand. I remember Ryan coming home from kindergarten, eager to demonstrate the soccer ball kicking skills he had learned in his PE class earlier that day. My husband was at work, and I was the go-to playmate.
I tried to explain to Ryan that kicking a soccer ball wasn’t easy for me, and in fact, was something my doctor would advise me not to do. Ryan kept telling me to kick with my right foot and don’t use my “bad leg.” It was hard for Ryan to understand that kicking with my right foot meant all the weight was on my left leg. And that hurt. And in that moment I didn’t see myself as an encouraging, supportive, engaged mom. I saw myself as incompetent.
No one knows how or why I developed this autoimmune disease. And that has been one of the most heart-breaking lessons I have had to teach Ryan. Sometimes people just randomly get sick. Sometimes worse than others. Sometimes those illnesses can’t be cured or fixed. They never go away; you just learn to live with them.
But on that biopsy day, Ryan showed me I have also taught him other, more important, lessons too. Kindness. Patience. Gentleness. Empathy. And he has learned them.