By Jaclyn Greenberg
I hear the sliding kitchen door open. It’s 11:30am. My eight-year-old son Henry’s physical therapist, Mark, is on time, as usual.
Mark lets himself in, slips his shoes off by the door, and heads straight to the living room where Henry is finishing up his morning virtual school session. With a big grin on his face, Mark’s booming voice fills the room, “Hey man! Are you behaving today?” Henry squeals in response and practically jumps out of his wheelchair while he waits for Mark to unlatch his shoulder straps and lap belt.
Seeing Henry so animated with Mark makes me laugh. Sometimes, when I transfer Henry out of his wheelchair, he goes limp, his near dead weight making it difficult to carry him. But never for his beloved Mark.
“I think Henry would be happier in your house, Mark,” I chuckle, half tattling on Henry. “Maybe he should head home with you after today’s session.”
“Oh no!” Mark says. “I can’t believe you’re still not listening to your mom. She’s going to put you in the doghouse tonight!”
Henry laughs even louder when Mark teases him, the energy in the room palpable. As a father of five grown children, it’s obvious Mark enjoys time with younger kids.
Mark’s tall, fit frame makes it easy for him to scoop Henry up to stretch his tight muscles.
I leave them alone. I can take a break knowing that Henry is happy. I also know he will work harder if I’m not around.
Henry is my middle child. Eight years ago, I was told that my son may never walk or talk because I caught a common virus (Cytomegalovirus) when I was pregnant with him. His diagnosis was a complete surprise after a seemingly healthy pregnancy. And I fell apart. I didn’t know how to bond with a child with such severe limitations. Nor did I know how I would manage all of his care.
After Henry’s diagnosis, I drifted through the motions of my day without focus. I watched my husband and two-year-old daughter bond with and care for Henry. But instead of enjoying him, I spent my time thinking about accessibility challenges and navigating the world with a disabled child. I slept anytime I wasn’t needed at work or with my family. It was the only way I could stop my swirling mind.
We met with doctors and therapists from the time Henry was a couple of months old. I hoped the professionals would point out Henry’s strengths so I would worry less about his future. But instead, they bluntly explained all of the medical challenges we should watch out for like seizures and hip displacement. At one point, I took Henry to see a doctor twice within a short amount of time. I was concerned about his lack of weight gain. I wanted her to tell me that he would be okay. I want her to find some way to help him. Instead she said, “Are you looking for a different answer?”
Her bluntness was dagger sharp. But she was right. I was looking for a different answer. I wanted her to see Henry’s personality that I saw peek out now and then. I wanted her to give me hope that Henry would make developmental gains. I left that day, angry at her response and frustrated with the professionals I thought would support our family.
Over the next several months we met with many physical therapists through our state early intervention program. They did their job but didn’t engage with Henry or form a personal connection.
By the time Henry was ten months old, he missed every milestone except smiling. He couldn’t roll over, hold up his head, or put something in his mouth. I was heartbroken.
Then, Mark walked into our lives. Mark was assigned to Henry after we rotated through several physical therapists. I was guarded by then, and worried about his observations of Henry. But, from day one, Mark was unphased by Henry’s challenges. He treated Henry like a friend.
As Mark stretched Henry’s tight muscles, he talked to him without receiving one verbal word in response. In turn, Henry worked hard for Mark. “Hold your head up, man,” Mark would say when Henry collapsed his neck muscles from exhaustion. And I watched, amazed, as Henry complied, not only comprehending Mark’s instructions, but by physically meeting his demands.
Each time Mark came for a session I saw Henry through a different lens. It became obvious that Henry only shows his true personality to a few people. I was relieved to see Henry engage with Mark in ways he didn’t even show his immediate family. His reactions to me are typical for any child frustrated with his mother.
As time passed, I became better at reading Henry’s subtle cues. I know when he’s giving someone side eye because they make him angry. And that, when I squeeze him, he lets out a big relaxed sigh and melts into me in response. I know that Henry needs more time to respond when someone talks to him. I started to speak up and ask for assistance when we need accommodations. I became comfortable navigating Henry’s wheelchair so we can adventure together.
Mark still sees Henry three times a week. Today, the two of them quickly settle into their routine of stretching before they play Henry’s favorite game, modified basketball. Mark doesn’t have to remind Henry to keep his head up anymore. “No, not that way, man! I’m telling you, you have reverse gravity muscles! You need to use them!” I’ll overhear from the next room. Henry snorts back in response. I smile when I hear them banter back and forth.
Sometimes, when Mark is over, I think about the professionals who don’t understand Henry. They ask, in front of Henry, if he knows what we are saying. I don’t bother to explain anymore. Instead, I think about how he responds when Mark comes over. I reflect back on the progress Henry has made and how he transformed over the past eight years. I think it’s a shame they’re missing out on such a fun kid.
I’m grateful I’m no longer missing out. Every time the kitchen slider opens and Mark shouts, “Hey buddy!” I smile and realize I’m transformed too.
Jaclyn Greenberg is a writer and mother of three living on the East Coast. She writes about her experiences parenting, and spends her time advocating for accessibility and inclusion. You can find her on Instagram at JaclynlGreenberg and Twitter at jl_greenberg.
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