about the author:
Lauren Fritz has two sons with Duchenne Muscular Dystrophy. She is a private practice therapist and also cares for her sons fulltime.
The Need for Touch
Last night, as I was heading to bed, I stopped in to say goodnight to my son Jake. He stays up later than me to game on his computer. As I kissed him on top of his head, he asked, “Can I have a hug?” I responded, “Of course, anytime,” and leaned around his chair, encircling my arms around his shoulders and leaning my head on his, squeezing tight.
Jake no longer can raise his arms to hug others by himself. Duchenne has taken this. His wheelchair physically separates him from others.
He no longer can soak up the informal things most of us take for granted: spontaneously putting your hand on a friend’s, bumping into one another’s shoulders, touching while walking, high-fiving, reaching out to another person when needing reassurance or comfort.
While we have little choice other than to accept the physical course of this disease, I try hard to remember that my sons’ needs for affection and closeness are no different than yours or mine. I do touch Jake to adjust his body, dress and bathe him. But I try consciously to remember that he needs human, nurturing touch and affection as well.
My younger son, Ryan, came home yesterday, and told me a cool story…
He often experiences kids at high school making rude comments about his chair, unprovoked. They will call him characters in TV shows or games, that use wheelchairs or wheels of some sort. He tries to look like he ignores it, but he comes home and tells me about it in hurt and frustration.
Yesterday, a kid was dancing in some free time at school. It was a sunny, warm day, and some of the kids were given opportunities to be outdoors during class. This boy (who Ryan doesn’t know) came up to Ryan and shook his hand. Ryan also uses a powerchair, but still has strength in his arms. He asked Ryan if he liked his dancing.
Ryan came home and told me about it. Such a simple, affirming, connective gesture. It made a world of difference in Ryan’s day.
We are more alike than different. When you see my kids, greet them as you would, me. Connect through your hugs, your handshakes. Even though Jake cannot lift his hand, you can reach for it and give it a warm squeeze. This is so vital. Even more so for our dearest ones with Duchenne.
When we know better, we do better.
Thank you for letting me share this gentle awareness. May there be a sense of loving connection for each of us: for you, for me, and for all of our incredible friends with Duchenne.