My Son Is

Random thoughts on the most important boy that I know in the waning weeks of Cerebral Palsy Awareness Month:

My son is a constant loop in my thought track.

My son is the boy you can hear from outside the house or the room, making sounds that seem to have no form.

My son is quiet, sometimes for hours.

My son spends most of his time inside, in his wheelchair or on the floor, watching movies, listening to music or stories, making fancy moves, playing with me.

My son is the boy with clenched hands, held up in the air as if in protest, tight hands that close like vice grips because the part of his brain that says “let go” is on sabbatical.

My son stands out in a crowd even if he can’t stand by himself.

My son was diagnosed as an infant with spastic quadriplegia cerebral palsy, and if you’re sincerely interested in learning more about that, there’s plenty of great information on the Internet that you should read.

My son is fine, and that’s exactly what I’ll say when you ask, “what’s wrong with him?”

My son’s diagnosis doesn’t define who he is; everyone is different and should be valued for their individuality, including people diagnosed with spastic quadriplegia cerebral palsy.

My son sometimes has scratches on his smooth and brilliant face, some of them fading, some of them fresh, because he can’t quite control his hands, and because it’s difficult to closely trim his fingernails, what with those clenched hands.

My son has a smile with no strings attached, a gigantic smile for you and especially for me whenever I enter his space, because my son, inexplicably, hasn’t tired of his old man yet.

My son can walk, with help, and for those who are willing to help, it’s time well spent. In fact, you might find yourself dancing with him once you get him up and going.

My son laughs at fart sounds and roughhousing and curse words, and at other people’s laughter, because he wants in on the joke, expects to be in on the joke, in spite of a world that mostly considers him an afterthought.

My son is a minority within a minority, but he doesn’t have many advocates crying out for his civil and human rights.

My son may not deserve your love, but he deserves your respect.

My son and his parents live life on the brink, and the brink is consistently being redefined or moved.

My son loves super heroes and music, especially music.

My son has good taste in music, but is patient enough to listen when I play it, and encourages me by singing along to whatever tune I happen to be scratching at, especially Ripple. He loves Ripple.

My son sings out loud in wordless joy, smiling at his mother’s silly dancing, always up for a live show, always unabashed in his appreciation.

My son loves an adventure, especially if it includes a fast, bumpy ride that puts the wind in his face, which inevitably elicits delighted squeals and screams.

My son cries when I sneeze, almost always, tears and everything, but he isn’t a baby, and if you respect him, you won’t speak to him like one. He is quirky.

My son is brave, proud, strong and sincere.

My son is social, and friendly, and forgiving, and honest, and damaged, and perfect.

My son is a troublemaker, sometimes frustrating, sometimes scary, and very funny.

My son is a work in progress, like your son.

My son is a teacher.

My son is wonderful company, and his company is a gift that few people seem to want or understand, but it is a gift that I can’t seem to get enough of.

My son is loved, fiercely.

My son has very few friends his own age. He doesn’t have many visitors. But if he gets lonely, he doesn’t show it, at least not in ways we understand yet.

My son always says please and thank you, without using those words.

My son hates long drives. For now.

My son is approachable and accepting and loves your company, if you’re willing to share it, and if you really want to know him or be with him, he is within reach, and he’s totally worth the effort.

My son can be a tough taskmaster. He doesn’t give his parents any days off, just like other sons.

My son is unique.

My son needs me, and his needs are ever-changing, and the older he gets, the more he needs me, and the more I grow.

My son would be left behind if it were not for a handful of people who are physically capable and otherwise compelled to care for him, and the bigger he gets, the harder it is to care for him, and the easier it is to leave him behind.

My son will never be left behind as long as I’m alive.

My son is a constant loop in my thought track, and I don’t plan on pressing the stop button, because he’s my son.

7 thoughts on “My Son Is

    • Never any doubt about it, sister. Don’t worry about showing it when you can just be it. You always have our back. I’ll never forget that you flew all the way to Pennsylvania to make Jane some good soup!

  1. If “Son” went to our school, he’d have lots of friends, but on the other hand it sounds like he has excellent company and stimulation with his parents. As a homeschooling parent turned public school employee, It’s a trade off. Great writing; sounds like a great son and friend. Thanks for introducing us.

    • Joey does have some friends at school, and plenty on his Heroes sports teams (but very few his own age, as Heroes has “kids” who are in their 20s, 30s, and up). I remember having friends visiting all the time and my son doesn’t have that experience, so I sometimes wonder how he feels about it. But you’re right, J — he is a great son and friend. Thank you so much for weighing in.

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