Hands Off

Scarlett was playing her keyboard yesterday, which usually just means pressing a button and dancing to a string of prerecorded songs that make me want to drive my wheelchair directly over the instrument after about ten minutes. But this time, she brought some more creativity to her musical endeavors.

“Mom, listen,” she said to me. “The duck is fighting with the bird.” She pressed the lowest key and the highest key, creating the sounds of two loud animals becoming increasingly annoyed with each other.

“What are they fighting about?” I asked.

“Food.”

Then the coyote was fighting with the woodpecker. Or something like that. There were a few more battles.

“AND NOW ALL THE ANIMALS ARE FIGHTING!” she screamed, throwing her body across all the keys. Cacophony.

I used to play the piano. I never got very good, but I had a handful of songs in my repertoire and I can still remember how to play them all. Except I can’t do it. Now my right index finger is curled under like a frightened bug, and I can use it to type only on the bottom row of a computer keypad. The piano is a thing of the past.

On the grand list of my losses, it’s no big deal, since I never saw myself getting really great at piano in my adulthood. But I would have liked to teach Scarlett a few songs, or at least show her where to place her fingers on the keyboard. Or be able to lift the instrument and hide it in a closet when I just can’t take one more round of canned Ode to Joy, the tempo sped up to Chipmunk levels.

It’s hard to be a teacher and a guide when you can’t use a hands-on approach. I realized the other day that Scarlett wasn’t exactly blowing her nose the right way. “No, just hold your hand like that,” I tried to tell her. “Cover one nostril…wait, it’s getting all over your cheek!”

It’s easier, sometimes, to do things for small children. Certainly it takes less time and is usually more hygienic.

But it’s not possible for us, and so I tell myself that the hands-off approach is the reason why the keyboard keys are animals, the reason that she experiments with hairstyles (or, more accurately, why I never redo her hair), the reason that she always finds her own way to do things differently than I might have. Cliched phrases come to mind. Necessity is the mother of invention. Familiarity breeds contempt. And, my own addition to the list: Disability spawns creativity.

Sometimes I think she is tired of doing things for herself. At swim class, when she sees other moms toweling off their kids, dressing them, and combing their hair, she turns into a noodle and I just have to wait for her to realize that she has to do those things for herself, or we’ll be sleeping over in the locker room. One afternoon, another mom helped her get ready after class, and I felt frustrated, as though I wasn’t doing my job right. But if my job is to prepare her to make her way in this world, then surely pulling a dress over her own head is a worthy skill.

As is discovering the various applications for a musical instrument. She continued to explain to me the saga of the animals. “Now they are all crying,” she said mournfully, slowly pressing the keys, and shaking her head from side to side.

But guess what cheered those suckers right up? Another round of Ode to Joy.

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6 thoughts on “Hands Off

  1. Adele bentitou

    Hello Sarah,
    I see your beautifull smile in the picture and I wish I could give you a big hug. I understand the strugle and frustation you are going through and admire you courage. Taking care of 5 year old is quite challenging but such a reward when you feel these litte arms aroud you neck, oh so sweet. Keep us posted , we love your stories. Adele from France.

  2. MRO

    I have been teaching young children over ten years and I can assure you your daughter will be much better off having learned to do things for herself. There are so many kids whose parents hover over every little thing they do that when the kid gets to school they fall apart because they don’t have their personal assistant doing everything for them. Your daughter is totally capable and even though I know it’s not really a choice for you to help her become independent; I can say that her teachers will appreciate it so much. I also believe she will too in the future. I wish more parents did this for their children.

  3. Kim

    Hi Sarah!
    (Amy Farrow’s sister-in-law here, again.)
    I have replied in my head to so many of your posts, even started typing replies but then I never actually finish because your words are so beautiful that they are impossible to follow (not follow as in understand, of course, but follow as in write anything even half as eloquent… see what I mean?!). Each of your posts is more moving and impactful than the previous. Thank you for that and for sharing your life here. Sending you good wishes from NY.
    Kim

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