Motzoei Shabbos. Havdalah goes right into a musical melaveh malkah. Before I know it the living room is full of instruments — guitars, keyboards, a few recorders, a darbuka — a frum family jam session is underway.
The kids are switching from instrument to instrument with ease. The singers are singing. Binyomin Dovid is on his darbuka for a while, but somehow that is less glamorous than the rest of the instruments.
He starts to look uneasy. We try to let him choose songs, but he feels put on the spot and he shuts down, then tries to save face — so it goes something like this:
“Okay, choose a song.”
“Binyomin Dovid can choose the song.”
“Nu, choose a song.”
“What song do you want, Dovid?”
“I choose something that Yehuda likes.”
“Uhm ... Shwekey”
So we choose a Shwekey song that Yehuda likes.
He gets upset — not that one.
Then we give him a choice of two songs.
Sometimes it works. Sometimes it doesn’t.
Nechama suggests making him the conductor. She finds a baton, shows him the basic “moves.” The kids assign a bench as the conductor’s stand. Binyomin Dovid is afraid to stand on the bench. His balance has always been poor, even for a kid with Down syndrome. So he is uncomfortable again, and takes forever to start conducting.
We suggest a low stool. He is still scared.
The other kids start playing without him; this is supposed to be fun. He gets upset again.
Finally he finds a safe place and conducts for a while.
The kids give him a microphone to announce the songs. The cord doesn’t reach, so he has to come down and go over to the mike. Then he has to go back to his “conductor place.”
The other kids are trying really hard not to get annoyed.
Most of the time we are really enjoying ourselves.
Eventually Binyomin Dovid turns over the baton to Shaya and sits on the couch. I can see he feels “out of it.”
And what was happening with me?
I try to keep up with Eliyahu and Abba — the other guitarists, but they are better than I. They try to help, calling out the chords — A minor, G, E minor, D minor, F. Easy chords, but I can’t keep up with changing so quickly. I try the recorder, which is fine unless we need sharps and flats; sort of limiting. Nechama has shown me a few times, but somehow I don’t remember the fingering.
Each song I try to figure out which of the two instruments I can manage best. The darbuka is going back and forth between Binyomin Dovid, Eliyahu — who has picked up quite a few tricks from his friend the drummer — and Moishe, who has a natural sense of rhythm. Nechama, giving her oboe a rest, is on two different recorders and then the piano, producing stunning music from each. Maybe I can get to the piano or one of the keyboards. Forget it; Moishe, Nechama, Yehuda, are all so much better than I. I would be, as I was on the guitar, waiting for them to call out chords so I could keep up. No point in taking their place. Avraham Yeshaya plays no instrument, but he sings like a malach. He loves to sing.
I love to sing and am pretty good at it. I could harmonize, too, but right now I may not do that either, which frustrates me.
I begin to feel, for the first time, that I have an inkling of what Binyomin Dovid feels like.
You see, everyone was more than willing to accommodate me. No one complained about my missed notes; they even called out the chords to me when I was playing the guitar. They would have put up with me on the piano as well, but I knew I couldn’t keep up. I love to play, but it lost its enjoyment. I didn’t like hearing my mistakes. Though I could hear the need for the chord changes, I couldn’t figure it out instantly like they all can. I wanted to play really well like everyone else, not just passably. I wanted to be like them. But I couldn’t.
I wanted to sing, to harmonize — that I knew I could do well. But that I wasn’t allowed to do. I understood why, understood that it is for my own good, but boy, was it frustrating.
Is this his life? We accommodate, but he is too clever not to notice that he is not doing as well as the rest of us. And how often does he just want to do something he does well that for some reason is not allowed right now — even if he understands why. He WANTS to talk about Pharoah for the hundredth time — because he KNOWS that story really well and he loves to tell it. And we say no, for his own good: “He has to learn that he can’t just babble endlessly about whatever he wants,” and he is frustrated.
How often does he feel like I felt that Motzoei Shabbos? How often, how long. My heart aches for him. I have often said that he doesn’t “suffer from DS,” he just has it — but for the first time I think I have a true inkling of the suffering he goes through — loved as he is, appreciated as he is, valued and respected and adored as he is ... like the not-quite-as-good musician at an impromptu jam session of otherwise excellent musicians. Not quite being able to keep up, and knowing it — it hurts.
Or like the singer who may not sing — wanting to do something you enjoy but you know you may not, when everyone seems to be allowed to enjoy themselves — it hurts.
It gets late.The instruments are packed away.We have the edible part of the melaveh malkah and the kids wander off to sleep. And me? I am drawn to this keyboard — where I can play my instrument at my own pace. Fix my mistakes, edit, rewrite; edit some more — I feel in my element here. I still hurt over the music my soul yearns to produce, limited by hands and an ear not as good as those around me. I salve my wounds on this keyboard, writing alone, at my own pace, expressing my thoughts, at my pace.
On my keyboard.
And I wonder: Where in the world is there a keyboard for my son?
This article first appeared in issue #15 of Down Syndrome Amongst Us