This is an excerpt from a heart wrenching and enlightening documentary (available on Netflix online) entitled Praying with Lior.
Here is an article his mother wrote about him before she died of cancer.
Praying With Lior. by Devora Bartnoff
Most mornings I have trouble getting out of bed. It’s an old bad habit. I
used to lie awake and brood. I’ve progressed to the point where I now lie awake and meditate. It’s very joyful, actually. But it still doesn’t help me get out of bed.
Often my 5-year-old son, Lior, wakes up during my morning inertia. His
general routine is to climb out of his bed (he’s learned better than to expect
a parent to attend to him at the early hour of 6:30 a.m.) and mount the stairs to the third floor, where our bedroom is. He peeks into the doorway
expectantly. I lift up my head. “Hey Lior,” I whisper. “Come to Mommy.”
He bounds over and then, with unsuppressible exuberance, he bursts out,
I lift him up and tuck him under the covers, feeling the blessing of this
very special soul cuddled beside me. My cheeks are soon soaking wet from his kisses. “I love kisses,” he whispers with serious big brown eyes.
“Lior, let’s not wake up Daddy. Let’s go downstairs.”
Lior slides out from under the covers. I follow him, grabbing my early
morning uniform — stretched-out sweater and tattered, 10-year-old Israeli
He leads the way with a purposeful step, down two flights of stairs to
the front room. He grabs two prayer books from the shelf and hands me one. We cuddle under Grandma’s crocheted blanket.
Lior’s davening is mesmerizing. His little body naturally moves in the
way of the ancient zaydas. His eyes are halfshut. A serious look is on his
face. He vocalizes sounds reminiscent of Kabalat Shabbat, Friday night z’mirot, Shabbat morning p’sukei d’zimra, and various Yiddish melodies. His voice is clear and very strong.
I remember the winter after Lior was diagnosed with Down syndrome. The
entire family participated in a statewide conference for families with young
children in early-intervention programs. Another participant approached me
after a workshop we had both attended. “I heard what you said in there. You’re so lucky. You have a child with Down syndrome. He’s a real person. My young daughter may someday be able to turn over herself, but that’s all I can hope for. Your son is going to have a life.”
I think about that woman a lot. I am lucky. I suppose most people don’t
think so. But when I sit beside Lior at sunrise and he pours his heart out to
God, using every technique four years of speech therapy have given him, raising his little arm to emphasize his earnestness, I feel deeply, deeply blessed.
And I’m mystified about why he loves to pray so much. Most typical kids
his age would much rather be playing with LEGOs.
The big question Lior asks every morning is, “Is it Shabbas?” And when
the answer is, “Yes, Lior, tonight is Shabbas, and tomorrow we go to shul,” he jumps up and down with unbounded joy and shouts, “Yeah, Shabbas!”
His sense of time reflects a deep understanding of the process of Jewish
time. There’s “everyday” profane time and then there’s Shabbas, holy time. Each day of the week brings us that much closer to holy time, to Shabbas. I think Lior’s weekday davening is a way of borrowing from Shabbas’ holiness. It helps keep him on track. Great Jewish philosophers have written deep and powerful essays on this phenomenon. Lior gets it naturally.
My family has the blessing of living in a neighborhood that houses
several wonderful davening communities. Our community, Minyan Dorshei Derech, is part of the Germantown Jewish Centre. For Lior it is a second home.
There are those Saturday mornings when I admit I would love to lie in
bed; it’s just too much trouble to get four children out to shul. I’m tired
from the previous week’s chemotherapy — there are a lot of great excuses. But most of the time I can’t. I get there on time because I don’t want to miss davening with Lior.
My husband feels the same way. We’re responsible for providing Lior with
this weekly opportunity to do what he loves to do best and to be where he loves to be most in the whole world.
Lior is a very important and vibrant member of the community, even though
he’s only 5-1/2. When he enters the room he nods to people, gets his Siddur, puts on his tallit (specially made for him by several women in the
neighborhood) and takes his regular seat in the front. He shyly looks around to see if his beloved regulars are sitting in their usual spots. He then finds the correct page, according to where my Siddur is turned, and begins to quietly daven. Periodically the group breaks out in song. Lior listens for a minute. Then he closes his eyes, and with that same serious look on his face I saw during our private weekday davening, he lets go his voice.
I used to think people were so aware of Lior because they loved him so
much. I now realize it’s a much deeper relationship than that. Lior’s kavanah
(intentionality) serves as an inspiration to every adult in that room. When he
lifts his voice with unwavering clarity, “Ya, ya, ya,” and puts it inside the
cacophony of voices around him, he gives everyone in the room permission to do the same. People measure where they are in their inner prayer experience against the authenticity of his. His davening has a profound effect on the community.
Lior deeply loves the Torah. He shows this love in very physical ways.
Each week he helps to open the ark. And then, upon seeing the Torah sitting
inside, he stands on his very tiptoes and gives it a huge hug and kiss. He
smiles to himself. “Torah,” I hear him murmur to himself. “Torah.” I am in awe of such a moment of kedusha, of pure holiness.
Lior then proceeds to walk through the entire congregation and shake
everyone’s hand. He greets his special adult friends at this time. “Hi Mitch,”
he whispers. “Michael, Good Shabbas.” A collective smile flows from one end of the room to the other as Lior continues on his rotation. He manages to connect with every single member of his prayer community.
“Can you imagine what his Bar Mitzvah is going to be like?” I hear
someone whispr. I feel a surprisingly strong emotional reaction to that
statement. I pray that God will grant me the blessing to live to be part of
that day. I also wonder what it will be like. Will Lior continue to be able to
create a place for himself in this community? Will his charming childlike
innocence be able to evolve into more mature forms of expression?
And then I hear our communal introductions at the end of the service.
It’s Lior’s turn. “Lior Liebling,” he says clearly (except for the Ls, which
still give him trouble). And I think, he’s doing just fine. He’s figuring it
out himself. It’s my job to sit back and trust him. I don’t know where he’s
going with all this. But our communal tradition is powerful enough to guide
him. And he’s wise enough to listen.
Lior has opened up so many people to the multidimensionality of human
nature. What does it mean that he is “retarded”? He speaks to God in a way that eludes most of us. He is one of my most important spiritual teachers.
And he gives great kisses.
Devora Bartnoff is the mother of four children, a family therapist in
private, and a rabbi. She serves as coordinator of Community Outreach on
Healing for the Philadelphia Board of Rabbis.
Article copyright Jewish Exponent.