From Pain to Revelation

How One Devastated Mother Left the ‘Waiting Room’

Goodness Pursues You: Rabbi Naomi Levy struggled to cope with daughter Noa’s disabilities.
COURTESY NAOMI LEVY
Goodness Pursues You: Rabbi Naomi Levy struggled to cope with daughter Noa’s disabilities.

By Gabrielle Birkner

Published October 27, 2010, issue of November 05, 2010.
  • Print
  • Share Share

Rabbi Naomi Levy rarely answers the phone on Shabbat. But nine years ago, she made an exception, and on the other end of the line was a doctor with grim news: Levy’s 6-year-old daughter, Noa, had a fatal degenerative disorder called ataxia-telangiectasia (A-T). How Levy faced life in the wake of the devastating diagnosis is the subject of her third book, “Hope Will Find You: My Search for the Wisdom to Stop Waiting and Start Living” (Doubleday, $23). Levy, who lives in Venice, Calif., with her husband, Jewish Journal editor Rob Eshman, and their two children, Adin and Noa, is the founder and spiritual leader of Nashuva, a Jewish prayer community and outreach organization in Los Angeles. She was also among the first group of women to study at the Jewish Theological Seminary in 1984. Levy spoke recently with the Forward about the spiritual toll of the diagnosis, the way she learned to flourish amid uncertainty and her daughter’s health today.


There’s a very powerful scene in the book in which you first learn of Noa’s condition. How did you respond in the immediate aftermath of that news and in the years that followed?

At first, I literally buckled to the floor. My life as I knew it stopped. I stopped teaching, I stopped speaking, I stopped traveling. I spent my time taking my daughter to different doctors, to physical therapy, occupational therapy, speech therapy, swimming therapy, vision therapy. My life became, literally, sitting in waiting rooms. And metaphorically, my life was a waiting room.

After the initial diagnosis, you were told it would be seven years before doctors knew for sure whether or not your daughter had A-T. You write that the protracted waiting game threw you into a “spiritual coma.” What was that like, and how did you emerge from it?

I didn’t know what to pray or how to approach God on this. There was this irony in that I was finishing a book of prayers called “Talking to God,” and suddenly I felt mute. There were times when I felt like God and I were tugging on the same child, and I was saying, “You can’t have her, she’s mine”— as if God was a body snatcher. But then I would watch the same child pray and I could see how prayer strengthened her. And over time, I had these little shifts in my relationship with God. I started to see that maybe God hadn’t abandoned me or Noa or anybody. I started to understand more deeply that God wasn’t anyone’s personal bodyguard; that’s not God’s job description.

Waiting can be so deeply uncomfortable, especially, I imagine, for a parent waiting on news about her child. Do you have any advice for those who are living in a state of not knowing?

As a rabbi, I’ve spent so many years counseling people who were waiting for their lives to begin. They say, “My life will begin when I fall in love” or “when I get married” or “when I have a baby” or “when I get this job” or “when I get out of debt.” I’ve always counseled people to see that this day is my life, perfect or not. No matter what we’re waiting for, the preciousness of today can get really lost.

More often than not, people talk about hope as something that you have to seek out, rather than something that comes after you. So why the title “Hope Will Find You”?

My daughter has physical disabilities and also learning disabilities. When it came time to begin studying with her for her bat mitzvah. I was worried that I didn’t know how to teach her. I started teaching her and we found together all sorts of creative ways to make the parsha come alive. When I asked her, “What does your haftarah mean to you?” she started saying all these beautiful things. She said, “I think what it’s saying is that if you don’t like your life, if you try really hard you can find hope.” Then there was a pause, and she looked at me and she said, “No, hope will find you.”

How did you understand that message?

I literally gasped when she said it. I realized how long I’d been trying to find hope, and for how many years I had been trying to hold onto hope. What Noa was telling me was that I didn’t have to strive so hard or hold on so tightly; it was about letting hope in. That’s what we say in the 23rd psalm, that most famous psalm, “Goodness and mercy will chase after me, it will pursue me.” We just have to let it catch us.

After years of spending so much of your time in waiting rooms, you ultimately returned to the pulpit. Tell me about the genesis of Nashuva.

I was having breakfast with two very dear friends, and they said, “It’s time for you to start leading people in prayer again.” I thought that this was insane; I wasn’t in a state of mind or a time in my life where this would be possible. But instead of smiling and putting that thought away, I decided to call one place — a church I used to drive by, when I would visit patients at UCLA. I said, “Is the reverend there?” and the voice on the other end of the line said, “This is she.” I said, “I’m a rabbi, and I was wondering if you’d be open to a bunch of Jews coming to pray in your church…” She said, “Nothing would make me happier than to have Shabbat services at the church.” [When we met], I looked at her, and it was like looking at myself. She said, “I’ve known you my whole life,” and I said, “I know.” From that moment on, every aspect of Nashuva felt like some form of “hope will find you.”

Noa is now 14 and, while she doesn’t have the fatal disease with which she was originally diagnosed, her condition still remains very much a mystery. How is she doing?

She’s doing beautifully. She does have disabilities with coordination and balance, but her determination is just so strong. It’s not a fierce determination; it’s a joyful determination that gives her a certain kind of buoyancy. She’s learning all the time ways to work with her disabilities and her abilities. She’s actually got quite a powerful voice for writing.

Gabrielle Birkner is the Forward’s web editor.


The Jewish Daily Forward welcomes reader comments in order to promote thoughtful discussion on issues of importance to the Jewish community. In the interest of maintaining a civil forum, The Jewish Daily Forwardrequires that all commenters be appropriately respectful toward our writers, other commenters and the subjects of the articles. Vigorous debate and reasoned critique are welcome; name-calling and personal invective are not. While we generally do not seek to edit or actively moderate comments, our spam filter prevents most links and certain key words from being posted and The Jewish Daily Forward reserves the right to remove comments for any reason.





Find us on Facebook!
  • This is what the rockets over Israel and Gaza look like from space:
  • "Israel should not let captives languish or corpses rot. It should do everything in its power to recover people and bodies. Jewish law places a premium on pidyon shvuyim, “the redemption of captives,” and proper burial. But not when the price will lead to more death and more kidnappings." Do you agree?
  • Slate.com's Allison Benedikt wrote that Taglit-Birthright Israel is partly to blame for the death of American IDF volunteer Max Steinberg. This is why she's wrong:
  • Israeli soldiers want you to buy them socks. And snacks. And backpacks. And underwear. And pizza. So claim dozens of fundraising campaigns launched by American Jewish and Israeli charities since the start of the current wave of crisis and conflict in Israel and Gaza.
  • The sign reads: “Dogs are allowed in this establishment but Zionists are not under any circumstances.”
  • Is Twitter Israel's new worst enemy?
  • More than 50 former Israeli soldiers have refused to serve in the current ground operation in #Gaza.
  • "My wife and I are both half-Jewish. Both of us very much felt and feel American first and Jewish second. We are currently debating whether we should send our daughter to a Jewish pre-K and kindergarten program or to a public one. Pros? Give her a Jewish community and identity that she could build on throughout her life. Cons? Costs a lot of money; She will enter school with the idea that being Jewish makes her different somehow instead of something that you do after or in addition to regular school. Maybe a Shabbat sing-along would be enough?"
  • Undeterred by the conflict, 24 Jews participated in the first ever Jewish National Fund— JDate singles trip to Israel. Translation: Jews age 30 to 45 travelled to Israel to get it on in the sun, with a side of hummus.
  • "It pains and shocks me to say this, but here goes: My father was right all along. He always told me, as I spouted liberal talking points at the Shabbos table and challenged his hawkish views on Israel and the Palestinians to his unending chagrin, that I would one day change my tune." Have you had a similar experience?
  • "'What’s this, mommy?' she asked, while pulling at the purple sleeve to unwrap this mysterious little gift mom keeps hidden in the inside pocket of her bag. Oh boy, how do I answer?"
  • "I fear that we are witnessing the end of politics in the Israeli-Palestinian conflict. I see no possibility for resolution right now. I look into the future and see only a void." What do you think?
  • Not a gazillionaire? Take the "poor door."
  • "We will do what we must to protect our people. We have that right. We are not less deserving of life and quiet than anyone else. No more apologies."
  • "Woody Allen should have quit while he was ahead." Ezra Glinter's review of "Magic in the Moonlight": http://jd.fo/f4Q1Q
  • from-cache

Would you like to receive updates about new stories?




















We will not share your e-mail address or other personal information.

Already subscribed? Manage your subscription.