Opening the Eyes of My Blind Son: An Interview with this Week’s JewishMOM, Daniella Levy

Opening the Eyes of My Blind Son: An Interview with this Week’s JewishMOM, Daniella Levy

The following interview with Daniella Levy started out as a garden-variety JewishMOM of the week post, but when I found myself sobbing over Daniella Levy’s extremely moving account of raising a child who was born blind, I decided to change the title to let you JewishMOMs know that this is a JewishMOM of the Week that you definitely do not want to miss…

Where did you grow up? I lived in Pittsburgh until I was almost 10, and then made aliyah to Rehovot with my family. Americans think of me as Israeli, and Israelis think of me as American…

Where do you live? Tekoa, in Eastern Gush Etzion.

How old are you? I’m 24, though I find myself constantly surprised at how young I still am!

How old are your kids?I have two sons. Hallel (yes, a boy!) is 2 years old; Raviv is almost a year.

Can you tell us about your son’s “special needs”?
Hallel was born with congenital cataracts. That means that the lenses in his eyes were formed cloudy, allowing no light to penetrate to the retina. Due to a series of misunderstandings this was only diagnosed at three months of age, meaning that effectively he was completely blind for the first three months of his life.

Very fortunately for us, cataracts are the only form of blindness that can be completely reversible. At three months, Hallel underwent surgery to remove the cloudy lenses. Because his eyes were so small, the doctors could not implant artificial lenses at that time as they do with adult patients, so ever since he was born he has worn very thick glasses (his current prescription is about +24) to compensate for the lack of an intra-ocular lens.

Sometime in the near future, Hallel will have a checkup under anesthesia, during which the doctors will decide whether to perform surgery that day, to implant the artificial lenses. These lenses will make a huge improvement in his quality of life, since because of the very high prescription, his current glasses have a high level of distortion (and he almost always refuses to wear them in the house!)

After the surgeries IY”H, Hallel will wear multifocal glasses that will allow his eyes to adjust for distance (because artificial lenses cannot focus the way natural lenses do). God willing, potentially, Hallel should be able to see just as well any person with multifocals.

We live “Baruch Pokeach Ivrim” (“Blessed be He who opens the eyes of the blind”) every day…

Your prayers for Hallel ben Daniella Naomi would be greatly appreciated.

How is it different raising a child who is visually impaired?Well, it’s difficult to describe what it is like to have your first child and to discover after three months that he is blind.

Congenital cataracts are extremely rare: occurring in approximately 2 out of 10,000 people, and they are usually genetic (Hallel’s are not), caused by a prenatal illness (Hallel’s were not), and in only one eye (Hallel’s were in both).

Now that I have had another baby whose vision is fine, I can definitely tell the difference, but babies often have trouble tracking and focusing for the first few months. But still, there was a lot of guilt there; not necessarily because the late diagnosis was our fault (which it was in part, but we couldn’t have been expected to know better), but just this feeling of “How could I not have known?!”

I still get this sinking feeling in my stomach when I remember all the things we set up in front of him for him to “look at,” and how it was confusing when he started smiling at 2 months but not as a response to us smiling.

But we mothers manage to feel guilty about just about anything. It’s not like I deprived him of vision for the first three months of his life. But on some level, I felt that way.

Then there is the enormous difficulty of putting your three-month-old son on the operating table, holding his hand helplessly while he screams and screams with the mask over his face, watching him slowly “fade away,” and then walking out of the OR, sitting outside and waiting, trying not to think about what’s going on in there.

If this coming surgery does take place, it will be his *sixth.* We already know the drill very well, but nonetheless, it doesn’t get much easier. I could write a whole book about all of our medical ups and downs, which were exhausting and stressful.

And then, of course, there is the issue of day-to-day functioning. Fortunately, the Israeli medical system is streamlined for what they call “early intervention,” which meant that Hallel was able to see physical and visual therapists very quickly. And there is an AMAZING, AMAZING organization called Eliya (click here for Hebrew site) that runs programs for blind and visually impaired babies and small children.

We joined Eliya’s parents-and-babies program, and for three months, every Thursday I took Hallel to the center, where he would receive visual rehabilitative therapy (which would usually involve waving a lot of flashing and otherwise bright toys around for him to look at!) and physical therapy (babies with visual problems are not motivated to develop motorically like a normal child, so we needed to help him along).

After the babies were tired out, the staff put them to sleep while we mothers met with a psychologist who ran a support group for us. I developed a deep and personal bond with the therapists and staff at the center. When Hallel completed that program, they recommended that we integrate him into the daily day care program. After a lot of annoying bureaucracy, at the age of nine months, Hallel began to attend this intensive and comprehensive program, which included visual and physical therapy as well as speech, occupational, music and even hydrotherapy!

This year Hallel is joining the integration class, where there will be 5 visually-impaired or blind children and 5 “normal” children from the area.

Eliya has been there for us in every imaginable way, not only providing a solution for Hallel’s every need, but for mine as well. I would urge anyone reading this to put it on their list of organizations for donation.

Thanks to all the early intervention, Hallel’s visual development has been amazing and today he basically functions like a normal two-year-old, even without his glasses! I often say that I think he has ruach hakodesh, because there is just no other way to explain how well he appears to see despite his seriously impaired vision.

It’s clear that Hallel is not as interested in detailed pictures as a child with perfect vision and he sometimes runs into things, but I’m sure every toddler misses a table corner every once in a while…

If you are a WM, what do you do?…I’m a work in progress. At the moment: I’m a very part-time self-defense instructor for El Halev, the Israel women’s martial arts association, which offers self-defense programs for women, teens, children, the elderly and people with special needs. I’m currently developing a new improved “Kidpact” program for parents and kids aged 5-7 for the organization.

I am also a writer and translator. I have always loved language and know both Hebrew and English fluently, which gives me the ability to write well in both and thus translate back and forth. English is of course my mother tongue so I prefer Hebrew-to-English.

I am also currently training to be a childbirth educator, more because I have a passionate love for pregnancy and birth than because I want to make a living off of it. I dream of being a doula but I just can’t figure out how I could do that with young children and a husband working as a tour guide… maybe when the kids are older.

How did you become interested in teaching self-defense to women?It’s all my mom’s fault, really 😉

When she was pregnant with me, she suddenly decided that she had to study a martial art. My dad thought this was another one of those crazy pregnant-lady things and was all “Yes, dear,” but a few months after I was born she started taking karate classes. Today she is a fifth-degree black belt and senior instructor.

In the process of studying martial arts she also became interested in women’s self-defense and became a self-defense instructor too. After we made aliyah, together with some friends, she founded El Halev (the organization I work for…). She also does a whole bunch of other fascinating things, but you should interview her separately! 😉

So I learned about women’s empowerment through osmosis. I even earned a black belt in karate through osmosis, before realizing that karate doesn’t really interest me, but self-defense does!

I am passionate about women and children learning to stand up for themselves, set boundaries and develop their self-confidence. I really believe we can make the world a better, less violent place if we learn to believe in ourselves and in our ability to protect ourselves.

Outside of mothering, what do you most love to do?
If you had asked this question before I became a mother, I could have given you a long list. A lot of things are on hold now.

I love to write but have lost the drive for writing fiction as I used to in my adolescence; I have to settle for the occasional poem here and there. I love everything that has to do with music and I used to sing in choirs; I also used to be very into theater and dance, but I just haven’t had time for such things in recent years.

I try to channel my creative energies into my mothering and my teaching.

What school/university did you attend? I had a brief stint (about a year and a half) at Emunah College in Jerusalem, studying theater, education and Jewish studies. I left because I was not passionate enough about earning this degree and working in these fields to invest the enormous amount of energy and time away from my family that was required.

It was a very difficult decision for me to leave the program because I was raised in a culture that worships intelligence and education, and I still find myself battling with the voice in my head that says I am “a waste of potential”. It’s ridiculous, though, because it was one of the best decisions I ever made and I have never been happier than I am now. Just one of the many things I have to work on on my journey to total self-acceptance.

How do you define yourself hashkafically? I try not to. 😉 I’m passionately shomeret Torah u’mitzvot and Zionist, culturally “modern” with spiritually Chassidic leanings. My husband and I don’t fit into any of the boxes–even the box with the people who don’t fit into other boxes!

Are you FFB or Baalat Teshuva? I am FFB, but both my parents are baalei teshuva to some degree, and I see myself as continuing the path that they started (as I am more strictly observant than they are).

Daniella with her sons Hallel and Raviv


What’s your favorite part of being a mom? The nachas. 🙂 I tell my children regularly that I am so happy I get to be their mother.

There is nothing like that feeling of sweetness and pride as you see your child do something adorable or kind, really feeling that you had a part in bringing this goodness and light into the world. Those are the memories I try to engrave in my mind and remember during the more difficult moments.

I think the number one weapon against despair is gratitude.

What’s the toughest part, for you, of being a mom?
The exhaustion. I need more sleep than many other people and I have just never been particularly high-energy, so being the mother of small children is particularly challenging for me.

But as with everything else in my life, fear is my greatest enemy.

It is not so much the exhaustion itself that bothers me, but the fears that I project into the future: “I’ll never get enough sleep…” or “If I can’t handle this, how will I handle three?!” But it is really just that, fear. It is not reality. “All of the world is a very narrow bridge, and the most important thing is not to make yourself afraid at all.” R’ Nachman’s line is often misquoted as “to be afraid”, “l’fached.” But that’s actually not what is written. What is written is “l’hitpached,” in the reflexive form, which means “to make oneself afraid.”

That subtle nuance makes a world of difference in interpreting this eternal wisdom (I told you I love language!). It is too often we who make ourselves afraid by focusing on the past or the future instead of what is happening right now.

This fear, I believe, is really the only thing that stands between us, and who we can be. I see my mission as learning to identify when the fear is speaking, accept it, and put it in its place, rather than let it control me. But this is not easy.

Another huge difficulty is dealing with mood swings (or as I call them, “mood swoops”…). I’m very sensitive to hormonal fluctuations, and when I am pregnant or PMSed (or just plain exhausted…) all the beautiful insight, all the self-control, all the positive attitude, everything just disappears and I become an impatient, emotional, dysfunctional wreck!

I feel so helpless in the face of these episodes. I’ve grown so much and have come so far, but one week a month everything goes down the drain. It’s so frustrating!

What’s the best advice for moms you’ve ever received?
“This too shall pass….” Like the contractions of labor, even the most difficult times pass. When the babies are screaming and I have to make dinner I try to breathe deep, and say to myself, “It’s a contraction, it will pass… in an hour they will both be happy and everything will be fine again…”

The most difficult thing for me, as I mentioned, is the fear that the bad feelings (exhaustion, anger, sadness or pain) will last forever. But they won’t, they never do.

I think it takes experience to really internalize this and I am still learning, but that motto (“It’s a contraction, it will pass”) really pulls me through a lot.

How did you hear about JewishMOM.com?I was sent a link to the video of R’ Aaron’s daughter singing at her bat mitzvah.

After a while, I realized that I had read your book “Expecting Miracles” during my first pregnancy, which had been lent to me by someone we both know.

How long have you been reading JewishMOM.com? Ever since then… about a year?

What’s your favorite part of JewishMOM.com? I love the inspirational videos and stories that focus on how mothering a large Jewish family is not only possible, it is a positive and rewarding experience. My ultimate dream was always to be a mother and often I find that familiar enemy, my fear, tells me that I am unworthy of this task and that what I am doing is crazy.

Your site helps me feel that I am not alone in my craziness, and that craziness notwithstanding, I am worthy. 🙂

Related posts:

Runner Victorious by Finishing Last (2-Minute Inspirational Video)
The "I'll be Happy When..." Lie
Jewish Woman by Shirel (4-Minute Moving Song)

10 comments

  1. Hey Daniella, What a moving and wonderful story. Thank you for sharing it. Hope to see you on my next trip…whenever that may be 🙂 Love to the family.

  2. So inspirational! and I was in a bad mood, so it takes real inspirational writeups to be inspiring!
    Maybe we can have guest posts by all of these wonderful Jewish moms…they seem to all have so much to offer.

  3. Wow you are truly an inspiration Daniella. Hashem should bench you with nachas from your family, koach, gezunt and a refuah sheleyma to your beautiful Hallel. Channa Jenny, yasher koach on finding these amazing moms!

  4. I just got through such a bad evening with the kids and flopped down to read this….
    Thank you Daniella. You really helped me!!!
    May your beautiful Hallel have a refuah shleima.

  5. i usualy dont enjoy reading interviews but many things you said i totaly related to so i kept on reading yours.
    thank you for your inspiring words and for sharing parts of yourself with us. i think you are so right about the fear thing. we really need to give ourselves more love and believe in ourselves, which is so hard in such a perfectionist society…
    mmuch hatzlacha, it sounds like you are on the right track and your children are in good and loving hands!

  6. Love! Thanks for sharing… Beautiful kids!

  7. Thanks for sharing, as always you are full of love, warmth, joy, inspiration and love of Torah. I am sure your family has much nachat from you and your family as you too will in the future.

  8. Leah Uhlman

    thank you for sharing!
    i just read this ….
    and i was really inspired!
    p.s. how can i join/ take a course at El Halev?

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