Nine years ago our daughter Ilana was diagnosed with a Jewish genetic disease called Canavan disease. Canavan’s is a progressive disease of the central nervous system for which there is no treatment. At the time, we learned that one little enzyme would prevent Ilana from being able to hold her own head up, to walk, to talk, or to feed herself. She would develop seizures and become blind. What we didn’t know is that our daughter would live for only three and a half years.

So many questions pounded at the pain in our hearts. Why did this happen to us? How would we possibly survive? We were filled with a deep, aching sense of unfairness. Why would our precious child not be able to see the faces of the parents and older sister that she loved?  Why would this beautiful little soul be denied the chance to grow up?

We feared the journey ahead of us. Yet amidst all the sadness we cherished this sweet child who lavished affection on those she loved with her beautiful smile and gorgeous laugh. Ilana wouldn’t close her eyes to go sleep unless we read her Good Night Moon. She loved my noodle kugel, the wind sweeping across her face on her stroller rides, and the Hebrew melodies we sung to her on Shabbat.

Ilana would giggle with delight each time we sang her Debbie Friedman’s song T’filat Haderech before she went to bed and we blessed her on Shabbat with B’ruchot Habaot, another of Friedman’s songs: "May you be blessed beneath the wings of Shechina, be blessed with love, be blessed with peace. "We embraced Ilana, not knowing how we would ever let her go.

We assumed that to care for our child and sustain our family we would turn to our religion and our Jewish community. But our search began as a lonely and discouraging one. We were consumed with questions and doubts about the role of God in the suffering of our precious child. To our dismay, the books we read and people we spoke with had more interest in defending God’s honor than addressing the bewilderment and anguish of the parent of a dying child.

We quickly discovered how awkward many of our Jewish friends and acquaintances were with Ilana and her disabilities. Many people came up with effusive platitudes as they attempted to provide a reason for why our daughter was born with this dreaded disease. We heard,"It’s God’s will…" or "God doesn’t give you more than you can handle…" or "God puts you where he needs you most."

There was no solace for me in those sentiments, nor was there consolation when I considered the idea that God would choose to make my child suffer for some exalted reason. I read Rabbi Harold Kushner’s book When Bad Things Happen to Good People and his thoughts as a bereaved parent resonated with me. Kushner believed his son’s illness was not God’s will; rather, it was an agonizingly painful feature of physical creation that saddened and angered God as it saddened and angered him.

For me, Jewish healing began only when I considered that God was mourning with me, that God held Ilana’s soul and mine through the night. I knew that all the praying in the world would not change the randomness of the universe, so instead I used prayer to pray for strength and courage for me and my family.

There is a Hasidic saying, "Human beings are God’s language." I can’t think of anything more apt — we felt God’s presence in our doctors, our rabbis, and the many other professionals who provided us with compassion and unfailing support. We heard the language of God in those friends who shared with us not just Ilana’s illness and our struggles, but also the beauty of her smile and our love for her.

In time we felt the need to connect to other Jewish parents of children with profound disabilities but when we went looking, we found no support programs in our community. We realized we had seldom even seen anyone with a disability in any of our synagogues, classrooms, or community programs. So with the support of the Minneapolis Jewish Family and Children’s Service our family established Lech L’Cha, a support group for Jewish families of children with disabilities. In addition, we became involved in establishing the Twin Cities Jewish Healing program and the Minneapolis Inclusion Program for people with disabilities.

To our greatest sadness, our daughter, Ilana, passed away when she was only three and a half years old. As I reflect on her life and what we as a Jewish community have created with her as inspiration, I feel the presence of my daughter’s sweet and vital spirit. Her life and death fundamentally changed all who loved her. Through my life, I will give my daughter life by the acts of tzedakah I perform in her memory. I am so grateful I had the chance to be Ilana’s mother.

No parent who suffers the loss of a child ever gets over it. But for me, one of the great proofs of God’s existence is that somehow, from somewhere, some way, human beings find the strength to endure loss and start over again.

Two years after our Ilana passed away, we flew to Russia to embrace our third daughter Emily, whose Hebrew name is Chava, meaning "life." When she is asked how many sisters she has, she informs people that she has two: one who lives with her and one who died before she was adopted but who lives in her family’s heart. I believe the strength and resiliency we found to love again could only have come from the help of God and the support of our Jewish community. 

Joyce Ratner is a social worker and married to Ed Ratner, a physician. They live in Golden Valley, Minnesota with their daughters, Rebecca, 15 years old, and Emily, 6 years old. Their third daughter of blessed memory, Ilana, lives in their heart. If you would like to contact her, you can via email at joylr54@aol.com.

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