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A Mother's Spiritual Journey

by Joyce Ratner article

My Child Was a Short Dream article

By Rob Lovrich article

My Little Prince article

By Ingrid Redmond article


A Mother's Spiritual Journey

by Joyce Ratner

Five years ago, our daughter, Ilana, was diagnosed with a Jewish genetic disease called Canavans. Ilana would never hold her own head up, walk, talk or 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 could we possibly survive? We felt a deep aching sense of unfairness. Why did our precious daughter have to suffer everyday of her life? Why would she never be able to see the faces of the people that she loved? Why would this beautiful little child be denied a chance to grow up?

We feared the journey ahead of us. Yet amidst all the sadness we cherished Ilana, our sweet child who lavished affection on those she loved with her beautiful smile and gorgeous laugh.

We knew that somehow, we would have to find the strength we needed to care for our precious daughter, and find a way to navigate our lives. Connections with other parents of disabled children lessened our sense of isolation but we resisted turning to our friends for help and support. How could they possibly understand? We did not want their pity. We quickly discovered how awkward many of our friends and acquaintances were with tragedy.

We were told how remarkable we were in handling this and "because of you, I count my blessings." Many people offered their reasons for why our daughter was born with a dreaded disease. We heard, "It's God's will, or God doesn't give you more than your can handle, or God puts you where he needs you the most."

There was no consolation for me when I considered that God chooses to make my child suffer for some exalted reason. I was consumed with questions and doubts about the role of God in the suffering of our precious child. The books I read and the people I spoke with had more interest in defending God's honor than with addressing the bewilderment and anguish of the parent of a dying child. My relationship with my friends, family, and especially God were forever altered.

I read Rabbi Kushner's book (When Bad Things Happen to Good People) and his thoughts as a bereaved parent resonated with me. He believed his son's illness was not God's will. It was an agonizingly painful feature of physical creation, which saddens and angers God, as it saddens and angers us. For me, healing began when I considered that God did not want Ilana to die either. I felt that God was mourning with me and God hurt with me.

All the praying in the world would not change the randomness of the universe. Prayer could not heal my child, but could it help to heal my soul?

There is a Jewish saying that "human beings are God's language." We were grateful for the people in our life who not only shared with us Ilana's illness and our struggles, but also the beauty of her smile, the softness of her skin and our love for her. We felt God's presence in the doctors we found who honored our desire to focus on her comfort and quality of life.

Our religion provided us with rituals that ordered time in a realm that felt timeless before and after my daughter's death. Every week, on our Jewish Sabbath, we blessed our older daughter, Rebecca with a traditional blessing for children.

Ilana's blessing had to be different and so we prayed that she be blessed "beneath the wings of Shechina." In our religion, the Shechina is the nurturing role of God that comforts those who are ill. My bedtime lullaby to Ilana became T'filat Haderech, a prayer we say upon leaving someone we love. It was the only way I could relinquish her from my arms and give her over to slumber.

Ilana accompanied us sometimes to service at our Synagogue and whenever this prayer was sung she'd flutter her arms and shriek with delight for our Cantor was singing her blessing. Our Rabbis provided us with psalms, prayers and rituals in our daily life that helped to nourish our spirits.

During Ilana' last days, our Rabbi came often to rock Ilana, and offered us the simple, sacred healing act of being with parents in pain. She was there in all her humanness. Ilana died on December 13th in our arms. Knowing how hard it was to relinquish her because she had never been left alone, our other Rabbi cradled her in his arms to the funeral home. Our friends took turns through the night and next day, offering shimrah, volunteering to stay watch over our child's body.

In the past two and a half years since my daughter died, I still, like any mother, think often about where she is. Classical Jewish belief is very clear that there is the world of Olam Hazeh, the world to come. At birth, the soul enters the body and at death it leaves and continues to survive with God. And so, while God is caring for my daughter's soul I will care for those in life.

My motivation, now, is to be for others where I am needed. I know what it is to hurt. Aware of this, I feel compelled to ease the pain of others, or at least help them cope without being totally destroyed.

Ilana's death has caused me to know all too well, the painful limits and losses of creation. I have no more illusions of life's permanence. Yet, while Ilana's death ended her life it did not end our relationship with her as a daughter and sister.

Spiritually, we will be forever connected with our Ilana. The summer after Ilana died, friends invited us to their home in Norway. There Rebecca, Ed and I climbed a very steep mountain. Rebecca, who was seven then, said that she felt as though Ilana was urging her on, and she felt energized on her ascent.

When we reached the top we were astounded at the magnificent site. Rebecca yelled out, "Ilana, we love you" and suddenly the most beautiful rainbow appeared, clinging to the waterfall below. During Ilana's life we always used to say that Ilana's smiles were like a rainbow. It was my birthday that day, and Rebecca turned to me and said "Mom, that's from Ilana."

Other parents I have spoken with over the years have shared with me, how they too have experienced their children in so many different ways. These spiritual moments do not lessen the intense ache to hold one's child in your arms again, but it gives us something to hold onto in our hearts.

Four years ago, I had a miscarriage. All I wanted that night was Ilana. I needed to stroke her head, smell the sweetness of her breath, and rock her to sleep. I remember so vividly one night I had a dream about Ilana. In that "dream" I heard her whisper in my ear that I should adopt a baby from Russia.

The next day, I awoke with a glimpse of serenity I had not experienced in years. My sister called from Chicago to tell me how she had just learned of an organization in Washington D.C. that provides financial support to the orphanages in Russia that care for children with disabilities. I learned that this organization had connections with orphanages seeking to place relatively healthy children with "forever" parents.

This became our new vision for our life. We were excited yet so apprehensive for we knew that loss is the highest price we pay for love. We knew all too well that no parent who suffers the loss of a child ever gets over it. Yet, somehow, from somewhere, some way we found the ability to endure the greatest loss and allow ourselves to love again.

Two years ago we flew across the world to Russia to adopt and embrace our third daughter we named Emily. We needed Emily as much as she needed us. We had found each other and I can't help but believe our precious Ilana had something to do with this.

Death may end a life, but never a relationship. I have come to believe that spiritual moments can be found in the grandeur of a rainbow, the vision of a dream and especially, in the embrace of child whether it is a mother's arms or in her heart.

Joyce Ratner is a member of the Bereavement Council at Children's Hospitals and Clinics. The Bereavement Council provides guidance and support to the Healing Quilt program. If you are interested in serving on the Bereavement Council, contact Linda Lehmann at (612) 813-6622.


My Child Was a Short Dream article

By Rob Lovrich

My child was a short dream

My child changed me,

changed me every day,

changed everything,

needed to be changed often.

My child fit in the crook of my arm,

couldn't smile, and never frowned

My child is fading from my memory,

will never fade from my memory

might still be alive, if I had acted differently

thought differently,

decided differently

might not

My child contradicted himself,

contradicted the doctors,

contradicted everything I had ever believed

My child died in my arms

Right there in the crook

where he fit

(reprinted with permission)


My Little Prince article

By Ingrid Redmond

Malcolm was born on February 28th 1992, on a beautiful warm day in Toulon in the south of France. Malcolm was so incredibly beautiful, his birth was such a miracle that I cried dozens of times a day from fear of losing the gift I had just received of my little prince.

Malcolm continued to be my miracle and my little prince each and everyday after that, but he was also so much more. He was my little friend, my little partner for our days together.

Raising him was also, as we all know, quite a challenge. How could I ever be good enough to raise this little person so that he can become a good, strong and happy person, and become who ever he wishes to be. He taught me. He taught me everyday; he taught me how to be a parent; he taught me how to be a better person and he even taught me before his death how to be able to continue on living without him holding my hand.

I love you Malcolm, with every single cell in my body.

(reprinted with permission)

You are invited to submit your thoughts, writings, and poems. Please send it to Linda Lehmann, Children's Hospitals and Clinics 2525 Chicago Ave. S. Mail Stop 32-2260 Minneapolis, MN, 55404. E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it.