illness

The Biblical Woman Who Helped Me Deal with My Son’s Debilitating Illness

synagogue

It was my first time in synagogue since my son got sick. The ache in my lower back had me crossing and uncrossing my legs, struggling to find a comfortable position on the hard wooden pews. My son was now 6 years old, weighed nearly 60 pounds, and could barely move his body. I worried I could not manage his physical care for much longer.

I tried practicing the breathing exercises I coach him through in times of pain: “Breathe into where it hurts. Breathe out and let it go.” I breathed in. I breathed out. The ache persisted. “He must think I’m full of shit so much of the time,” I thought. Then I smiled to myself for thinking the word “shit” only moments after sitting down in a house of worship for the first time in years.

Since the onset of my son’s illness—an autoimmune encephalitis—I had spent over a solid year of holidays living in hospitals. I had said many unanswered prayers and frequently chanted “Ana El na refa na loh,” as Moses did for his ailing sister Miriam. I placed a pocket-sized edition of “The Holy Zohar” under my son’s pillow. People we knew, and several we did not know, tucked notes into the Wailing Wall and said our son’s name aloud while reciting the Mi Sheberach. His name was on multidenominational prayer lists all over the world.

Unlike my subdued prayers at his hospital bedside, the synagogue was lively and spirited. Congregants clapped and swayed and danced in the pews. In an instant, the raucous singing quieted and the rabbi started his sermon. He spoke of that week’s attack on Charlie Hebdo and threats to freedom of speech. He spoke of police shootings and the plight of unarmed Black men. Aiming to make sense of the prior week’s catastrophic events, he turned to the Torah portion, Exodus 4:10, wherein God calls upon Moses to lead the Jewish people from slavery in Egypt to freedom in the Promised Land.

After describing Moses as a man “who can’t speak; who doesn’t know how to bring forth what is inside of him,” he noted several “amazing women” in the beginning of the book of Exodus: Shifra, Pua, Miriam. “But who’s the real hero of the story?” he asked the congregation. “Batyah!” The room erupted in laughter.

Batyah, the rabbi continued, was Pharaoh’s daughter who adopted Moses, the child of Jewish slaves in her father’s Egypt. In an effort to save him, as the story goes, she plucked the crying baby from the Nile and raised him as her own. She named him, nurtured him, helped him overcome obstacles, and provided him every opportunity to become the man who ultimately freed the Jews from their Egyptian oppressors. The rabbi bellowed, “Bat Pharoah [daughter of Pharoah, Batyah] put her life at risk to preserve her life and the life of this child.” And, after a pause for emphasis, he declared, “She’s not Jewish.”

Moses thrived in Batyah’s care and was ultimately called upon by God to lead the Jewish people to freedom. A reluctant leader, Moses expressed his reservations. The rabbi raised his voice and looked upward, “Lo ish devarim anochi. I am not a man who can speak. I don’t have language.”

I was stunned. I had heard the story of Exodus many times before but had never focused on Moses’ adoptive mother or his difficulty with speech. I looked at the congregants around me, only one of whom I knew. Did he tell the rabbi I was coming? My connection to this sermon went deep. My husband and I adopted our son at birth. We are white. He is Black. His illness took away his ability to speak.

My son, whose Hebrew name means wise teacher, was healthy and vibrant until a few months shy of his third birthday. When he suddenly and unexpectedly fell ill, I stopped working and my life focus became his survival and recovery. My son’s illness transformed me in powerful ways. I gained a sharp sense of purpose that dampened my prior professional ambition, existential angst, and generalized neuroses. But I also found myself intensely isolated, with difficulty relating to most other mothers.

After we returned home from our lengthy hospitalization, I tried to find a support group for similarly situated parents. When I contacted the woman who runs support groups for mothers of children with special needs in our area, she was kind and concise: “I don’t think any of our current groups will be right for you.” She explained that she ran groups for parents of children born with severe medical complications, genetic conditions, or brain injuries resulting from birth accidents. She also ran groups for parents of children on the autism spectrum, or those facing attachment issues with their adopted children who have special needs. But she had nothing that she thought related to my rare and unique circumstances.

I joked, “What do you mean, there aren’t other white Jewish women who, with their Italian Catholic husbands, adopted a Black baby who after several years of good health became critically ill, is currently non-verbal, non-ambulatory, and tube-fed, but still has a decent chance at recovery?” My attempt at humor buffered how much more isolated I felt for having reached out only to come up empty.

But now I had Batyah.

For days after hearing the rabbi’s sermon, I could not stop thinking about Moses’ physical limitations. I did some research and found Talmudic and scholarly interpretations that his physical challenges may not have been limited to speech. My image of Moses had always been a strapping, handsome Charlton Heston with sculpted muscles and a booming voice.

My son, too, is strapping, incredibly handsome, and, prior to his illness, had a booming voice. But after the most horrifying months in the hospital, in which he would voicelessly scream through episodes of violent thrashing that only pharmacological paralysis could stop, his tongue and facial muscles could not form words around the sounds he finally started to make. His tongue, as Moses described his own, seemed to be heavy.

I wished I could ask Batyah about her experiences of transracial adoption and extreme motherhood. Were there lessons in helping Moses navigate the anti-Semitism of her time without speech that would help me support my son as he navigates the anti-Black racism of ours? Did Batyah also tire of hearing about how amazing she was for adopting a Jewish (or Black) boy and supporting him to thrive in the body his soul occupied, no matter what it could or could not do? Did she too take these well-meaning comments to reveal a subtle (or not-so-subtle) devaluing of her son’s life?

Connecting to Batyah’s story gave me a visceral anchor, an essential connection to something that felt primordial, solid, and right. For the first time in my life, I found a Torah story to be a source of profound support. Without the grandiose delusion that my son might one day part the sea and lead his people to the Promised Land, I was prompted to see even more clearly how he has expanded the capacity of those around him for imagination, humor, laughter, joy, and fierce, unyielding love.

To my surprise and wonder, finding a Biblical precedent for my experience of extreme motherhood made me feel less alone.


Read More:

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Sandra Joy Stein

Sandra Joy Stein is a writer and education leadership consultant who lives in New York.

The opinions expressed here are the personal views of the author. Comments are moderated, so use your inside voices, keep your hands to yourself, and no, we're not interested in herbal supplements.

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