Mourning Our Way: Adapting Jewish Mourning Customs for a Special Needs Family

Four months ago I was about to get ready for bed when my cellphone rang. I ignored it because it was from an unknown caller. When I ignored it a second time, the caller left a voicemail. It was my stepmother's friend, whom I had never met, calling from a hospital in Texas. She calmly but sternly instructed me to call my stepmother immediately. I did, and my stepmother blurted out, "Amber, I am so sorry. He's gone."

My father was only 69 years old. Though he had some chronic health problems, his death was sudden and unexpected. The next few days were a blur—rushing to make travel plans, connecting with my siblings spread out across the country, contacting other relatives and friends, and trying my best to support my stepmother who was deeply in shock and suddenly faced with a series of decisions that she and my dad had never seriously discussed. Even though my partner Cherie and I have been together for over 15 years and my father was very fond of her, it was clear to me that I needed to travel to the funeral alone, because a last-minute trip 2,500 miles away would have been incredibly difficult for our 10-year-old autistic son Elijah, who finds change of routine extremely difficult. So I booked my flights, and Cherie did her best to discourage me from thinking about how challenging her four days of solo parenting would be while I was away.

On my mind at the same time was trying to figure out how to sit shiva when I returned to Philadelphia. As luck would have it, I would be returning just in time for Presidents’ Day weekend, so our son would not return to school until five days after the funeral. I knew that receiving visitors while Elijah was home would be very stressful for him, especially when he had already been out of his routine for several days. I also knew that I would want to be with my Cherie and Elijah during those emotionally difficult early days of grief and that I didn't feel right displacing them just so I could have visitors. So I crafted a plan that seemed to make the most sense for our family; although I would be sitting shiva beginning Saturday night, we requested that visits on Sunday and Monday be restricted to friends with whom Elijah was personally familiar. I scheduled minyanim for Tuesday and Wednesday during the day when he would be at school and I asked that visits be restricted to during his school hours. Dear friends, also rabbis, reassured me that although my instructions were, well, odd, doing what made the most sense for our family was the right thing to do.

All day Sunday we hung out at home. As Elijah watched videos and Cherie divided her time between watching him, comforting me, and taking care of the many household chores that were piling up, I looked through old pictures and waited. Would my extended community honor my instructions or would we be faced with visitors who didn't read the instructions closely? My fears were unfounded—we didn't have a single visitor all day. I was relieved but also sad—being a special needs family always feels pretty isolating, but this felt like a tangible illustration of that reality, which was tough to face when I was already feeling raw and vulnerable. Cherie kindly and gently reminded me that visitors really would have been quite unsettling for Elijah and that I would be surrounded by my community on Tuesday and Wednesday. I had shared the news of my father’s death on Facebook and the messages of support that friends and colleagues near and far had posted there were incredibly comforting to me.

And then things got even more complicated. Elijah came down with a bad cold and a fever. Then the temperature dropped and a pipe in our house froze. Meteorologists were predicting a major winter storm that was quite likely to close the schools on Tuesday.

On Monday I decided to take the liberty to adapt the traditional customs of shiva even further to better fit our particular circumstances. Our house cleaners were coming over, which we needed badly both practically and for peace of mind, and so we bundled up and headed to a dear friend’s house for a few hours. Elijah rested and we had a chance to talk. We picked up a few supplies that we needed. My best friend made his way down from New York. A few close friends told me they had planned to come over later before the snow arrived. I assured them that I felt their love—and I did, truly—but preferred they stayed home rather than having to worry about poor driving conditions and the possibility of spreading Elijah’s germs.

Tuesday morning I woke up early. As expected, schools were still closed. Elijah still had a fever anyway so I asked my friend to send another announcement to the community telling people not to visit after all. We had a quiet snow day at home. My best friend cleared the snow from our driveway. Friends near and far emailed and called.

The last day of shiva is a partial day—it ends after the morning service. Wednesday morning, although he still wasn't feeling great, Elijah really wanted to get back to his routine, so I sent him off to school. One by one, friends, coworkers, and students trickled in from the cold to make a minyan. We prayed together and then they looked at pictures and read my dad’s eulogy and sat with me. I invited the final two visitors to join me on a short walk outside, formally marking the end of shiva, so we bundled up and headed out.

The shiva I observed didn't look much like the traditional Jewish shiva, but traditional Jewish rituals don't always leave space for life's complications—whether it's mourning across time zones or children with special needs or plumbing emergencies.

As a person, I like rules and I find comfort in following them. But as a progressive Jew and as a rabbi, I care much more about using ritual as a tool for meaning than about what we traditionally are or aren't allowed to do. I am so thankful that I felt empowered to adapt shiva to work for my family because, even with all of the craziness, it really did help me get through that first week. I felt supported not only by my community but by the sense of connection to Jews all over the world sitting shiva for their loved ones, today and across the generations.


Rabbi Amber Powers is Vice President for Student Development and Adjunct Instructor of Practical Rabbinics at the Reconstructionist Rabbinical College.

Found in: Death & Mourning, Mourning & Bereavement

Tags: disability, shiva