I had a eulogy I was going to use that I’ve been writing for several months now. As pieces of mom started to drift away after enduring so many severe illnesses and a major surgery since June, I started to jot down thoughts about her that came into my head. It was so comforting that I was able to keep a little journal about what she meant to me. These words are a precious treasure to me now. But something happened when she died. I remember that same feeling when my dad died. With almost a whoosh, I felt a change as though my mind had a broom sweep right through and in flowed completely different remembrances. So I am saving my journal for safekeeping and sharing with you what I have been unable to get out of my head.
My mother, Joan Brenner, was a tough cookie. Everyone will tell you that. Tough, opinionated, at times judgmental and difficult, but soft too, charming and visionary.
She was a pioneer in the field of developmental disabilities. By the time she had children, my brother, who has autism, was diagnosed as “brain-injured”in the mid 1950s. At age 8 there was no school for him to attend. He was not accepted at public school. There was no mandate then, so my mother started a school with other parents over a large geographic distance for their “severely retarded and brain-injured children” in a basement two hours from our home.
Then, in the 1970s, well before President George H.W. Bush signed the American Disabilities Act into law, she helped build a previously non-existent educational system serving students with disabilities by becoming the first woman to serve on the Board of Cooperative Educational Services for Nassau County, NY–the largest county in the country to provide these services. However, her crowning achievement was founding and developing an agency called Community Mainstreaming Associates which not only would provide a residence for my autistic brother, but evolved into multiple residences providing housing and programming for other adults with developmental disabilities. Her original mission was to set a goal for each resident to work in the community. She pioneered the person/constellation centered approach before it was a “ thing,” firmly believing that people with developmental disabilities, like all other citizens, have the right and responsibility to contribute to the community as much as they have a right to benefit by it and participate in it.
When we picture mom, it is easy to visualize a strong, glowing forthright face. A woman who was always on her feet and going somewhere with a purpose. Leading the pack, starting things, enthusiastic, ready to take on the world and strong.
But as her daughter I got to see her when no one else was looking. One of my earliest memories was sitting on the kitchen floor with mom. She was sobbing and I didn’t understand why, but I knew that it was because of my brother.
So what I can’t get out of my head is my trip with mom to the nursing home. We all loaded her into the van, locked her wheelchair into place and after saying good-bye to her Great Neck apartment and her care-givers, we headed off. I was seated next to her. Never had she been in such a frail state, both mentally and physically, in some ways as disabled as some of the people she once served. Yet she turned to me and said, “Well, here we go Amy, the next chapter.” She put her arms with purpose on her wheelchair, sat up a little and looked straight ahead. This now very frail mother of mine, born with a severe curvature of the spine, looked absolutely regal as she set her sights ahead. I don’t know how she did it but she had perfect posture in that wheelchair and she did not look back.
My whole life, even into adulthood, I was the often rebellious daughter but blessed recipient of a devoted mother and courageous community model. We had a sometimes tumultuous but always caring relationship that deepened with the years. But now, in the most compromised, debilitated state that I had ever seen her, never did I see such a strong, admirable woman as in that moment when the van door closed behind us.
None of us wanted a nursing home. We all wanted to avoid it at every possible cost, but the level of her care required it and she accepted that and made the decision to embrace it. And I was her privileged witness and participant in this momentous transition. We spent the next hour and a half, enjoying the autumn leaves and people watching out the windows. She was alert and as always a great companion. We chatted and laughed just like we have for many years. I never loved her more than on that ride to that nursing home.
Pieces of mom have been transitioning from this life for a while. But moments before she died, she had eaten half her breakfast. She did not fade away. Mom would never fade away. Even in her moments of misery she lived fully and was teaching me how to live. She leaves me sad not to have her anymore in my life and in the life of my family. She meant the world to my husband and both of our sons. Yet she leaves us with so much vivid joy of her in our hearts. Somewhere she is standing straight and tall and smiling on her way to the next chapter. N’seah tova, Mom. Safe travels.
Amy Brenner Mitz is an ordained cantor who has served congregations in Chicago, St. Louis, New York and New Hampshire. She has an older brother with autism. Presently she lives in northern New Hampshire with her husband and 24 year old twin sons, one with Fragile X Syndrome, the other with Koolen DeVries.