By Rabbi Karen N. Bodney-Halasz, Temple Israel

Special To The Dayton Jewish Observer

Rabbis Phyllis and Michael Sommer have been friends of mine since we served on staff together at Goldman Union Camp Institute 15 years ago. They are down to earth, outgoing, loving, and to top it off, they are incredible writers, able to express themselves with ease.

Phyllis’ Ima on (and off) the Bima blog put her on the cutting edge of the Jewish blogosphere.

In the face of people who question the authenticity of online community, the far-reaching effects of Phyllis’ blogs prove that community can also be built online.

Her writing quickly attracts readers who appreciate her honesty and candor in addressing Jewish life and parenting.

A community is born
A little more than a year and a half ago Phyllis’ lighthearted entries about Jewish parenting began to take on a new tone. On June 14, 2012, Phyllis posted that she had begun to write a third blog, Superman Sam. In that entry she shared with hundreds of followers that her 6-year-old son, Sam, had been diagnosed with leukemia.

Where many parents would retreat into a protective shield of privacy, Phyllis invited hundreds if not thousands to journey into “Cancerland” with her family. She explained: “I want to tell Sam’s story…for ourselves and our family and friends. I hope the blog is really, really, really short. And I am planning for a happy ending.”

Only two days after her son’s diagnosis, in her first official Superman Sam blog, Phyllis wrote, “My whole universe collapsed in on me at 4:30 p.m. on a Tuesday. My sweet little Sammy. We asked questions. They made plans….We sent texts. We made calls. We wrote emails. And we cried….Sam has cancer. Acute myeloid leukemia. And our lives will never be the same.”

Indeed, the Sommers’ lives would never be the same again, but due to the power of the community she and her husband created, thousands of others’ lives will never be the same after travelling along this path with them.

Team Superman Sam quickly formed when Sam, while reciting Mi Shebeirach with his parents, wouldn’t believe them when they told him that there were people all over the country (maybe even 500) praying for him on their Mi Shebeirach lists as well.

And so blog readers were invited to take pictures of themselves in superhero clothing and send them to Sam so he could see those faces of support on his wall and know that he was not alone in his struggle. Because of the powerful connections formed online through Superman Sam’s blog, the same child who had trouble believing that hundreds of people were praying for him in the first few weeks of his illness, would eventually be mentioned on the front page of the Chicago Tribune, featured on today.com, and in newspapers throughout the United States, Israel, and England.

Making everything count
What I found in the Superman Sam blog was a glimpse at a young and vibrant soul, the raw emotion of a family finding its way, a personalized path through Jewish living, and the power of people to become, as Phyllis coined, “super-menches.”

As rabbis, Phyllis and Michael view the world through a Jewish lens. Sam’s blog often described the meaning of Jewish time, such as counting the Omer and the days of Elul, but this experience raised other significant ways of counting, such as by numbers of blood cells, shehechiyanu moments, days post-transplant, and eventually, the days of mourning.

Sammy and his parents used the power of their blog to galvanize people to help them make Sam’s struggle count as well, especially raising awareness of childhood cancer.

Sam and his parents would, from time to time, ask blog followers to give back to their communities and in so doing they raised considerable amounts of money for the MACC Fund Center for Cancer and Blood Disorders, completed a vast movie collection for their Ronald McDonald House, and inspired many, including me, to hold bone marrow donor drives. The family also generously shared the gifts showered upon their son with the other children at the hospital.

The 18 months following Sam’s diagnosis were a roller coaster. Within 520 days, Sam was declared in remission after chemotherapy and radiation treatments, recited Birkat HaGomel when ringing a celebratory bell at the hospital, and last summer underwent a bone marrow transplant after the cancer returned.

We all hoped his story would have the happy ending for which his family prayed. But in November, Sammy’s refractory leukemia returned with a vengeance and his family was faced with the knowledge that there was nothing left to do except make every moment and every breath matter.

I read each blog with tears in my eyes as Sam’s parents described how they explained this reality to Sam.

And I was not alone. Dozens of Reform rabbinic colleagues stepped forward to make a bold statement for pediatric cancer research.

The Sommers often pointed out that only 4 percent of government support for cancer research is given for pediatric cancer, and so it was the most obvious recipient for our efforts.

Through work with an organization called St. Baldrick’s — which provides funds for childhood cancer research through communities that sponsor volunteers who shave their heads — more than 80 rabbis sponsored an event called 36 Rabbis Shave for the Brave. More than 50 rabbis will shave their heads at the Reform movement’s Central Conference of American Rabbis convention on March 31. By the beginning of January more than $265,000 was raised toward the goal of $360,000.

My colleague, Rabbi David Burstein at Temple Beth Or, is one of these shavees and my assistant, Ellen Finke-McCarthy, will shave her head to raise money for the project. For details, go to stbaldricks.com.

Courage
In a blog post entitled Tears, Phyllis shared a conversation with her son: “I don’t want to die! I want to grow up and marry someone! I want to learn to drive! I want to have a Bar Mitzvah! I want to see David (his brother) be president! I want to see Dad get old and wear diapers!…You’re going to put me in a box and put me in the ground. I’ll never get to do all the things I want to do. Why did I have to get cancer when I was just a kid before I got to do things?”

These are questions no parent should ever have to answer. To do so requires such enormous amounts of courage and love. The Sommers have found their courage through the incredible support of both the community in which they live as well as their virtual community.

Healing does not occur in a vacuum. It is fueled by the loving hearts and hands of a community. I am thankful they let so many people in to help provide that strength, as so many others would have chosen otherwise.

More than a thousand people showed up for Sammy’s funeral, many of whom had only known the family through the blog, and hundreds more were thinking of him during that difficult hour from afar. The Sommer family has been carried through its grief and pain knowing that they are not alone. They are not the only family to have undergone such tragedy because of cancer. But they are the first family I have ever been able to walk this path with as their story was unfolding. Being welcomed into their family has made it possible for thousands of people, including me, to more fully grasp the blessings of our own lives and to open our arms a little wider to provide their support for a family in need.

The Sommers’ choice to be transparent throughout this struggle has personally helped me become a better person, a better rabbi, a better spouse, and a better parent.

When a child is unsure about becoming a Bar Mitzvah, I think of Sam’s wish only to have such an opportunity and his courage to do everything he could to make that happen. When I sing the Shema at night with my son Jonah, I hold him just a little bit tighter. I never let a moment pass when I don’t tell my family that I love them. And every Shabbat I am reminded of the last moments of Sammy’s life:

“The house filled up with family and loved ones. Sam slept quietly through it all. Our Kiddush wine was salty with tears. The hour grew late…the house emptied out. Around midnight, the last ones left. I took the first shift and sent Michael up to sleep. I quietly sat down next to him and very, very, very softly sang his bedtime prayers. Shelter us beneath thy wings…guard us from all harmful things. He was always terribly impatient with me when I would cry during these prayers. So I made sure not to cry. Shema Yisrael Adoshem Elohkeinu Adoshem Echad…I whispered in his ear….I love you. And then I settled down beside him on the couch, my hand on his back. Only a few minutes went by. His breathing began to change. There were long pauses between the breaths. I caught myself holding my breath and the nurse and I exchanged a momentarily-frightened glance. We turned on the lights, we got Michael from upstairs. We held our child close. He took one final breath…Sam was not alone for a single moment of his life. He died peacefully and calmly and quietly at 12:33 a.m. He was not in fear or in pain. And for that I am eternally grateful. For the first 10,543 days of my life, I was not Sammy’s mother. And then I had 2,959 days of Sam. Now I face thousands of days without him. I once lived 10,543 days without him. But I didn’t know what I was missing.”

I will never take another day for granted. I am forever changed. Thank you, Superman Sam, for inviting me into your life and giving so many people the courage to face challenges far less difficult than yours. May your memory always and only be for a blessing to all who came to be a part of your community.

To read the Superman Sam blog, go to supermansamuel.blogspot.com.

To read the complete February 2014 Dayton Jewish Observer, click here.