by Marcy White (Toronto, Canada)
In memory of Frank White z”l (1933-2010)
The first time I refused to go to shul for Rosh Hashanah I had the biggest fight with my father. We didn’t speak for one week because my dad expected me to do what he wanted. I was a 16-year-old struggling with the existence of God and refused to sit through a four hour service.
I couldn’t stomach the annual shul scene: everyone dressed in brand-new outfits, whispering about who gained weight, who looked good, who was unemployed or single. Eventually, I stopped attending services altogether. It was a gradual break, evolving over several years. I would wait at home for everyone to return and partake in the post-synagogue meal. Despite the comments from my father, I didn’t feel guilty about my religious lapse and I didn’t harbor secret feelings of being struck down for my agnostic beliefs.
Growing up in Montreal, I attended Solomon Schechter Academy and Herzliah High School. I ate kosher food at home and kissed the mezuzah before leaving on a trip. I went to Jewish camps and all my friends shared my religion.
When I was in my early 20s, I moved to Toronto and still practiced the customs: I lit Chanukah candles, ate matzah on Passover and nothing on Yom Kippur. I enjoyed the traditions but the shul sanctuary did not fill me with a sense of belonging.
When my first child was born in 2002, he spent three agonizing months in the hospital fighting for his life. From the second Jacob emerged from my body, every breath he took was a struggle. He was tethered to countless machines monitoring his breathing, his oxygen levels and his heart rate.
During that excruciatingly painful time, I did not find myself bargaining with God for assistance. I did not promise to eat kosher if Jacob would breathe without needing to be suctioned or become more observant if he would swallow without choking. But many friends who came to sit with me did so. I sarcastically joked that if there was a god, there were so many caring people of various religions praying for Jacob we’d have all the deities covered.
My son’s bris occurred under a general anesthetic when Jake was six-weeks-old, at the same time he underwent a surgical procedure. Instead of being held by his father or grandfather as dictated by our tradition, Jacob was lying on a gurney, sedated and intubated, under the glare of the operating room lights. It was a fortunate coincidence that one of the surgeons was also a mohel.
When Jacob was 10-months-old he was diagnosed with Pelizaeus-Merzbacher disease (PMD), a rare neurodegenerative disease. Although it was a relief to finally have a name to put to the assortment of symptoms, it was a crushing blow to learn that he would never walk or talk and would always be fed through the tube that was surgically implanted into his stomach on the day of his bris. I learned there is no cure and Jake’s symptoms would worsen over time.
When the shock of the diagnosis wore off, I resolved to give my son the greatest chance at a long and healthy life. I reasoned that if his body could be strengthened, it would be harder for the degenerative aspects of the disease to progress.
When Jake was 16-months-old, I hesitantly enrolled him at Zareinu Educational Centre, a school for children with special needs. I was wary of exposing my son, whose immune system was incredibly weak, to other germ-infested children. Until then, Jacob had been virtually sequestered at home, safely removed from others because a simple cold could be fatal to him. The opportunity for Jacob to receive an assortment of therapies to help his muscles develop, coupled with a vat of antibacterial hand wash, outweighed the benefits of keeping him sheltered at home.
The school was run by the Orthodox Jewish community. I’ve always heard that “they”, the devout Jews, who strictly observe all the rules of the religion, don’t consider “us”, the secular Jews, who drive on Saturdays and eat in non-kosher restaurants, Jewish. I wondered how Jacob would be treated in this program because our religious practices were vastly different from theirs. Would he be invited to participate with the others, or would he remain an outsider, the not-really-Jewish Jewish boy? Would the other parents try to keep their children away from my son?
Jacob, the most medically fragile child in the room, was welcomed into the class and received all the therapies and education the program had to offer. My son was included and supported. It didn’t take me long to feel comfortable in the group.
Around the time Jacob turned four, I learned about Yedidus, a Sunday morning children’s program near our home. It was run out of Bais Yaakov High School, an Orthodox girls’ school and was open to all Jewish children with special needs.
Initially, I was skeptical about the qualifications of the leaders. How could teenage girls be comfortable taking care of my son when most adults were too afraid to be alone with him? My concerns were squelched when I observed the girls, all dressed modestly in long skirts and long sleeves, welcome Jacob into the group with an abundance of warmth. I knew he would be accepted despite our differences along the religious spectrum.
In the five years since we timidly wheeled Jake into the school on a Sunday in mid-October, my categorization of “us” and “them” has dissipated. Jacob was unequivocally enveloped by this extraordinary community.
Jacob’s Princesses, the frum girls affectionately named by Jake’s younger twin sisters because princesses always wear skirts, shower my son with attention, love and compassion. Unlike the typical teenagers depicted in the popular media, these girls do not devote their free time to listening to music, hanging out in shopping malls and playing video games with their friends. Consistent with the concepts of Gemilut Chassidim and Tikkun Olam that they see practiced in their community every day, the princesses’ after school hours are spent visiting hospitalized children, taking care of the elderly and helping their mothers with various chores. And they do this without hesitation and without complaint.
Jacob has been invited into their homes for Purim, Chanukah and to spend the night on Shabbat. For the past two summers, four incredible princesses took Jake to Camp Yaldei, an overnight camp in the Laurentians in Quebec, for a month. The girls spent entire nights at our house, awake while most of the city was sleeping, watching our nurses tend to Jacob so that they would be comfortable with all aspects of his care.
Thanks to these extraordinary Orthodox teenagers, Jacob is able to enjoy some typical childhood experiences, including sleepovers, camp and a house over-flowing with friends and laughter each year on his birthday.
Because of Jacob’s Princesses and the empathy and love they shower on him, I developed a new appreciation for Judaism and Orthodoxy. I realized that a religion that is based on helping other Jews and giving back to the less fortunate when life treats you well deserves a second look. Motivated by the relationships I developed with these incredible girls, I started to re-evaluate my commitment to the religion into which I was born.
I learned how to make challah and my family lights Shabbat candles together. My daughters sing the brachas and Jacob knows when to vocalize for his favorite part, the “amen” at the end of each prayer.
When we visited my parents two years ago in Montreal, my dad’s face glowed with pride as he listened to my children ask the four questions during our Passover Seder. He was thrilled once again when they came with him to shul for Rosh Hashanah.
Sadly, my father passed away a few months ago. Although I still question the existence of God, I believe in the goodness of the Jewish community. In honor of my dad, the person I used to argue with about attending synagogue, I go to shul every day to say Kaddish. For him.
Marcy White enjoyed a career in the investment industry that was sidelined with the birth of her son in 2002. Her academic degrees did not prepare her for caring for Jacob who was born with Pelizaeus-Merzbacher disease (PMD). Since Jacob’s diagnosis at 10-months- old, Marcy has become an advocate for her son and furthering PMD research to help find a cure. Marcy has written many articles about Jacob that have appeared in publications such as the Globe and Mail, Canadian Jewish News and Exceptional Parent. She co-founded www.curepmd.com to educate people about PMD and fund research into finding a treatment. Marcy lives in Toronto with her husband, Andrew, and their three children, Jacob, Sierra and Jamie.For more information about PMD visit www.curepmd.com.
Reprinted with the permission of the author Marcy White and with the permission of Liz Pearl, the editor of Living Legacies – A Collection of Contemporary Canadian Jewish Women – Volume III. (PK Press, 2011). For more information about this publication or to order copies please contact firstname.lastname@example.org.