Category: parenting

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General CCAR parenting

Not All Jewish Genetic Screenings Are Created Equal

While most of us are appropriately immersed in issues relating to Covid-19 or racial justice, let me bring your attention to a different matter of life and death. Recently I experienced a series of very personal “aha” moments, but with professional ramifications as well. 

            In January 1986, our son Joshua Daniel died after only living for six months. The cause of death was recorded as an “unknown degenerative neurological disorder.” Our Israeli geneticist hypothesized that it was likely genetic, but beyond the scope of the pre-natal testing for Tay- Sachs and other diseases that my wife, Lynn, and I had taken. 

            We nonetheless risked having more children and were blessed with two healthy daughters, Sara and Mica. Sara recently married and Mica is engaged. Prior to their weddings, I stressed the importance of being fully tested for so-called “Jewish Genetic Diseases.” Sara went to her doctor in Houston, explained the family history, and asked for a full Jewish genetic screening. She was pleased when the results came back completely negative. 

A few months, later Mica utilized the JScreen program, based in Atlanta at Emory University, also available to anyone in the United States. Her results revealed a positive indication for a disorder, the symptoms of which sounded eerily similar to what ended her brother’s life. This was the first potential “aha” moment, a clue to solving a 34-year mystery. 

However, our focus is on the present. With almost all disorders on Jewish genetic screening panels, your partner must also be a carrier—and even if both are carriers there is only a 1 in 4 chance that a baby will be afflicted. Her fiancé, a Jew by Choice, will now be tested, but it is unlikely, with his Sikh Indian biological heritage, that he is a carrier, THOUGH NOT IMPOSSIBLE. 

The next “aha” moment came when Sara discovered that her testing at the doctor’s office in Houston did not include the disorder that Mica’s revealed. She then utilized the JScreen protocol, which showed she was not a carrier of that particular disorder, though she was positive for another less serious disorder. Subsequently, her husband also used JScreen for testing, revealing no problems.

My second “aha” is the new knowledge that not all Jewish genetic screenings are created equal:

  • Simply suggesting to couples we counsel to seek Jewish genetic screening is not enough. 
  • Simply asking a doctor, even a Jewish doctor, for Jewish genetic screening is not enough. 

I have subsequently been looking at programs for Jewish genetic disease screening throughout the country. Though I am by no means an expert, I have gained a better understanding of what is available and how we can best serve young couples with whom we engage.

First there is a misconception about the number of Jewish genetic diseases for which we should be concerned. We all know about Tay-Sachs. However, there seem to be others that receive prominent attention and are typically screened: cystic fibrosis, spinal muscular atrophy, Gaucher disease, Usher syndrome type 1, glycogen storage disease type 1a, familial dysautonomia, Canavan disease, lipoamide dehydrogenase deficiency, Bloom syndrome, Walker-Warburg syndrome, maple syrup urine disease, Fanconi anemia, Neiman-Pick disease, mucolipidosis IV, ABCC8 hyperinsulinism, Usher syndrome type 3, nemaline myopathy, and Joubert syndrome. 

However, we should urge our couples to ask for what is often called “advanced” or “expanded” Jewish screening panels, which is what identified the potential problems for both of my daughters. For example, JScreen currently covers 226 disorders, including 101 Jewish disorders (47 Ashkenazic, 37 Sephardi-Mizrahi, and 17 common to both). Compare that to my older daughter’s first screening of 165 disorders, which missed 67 of those considered Jewish disorders. 

Who should be screened? Obviously two born Jewish partners need to be tested but let me stress that ALL couples should be screened. Sadly, I have been the rabbi for a couple, whose son died of Tay-Sachs with the mother’s genetic background being Ashkenazic Jewish, but the father’s a combination of Irish/Italian/Catholic lineage. In addition, now that we know all screens are not equal, those who did not have the full advanced screening initially should be re-screened, prior to having any more children. 

I have become a big fan of the JScreen program. (www.jscreen.org)  Any couple throughout the country can avail themselves of their test kit, with a doctor’s order that JScreen collects on behalf of the patient. Through subsidies, they make it affordable for those with and without insurance. After viewing an educational video and submitting a saliva sample, individuals receive screening results, along with counseling from a professional genetic counselor. Based upon my initial survey, there are some programs that also do similar advanced screening, but I am not aware of any that serve the entire country. 

Epilogue: Lynn and I decided to be tested by JScreen in the hope that we would have a more definitive understanding as to Joshua’s cause of death. Unfortunately, it will remain a mystery. While I tested positive for the same disorder that we thought it might be, Lynn did not.

Regardless, this is clearly a matter of pikuach nefesh for our community. If anyone would like to communicate with me privately about this, I would welcome it. 

To learn more about JScreen or to request their free rabbi folder, visit www.jscreen.org.

Bob Loewy is the Rabbi Emeritus of Congregation Gates of Prayer in Metairie, LA; married to Lynn; proud father of Karen Loewy (David Widzer NY ’00), David Loewy, Sara Loewy (Paul Belin), Mica Loewy (Jasjit Singh); grandfather of Judah and Elisheva Widzer; and looking forward to more.

Categories
LGBT News parenting

A Thank You Note to My Son

Rabbi Peter Kessler is senior rabbi at Temple Ohev Sholom in Harrisburg, Pennsylvania. Here, to honor Transgender Awareness Week and the transgender community, he shares an open letter to his son, Floyd.

Dear Floyd,

I loved spending the past weekend with you at Alfred University. Your freshman year is off to a stellar start!

Your dad and I could not be prouder of you as you continue your journey to becoming a responsible adult. I’d like to tell you some of the reasons I am so proud of you, and your adjustment to life off at college.

Floyd Kessler with his college art project,
Jack, the puppet

We have always been a “different kind of family.” You never had any issues adjusting to a world that may have looked at you sideways as you had two dads. You were always kind, polite, and were more interested in changing the world rather than fighting change. When you told us that you were born into the wrong body and were transgender, I was brought back to the time in the 1970s when I was your age and told my parents that I was gay. They were frightened that I would be cast aside by friends and family, unable to have a happy life, and that I would not able to become a parent. I helped prove to them that my life was just beginning—and that happiness would certainly come my way.

But you have taken that story to another level. You came into our lives and taught us how to become loving parents, strong allies of the disadvantaged, and open to any possibility that you brought home, even when you told us that you were transgender. We supported you by taking you to therapists and doctors to guide you, and you supported us with your words of encouragement, worrying more about us than yourself, and allowing us to walk with you on this often difficult journey.

Floyd Kessler’s artwork on display
at the Art Association of Harrisburg

Of course you were blessed with an open loving congregation, kind and caring friends, and KESHET, the national organization that works for LGBTQ equality in all facets of Jewish life. Your involvement with KESHET and your openness to help everyone in the trans community who comes to you for advice and support makes me proud of you every day.

Now you are becoming an adult, and while you still hug us and love us unconditionally, as your parent I must thank you, and tell you that you are an inspiration to any parent blessed to have a son like you. We are proud of the person you are becoming, and we’re proud of your artistic talent as you create the pieces that chronicle your story into becoming the person you needed to be.

Floyd, thank you for being an amazing person, one committed to making the world a better place, and someone I will always love unconditionally.

With love and admiration,

Papa

Categories
parenting

Blessing Up: A Chanukah Lesson

At a Shabbat service led by two b’nei mitzvah students in my congregation, I was lulled into a meditative frame of mind. As if following a rigid script, the young people chanted from the Torah, led the set prayers in English and Hebrew, and presented divrei Torah to the community according to a formulaic outline. Then, after one of the students wound down his presentation describing his mitzvah project and expressing words of thanks to parents, siblings, guests, teachers, and clergy, he appeared to finish his speech. I waited for the requisite, “Shabbat Shalom,” and thumbed through the prayerbook to locate the concluding prayers of the service. Pausing, the bar mitzvah boy looked up from his typed words and radiated an impish smile. He gazed at the congregation, pointed both index fingers toward the heavens, and finished his speech with a loud exhortation, “Bless up!”

I had never heard of that particular expression before that moment. It reminded me of something a professional athlete might intone in preparation for a big game. Since that day, I’ve thought about the phrase more than a few times. Did the bar mitzvah boy mean we should bless God, who dwells up on high? Perhaps the expression means that it’s time to make a blessing and be grateful for the gifts we have that we are taking out of God’s realm and drawing into our own spheres. Maybe he thought he was being cool and funny by calling the congregation to prayer with slang in the midst of a formal service?

With the imminent arrival of Chanukah, this young man’s expression has re-entered my consciousness. Reviewing one of the famous disagreements between the schools of Rabbi Hillel and Rabbi Shammai (Talmud, Shabbat 21b:5-6), we recall that on Chanukah, we add an additional light for each night of the festival, as instructed by Hillel. While the modest sage’s rival, Shammai, favored kindling a brilliant array of lights on the first night and then deducting a candle or light as each night passed, Hillel would kindle lights corresponding to the outgoing days. By crowning Hillel as the victor in this conflict of opinions, the Talmud has ruled that when we light a chanukiyah, we, too, are supposed to “bless up.”

Just two weeks ago, I shared a very slow-moving elevator with a 96-year-old man and his 94-year-old wife. I asked them how they were getting along, and the gentleman looked at me, shook his head with caution, and instructed, “Take my advice, don’t get old.” The couple shuffled off of the elevator and made their way together, as I processed the jarring conversation. This man who was almost a century old probably did not feel good, may have suffered profound personal losses of friends and family members who predeceased him, and could have been suffering from a number of ailments and worries. He looked ahead at his days and may have wondered if positive, joyful experiences awaited him. Like the darkening chanukiya of Shammai, this nonagenarian’s opinion about life and joy corresponded to the incoming days, and the lights dwindled for him.

Downcast, I reminisced about my grandmother, who passed away at almost 102 years old. She enthusiastically complained about her failing eyesight, mourned the parents, siblings, husband, and friends she had lost, and lamented the insults of aging. Yet, she retained her gratitude and her sense of humor, joking that the Malach Ha-Mavet had lost track of her because she had moved to an assisted living facility in Mason, Ohio. For the time being, she was tricking death by living in a town that sounded eerily similar to the Ashkenazic pronunciation of Meitim — dead ones, and so the Angel of Death had assumed he had already visited her. I learned from this grandmother and my other grandparents, as well, to ascribe to the school of Hillel, and focus on the light of the outgoing days.

The Talmud instructs us to elevate to a higher level and never to downgrade in matters of sanctity. May we internalize the lesson of Hillel and find increasing light and joy in the progression of time. May we find strength in our days, and may we all grow very old with vigor and goodness in a world of peace.

Oh, yeah, and to quote a very wise bar mitzvah student, remember this Chanukah to always “bless up!”

—

Rabbi Sharon Forman serves Westchester Reform Temple and was a contributor to CCAR Press’s The Sacred Encounter: Jewish Perspectives on Sexuality.

Categories
parenting

“The Sex Talk:” A Uniquely Gratifying Rabbinic Moment … at Camp

At a recent lunch in Jacobs Camps’ dining hall, Jeremy and Jack, co-counselors in a Talmidim (9th grade) bunk, approached me: “When we were in Talmidim, you came at cabin prayers (bed time) and gave us a ‘sex talk.’ Would you be available to come to our bunk and do that tonight?

They remembered! Jack and Jeremy were 14 in 2013, fully five years ago, my first summer on Jacobs’ faculty, after 20+ years as Rabbinic Advisor of Greene Family Camp. Perhaps they more than remembered: They were aware of the impact, perhaps lasting, and wanted the same for their campers.

The “sex talk” isn’t really about sex, and certainly not only about sex. We often say that home and house of worship — and URJ camps are, of course, an extension of our synagogues — are the best places to communicate our values about this most intimate part of life. In my experience, though, these conversations don’t happen often enough.

I begin by asking the boys how why Bar Mitzvah was fixed at age 13. Fairly quickly, they make the connection to puberty. 14 year old boys know about puberty, but they haven’t internalized its essence, which I articulate as the time in their lives when they become physically able to become parents. I ask how many of them feel ready to become parents, and they unanimously agree that they aren’t, which leads to discussion of the centrality of their responsibility not to become parents before they’re ready.

My theory: The rabbis piled adult responsibilities upon thirteen year olds to drive home the message that “adulthood isn’t all it’s cracked up to be,” in the words of one of the 2018 campers.

The heart of the conversation is about respect for women — and, more broadly, for any potential romantic partner. I explicitly acknowledge that statistics indicate that some of the campers sitting before me are questioning their sexual orientation or gender identity and will come to know themselves as LGBT. Any “sex talk” with adolescents brings on a certain amount of joking and cutting up, which I tolerate without judgment, until they start to make inappropriate gestures in response to my LGBT point which may make some campers in the room feel unsafe.

A fair amount of the discussion is an in-depth conversation about consent, real consent, sober consent, and consent that is required to begin with the most chaste forms of physical comment. Also, we address the ways that adolescent boys talk about girls and women, emphasizing that what some, even our President, have deemed “locker room talk” is inappropriate in any setting.

And, of course, we discussed the consequences of becoming a father when one isn’t prepared, based on “Unplanned Fatherhood,” which I wrote for CCAR Press’s The Sacred Encounter.

I have these talks with boys only, hopeful that my female colleagues have similar opportunities with girls. This year, I did talk with a bunk of 14 year old girls about the Supreme Court’s decision about Crisis Pregnancy Centers and their role in ensuring the perpetuation of a right that their mothers and grandmothers have taken for granted.

And I talked with a group of ten year old boys about cleanliness!

I left that boys’ bunk on Thursday night, hoping that I had an impact, perhaps as I apparently did on Jeremy and Jack all those years ago. Those young men’s parents, their camp, and their congregations may all be proud of the adults they are becoming.

The next evening, as Shabbat began, I noted that many of 14-year-old boys made a point of coming up to me, to make yet another connection. I think they got the message.

—

Rabbi Barry H. Block serves Congregation B’nai Israel in Little Rock, Arkansas, and is a member of the CCAR Board of Trustees.

Categories
parenting

Teach Your Children Diligently

People keep telling me “You are doing such a Mitzvah.” I do not share this to brag, but to deflect this praise which is not due me. It is nice to hear people think I am a mensch. While I strive to fit that bill, I would not write a blog post about it. The reason I have received these accolades is that my wife Jennifer and I have become foster parents. For the past two months, we have doubled our family size from three, including our 8-year-old son to six with children ages 6, 3, and 2. It was not a simple decision, and as anyone who has undergone a home study for the purpose of adoption or fostering can tell you, there is nothing easy about this way of adding to a family. It required sacrifice, trading in two paid-for cars for cars which can accommodate our new family size, surrendering our guest room, and making a once only child share a bedroom with his new brother. And yes, our commitment to doing this does fill an important need since there is a reason why these kids are in the foster system. Still, when people say, “What a mitzvah!” instead of getting a big head, I remember, “raising children is a mitzvah.”

Veshinantam l’vanecha [i]  (teach your children diligently) is one of the most important mitzvot. Anyone who becomes a parent and takes seriously their responsibility fulfills this obligation. By the way, peru u’revu[ii]  (be fruitful and multiply) the very act of procreation, is also a mitzvah. Unfortunately for us, there was no “peru”  in our “revu.” In other words, as a married couple, we have been unable to conceive and bring a pregnancy to term. After a considerable amount of anguish and anger we reached a realization there is no one to blame, not each other, not the doctors, not our parents, not even God. It just is. WE had to accept that two people who loved children as much as we do, and who have so much collective experience working with children were unable to have them on our own. Not wanting to miss out on the mitzvah of being parents, we decided we had to “revu,” that is to say “multiply,” differently.

I know that adoption or fostering is not for everyone. Some people cannot fathom raising a child not biologically theirs. Some cannot get approved because of some past legal transgression. Some move too frequently to finish a home study. Some lack the financial resources. Can you imagine having to fill out a financial statement before getting pregnant? Others burn out on the process, either being turned off by the massive amounts of paperwork and the hours classes of classes required. Still, others spend years on “waiting lists,” a misnomer if there ever was one since there is no being “next in line.” Many couples burn out while hoping for a birth mom to pick them. We however made the choice to endure the process, and we got lucky.

Eight years ago, the most incredible blessing entered our lives when we adopted our son, Eden. This kid could not be any more ours if they had taken all the best parts of Jennifer’s and my DNA and spliced them together. It was a joyful culmination of a long struggle. And everything was perfect– until we thought about having another. To make a long story short, we are still unable to have a biological child. After three years of active waiting, we were no closer to a second adoption. We felt like we had more love and learning to share, and Eden wanted siblings. In fact, his imaginary friends have all been named “Brother” or “Sister” (I assume this rabbi’s kid is not imagining monks or nuns.) So we began the process all over again– A new home study, more classes, more background checks, more fingerprints, more criminal record searches in every place we have lived for the past 20 years, more essays to write, more papers to fill out, more credit checks, more doctor’s visits…. And then we were approved. Then we began waiting for the referral of a child who would be the right fit for our family, pets and all.

Then we had a chance to meet the kids we have currently. Three were more than we bargained for, but, waiting for the perfect situation, you might wait forever. A week later, they were placed in our home. It is not all roses. They do exhibit behaviors that make us want to pull out our hair. In other words, they are children. They need loving parents, a comfortable home, people to teach them just like they would teach and raise any children. It is far too early to discuss a permanency plan.  Although we do love these kids, we root for their mom. People ask, “Aren’t you worried about getting attached and losing them?” Truth is we worry all the time. But if our worst case scenario is the best case scenario for the children and their mom who has a chance to turn her life around, then so be it. We are performing the mitzvah of veshinantam levanecha for multiple children, an opportunity we would have otherwise been denied.

The only things we wish to be called are the titles we always wanted, “Mom and Dad.”

—

Rabbi Craig Lewis serves Congregation B’nai Jeshurun, more popularly known as the South Street Temple, in Lincoln, Nebraska. 

 

[i] Deu 6:7

[ii] Gen 1:22