Summary: Under financial strain from their baby Rafael’s therapy needs, the Fragers weigh the pros and cons of moving to a different community. Tzipora is loath to leave her family, mentors, and lifelong friends in Baltimore, who give her the warmth and support she feels she needs to raise her son. She finally agrees to move after realizing that he would benefit greatly from the resources in the New York area.
Our move to Elizabeth, New Jersey, was good in the sense that it indeed provided excellent services for Rafael. However, Elizabeth in 1980 was a smaller community than it is today, and lacked the community resources a young family needed. For instance, there were no welcoming committees for new couples. I was extremely disappointed, because in Baltimore new families were welcomed by N’shei and the Ner Israel Service League. Shul was a major place to meet people, but since Elizabeth was also sans eruv, I was unable to attend on Shabbos morning unless I could locate a babysitter. (Although Baltimore also did not have an eruv at the time of our departure, I had family who came to me, and I had longtime friends, so I didn’t have to cultivate new ones.)
Yehuda was working in Manhattan, commuting by train and arriving home late in the evening. I was busy all day, three days a week, participating with Rafael in great services. The other two days were spent with housework and caring for our two children. The evenings were dedicated to teaching Yehuda the physical and speech therapy homework, so that both of us could implement the lessons daily and keep continuity with Rafael’s therapy.
Being unable to meet couples in our age bracket and make friends, we were lonely. It was difficult not to miss Baltimore. We invited our single friends and family to sleep over at our home for Shabbos, and I was constantly calling family and friends in Baltimore and New York to process my daily experiences. This caused our phone bills to be quite high (in those days of high telephone rates) and added to the financial stress we were trying to solve by moving to a city that offered less expensive services.
After 10 months of importing family and friends and driving to New York and Baltimore as often as we could, my husband decided he would have just as good opportunities for a parnassa in Washington as he did in New York. We moved to Silver Spring, Maryland, in February of 1981. Montgomery County, a more affluent area than Baltimore City and County, had the same quality and quantity of services that we accessed in Elizabeth.
* * *
Rafael progressed in Silver Spring, and was able to meet the developmental milestones relatively close to the “normal” timeline. There was an eruv, and we became part of the community. A year later, however, when our daughter was about to enter first grade, Yehuda and I decided to move back to Baltimore. Our family was educationally rooted in Baltimore’s Bais Yaakov and Talmudical Academy. My father had attended TA and Ner Yisrael, as did my brother. My husband Yehuda attended Ner Yisrael as well. My mother, a”h, considered herself a Bais Yaakov girl, because when she became a baalas teshuva, Rabbi Diskind, z”l, taught her hilchos Shabbos and kashrus. And my sister and I graduated from Bais Yaakov. My husband’s family is firmly rooted in Memphis’ Jewish community and day schools, and Yehuda strongly felt that it was important for Rafael and all our children to grow up in a strong, deeply rooted Jewish community. Another important factor in our decision was the establishment, five years before, of P’TACH, where we thought we had a placement for Rafael.
By October, 1984, our family had come full circle back to Baltimore. It was, and still is, wonderful to be back. There is never a moment that I take for granted living in Baltimore and being in close proximity to all that is dear to me.
Still, in the ensuing years of Rafael’s childhood, we went through many ups and downs in his education, his mainstreaming into the Jewish community, and obtaining employment. We experienced antagonistic circumstances, climaxes, anticlimaxes, heroes, antiheroes, etc. Through it all, thank G-d, Rafael has persevered. An amazing child, he has grown to be an adult living a fulfilling life just as Hashem created him. I will present here just a few highlights of those years:
* * *
Rafael attended TA nursery and kindergarten in the mornings, and then participated in the P’TACH program, which was located on the TA campus. There was progress, as well as some steps backwards – along with mixed emotions – with this situation. Morah Dena Friedman (who is now in Atlanta) was excellent in mainstreaming Rafael, and our family had good interaction that year with the P’TACH and TA staffs.
The following year was not so easy. When a child is developmentally delayed, he or she falls further and further behind in educational and emotional development as compared to a child who is not developmentally delayed. It is therefore imperative that his or her placement be appropriate to that child. The appropriateness of the school does not just mean that the teacher is appropriately trained. Physical resources also have to be suitable. For instance, the bathroom needs to be close enough for the child to get there without an accident. This was not the case with P’TACH. This situation caused many accidents, which were not only distasteful to the staff but also ripped apart Rafael’s self-esteem. As a result of this situation, Rafael developed some significant medical issues. Our pediatrician, Dr. Caplan, pointed out to my husband and me that this was not only interfering in Rafael’s education but his health and self-esteem was suffering as well.
After much discussion with HaRav Weinberg, zt”l, and P’TACH, we decided to take Rafael out and place him in the special education system of Baltimore County. (We were living near TA at the time, because my brother-in-law, Rabbi Peretz Dinovitz, was the dorm rebbe and lived in the TA dorm.) Financially, this was a better move for us as well, because we were paying two tuitions: to P’TACH and TA. There were additional expenditures for private speech, occupational, and physical therapy. (At one point, the expenses had gotten so out of control that I used Baltimore County services for some of the therapies. This entailed picking Rafael up daily during the middle of the school day and transporting him to Scotts Level Elementary school for 30 minutes of services then taking him back to TA to finish class.)
We hired a rebbe for Rafael, so he could continue with his limudei hakodesh. We had wonderful rebbeim for Rafael. The two that stand out in my mind as I write were Rabbi Mitch Ravin, a”h, and, ybl”c, Seth Gerstein. Both these men were such tzadikim with Rafael and our family. Yehuda and I attribute Rafael’s love for Yiddishkeit and being able to read Hebrew and daven from a siddur to them. Words cannot describe the hakaras hatov (gratitude) that we have towards them.
* * *
Let me digress for a moment, because this story is not only about raising a son diagnosed with Down Syndrome. It is also about raising a family with other children, who needed attention as much as Rafael did. B”H, we raised one amazing daughter and four other wonderful boys, and we took them into account when making various decisions. One important decision was whether to move to Park Heights. When my sister’s family moved out of the TA dorm, my other children missed their cousins and friends, especially on Shabbos. My daughter was nine years old when she told Dr. Caplan during a regular checkup that she had many friends in the Park Heights area and missed getting together with them on Shabbos. Dr. Caplan discussed with my husband and me the importance of all the children feeling that their needs were just as important as Rafael’s.
It was not an easy decision, because living near TA put us in Baltimore County. We knew that Rafael would eventually have to use the public school special education system, and the County had a better reputation for services. While the Greenspring neighborhood was also in the County, the area near TA was more affordable.
In the end, we did move to a house on Western Run Drive, which we rented from my mother’s real estate company. This turned out to be a great move for our children, because they were in the center of all the Shabbos activities. It turned out that, on the very same day in August of 1988, Rabbi and Mrs. Oberstein moved into the house across the street. My children and the Oberstein children became close friends. We also became close to the Obersteins, a friendship that endured even after we left the neighborhood. The Oberstein children treated Rafael as one of the Frager gang. (In just one of many acts of friendship, when Rabbi Avi Oberstein, now of Montreal, was a teenager, he gave Rafael one-on-one swimming lessons on Friday afternoons.)
We had much siyata d’Shamaya (help from Heaven) with raising our family and Rafael in as normal situation as possible. There was sibling rivalry, along with much sibling love and achdus (unity). Thankfully, our children have always treated Rafael as we treated him. We had some not-so-easy times, when Hashem showed us we needed to find other placements or other solutions. But, b”H, Rafael and the rest of our children were able to grow up in a family that tried to follow Hashem’s ratzon (will) – sometimes by being as proactive as possible and sometimes by having a wait-and-see approach. Suffice it to say that I could “write a book” – and maybe some day I will!
I have come to a great understanding: that there is no one who does not have nisyonos (challenges) in this world. Rabbi Binyomin Steinberg, z”l, used to say that galus – whether we are living chutz laaretz or in Eretz Yisrael – is bittersweet. It is only when Mashiach arrives that we will experience a sweet life without the bitterness. Our responsibility as ovdei Hashem (servants of G-d) is to be grateful to Hashem for all the brachos He bestows on us, collectively and individually. As my father, Rabbi Shuvalsky, has said to me throughout my life, “Tzipora, accentuate the positive, and a positive life will unfold.” The structure of our davening (prayer) exemplifies this concept. Chazal (Sages) arranged it so that we do not simply ask Hashem for more and more. Our tefilos (prayers) first praise and thank Hashem for all that He does for us. If we cannot be grateful for what we have, how will we appreciate all the things we ask Hashem for?
I am grateful that Hashem gave us Rafael. I and my whole family are better for having Rafael in our lives. I am not saying there were not difficult times, but the great times and emotions outweigh the difficult times. All people have difficult times – whether they have children with disabilities or not, whether they have financial resources or not, whether they have good family and friend support or not. Everyone has a journey in this world. And I have observed, both in my personal life and professionally, that individuals who remain grateful and thankful to Hashem every minute of their lives have a much more satisfying life and feel more accomplished than their counterparts.
I hope that in reading these articles, parents with children diagnosed with disabilities will realize that all the hard work and sacrifices of time and energy will pay off. I know that each step can be difficult, but looking for the nachas in the situation and focusing on that will make the journey better. I also hope that people who do not have children diagnosed with disabilities will have gained empathy for their friends and neighbors who do, and that all of us will come to understand that raising children to be ovdei Hashem is not easy; tzar gidul banim, the pain of childrearing, Chazal call it. And raising a child diagnosed with a disability is even more difficult in all areas.
* * *
After all I have written over the past months, from the birth of Rafael through his bris and beyond, let me fast-forward many years and kvell a little.
Rafael was able to read the maftir at his bar mitzva, because from the beginning of his schooling, he was sincere about limudei kodesh. He treasures his rebbeim and all rabbanim with whom he had contact with through our family, my sister’s family, or my parents’ associations. Today, Rafael puts on tefilin daily, davens from a siddur, recites Kiddush and Havdala. He enjoys Hebrew and English music but will listen to Hebrew music only after chatzos (noon) on Friday or erev Yom Tov, because that is part of his preparation for Shabbos and Yom Tov. Rafael does not trust the Baltimore paratransit (transportation for people with a disability) to get him home on Friday afternoon in time for licht benching (candle lighting) because of some close calls he had when he was younger. He will therefore not work past chatzos on Friday.
Rafael believes in daas Torah and asks his shailos to his rav, Harav Dovid Katz. Rabbi Katz’s divrei Torah are discussed at our Shabbos tables, and according to Rafael, his divrei Torah is the best. In this, he is following our family “tradition” and friendly competition, claiming, as we all do, that “My Rebbi is bigger in learning than your Rebbi!” Rafael is a member of good standing at Rabbi Katz’s shul and is proud of this. Rafael gets aliyos to the Torah, and is so grateful to participate in the tzibur (community).
Rafael wanted to work in food service, as some of his brothers did. He participated in the Maryland Rehabilitation food service training program but refused to handle non-kosher food, because he was concerned he might accidentally eat treif food. Because he has not had actual training in cooking for a restaurant, he has not been successful in obtaining a job in food service.
Presently, Rafael volunteers at Courtland Garden Senior Citizen Home. He is a transporter, which entails pushing patients in a wheel chair from their rooms to the rehab department. When the patients finish rehab, Rafael transports them back to their rooms. He also wipes the rehab equipment with bleach, so it will be germ free for the next patient. Rafael participates in the Friday afternoon pre-Shabbos festivities at Levindale with Mr. Aharon Grayson.
Rafael lives independently in an apartment with a roommate who also has a diagnosis of Down syndrome. Aides come in to help him with cooking, cleaning, and other daily functions. He does not have 24-hour help and can sleep in the apartment without an aide. Rafael insists on having friends who are not a part of his parents’ and siblings’ groups, because he wants to be an individual who contributes to society. Rafael has some very special friends, who include him for Shabbos at their homes, and he highly regards their friendships. His close friends, aside from his siblings and their spouses, are Pacie Dinovitz, his cousin, Yosef Orshan (who has been a good friend to Rafael since they attended TA nursery school together and invited Rafael to his wedding and provided transportation), Rabbi Yanki Lefkowitz, and Yehuda Labovitz.
I’d like to sum up this series of articles with a conversation I had when we visited Eretz Yisrael in February, 1999. Rafael was 20 years old, and Harav Matis Weinberg asked me how Rafael Shlomo Boruch was doing. My answer: “Rafael is great. If you ask me, Rafael is the normal one. He knows what he is supposed to do and does it. He gets up on time for school, davens daily with tefilin, and is always prepared for Shabbos in way more than just 18 minutes. It is we, the ‘normal’ ones who are having a difficult time knowing what our responsibilities are.”
Rafael likes to be called Rafie. To me, though, he will always be Rafael, my human angel. Thirty-six years ago, after I lost my first pregnancy at the end of the second trimester, Harav Matis Weinberg gave me a bracha (blessing) that all my nisyonos (trials) would become my brachos (blessings). I have thought about this bracha many times, as I noticed one nisayon or another turn into a bracha. Rafael Shlomo Boruch may have started out as a nisayon, but he has become one of the biggest brachos my family is fortunate enough to have!
© 2014 Tzipora C. Frager
