Summary: Tzipora and Yehuda try to manage their reactions to advice-giving and other comments by family and friends in the first weeks after Rafael’s birth, and are helped immensely by their visit to Rav Shmuel Yaakov Weinberg, zt”l, as well as their conversations with other empathetic mentors. The bris is postponed as the baby is hospitalized to stabilize his body temperature. The next step is a urologic examination to determine whether he could have a bris at all. Anticipating trouble, Tzipora brings her father and Rabbi Taub, zt”l, to the appointment, where Rabbi Taub proves to the smug doctor that all is well. The day of the bris finally arrives. It is a happy occasion, full of simcha and brachos.
As soon as the festivities of the bris were over, reality set in. Yehuda’s parents and brother made their exit by highlighting all the special needs supports Rafael Shlomo Boruch could have in a more sophisticated city such as New York. Others wanted to know our game plan for raising Rafael.
This was when I began to focus on the lessons from Tehilim (Psalms) that my twelfth grade teacher, Mrs. Shira Shapiro, taught. One lesson from perek 19 stood out. The perek discusses how the creations in the world give praise to Hashem by doing exactly what He wants each to do, and the creations do Hashem’s will in harmony. No creation is trying to outdo the other or trying to put the other creation in its place. Dovid Hamelech (King David) continues to state that we (klal Yisrael) need to see this as an example of the greatness of the Torah and copy this behavior. Knowing the essence of this perek has been a source of hope for me about Rafael. It made me understand that Hashem created Rafael; therefore, Rafael had a tachlis, a purpose in this world.
Two thoughts were constantly in my mind from this perek and other parts of the Torah that I learned. One was that Rafael needed to be an eved Hashem, a servant of G-d, in exactly the way Hashem created him – just as we all need to use our talents as well as our weaknesses to serve Hashem – and that it would be possible to raise him to be an eved Hashem, doing what Hashem wanted him to do. I felt that we could achieve this goal in our education of Rafael, because we could stress this idea in our home and the homes of our families. My second thought was that we would have to make sure that Rafael’s environment outside our homes gave him harmony and friendship, rather than his becoming a target of ridicule because of his differences. Other people would have to be educated to understand that Rafael is a person created by Hashem, just as are all other human beings.
The good news was that, in 1980, there were resources to help Rafael meet his physical milestones. Rafael already had two appointments at Mt. Washington Pediatrics, where he received physical therapy, and I was taught exercises to do with Rafael throughout the day. I, in turn, taught Yehuda and my parents these exercises, and they incorporated them into playtime.
The services were fee-for-service, which meant that our medical insurance would pay a percentage. Although the co-pays soon became budget breakers for us, we did not qualify for Medical Assistance, which paid 100 percent of the services. Maryland had very strict requirements to obtain Medical Assistance in 1980 as well as presently. There were no programs for families with a working parent whose salary could not accommodate extra costs for illness or physical therapy for children with disabilities. In 1990, Maryland passed a law to provide insurance for families who had a parent employed but could not afford medical insurance. But it took some families a few more years to apply and qualify after the law was passed.
Soon after Rafael’s bris, Mrs. Suri Rifkind, from the Baltimore City department of special education for infant and toddlers, contacted me. Mrs. Rifkind was in charge of reviewing the applications and setting up services with an appropriate provider. She told me she saw that Rafael was from our community, and since other applicants who were ahead of Rafael were not returning her phone calls in a timely manner, she was able to service Rafael faster. I remember being so grateful for Mrs. Rifkind’s kindness and the nice way she spoke to me. So Rafael began physical therapy once a week, six weeks after his birth.
Today, this would not happen as smoothly. This is because there are so many more children with disabilities that the City has a big backlog. Another reason is that, in 1980, the City residents did not use City services as much as they presently do. When I showed up for any appointment I had scheduled – whether at the pediatrician’s office, Mt. Washington Pediatric Hospital, Sinai Genetic Counseling Service, or even if I was present when the physical therapist came – I was praised and told that it was unusual for City mothers to keep appointments. I was therefore known as a “good client.”
(This phenomenon has changed drastically, because many more children in our community are born with disabilities. Also, the City now employs advocates who help mothers and children get to their appointments. In general, the City has fewer resources and many more children who need services.)
Within the Jewish community, virtually no resources existed. P’TACH (Parents for Torah for All Children) was just starting out. This organization was one of the first attemptsto help special needs children within the Jewish community and, in fact, probably the first formal acknowledgment that such a thing was necessary. (When I was still pregnant with Rafael, I had baked desserts for Mrs. Gerstein, a”H, for one of the first fundraising parlor meetings for P’TACH.) But P’TACH focused on school aged children. There were no Jewish support groups for us. Yehuda and I therefore attended a Sinai Genetic Counseling Services support group.
We went to our first meeting a few weeks after Rafael’s bris. The participants were from all over the state of Maryland. There were many couples present from various socio/economic backgrounds, races, religions, and ages. Yehuda and I appeared to be the newest and youngest members. The group discussed feelings of persecution because of having a child diagnosed with Down syndrome. The members were encouraged to discuss their feelings. I chose to say that although this was a shock, I thought of it as a blessing because it was from G-d.
A woman stood up and yelled, “How dare you say that G-d did this? G-d made my child to suffer discrimination from people because she looks different?” I replied that this was my belief because of what Rabbi Gifter told me when I was in the Knoxville hospital. This statement seemed to enrage this woman even more. She emotionally declared that I was a Pollyanna who would soon learn that my naïve understanding was wrong.
I did not know what to say, so I apologized for hurting her feelings and was quiet. This incident made me think long and hard about continuing with the support groups. However, part of the agreement when using the case management services at Sinai Genetic Counseling Services was that we participate in the therapeutic groups and counseling services. This was because, at that time, the case management services were not billable and were therefore provided free of charge. (Case management services helped families access and navigate community resources.) But the groups and counseling could be billed to our medical insurances and thus supported the much needed case management services.
The support groups educated me with the understanding that not everyone can use faith to help them through their difficult times. I also began to understand that not everyone has the same reaction to similar situations and that this is not right or wrong – it just is. People need their own way of processing the disbelief that this could happen to them. It is not helpful or beneficial to compare anyone’s personal reaction to difficult circumstances to anyone else’s.
The birth of Rafael made me understand something else: that there is grief when one loses something he expected. People need to process their emotions in their own time and way. A good friend just listens without judging that person, offering advice, or comparing that person to herself with thoughts or statements that hint that she could handle the situation better. Our advice makes sense to ourselves but, many times, not to the person going through the difficult times. The flip side was that I understood that I was not going to get much strength from this group regarding emuna and bitachon (faith). This was a bitter pill to swallow, because it is through emuna and bitachon I am able to balance hope and reality.
Soon, I began to realize that Baltimore did not have the type of resources we needed to raise Rafael. Mt. Washington Pediatrics was a good resource, but we could not afford the co-pays. Rafi was participating three times a week at Mt. Washington, and a city physical therapist came to our apartment once a week. We were attending the support groups and getting individual counseling, but there was no real connection to what I needed so I could remain emotionally and mentally strong.
The realization that we might have to find a place that offered better resources for Rafael was hard to acknowledge, and even more difficult to deal with than having a baby with a disability. I did not want to move because my family was in Baltimore.
Today, when I hear parents with children with disabilities from our community discuss the lack of resources, I cannot help but identify with their situation. Since Rafael was born, various programs have been established and become defunct. Partnerships have been created with other, larger Baltimore Jewish agencies and then disintegrated because of no funding. I am hoping that the programs that are presently in place will have longer staying power.
The statement that was the most helpful to me at this early stage was made by Rafael’s physical therapist from Mt. Washington Pediatrics. She said, “Watching a child diagnosed with Down syndrome grow and develop is like watching a movie in slow motion. These children do reach all the milestones of other children, only in a slower pace.” This gave me hope for the future.
In the next installment, the Fragers leave Baltimore to get help for Rafael.
