Transition: How Much Pain?

Dear Mrs. Sander:

I wish that your wonderful magazine had been available when our son was born eighteen years ago with Down syndrome. Although there is an excellent and informative Down syndrome association in London which publishes their own newsletter, a secular publication is certainly not as supportive nor able to reach out to a Jewish heart the way your magazine does.

Our initial grief at the news of our son's condition was overwhelming! We knew very little about this syndrome, and had horrified visions of a life with a baby, a child, a teenager, an adult who would never be able to function in any capacity. Yes, the future seemed terrifying! But, as we began to learn more about his syndrome we slowly realized that although we might have to relinquish certain goals for Moishe, we were determined that he should reach his own potential, never envisioning in those early days of struggle and fear, and initial shock, bitterness and profound sadness, would come acceptance and a deep and abiding special love for such a special boy. Moishe, as the youngest of a large family, KA”H, holds a very endearing position. He is uncle to countless nieces and nephews KA”H, who have all understood from very early on that their Uncle Moishe needs more time to learn and to do things than they do. His social skills are tremendous and his charm, coupled with a devastating smile, are quite overwhelming. To know this young man is quite simply to love him!

Looking back on Moishe's bris it is difficult and poignant to recall or to even comprehend the grief we felt at the time. We literally felt that our world had come to an end. However, we have since learned to treasure each of Moishe's achievements from learning to ride a tricycle, to tying his own shoelaces, to this past Yom Kippur when he fasted the entire day (a tremendous achievement for a boy who LOVES his food) and he spent seven hours in shul singing, davening at the top of his voice! A child like this can create a tremendous bond within the family, a feeling of ‘achdus', of togetherness. A child like this can also cause tremendous stress and tension within the family, and there is at all times an aching awareness that you have a child who is different. There is the constant fear of the future when you will no longer be there. We know that although we have many married children KA”H, who love Moishe, they have their own families, and ultimately and sadly, our son will have to go into residential care, which no matter how excellent, can never give that love and devotion which only parents can give.

We wonder whether there will ever really be a place in the community for the Moishes of this world, and will the public be aware of the needs, abilities, and aspirations of our special youngsters, encouraging them to participate in an equal manner, or will there continue to be the simchas, the weddings, the Bar Mitzvahs, where the invitation for Moishe somehow never arrived!?! Too often, our Down syndrome children suffer the sting of rejection. People are kind, people are well-meaning, but people are also very busy with their own lives and forget or ignore the needs of others. A cute three year old with Down syndrome is not necessarily a cute teenager, and the gap between others of his or her age, widens and widens with the differences, becoming more apparent as the child gets older, which brings me to the point of this letter!

Although I appreciate Rabbi Shlomo Canvasser's positive and ‘simcha'dig' attitude to the birth of his Down syndrome daughter (Issue #5- ‘A Different Attitude') I found his remarks to the mother of an adolescent DS girl rather sanctimonious, and, in my opinion, you as the editor, should not have published that particular anecdote. I fully accept that none of us can understand Hashem's ways, nor why we are chosen to be tested. We all do what we can, and it is surely not up to us to judge others. Nor is it up to Rabbis Canvasser (whose daughter is only seven months old, and he is quite thrilled with the challenge of raising her) to criticize a parent, who if they had the possibility of their child being born normal, would want that option. Rabbi Canvasser, my husband and I love and cherish our son as much as you love your daughter, more so perhaps, as he has been such an integral part of our lives for so long. I can only and publicly state that if we, today, had the opportunity of Moishe being ‘normal' we would grab at that chance for HIM -not for US. The ‘wonderful ways in which he has contributed to our family life' (quote from Rabbi Canvasser) do not make up for the fact that he is different, and is beginning to be aware of it. Your infant daughter, Rabbi Canvasser, has not yet asked, the way our son asks us - “When can I drive a car?”, “When can I get married?”, “When can I be a Tatti?”. Don't judge others - you are just not there yet.....perhaps in another seventeen or more years?

May Hashem, in His goodness, protect and care for all the special needs children in this world. May they be accepted and loved by their families and communities and may that acceptance and devotion bring about our ultimate dream - the coming of Moshiach.

Yours sincerely,
Gaby Goldblatt
London, England

RABBI CANVASSER RESPONDS

I am grateful to Mrs. Goldblatt for sharing with us her poignant and realistic portrayal of the challenges associated with an adult child with Down syndrome. In this regard, there are some wider issues I would like to address.

There are many ways to deal with feelings and to find meaning in life (look at the book “Chicken Soup for the Soul”). The real question for us as Torah Jews is, do we have a particular way of dealing with our feelings?

While feelings are real, they are not reality; as in every other aspect of our life, Torah is reality. This DOES NOT mean that G-d expects us to reject or ignore our feelings and only relate to life intellectually. This is clearly incorrect, as I will speak about further on. What this DOES mean is that since feelings are such a natural part of what being a human being means, it must be that G-d WANTS us to recognize our feelings as our FIRST STEP in dealing with our life situations and not to get stuck there; rather, with the Torah as our guide, we are to USE those feelings AS THE BASIS for whatever may be our next step toward fulfilling the ultimate purpose of more clearly and consciously serving G-d.

It is quite obvious that this process of using one's feelings in one's service to G-d must necessarily be a very individual one. Therefore, what I will be sharing is MY understanding of what the Torah tells ME about how to deal with feelings and how I have used this understanding in my own life. If what I share resonates with others and helps them better understand THEIR feelings and THEIR way of dealing with them, that's wonderful; if not, that's also wonderful, since I am not presuming that my way of looking at life through Torah is the only way to do so and I would be very grateful to hear of how others have used a Torah perspective to deal with their feelings.

When I want to understand how the Torah wants me to do something—even regarding feelings—I look to the halachah. Regarding feelings, there is a most remarkable halachah, which appears in Shulchan Orech, Orech Chaim, Chapter 222, paragraph 3. There it states the following: One is obligated to make the blessing over not good tidings with the same clarity of understanding and desiring heart that one has when making the blessing over good tidings. [The reason for this is that] bad events for servants of G-d are their joy and their good because since they receive the decree of the Al-mighty with love, one finds that in so doing they are serving G-d, which is their joy.

The halachah seems to imply that a person would feel the same way about bad events as he does about good ones, and the obvious question is, how can that be?

The halachah is NOT saying that we must be happy about the bad itself. Rather, what we are to be happy about is the WORK which is required of us to accept out of love, from G-d, what we didn't want. What is being asked of us is to move from the perspective of being attached to wanting what we want, to wanting what Hashem wants. This point is very crucial and needs to be explained because of a common, mistaken perception.

The common mistake that people make is in believing that, since what I want is not the truth, I have to give up what I want, and do or take on what Hashem wants. This is not the case. We DO NOT, and are not meant to “nullify our will”. What we are meant to do is to make the shift of wanting what we want, to wanting what Hashem wants, while still living through our desire to be attached to Hashem's wanting (so to speak). We haven't given up on anything; rather we have shifted our perspective of what it is that we want. And it's the process of making this shift of perspective which is what being a servant of Hashem is about.

What the halachah is teaching us, then, is that the effort of making this shift is our true joy and our good. And it is for this reason that Hashem gives us the gift of not good events: because it is precisely here that the work which we need to do is so apparent.

The truth is, however, that when we are in the thick of not good events it is very difficult to get enough perspective on what is happening to apply these ideas. How, then, do we prepare ourselves to do what the halachah is asking of us? We learn to receive the bad things in life from the way in which we receive the good things. But what work is involved in receiving the good?

The first aspect of the work involved is appreciation—recognizing that one received something good and that this good came from Hashem; this was not an accident and it's not something to be taken for granted. The more that I recognize the good in my life as coming from Hashem, the more aware I become generally of the presence of Hashem in my life in ALL ways.

The second aspect is thinking about what our definition of good is. If good is what I want, then, of course, when bad things happen, I am going to be fixated on my not having gotten what I wanted. If, however, my understanding of good is anything which helps me better serve Hashem, then I am in a much better position of seeing bad events in a different light.

The extent to which one appreciates the good as it happens, one recognizes that this good has come from Hashem, and one understands good in terms of one's service to Hashem, will be the extent to which one is actively spending one's life being cognizant of, and aligning oneself with Hashem and His will. Then, when unpleasant things happen, one will be more conscious of the connection that one has with Hashem and one will have the tools to make the shift that the halachah demands of us: moving from being upset that it didn't work out the way I would have wanted; to recognizing that what happened is what Hashem wanted, which is, in fact, what I ultimately do want. It is when this shift takes place that one can feel true happiness with the situation—either in the recognition that one has had the opportunity of working at being connected with Hashem; or in recognizing that, beyond the limited perspective of what one wanted, this event is evidence of the will of G-d who is giving us exactly what we need, for our good, even if we wouldn't have seen it that way.

Once again, I need to stress that the beginning of this process is one's feelings: acknowledging what it is that one wanted and what one feels deprived of. This process is not about lightly skipping over our pain, expectations, or unhappiness. If we appreciate what we wanted—and didn't get—we can then learn much more from what it is that Hashem actually gave us.

There is a second principle at work which can help one put not good events into perspective. We are in this world to achieve the goal of earning our portion in the world to come. The only way that we can do this is through our effort and work (adam l'amul yu'lad). Hashem, in His kindness, is constantly giving us both the opportunities to accomplish our purpose in this world and the tools with which to do so. Very often these opportunities will come in guises that I wouldn't have thought were what I would want. But, then again, that makes sense. Obviously, we can only see as far as we can see—we can't see beyond that. So, if we only received opportunities which made sense to us, we would never grow, because our horizons would always be limited to where we are now. Hashem, however, can see beyond where we are now and where it is that we need to go. And that is the purpose of every test: to bring to fruition what is, at this moment, latent potential.

Additionally, if we are meant to learn a certain lesson, or if there is a particular purpose or task that Hashem wants us to fulfill, then, if Hashem has faith in our openness to do His will, we are going to be given the opportunities to learn that lesson or to fulfill that task. The way we learn the lessons is through our being stretched beyond what we might have thought we are capable of. The challenge is to recognize this and to be willing and open to using the experiences that Hashem gives us to the fullest.

There is a famous explanation by the Chafetz Chaim of the verse in T'hillim “Ach tov v'chesed yird'funi kol y'mei chayii...” (“May only good and loving kindness pursue me all the days of my life...”) which illustrates this.

The Chafetz Chaim asked why it is that King David speaks about being chased by good and loving kindness—shouldn't he have spoken about our chasing them? His answer is that since a person is meant to labor in this world, he is always going to be chased by events and situations to deal with. King David was asking Hashem that the kinds of situations that he should be challenged by should always be ones of having to do with doing good and acts of loving kindness.

In summary, what I learn from these two principles (shifting from wanting what I want, to wanting what Hashem wants; and know that life is meant to be a challenge and it is always going to be so) is that when ANYTHING happens, whether for the good or the opposite, I am less concerned about making a judgment of "good" or "bad" than I am about stretching myself to see it through Hashem's eyes and asking myself, "What is it that Hashem wants from me and wants me to learn?".

So, regarding the birth of our daughter with Down syndrome, what is my understanding of what it is that Hashem wants from me and my wife?

As educators for many years (including special education), we have the perspective that every child is special; each child has a particular soul which has come into the world to fulfill ITS purpose. We believe that, while nobody is perfect in their make-up, each person is PERFECTLY as Hashem wanted them to be, with the abilities to be who they are. The gift we always want to offer someone is the vision of who they are and how to utilize, with G-d's help, WHATEVER that is to the fullest. Our role, as educators—and the area where we feel we need the greatest Divine assistance—is to look for each person's particular qualities and to nurture and cultivate those. Therefore, when we think about the education of our children, we see them both as having special needs, with those of our daughter just being more obvious. In fact, in one way, we feel that the burden of educating our son weighs more heavily upon us; not in the sense of physical effort but in the sense of the diligence required to be sensitive to HIS more subtle special needs.

It is true that, with Down syndrome, there are various aspects of the syndrome that one can expect will impact on, and limit one's child's life activities. Even though we know that our daughter will have certain kinds of limitations, at the same time, we know that our son WILL have HIS limitations, since no one is perfect. And since everyone is limited, rather than seeing the limitations, we choose to see who the person is. And, G-d willing, just as our son will learn to accept his limitations and celebrate his abilities, so too, will our daughter learn to accept her limitations and to celebrate her abilities. Will this be easy? Will it come naturally? Will other people be as accepting of our daughter as our children will learn to be, G-d willing? No. But who said that life was meant to be easy and natural and to be lived according to other people's vision? Are people with DS the only ones who are challenged in life? Are they the only ones who have to live with other people making hasty and inappropriate judgments? Are “normal” people immune from dealing with their own disappointments and social discrimination of various kinds?

Many years ago, I came across the following article. In a certain kind of way it summarized the kind of shift in the way we look at our children, which I believe is possible.

A professor of nursing made the following case presentation: The patient neither speaks nor comprehends the spoken word. Sometimes she babbles incoherently for hours on end. She is disoriented about person, place and time; she does however respond to her own name.

I have worked with her for the past 6 months, and she still shows complete disregard for her physical appearance and makes no effort to assist in her own care.

She must be fed, bathed, and clothed by others. Because she has no teeth, her food must be pureed. Her shirt is usually soiled from almost incessant drooling. She does not walk. Her sleep pattern is erratic. Often she wakes in the middle of the night, and her screaming awakens others. Most of the time, she is friendly and happy, but several times a day, she gets agitated without apparent cause. Then she wails until someone comes to comfort her.

I asked how the nurses would feel about taking care of such a patient. They used such words as "frustrated", "hopeless", "depressed", and "annoyed". When I said that I enjoyed it and thought they would too, the class looked at me in disbelief. Then I passed around a picture of the patient: my six month old daughter.

Why is it so much more difficult to care for a 90 year old than a six month old with identical symptoms? A helpless baby may weigh 15 pounds and a helpless adult, 100 pounds, but the answer goes deeper than this. The infant, the class and I agreed, represents new life, hope and almost infinite potential. The aged patient represents the end of life with little chance for growth. We need to change our perspective.

This seems to me to be an apt analogy for the possible ways of living with a person with Down syndrome. We can see either sets of symptoms that have to be dealt with. Or we can see a soul which has come into the world in its own particular physical form, giving us the opportunity to help it accomplish what it was sent here for. Similarly, where most people would see our daughter as being "different" from our son, we would humbly suggest that one man's "different" is another man's "individual". It's for this reason that each time I see the ways in which our daughter is different from our son, it reminds me of the ‘specialness' of her soul and it prods me to look ever more deeply to understand who she is and what it is that she is here to teach us all.

Professor Cliff Cunningham, in his book, ‘Down's Syndrome: An Introduction for Parents'—one of the most comprehensive and sensitively written books that I have seen on the subject—concludes with the following comment:

Bringing up any child is a challenge. Whether bringing up a child with a handicap is a greater challenge, or just a different challenge from bringing up an ordinary child, is a matter of opinion. But bringing up a child with Down syndrome is not only a challenge to cope, and provide the child with the best available opportunities to grow and develop—it is a challenge to the set of values by which we judge others, and decide what we want from life.

Hashem has given my wife and I two very wonderful and equally demanding challenges. It is our prayer that we should, with His help, be able to raise them to live their own lives with the vision of knowing that everything about who they are and the things that happen to them are lessons from Hashem for their good; and that life, while not being easy—or, possibly more correctly, BECAUSE it isn't easy—is always a gift and an opportunity.

This article first appeared in issue #6 of Down Syndrome Amongst Us


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