By giving us children to raise, G-d has entrusted us with a unique gift. Children are both a challenge and an opportunity for us to reach beyond ourselves and to grow into better persons. In the encounter with every one of our children, we are asked to extend ourselves and to transcend our inherent limits to some degree. On the one hand, the gift of children translates into responsibilities and personal accountability; on the other hand, it opens the door for growth, self-improvement and self-actualization. The nachas that children give parents is a very special bonus, but by no means the essence of raising children. Every child contains these challenges. Even the easygoing, studious, and kind child presents us with personal tasks; whether it is the cultivation of modesty or the avoidance of false pride in the face of nachas.
Nowhere is this challenge as apparent, however, as in the case of children with disabilities. All parents pray for a healthy child: a child that is physically fit, mentally alert, and emotionally stable. Before a baby is born, parents fantasize about the new little person and wonder whether it will be a boy or girl. We pray that the child should not have a genetic disorder, an illness or a chronic condition, G-d forbid. The Torah tells us that Rivkah sensed and worried that Eisav and Yaakov fought in her womb and would be at odds. It is only natural for parents to worry about problems. The doctor's first words at a birth are meant to alleviate these fears: “It is a healthy boy, “ or “It is a healthy girl.” What is it, then, to have a child that is not healthy, that is disabled, sick, brain damaged, or manifests a birth defect? What is it, then, to be told that a child, G-d forbid, had an accident and is in a coma?
The Talmud tells us of a rabbi who met an exceedingly ugly man on the road. “How ugly you are! How dare you show your face in public?” the rabbi exclaimed. The ugly man looked at him calmly and said: “Don't complain to me about my looks. Complain to the potter who fashioned this vessel!” (Taanis 20a).
The body and all its physical abilities are but garments that surround our souls, and we cannot conclude from looking at a person what his neshamah is like. There are many stories about tzaddikim who were told that their companions in Gan Eden were simple and even unlearned but very devout and sincere people, whose devotion to G-d was absolute. We truly believe that everything comes from G-d and is good. The same way as Torah observance is not a matter of picking and choosing, the children we get are not “mistakes”, but given to us through Divine providence. As parents we need to thank G-d for each child, including the child with special needs, and we should see this child as both a gift and challenge.
When things do not correspond to our expectations and violate standard norms, our model of the world and ourselves is being challenged. Our own strengths as persons can be measured by the degree to which we are able to meet those challenges. The strength of a family, a community and of a society can be measured by the degree t o which they are able to include and care for all of their children, including those that are disabled. A story is told of the daughter of a great tzaddik who was betrothed to the son of a righteous rabbi from a distant town. As the wedding party approached, the girl looked out the window, and saw her groom arrive in a coach. To her horror he was hunchbacked! She was so taken aback by his appearance that she called her father and told him that she could never marry this young man. The young man listened quietly to the rabbis news that his betrothed refused to marry him. He agreed to set her free if he would be permitted a private audience with her. When the groom and the bride were alone he asked her to stand with him in front of a large mirror. As she gazed in it she saw how his hunchback lifted itself from his body and placed itself on her back. The groom then said to her: I want you to know that our souls were meant to be together. When we were in Shamayim (heaven) it was decreed that you should be born with a hunchback. I took the hunchback for you, because I knew that it would be too hard of a lot for you to bear. At that moment the bride saw him as he really was, and she agreed to marry the hunchbacked groom. An African proverb tells us that it takes a whole village to raise a child, and it may take a whole shtetl to raise a Jewish child. When parents have a child with a disability, the community who welcomes this child with open arms as one of its members can make the difference between success and failure. Once a child is born, we need to accept that Hashem has decided that this very child is the perfect match for us and our family, and, by extension, for the entire Jewish people. Although it is natural to argue, to worry, to cry and to mourn the lost dream, and although it may take time to come to terms with this unexpected turn of events, we can and need to eventually accept that this child and all that its care entails was meant for us and us alone. We need to give up our dream, because that is all it was, and accept and affirm the reality as Hashem created it for us.
Relinquishing ones dreams is hard and may feel like the loss of a precious jewel. As parents we create our own image of our children long before they are born. In a way we play an exciting game in anticipation of the child. We may recall different ancestors names and try them for fit in our thoughts. Upon shopping we may see a pretty Shabbos outfit that might fit the potential little, as of yet unborn, princess. When the baby kicks we cannot help it but think that the baby is trying to tell us something. We look at a sefer and see our little yingele - yet unborn - reading his first words. The image may have been that of a little boy learning aleph-bais, but reality may bring a bright little girl studying Chumash.
In the case of a child with a disability we need to radically alter the picture that we treasured during pregnancy. When a child becomes disabled later in life we need to let go of our memories of the child in his days of health. When we continue to hang on to our images of how the child was or should have been we cannot help but constantly compare the child with our dreams or memories. In a way our sense of loss never allows us to meet the child as he really is. We fail to connect with the child in all of his fullness and G-dly perfection. We never penetrate the shell of his disability to know him as a unique person who carries within him a spark of G-dliness.
A disabled baby girl was born to a rabbi and his wife in Israel. For the first few days the father walked around downcast and sad. Later that week, however, a friend of his found him to be his former joyful self. I found the name for my daughter, the father said. We call her Shulamith. In her name is the word shaleim which means wholeness. When I finally found the name for her I was able to see her in her completeness and her perfection as G-d had created her.
For months after her child was born with Down syndrome a mother had the sensation that another baby of hers had passed away. This imaginary baby was singularly beautiful with a shiny star on his forehead and seemed to live in the back of her mind. At times she felt guilty about this, at times she felt intense pain and longing for her starbaby. As time passed she realized that this was her dream and her own fantasies that she needed to bury in order to fully accept a treasure - her own real child.
What is acceptance? Acceptance must not be confused with resignation or a grudging Oh well. Genuine acceptance means the favorable reception of G-ds gift. It also means taking upon ourselves the duties and responsibilities as they come with this child. We need to subordinate our will to Hashems will and find happiness in this in spite of the suffering. While we are unable to know Hashem's intentions, we are able to transcend ourselves and we can find positive meaning in the fact that G-d chose us to be the guardian parents of this child.
Acceptance does not mean fatalism and complacency. As Jewish parents we want to explore all avenues of helping our disabled child. We want to take advantage of advances in medicine technology, the rehabilitative sciences, education, psychiatry and psychology. We want to be in touch with other parents who can support us and share information with us. As Jewish parents we may advocate for our children's right to a Jewish education and their rightful place in the Jewish community. Although children with special needs are considered disabled, we need to remember that their disabilities exist only in our eyes as something that detracts from them.
Giftedness is mostly taken as intellectually precocious and exceedingly bright, but giftedness transcends the boundaries of scholastic excellence. Persons are gifted just by virtue of being different. Giftedness is not only what a person has to give, but also what a person enables another person to give. If we were all healthy, happy, rich and all knowing we would all be self-contained, but not gifted. One persons need is a gift for those who can satisfy this need. Similarly, it takes special care and eyes to see the gifts that are not obvious nor scintillating. If we were all the same, giftedness would not be possible. It is precisely diversity and differences among us that enable us to be both gift givers and receivers.
What could possibly be the gifts that a child with a disability has to offer? A father - whose youngest son was born with Down syndrome -remarked that his other sons accept the fathers brachah on Shabbos with a sort of ennui. His youngest, however, shows a true reverence for the fathers act and responds to the brachah with great joy and happiness. The child's simplicity and pure joy is a gift to the father, who then experiences the brachah as the truly precious act that it is. This same child does not talk much, but his every word is special and treasured by his parents. What they took for granted with their other children has become noteworthy and appreciated. This child opened a door for them that leads and continues to lead them into spaces of Hashems infinite palaces that they did not even know existed. Their projected life plans changed; they changed; their community is changing.
Excerpted from the book Positive Parenting. Reprinted with permission by Artscroll Publishers.
This article first appeared in issue #7 of Down Syndrome Amongst Us