Becoming parents of a baby with Down syndrome has forced us to reconsider our views on parenting and what it means to lead a meaningful life.
Although the Almighty gives us all just what we need, sometimes it takes a good deal of soul searching to recognize His blessings. Six weeks after my wife gave birth to our son, who has Down syndrome, I am beginning to appreciate that we are the recipients of a precious gift.
This realization did not come right away. In fact, the first time I stood staring at our newborn son, as he lay in the neonatal unit surrounded by machines awaiting surgery to repair an intestinal blockage, the overwhelming feeling I had was disbelief.
This was not who we were hoping would be our fourth child; this was not the son who would grow up to be a Torah scholar. Instead, I suddenly became the father of a retarded boy who was going to be dependent on me for the rest of my life.
I woke up the next morning hoping everything was just some kind of terrible dream. "This can't really be happening..."
But it was.
"I may be mistaken, but I believe your son has Down syndrome," Dr. Gur explained to me shortly after the birth of the baby. I sat across from the doctor, looking right at him as he spoke to me, but I might as well have been a thousand miles away. "He has some of the classic signs - slanted eyes and duodenal atresia, an intestinal malformation that 30% of the time means Down syndrome. But we cannot be sure until we get the results back from the chromosome test, which will take at least a week."
"But all of our children were born with Oriental eyes... it's a strong familial trait," I countered. "And he is missing some of the tell tale signs."
"I hope I'm wrong. We'll have to wait for the test results to know for certain."
Late that night, I spoke to my rabbi, Rabbi Noah Weinberg (zt’l), for much-needed counsel. "Think about how you and Dina would change if you were to have a child with Down syndrome," he advised me. "What is the growth the Almighty would want from you? You have a week before you get the results; make those changes now."
We clung to the slight chance that the baby was in fact just fine. Although Jews do not rely on outright miracles, we can pray for "hidden miracles" - events that do not require a complete turning over of the laws of nature.
During those seven days, I experienced an intensity in prayer that I never had before. For the first time I truly understood what the Psalmist describes when he says, "I am my prayer to You" (Psalms 69:14). Genuine prayer occurs when one's entire being, heart and soul, cries out to God with such an aching, ever-present need that the person himself becomes an expression of prayer. It didn't matter where I was or what I was doing, there was nothing else on my mind but crying out to God.
And it was a total solitary experience; no one knew what my wife and I were going through. In order to keep the hoped-for miracle hidden from view, we decided to keep the possibility of Down's to ourselves until we got the final results. Our friends attributed all of our stress to the baby's surgery and recovery in the hospital, which to us was just a minor detail in the big scheme of things.
"MY SON, THE DOCTOR"
On the second morning, I awoke, startled by a dream. I dreamt that I was being chased by a menacing figure. I was running as fast as I could through winding mountainous paths, desperately trying to get away, but the threatening presence was always one or two steps right behind, about to pounce. Since I couldn't outrun it, I realized that the only way to save myself was to turn around and confront it, head on.
I stopped suddenly, turned on my heels, and came face-to-face with the ominous creature. "I'm not going to hurt you," he said as he reached out his hand. "I'm here to teach you..."
I'm not the type who places much significance in dreams, but this dream's message hit me loud and clear: "Don't run away from the baby; embrace him. The Almighty has sent him for your good."
That morning, as my shock began to fade, my attitudes began to undergo further changes. I was standing over our baby, who had just been transferred to another hospital for his surgery. It was the first time I was able to look at him without all the machinery surrounding him. He was sleeping peacefully and as I stroked his head, I was overcome with a wave of sympathy for my sweet and utterly defenseless son. Suddenly I was stung by the realization of how self-absorbed I'd been. What do my disappointment and unmet expectations matter, I realized. This baby desperately needs me. Get with the program!
When I changed my focus away from me and towards giving to my baby son, I forgot all about the possibility of Down syndrome. By doing whatever I could to help him, I began to feel buoyed by the natural love a parent has for his child.
We spent that week in the hospital while our son recuperated. ("Your son is a real fighter," the surgeon told me. "We've never seen a baby recover so quickly from this type of surgery.") All that time sitting next to the crib of my sleeping infant gave me opportunity to reconsider a lot of things: my views on parenting, what kind of meaningful life a person can lead if he has cognitive limitations, and the changes I would need to make in order to properly raise a child with Down syndrome.
I realized that a primary aspect of my parenting is the honor I receive from my children's success and accomplishments. I was suffering from a religious version of "my-son-the-doctor" syndrome. Instead of the pride and respect I would accrue from being the father of children who went on to become successful, wealthy professionals, I was banking on their success in being the best in Torah learning and Jewish leadership. In both cases, an underlying drive is how children will go on to fulfill the dreams of the parents and boost their status. My respect for my children was linked, to some extent, to their accomplishments.
Every parent knows this attitude is wrong, but it's extremely difficult to uproot. It's not easy to love our children unconditionally, our focus solely on helping them bring their unique potentials to fruition. What happens when their potential is so much less or so very different than we had hoped?
Our child is not here to fulfill our needs and expectations. The Almighty gave him to us as an entrustment, charging me and my wife with the holy task of helping him achieve his special mission in life. That is my job as a parent, whether the child is born a genius or impaired with Down syndrome.
But what kind of purpose in life can our son have if he is mentally impaired? This question forced me to confront another fallacious value that my wife and I shared - along with most of Western society. We put far too much value on intelligence. We tend to place greater importance on being smart than being good. My son may not excel in learning and academics, but he can excel in becoming a tzaddik, a righteous Jew who sincerely cares about others and strives to fulfill the Torah's commandments to the best of his ability. And that, after all, is the true measure of a person.
My agitation about my son's possible mental limitations revealed far more about my limitations than his.
Don't get me wrong. We would still expect a lot from our son. We decided right from the start that the best approach to dealing with any inborn disabilities is to expect the most until proven otherwise. But our nachas isn't going to come from our son doing better than others; it will come from his striving to attain personal milestones as he works hard to fulfill his unique potential.
The day before our son was discharged from the hospital, the geneticist confirmed the diagnosis of Down syndrome. I was taken aback by the results. After a week of incredibly intensive praying that our son would not have the chromosome disorder, and trying to work on making the changes I thought the Almighty wanted from me, I was really expecting that everything would be just fine.
I had to make a major mental readjustment. Looking at the big picture, I realized that God had given my wife and me a daunting task, and if we were to rise to the challenge of raising our special son, we - and our extended families - would be better for it. Perhaps for the first time that week, I not only intellectually thought that God knew what was truly best for us, but I finally felt it in my bones too. Everything, in fact, would be just fine.
Rabbi Moshe Shapiro, a leading Torah scholar in Jerusalem, wrote the following in a letter to a student who became the father of a son with Down syndrome:
Since the birth of your son, Nota Shlomo, I have believed that if, with God's help, you will succeed in the challenge which was given to you, then you will have been presented with an incomparable gift.
This child has within him the capability to accomplish that which nothing else in the world can do - to actualize wondrous and powerful energy latent in the recesses of your heart.
The Almighty also knows what is best for our son. The fact that he was born with limited cognitive abilities indicates that he possesses a lofty soul that is in need of less rectification in this world.
Rabbi Shapiro wrote in the same letter:
Each neshama [soul] is sent to this world with the purpose of rectifying something specific to it. Most people are sent to improve themselves primarily, and also to affect their surroundings according to their abilities. There are some neshamos, however, which are sent as people incapable of adequately rectifying themselves. In defining their existence, then, we must understand that these are especially exalted neshamos which in and of themselves need no correction. Their entire purpose in being sent to this world is to correct and better their surroundings.
A neshama of this grand stature has been sent into your home. Accept it with much love, and assist it to perform the function for which it was sent.
May God help you to carry out your role - to enable this neshama to suitably fulfill its role.
We named our son Yehuda Meir, which can be translated literally as "a shining source of gratitude."
One of the clear lessons his life has already taught us is to appreciate every tiny step that we usually take for granted. When Yehuda Meir, at six weeks, turned his head and rolled over (the physical therapists didn't believe us at first!), it became a spontaneous household celebration. Every small milestone in his life - from smiling to sitting up to walking and talking - will be viewed as a massive accomplishment and a gift from the Almighty. We can't take anything for granted, including our son's general good health (50% of children with Down syndrome have congenital heart defects). And we're trying to direct this heightened appreciation to our other children as well.
The name "Yehuda" also contains the Hebrew word "hod," which means majestic beauty and splendor. Hod is a special form of beauty that occurs when the internal spiritual value far exceeds the external package, and breaks through, bursting at the seams and overwhelming the physical.
For example, when Moses came down from Mount Sinai, rays of light -- in Hebrew "karnei hod" -- exuded from his face and no one could look at his awe-inspiring presence. This burst of light represented Moses' inner spiritual dimension that could not be contained by his physical exterior. His inner spirituality broke through and surpassed his physical limitations, revealing a spiritual essence far greater than his small, earthly self could contain.
Each and every one of us is given a set of certain strengths and limitations that create our special tafkid, mission in life. Our work in this world is to strive to reach beyond our limitations and make our life a glowing source of hod, of majestic beauty -- which is the meaning of the name "Yehuda Meir."
This applies equally to little Yehuda Meir, whose limitations are more pronounced. While he may not attain quantitatively an equal share of Torah and leadership skills as some great rabbis, he can strive to attain an equal share qualitatively - not despite his inherent limitations, but by specifically using them as a springboard to let his special inner beauty burst forth. Yehuda Meir, no less than any Jew, can become a radiant source of Godliness in the world.
My wife and I still catch ourselves tripping over the misplaced value of intelligence over goodness, thinking to ourselves how our son will be one of the smartest, most accomplished children with Down syndrome. We realize we have a lot of growth and challenge - and most of all, joy! -- ahead. In the meantime, we are taking great pleasure (along with our other kids) in getting to know our adorable son.
All of our heartfelt prayers during the first week of Yehuda Meir's life did not go to waste. It is our fervent hope that God will direct those prayers to his continued growth and development, both physical and spiritual, helping him to become a source of tremendous blessing. And may the Almighty give us the clarity, patience, and wisdom to carry out our noble task in raising this precious Jewish neshama.
Reprinted with Permission from Aish.com
This article first appeared in issue #14 of Down Syndrome Amongst Us