hearttoheartamerican.org Blog

From the age of two until the age of four is when the child begins to organize and categorize the world. This is the time language begins.

Once the child is adept at making order which occurs at about the age of four the child also masters organizing skills and becomes adept at recognizing and using symbols.

At the intuitive stage the child begins to reason. This intuitive reasoning is dependant upon coincidence for explanation. This phase is referred to as the intellectual level of moderately mentally retarded.

This is not an exact science. The series of stages of development, however, do offer an insight into the ability to reason and be abstract. It also explains at what stage variations might occur. The child with mental retardation rarely attains an advanced level of conceptualization or reasoning.

It is very common for parents to talk about their teenagers as children. These same parents then will also refer to their young adults who have Down syndrome as “children” as well.

Achieving independence then, is a significant goal in the life of a person with Down syndrome. Unlike other teenagers, the retarded adolescent receives very little assistance from his peers in his/her struggle for independence.

There are precious few opportunities for social contact on a regular basis for adolescents with Down syndrome and typical teens. A more suitable solution would involve older siblings.

Older siblings provide a built in role model for the adolescent to emulate to form friendships and partner with at every stage of development. These older brothers and sisters demonstrate fundamental interactive social behaviors provided they have been raised in the same or similar environment. Thus the familiarity of this long term relationship will offer the retarded sibling benefits by continuing the development of appropriate socialization skills with those whom they admire so much in the first place.

By the age of five or six the intellectual differences among children is so great that it is impossible to offer any predicable survey with accuracy. As a result, scientists can only proffer opinion based on their examination of data rather than know for certain based on their observations.

At the age of five or six it would certainly be no great trauma to reintroduce a mentally retarded child to their biological family since the age and developmental levels have not fully developed yet.

However if the living arrangement reaches the early to mid teen age years and there is an attempt to disrupt the existing living arrangement then it is necessary to fully investigate the motives of the requesting (biological) family seeking a reversal of the current living arrangement.

Many agencies mission varies from year to year as the governmental funding and provisions change. One only need review any of myriad of agencies serving the orthodox Jewish community to see any 2 to 5 year period and how this pattern is revealed.

Our mission has remained steadfast. Our objective unchanged.

To improve the acceptance rate of our children within the community, to provide them with a warm, loving, and stable home environment, and to educate them within the community educational system side by side with the typical children in the community.

1) When a mother gives birth to a normal healthy baby it is a well documented fact that there is a significant incidence of “postpartum depression syndrome,” that is a mood condition. This is a well documented depressive disorder which occurs after a live birth. So how much greater is this condition to be expected to manifest as a syndrome after the birth of a baby born with a disability, such as Down syndrome?

2) There is a lack of accurate, comprehensive information about Down syndrome in general and specifically within the orthodox Jewish community. Many texts are available in secular libraries and as for those who have internet these venues are there to be explored as well. And finally there are the stores outside of the community offering a wide range of materials from simple to follow to text book style with clinical observations. And there is little for the orthodox Jewish family in Hebrew or Yiddish or in a style that respects the modesty of the readers offering information from an orthodox Jewish perspective.

3) To come to a decision to keep a baby with Down syndrome is a stressful, tiring and very emotional life event. It is a diagnosis that evokes fear and shock and it is not easily overcome.

How tragic is a family facing such a situation. The parents do not wish to reject the baby. But rather than deal with all of the unknowns inherent in the syndrome they make a life long decision based upon myth.

To condemn a family to a life apart from their own flesh and blood simply because the parents at that moment could not properly process the available information seems severe. Because they are not able to absorb the full ramification of their decision at that moment when contrasted against the backdrop of the confusion of feelings that could not be fully processed defies logic.

Many of the parents who do take their babies home may not come to terms with either the child or the syndrome. Maybe not for a long time or maybe never.

That is to say that many parents are able to eventually accept their child however they cannot accept the child’s condition; or, even with all of the possible support, advice, information and help, they are never able to quite get beyond the handicap in order to see the child.

Unfortunately by the time the parents overcome their personal, financial, and religious bias(es) directed at the baby with Down syndrome a significant period of time may have elapsed.

The child with Down syndrome develops slower than their siblings do. Even so it is simply not possible to predict with any accuracy any persons lifetime potential and especially not a newborn baby with Down syndrome.

Most parents have at least one of the following three fundamental instinctive feelings when confronting their newborn with Down syndrome;

1) A feeling of protectiveness toward their helpless baby who is even more vulnerable than a baby born without the syndrome.

2) A parallel revulsion at the thought of a baby born with an abnormality and,

3) Denial, which is seen via the ordering of repeated chromosomal studies, follow up studies, can continual questioning of the diagnostic process.

Even though these feelings of revulsion and denial are quite normal and common, taking into consideration the circumstance, it is the acceptance and expression of those feelings that is not so common.

A mother may feel repulsed by her child and yet not talk about this very normal initial reaction to this highly unusual series of life events. This because there is a fear that it is not a normal feeling.

This chain of events creates an internal conflict that will only compound her already growing sense of confusion and inadequacy.

There are several mothers (fathers as well) who have accepted their children, who have admitted to me that at one point during this adjustment process they had wished that their baby were dead.

Now that kind of thinking is disturbing enough under any circumstance. So imagine how much more mentally disruptive it is for a mother to admit that she had detailed dreams as to how to best accomplish this end.

By not coping with stress properly the result is often to create more stress.

These same mothers with the passage of time (and some professional intervention) have openly admitted that they once had these thoughts and feelings and that they now understood that these were “quite normal reactions.”

They will further explain that they now can see that they were not bad people for having these thoughts and that they were able to follow their feelings of inadequacy and acceptance and deal with them.

Many parents ignorantly believe that all disabled children are the same. They are obviously not.

By researching Down syndrome and other handicaps a parent increases the opportunity to properly participate in the child’s growth. This investigating can and will reduce the misunderstandings, the uncertainties, and the inconsistencies that disrupt proper developmental decision making on behalf of the child.

Personal development is not a regular incremental process that occurs in equal measure in one and all. It is rather a series of stops and starts. Each child’s genetic code has a great influence on how he/she will develop. It is not then, only a matter of experience and teaching.

When the parents of a child with Down syndrome, who is living at home, receive counseling and the child receives the appropriate intervention and stimulation, then it is possible that there was significant progress.

Why couldn’t a child with Down syndrome, with a limited mental age be gradually reintroduced into his or her own family without any significant negative affect? Isn’t that what happens when a child is abducted or kidnaped or mistakenly placed in the wrong family?

The child is returned to the natural family.

Well it is most certainly the intent of the biological family at the time of the initial placement that would dictate the terms of such a situation. For then and only then would the child be properly prepared for a reuniting.

And secondly the amount of time that had lapsed between the initial separation and the desire for reunification is a very significant factor.

Well the process has begun. The barriers are beginning to crack. They have not in fact crumbled however they are beginning to crack.

As more schools begin to accept children and implement a Torah based classroom education for all children then we will see a communal wide benefit.

We need to increase the time spent developing and influencing character, personality, and tenacity to complete whatever is begun while simultaneously letting go of the idea that every child in order to succeed needs to be a genius with unlimited talent and the finest education that money can buy.

How many geniuses are so eccentric and unwilling to fully participate as they find comfort in a certain level of failure? Or how many exceptionally talented young people are there who can not make up their minds as to what it is they would like to do and which of their many talents they would like to focus? And finally how many over educated – unemployed people do we know?

The goal of an education is to build a solid foundation to fully participate in the life of this world. So isn’t it a better approach to have children and raise them to have a pleasant personality, good character traits, and the tenacity to complete whatever they begin?

This way we are not disappointed that our children are not geniuses, exceptionally talented, or that the level of education maybe didn’t meet up to our unrealistic expectations.

Treatment and care at home has continued to improve in quality and our schools and yeshivas at last must now once and for all step forward and accept the responsibility to educate all of our children who have gone through so much.

Now that we are beginning to keep our children at home we must face the challenge of educating them properly. No short cuts, no corners cut but rather a full acceptance of educational responsibility.

Maybe in the past there was a lack of understanding as to how to properly educate children with Down syndrome but today it is well known and understood.

We as a community have certainly had enough time to contemplate on the appropriateness of accepting special needs children into our schools as full equal student participants. Down syndrome is not contagious and there is no stigma to having a child in the school or the classroom.

It does not negatively reflect upon any of the other students in the classroom. And the fact that you personally cannot accept these realities has nothing to do with the fact that the children themselves are not in any way negatively impacted. Not socially, psychologically, not educationally.

We have all faced a myriad of personal and family challenges and yet this all boils down to, “these children who have perfect neshamas are searching out a way to take their rightful places in the Torah educational system.”

By our rejecting the old realities we can embrace change, hope and acceptance. This then is the challenge facing the community at large.

I was a 21 year old not yet college graduate who had ascended to the position of Assistant Administrator of this facility in a short 2 ½ years. The question is how?

There are two ways of viewing this ascent. The first is that I was some kind of administrative prodigy who was so skilled and insightful that this was the obvious choice and the alternative and much more realistic choice was that there simply wasn’t an interest level in people applying for these positions because much of the field was unregulated and the need to fill these positions was merely a selection process that was simply put “the best of the rest.”

When I first began working in the facility 2 ½ years earlier during the first two weeks on the job I made it a point to make daily rounds of the entire building and the various programs. This I did in order to familiarize myself with the facility and the various activities as well as to introduce myself to the various staffs and faculties.

On the very first evening that I was working in the facility I attended a very lively birthday party for a little girl named Debbie. Debbie, who was six years old, had Down syndrome and was a bright little girl who seemed to illuminate the entire surroundings like life itself in her joy of the moment.

Debbie was abandoned at birth by her birth parents and had been raised in institutions until she was five and then placed in this facility.

Debbie made me feel right at home at her party and I remained there for quite some time enjoying the singing and the snacks and the opening of the gifts that were purchased by the staff and her fellow residents.

After the party I continued on my rounds until the end of the shift.

One evening about two weeks later I was making new rounds that this time brought me to the swimming area. This was an indoor pool that was approximately 40 feet in length and about 25 feet wide and 4 feet deep everywhere.

As I entered the pool area I was greeted by shouting and laughter and I observed in excess of 50 children in the pool itself. There was one lifeguard on duty who was sitting casually pool side as the cadre of kids frolicked in the water.

The noise was deafening and the fun was unbounded as I called out to the lifeguard inquiring, “what are the regulations as to the number of children allowed in the pool at a time?”

The lifeguard responded with a casual shrug indicating that he had no idea. He then called out to me that there actually were no rules on the subject as far as he knew.

I called back to him to blow his whistle and to evacuate the pool.

“Sachel,” I thought should at least regulate these kinds of activities. And to have this number of mentally and physically handicapped children in the pool under limited supervision was not prudent.

As the children exited the pool I noticed an undistinguishable cluster of color reflecting from the bottom of the pool on my side. Having served as a lifeguard myself for five years I instinctively jumped into the water and pulled out what immediately became clear to me to be a child.

What took place in the next few moments would change my life forever.

As I pulled the child from the water I had no idea how much time had passed until I noticed the swirl of color. I called out to the lifeguard on duty to call the fire department and I immediately commenced mouth to mouth while simultaneously turning the listless little body trying to drain the water out of the stomach and lungs.

As I was beginning the second set of mouth to mouth series I realized that this little lifeless child in my care was none other than little Debbie the orphan whose birthday I had celebrated just two weeks earlier.

I was in a panic and had her breathing several times as the fire department arrived. They told me to continue administering mouth to mouth and as we entered the ambulance they eventually took over applying an oxygen mask.

As I held Debbie on my lap all the way to the hospital no one was talking and the silence was deafening yet I was lost in my own thoughts.

As the rear doors burst open and they ran with Debbie into the emergency room I just stood there soaking wet in all my clothes wondering what was going on. I approached one of the ER nurses to inquire as to Debbie’s condition and as she attempted to respond to me all she could do was cry and as the tears flowed down her cheeks all of a sudden I understood.

Debbie had actually died pool side prior to entering the ambulance however a credit to the fire department they tried everything to revive her.

As I turned and left the hospital devastated and exhausted I was completely lost.

Since Debbie was given away at birth her biological parents never found out of her passing or that she was buried more than 45 years ago.

Our existence is the one thing which is good in itself. Hashem gives us that one good thing, life itself. Sure everything is subject to accidents, illnesses, disabilities, and handicaps but we all share one universal handicap and that is the handicap of mortality.

After all even little Debbie the forlorn little smile that lit up the world around her was a gift from Hashem.

Our daughter Suri, who was born with Down syndrome was born with an atrial septal defect (ASD), and the most beautiful blue almond shaped eyes. Suri was able to recite all of the proper brochas over food, kiss the mazuzah on the door when entering or leaving a room, would not eat bread without washing first, and knew that Hashem was everywhere all before she reached the age of five.

Suri’s older brother Zalman once came into the room when he was age 9 and Suri was four and proclaimed that his sister’s eyes were not really like those oriental eyes but rather he observed that her eyes were more like rainbows. We were not sure what he was able to observe beyond the epicanthal folds.

All these years later it is easy to see what Zalman was able to observe all those years ago. I am certain that hidden deep behind those “rainbow shaped eyes” is the full rich hue of acceptance, kindness, and a complete expression of Ahavas Yisroel.

As we set out on the journey of making sense of the birth and early intervention we were also confronted with a myriad of special educational philosophies.

We realized early on that there were many opportunities for success and an equal number of potential disappointments.

For example almost every child with Down syndrome is delayed in their early development skills.

In Suri’s case it was delayed standing and walking, very delayed speech, open heart surgery, slow potty training and keeping up with pediatrician appointments for a variety of common childhood ailments.

The lack of encouragement that we faced on the part of the medical community is not as a result of mean spirited people of medicine it is rather a lack of understanding and knowledge about two basic areas of syndromes. Facts and Feelings.

As a new parent of a baby born with Down syndrome there is a sense of isolation and a need for reassurance and a bit of warmth.

Almost all physicians who spend up to 3 years in medical school, a one year internship, and up to three years in a residency only learn about one and a half to two hours about disability, syndrome, and handicap. Hardly the substance of an expert opinion.

A word of caution here. If your physician cannot say “I’m not sure” or “I really don’t know let me look it up” then you need to find another doctor. The exception is of course a practitioner who specializes in syndrome, disability, and handicap.

When discussing human educational developmental objectives and changes that are necessary for continued success keep in mind that a mind is like a parachute they only work when they are open.

In 1945 Professor Reuven Feuerstein developed a dynamic learning assessment that was initially used to assess recent arrivals to the land of Israel who had survived the Holocaust. These tests were especially unique in that they were absent any cultural or language bias. This mediated method of evaluation has proven remarkably adaptable and successfully demonstrates not merely scores of learning disabled and mentally retarded but rather observes how a child learns and acquires knowledge.

When John Langdon Down made his first observations as to the original 12 characteristics of the syndrome bearing his name it was obvious that there were more to come. Today most authorities have identified more than sixty clinical signs and several more recent studies have identified ninety and one Polish study identified over one hundred twenty. (Cunningham)

Today as we explore some of these characteristics we find universally that females are missing the twelfth rib and almost all people with the syndrome have a mouth that is disproportionately small, as is the skull in general, this accounts for the normal size tongue appearing to be oversized.

The tongue can be controlled with early intervention.

The air sinuses are usually underdeveloped causing frequent sinus blockages. The children will resort to breathing through their mouths and this is a commonly observable feature.

As a result of the small skull stature the ear canals are also narrow and this leads to frequent ear infections and a high incidence of hearing loss. (IBID)

The variety of therapies available to children who have Down syndrome is astounding. In the absence of solid medical research parents are vulnerable. Many parents will hear what they want to hear. They are searching for a quick fix and are exploited by unscrupulous practitioners promising a panacea placebo as a treatment.

Many new ideas that have been supported by studies should not however be overlooked. Parents need to make informed decisions.

Amongst the therapies that are legitimate medical practice there is exploitive unsupported treatments.

One example of this is the thyroid treatments that are often recommended and the unscrupulous use of thyroid treatment protocols that are not based upon diagnosis or medical fact.

Of all of the genetic disorders associated with mental delay or retardation, Down syndrome has the largest incidence. Yet over the past twenty five years research supports, “that children raised at home can best reach their full potential and function in society with a greater degree of independence. Parental love, care and educational support, such as an early intervention program have a direct relationship to the degree that the person with Down syndrome achieves his/her potential.” (National Down Syndrome Congress, 1994)

There are approximately 10 million persons worldwide who have Down syndrome and eighty percent of them reach or surpass age 55. (Down Syndrome News, 1993)

Life has value and meaning only when a Torah standard is applied. Otherwise all else is a synthetic search for self satisfaction. This alternative set of objectives can only result in frustration.

Rabbi Jonathan Sacks, the Chief Rabbi of England observed that, “Hashem has a special love for neshamas who never tasted sin, who never mature to a level of temptation or corruption.”

In the middle of the 1860’s the English physician named John Langdon Down identified the syndrome that now bears his name. He originally identified the condition as mongolism because he saw in the children’s facial features similarities that he thought very closely resembled those of the warriors of Mongolia. (Cunningham, C, Down Syndrome, 1988)

Dr. Down believed that they were a throwback to a more primitive racial type.

How might the syndrome be known today had Dr. Down identified some of the character or personality traits of this syndrome rather than only the physical external traits?

Some of the suggestions that I will offer include but should certainly not be limited to, “Huggers syndrome” “Gifted with Kindness syndrome” or “Gentle Neshama syndrome.”

These are offered as alternatives to the original label of Mongoloid Idiot.

As mentioned earlier John Langdon Down was related by marriage to Charles Darwin. It is obvious that Darwin’s theories of evolution were already known when, in 1866, Down put forth his contribution to the condition that today bears his name yet at that time was labeled mongolism. IBID

Fifty eight years later in 1924, an English publication “The Mongol in Our Midst” argues that the condition was a throw back to the Orang-utan. Most likely the roots of such thought go back to the original research publications of Dr. Down under the influence of Darwin.

Melech Chezkia became ill and received a visit from Yishayahu haNovie.

Yishayahu informed Melech Chezkia that he will soon die. Upon hearing this Melech Chezkia protested vehemently, and demanded to know what was the reason. “Because you have chosen not to have children,” answered Yishayahu. “But I have had a vision that my children will be born disabled and will bring Yisroel to the brink of moral ruin,” further protested Melech Chezkia.

“It is not our role to question the secrets of Hashem. We must have children. We must ry and leave the mysteries of existence up to Hashem,” answered Yishayahu.

So it was that Melech Chezkia did indeed begin having the children that were to be born handicapped and disabled. And as he did his illnesses improved and were eventually gone.

Wouldn’t it be nice to say that everything that happens in this world happens as we want it to? Yet that would eliminate our need to do what we are suppose to do in favor of self gratification.

Research in Down syndrome is making significant strides in the full identification of the genetic material found on the extra chromosome of persons who have trisomy 21. Scientists now believe that there will be a cure for Down syndrome and its related impairments in the future.(National Down Syndrome Congress, New York, 1994)

These 22 basic chromosomes combine with a 23^rd autosome that determines gender to form a fully developed human being.

This combination of 22 chromosomes contributed by the father and 22 chromosomes contributed by the mother total 44 chromosomes. Now taking into consideration the contribution by both parents to decide the gender, the extra two autosomes now bring the total for a normal healthy baby to 46 overall chromosomes.

Now each of those original 22 pairs of chromosomes become a specific identifiable number of pairs. So thus we will have the first pair of chromosomes, the second pair and so on.

If we arrive at the 21^st pair of chromosomes and we find not simply a pair but triplets this is known as a trisomy. And for the sake of our discussion here this is also known as Down syndrome or Trisomy 21.

When G-d created the world He used the Torah as the blueprint for all of creation. The letters of the Torah are the twenty two basic letters of the Alef Bais used 604,000 times in combinations and permutations that allude to the Infinite Being that is known as the Creator and His works.

In the holy Tetragram of the holy name of HaShem (Yud and Heh and Vov and the final Heh) the total of this name is 26. This is arrived at by using the values of the letters as they are assigned and commonly used in the Hebrew language.

Now since the letter Heh is equivalent to the number five. So when this final letter of the Tetragram of the name of Havayah is removed or not included it is then referred to as the incomplete name. It also totals 21.

This then is an allusion to the incomplete tzadik referenced earlier in this blog.

It is certainly no coincidence that there are twenty two basic chromosomes that each parent contributes to the formation of the infant. These chromosomes determine who the baby will be and the combinations are what gives the child his or her unique qualities.

These were all scientifically sanctioned, vile experiments that were perpetrated upon these hapless and helpless and very vulnerable little victims and it still keeps the moral amongst us awake at night.

During this dark period in Jewish history (and world history) countless parents had to make impossible split-second decisions about where and how to place and hide their dear beloved children. How to keep them out of harms way. These parents agonized as to whether or not to leave their normal, healthy children and babies with the non-Jewish families who offered their cellars, forests, and hiding places or to chance the transports to the east as they were known. Or as another option simply keep these children by their sides and take their chances together.

Worse than being a Jew to the Nazis was being a Jew with Down syndrome.

Even Hitler, may he rot, and may his name forever be blotted out, could not eliminate Down syndrome, mental illness or physical handicap. In his most grandiose, feeble attemps at racial and societal purification he was not even close to successful.

So today and everyday, we Jews must remain ever vigil. Every time we try to give the appearance of a pure family lineage, by giving away what the Aibishter has given us we are succeeding where others have failed.

To place a natural member of our family with another family is to deny that baby the opportunity to connect with their own family. This also prevents the child from fully participating in the growing up process of a close-knit family.

This also prevents the other members of the family from benefitting from the special needs child and his presence in the family unit.

We do not need to make these decisions in a split second any longer. We no longer need to break apart a family for the sake of saving the other members of the family from ruin.

We have so many other options available to us that we need to consider them all before making a life-long choice.

Further I must add here that if someone found that they had to make the decision to give a child away I am not saying that those people are bad or evil for the choice they made. I am saying that these are no longer the only choices that we have and that there are so many other ways in which we should explore keeping families together.

What is troubling is the split-second, automatic rejectionism many families opt for. It is this unrealistic expectation on the part of the parents that this newborn baby’s unknown future will somehow disrupt the other siblings from eventually finding suitable marriages.

This type of thinking is the source of a very selfish, single minded erroneous think.

Even the doctors of the Third Reich were exceedingly cautious as they became involved in carrying out this massive death edict.

They began by referring to the entire cleansing as a “scientific project.” Certainly in the light of the historical spotlight we see these powerful death doctors with grater concern for their reputations than for the weak slaves of the system seemingly with no voice and certainly no future, their patients.

“First they came for the socialists, and I did not speak our because I was not a socialist. Next they came for the union members, and I did not speak out because I did not belong to the union. Then they came for the Jews and again I did not speak out because I was not a Jew, and finally they came for me but there was no one left to speak for me.”

The above quote is attributed to a German minister who lived through the Holocaust as a prisoner in Dachau and who recognized the significance of descent and decline.

Who is left today to advocate for these children who are born with Down syndrome? Future parents must be taught tolerance and human potential long before they become parents. They must continue to remain vigilant against intentionally placing themselves in harms way.

We never pray for a problem, yet we must build up our reservoir of power to properly and completely prepare ourselves to accept whatever comes to us. And to those not affected by a given situation they must also properly prepare themselves to lend a useful hand to a friend, should that friend be challenged in any way. Not just one child, but the whole world depends upon these efforts.

One of the major problems in the frum world is that quite often the rabbinical advisors and family who are involved do not fully understand the differences in the potential for success in the lives infants who have syndromes or disabilities.

I met a man who was a friend of my father. He was in his seventies. He heard that I was going to London to make a key note presentation on behalf of an organization. He then informed me that he had a sister who has Down syndrome and who is a resident in one of the facilities operated by that organization. He asked me to look her up and give her his regards which I was delighted to agree to do.

When I finally located this man’s sister in the home in which she resided, I realized for the first time that many diagnoses about relatives are self made and erroneous at that.

This mans’ sister was most certainly retarded however she did not have Down syndrome. She was a lovely young lady who certainly remembered who her brother was and she was great full for the visit, and very cordial throughout my entire visit with her, yet she did not have Trisomy 21.

When I returned to give regards to her brother I also informed him of his mistake. He responded with, “well you know it’s the same thing.”

Well it is not the same thing and the actual diagnosis can and often does mean different interventions, treatments, and placements.

One morning I received a phone call from a man who introduced himself as Dovid. Dovid wanted to know if a baby with Down syndrome had a neshama. He continued his inquiry by asking if it is possible that they only have a nefesh.

The question was not designed to upset me and yet for some reason it did.

I thought for a moment and immediately replied, “what did you have a boy or a girl?”

He then broke down and told me that he was confused and needed some answers.

“We are all confused and looking for answers,” I answered.

The only way we become comfortable in this world is to accept everything we are given with simcha. We do, however, not always do so. As a result we have greater and greater expectations.

It is indeed all of our un-lived up to expectations that are the source of our disappointments.

The isolation and loneliness are often deafening and the need for answers compelling.

In the days that followed Dovid and I would talk in depth about the differences between a nefesh and a neshama.

The reason that his question posed such a negative response in me and why Dovid was asking it in the first place is that the on the level of a soul the nefesh is the lowest of all of the five levels.

A rock that is in this world has a nefesh since everything that exists in this world has to have its life source from the One source of everything. So if Dovid could establish that this infant had a soul on the level of a rock it would be so much easier to disconnect.

Dovid and I spoke many times on the telephone over the course of the next several months until one day he told me that he and his wife had decided to keep the child and that he would now need to move on.

Many years later I was presenting at a venue with many families who had children who have Down syndrome when this pleasant young man came up to me and asked me if I remembered him to which I responded, ” Dovid, how could I possibly forget you?”

We laughed about our earlier discussions and he told me how beautiful his son was and how much he had come to love and appreciate him.

Dovid was now asking questions about milestones and achievements and expectations. He had now accepted the fact that his child has a nefesh, ruach, neshama, chaya and yechida and only wanted to know how far will he go and how great can he become.