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Is Raising A Down Syndrome Child a Chesed Shel Emes?

One of our most beautiful mitzvos is burying the dead, This mitzva is called a 'chesed shel emes' because it is a merit that can never be repaid by the recipient of this act. Plainly speaking, it means, doing your utmost for somebody, with the intention of never experiencing the gratification of that individual returning the favor.

So, is raining a DS child a 'chesed shel emes'? Are we doing our utmost for our DS child only because of our parental obligation? Are we taking care of their every need in a very mechanical, pained way just because we gave birth to them? Are we just doing and doing chesed unto them with no naches, gratification and joy in return?

Let us take a moment to reflect on our perception and expectation of the word "naches". It is very unfortunate that we sometimes get carried away by our day to day burdens (and sometimes aggravations) of raising our families and we fail to notice and feel the naches that truly surrounds us in our homes on a daily basis.

I recently attended a marvelous lecture by Rabbi Shimshon Pincus h"b in which he posed the following question. Why is this generation so stressed out?" His answer was a wonderful mind opener. I will not put it in quotes because I don't recall it word for word; I will just try to get his message across. He said that our generation is obsessed with the "future". We son't live for now, for today; we live for the then, the tomorrow. Everything we are doing has an ultimate goal for the future, whether intentional or unintentional.

So it is in our community, that that light at the end of the tunnel, our ultimate naches on life, is marrying off our children and seeing them continue the family bloodline. Everything that they do today, everything that they are today, is supposed to conform to that picture perfect image of excellent shidduch material. Everything positive about them gets celebrated under a public spotlight with a large halo of naches and ego surrounding it. Everything negative or problematic about them gets very discreetly shoved into a dared closet- a Pandora's box.

Surely, one would then suppose that raising a DS child is a chesed shel emes? Is this child the perfect marriage candidate? Will he/she return our trials and tribulations of raising him/her by doing the "bomb" shidduch, and ultimately have the most lavish wedding that the family has ever attended? The answer is NO to every single question hereby posed, especially the first one.

No, at this stage of the game in early 1995 we don't know what our DS child's future holds in terms of marriage. No, there might not be the bomb shidduch, the lavish wedding with exotic flowers, energetic photographers and beaming mechutanim.

Therefore, we parents remove our telescopic glasses and we see in our DS children the joy and naches of the here and now. And, boy oh boy, is there naches to be reaped, Since the day my son was born I was always besieged with the "Official DS Data" that "these" children are so warm and loving. I thought of it more as a consolation than a personality trait in my child that will eventually melt my heart. No amount of pep talk could have prepared me for the utter joy, exhilaration, naches and a sense of accomplishment that I derive from this child, It is with good reason that he is classified as a "special child". The daily naches, the humor and laughter that permeate our home now, today, erase all skeptical thoughts about the future. the sensitivity and outreach in all family members,neighbors, and friends are overwhelming. The heavenly intervention or "hashgacha pratis" is apparent in every aspect of raising this little angel and our awareness of this has strengthened us to forge on even during difficult times.

So, back to our original question! Is raising a DS child a chessed shel emes? ABSOLUTELY NO!


 

This article first appeared in issue 1 of DSAU

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Click here to see other articles in issue 1 of Down Syndrome Amongst Us


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