Tears of Pain and Joy
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Tears of Pain and Joy

Tears of Pain and Joy

When our daughter was born, the feelings of joy were suddenly interrupted with the doctor's statement that she had Down's syndrome and possibly a severe congenital heart defect.

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In the autumn of 1987, my wife gave birth to Sheryl, a little sister to our 5-month-old son. Excitement, euphoria, happiness and joy -- the miracle of birth. Yet, those feelings were suddenly interrupted (I use that word purposely) with the doctor's statement that our precious daughter had Down's syndrome and possibly a severe congenital heart defect.

Indeed, as a parent of a child with Down's syndrome, the struggles and challenges, fears and frustrations, center around the physical infirmities that our child must overcome or learn to live with, before she can even attempt to reach the classroom or playground. Perseverance, commitment, and a unique temperament are critical to parent and child, in order to cope with the higher incidence of ear infections, eating disorders, and often life-threatening heart defects. These concerns and difficulties deflect the parents' attention from other less apparent problems -- low muscle tone, late physical development and mental retardation.

There is pain in knowing our child will always struggle and still never attain what most people take for granted. But the pain is more intense when our child lies at the altar of an operating room or intensive care unit and we wait for God to say: "Do not stretch out your hand to the child," so to speak, to grant her survival.

GROPING FOR UNDERSTANDING

Down's syndrome (trisomy 21) is a genetic accident; indeed, medical science cannot identify a cause or reason why any specific child is born with Down's syndrome. Accordingly, more than other disorders, it is one of those rare situations that points directly to divine intervention. God decided that this child should be born with this specific handicap, and God decided that our family is where this child is destined to be.

More than other disorders, Down's syndrome is one of those rare situations that points directly to divine intervention.

The child comes to this world with its own soul and its own mission for reasons we do not know. At the same time, God surely has complex plans, which often call for creating specific familial and community relationships, in order to test and purify each of us.

We lack clarity of vision, a prophecy that can inform us of what God has in mind, and what path we are to follow to best serve him. Instead, God sends us directions by way of life's "turn of events" which, with the help of the interpretation and guidance of our rabbinic leaders, can lead us to our eventual goal -- a goal we do not fully recognize until the trip is over.

Our family portrait obviously required a child with Down's syndrome. If that child is removed from the picture, then the entire picture and all those in it cannot accurately reflect what God had intended. I am a different person, as is each person who has been touched by a child with Down's syndrome. That is what God intended. There could be no other way. As the Chazon Ish wrote, you must have the trust and realization that everything that happens is determined by a divine providence, decided by a loving Father. There is no faith or chance. Trust in God is living with this realization.

A couple in their early 20s does not give much thought to an event like this occurring to them; accordingly, one can not be prepared with any answers. Yet, God provides the strength. He does not guarantee that we will be successful in raising such a child. He does guarantee that we could be successful, by providing us with the potential to properly manage the situation.

NEGOTIATING THE ROUGH SPOTS

In attaining the achievements, we pass through a series of rough spots:

"Can I love this child or grandchild as I do the others?"

Human love transcends the experience and allows us to develop an all-encompassing bond with this child.

The question itself presents fear and pain. The answer lies in seeing and holding the child. Love of parent to child and child to parent quickly replaces the feelings of doubt and aspects of rejection. Human love transcends the experience and allows us to develop an all-encompassing bond with this child, as with any child, a bond that cannot be severed, despite moments of difficulty. To hold and to care for; positive emotions surface and continue to assert control.

We stand outside the operating room of Children's Hospital, our daughter undergoing open-heart surgery, and we realize through the heart throbbing tears and desperate prayers, that the love is forever present and that the parent-child attachment cannot be severed nor described. Through a most trying experience, God has reassured us of the love and commitment that He knew we had -- and we, as human beings, needed to recognize.

GRANDPARENTS, TOO

"This cannot be happening to me, or my child, or my grandchild."

Parents and grandparents awake together to face God's complex world as never before experienced. Perhaps we previously deluded ourselves that life presents such situations only to others. Perhaps we refuse to accept imperfections or human limitations.

To a great extent, family members take their lead from the parents of handicapped child. When the grandparent sees strength and stability in the parents, he, too, develops the courage and guidance necessary in such a situation.

There are also moments, particularly early on, when the pain is so great that we lose self-control and ask, "Why me?" God is surely aware of our belief and trust despite the confrontation.

We face challenges and, of course, our reactions are human. God does not demand a uniform response. We are tested because we're human. Because we're human, we act individually. Some people grapple alone with the pain, questions and fears, and define meaning and strength on their own. Others find comfort, encouragement and answers by opening themselves and sharing with others...

Some will cry longer. Others will question harder...

ADVANCING TOWARD THE FUTURE

A person with Down's syndrome is a complete Jew and is obligated as all people to serve God to his or her full potential... Having a handicap does not diminish a person's human status. To the contrary, each soul is placed on this earth to perfect itself; a soul placed in the body with limited faculties obviously has fewer weaknesses requiring perfection. The Chazon Ish would stand before those children with limited mental capacity and note that they are particularly holy and pure.

Tears emanate from the pain and frustration; tears emanate from joy and happiness.

Through it all, one continues to live with dichotomies. Tears emanate from the pain and frustration; tears emanate from joy and happiness. Tears flow from being overwhelmed by the moment; tears flow from the love and concern of others. Helping hands of family and friends at a difficult time are so important -- their just being there, suffering in our difficult moments, and rejoicing in our happiness, dreams and hopes. Friends who not only presented a shoulder to cry on, but who cry themselves.

And some tears are shed in intense moments of prayer -- alone, man and God.

We seek answers to explain the past; God continues to provide solutions for the future. A world of sophisticated medicine and special education continually affirms the hand of God in His greatness on earth, and we benefit from the selfless dedication showered on individuals -- indeed, our daughter who but a few years ago society ignored.

Sheryl provides us with a continuous lesson in true parenting. It is difficult, as a parent, to live vicariously through a child with Down's syndrome, to dream that she will live out your unfulfilled dreams and carry on your hopes after you have passed on. The joy is in the achievement, the communication -- at whatever level -- of each child as himself or herself. The greatest proof of our humanity is in the non-comparing love we can show for our children and for each other.

At the same time, she provides abundant love in all directions. She showers us with more satisfaction, more love and more personal growth than we could ever hope to instill in her. As King David wrote in Psalms, "The stone which the builder rejected has become the cornerstone."

Excerpted with permission from "TIMELESS PARENTING" - a compilation of essays on raising children in troubled times. Published by ArtScroll/Mesorah Publications Ltd., Brooklyn, NY.
http://www.artscroll.com

Published: July 27, 2002


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Visitor Comments: 7

(7) Anonymous, April 10, 2005 12:00 AM

Beautiful Article

I too have a daughter with Down Syndrome. This article beautifully dscribes the joy and pain of bringing up a child with a disability.

(6) Lisa Leonard, August 30, 2002 12:00 AM

Wonderful perspective

As another parent of a child born with a genetic disability,(Fragile X) I know the confusion and sometimes anger you feel. With time you stop asking Why me?,Why my son? and move on with the daily business of living and raising this special child. It is often said that what G-D takes with one hand, is given back with the other hand. It is with good reason these kids are called "Special," because they have something so unique deep in their souls, you know that they truely have been touched by G-D. My son has almost no verbal communication, yet he expresses his passions and unending love without any trouble. What you get from him is so sincere, so heartfelt, you know that G-D has a special intent for him. His path to find that may be a little harder than for some, but what he finds at the end of the journey will be worth the struggle.

As his mother I now see that I have been blessed with the honor, albeit a difficult one, with helping my son find his way along that path. I never stop praying for the strength to help him reach his fullest potential and become everything that G-D intends. With community support and a loving family and faith, we have moved from "why me?" to "why not me?" and we are doing pretty good.

(5) Rachel Peterman, Esq., August 1, 2002 12:00 AM

Your shared pain transformed me...

twenty-ish couples accepting their child with love, gratitude, and faith, I suddenly realized that it was entirely selfish on my part to only consider what I'd always considered to be "in the best interest of the child".

(4) Anonymous, July 31, 2002 12:00 AM

Touching

Your story was very touching. Because someone is born with or has a handicap makes them no different.
Yours is a sad story, but a happy one because there was so much love, faith, and courage to give.

(3) chana miriam, July 30, 2002 12:00 AM

blessings and gods will

last week when i was in our local kosher butcher, he and i were having a conversation about our children with disabilities, and all the sudden, he asked me if i thought my life might have been better if my son had not been born with autism. did i think that the quality of my life was better with or without autism?

i had to answer that my life was no doubt happier and more healthy than it would have been without autism. if i had a choice, my son would not have had any developmental issues, but i did not and he does, and we deal with it.

acceptance of the situation means everything to me. acceptance is not endorsement, but it sure makes life saner when i am not fighting g-ds will. gods will is what it is, whether i like it or not. i accept it.

so in the meantime, in the three years since he was diagnosed, this is how my life is better....i am a better parent, mother, sister, daughter and wife. i am more patient, i rarely raise my voice and i celebrate every little victory. i never thought i could be so joyous at hearing the words ' your son's
speech tests 'average' on standardized speech tests.'

the littlest things are so awesome now. i think i might have been the kind of parent who took things for granted had this not happened.

in the meantime, it is not like we dont have challenges...we do, we have many. but having learned to have an attitude of gratitude to g-d makes all the difference for me.

i wonder if i might have learned this without this incredible challenge in our lives...maybe or maybe not, but the reality is, i did learn and it was because of this, and my life is so much happier than i was before because my challenges made me stronger. thank you g-d.

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