What Should We Learn from Sara and Her Son Raphael Gershom ben Sara?
What Should We Learn from Sara and Her Son Raphael Gershom ben Sara
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"What Should We Learn From Sara and Her Son Raphael Gershom ben Sara?"
"I don't wish to be flooded with attention," Sandy aka "Sara" began cautiously, "but I do want to educate people to the fact that children like my son Rich (aka "Raphael Gershom ben Sara") exist, and that looking upon him is not so painful as many fear."
Sandy has had a lot of time to think about this. "I understand it is difficult for some, and I get that, but if you overcome your fear, your guilt-whatever prevents you from acknowledging my son's and my reality, you'll discover we're just like you. We laugh, smile, cry, eat, drink, succeed, fail, pray "
May I please have your attention, dear readers, especially: new parents, parents to be, veteran parents? If your children are healthy and your parenting experience mainstream, thank G-d. I needn't tell you what an enormous blessing healthy children are.
Sandy is one of the unsung heroines of the parenting world, a bold and articulate advocate who relates a different story from a parent whoseexperience is from the other side of the fence.
Twenty-year old Rich has been severely disabled from birth with "undiagnosed whitecell matter" disease, an "unnamedcondition in a class similat to MS" which has left him confined to a reclining wheelchair for every one of the seven thousand, three hundred days of his life.
Did you get that? Rich has spent every single one of his seven thousand, three hundred days of his life in a wheelchair. As a consequence of her maternal devotion, Sandy has become the personification of "absolute unconditional parental love".
"We're not looking to guilt anybody out about this," she continued, "nor do we seek anybody's friendship if it does not come from the heart. A 'Shabbat shalom' and an acknowledgment my son is a personwhose mother is right behind him would be great for starters," Sandy smiled pleasantly.
"Know what I really need?" Her smile disappeared. "I need and it's not me only but other parents out there who are raising children with severe disabilities like Rich's, we need volunteer assistance, preferably male, who have been trained in the proper care of children like Rich," Sandy paused, which gave me time to catch up on my note taking.
"It's no easy thing lifting Rich, even when he was much younger-you do know that Rich is completely immobile, don't you?" As a matter of fact,I did know that but this was a mother's chance to plead her case. "And as he has grown, it has become more and more difficult."
You've seen them in Skokie, haven't you?
You might find the sight of a mother who has paid with her health for the cost of her own sacrifice rather disconcerting. As a result of lifting Rich all these years, Sandy'spre-existing scoliosis has only worsened. "Naturally, pushingRich's wheelchair for all these year certainly hasn't helped my posture any," Sandy added,
Does that stop her or slow her down? The Energizer Bunny could take a few lessons. Go figure, a mother's love and strength! Try to measure it.
"A Closer Look"
What comes to mind when you envisage "Mom"?
Love, comfort, cold milk and cookies, hot chocolate, warmth, clean laundry, great cooking, right? There must be a "gazillion" more word associations for "Mom", but I think the most important of all is: "Mom, who bore me".
I suppose that is what underlies the Jewish custom of making a "misheberach", a prayer on behalf of a sick person (that he/she should experience a speedy and complete recovery). Called by his/her Hebrew name as the son or daughter of his/her mother, as in "Raphael Gershom ben Sara" ("Raphael Gershom" is Rich's Hebrew name; "ben" means "son" and "Sara" is Sandy's Hebrew name), it makes a great deal of sense, doesn't it? After all, who cared for you when you were sick, made chicken soup and sat with you at your bedside until your fever broke?
For Sandy, her faith in the "One and Only G-d" who challenges but does not forsake her serves as the life preserver that has enabled her to weather the gale winds of her stormy years as a parent.
"Sure I have faith. You should see my "Tehillim" (Book of Psalms). Pretty worn out."
"Have You Ever "
"What if, G-d forbid,any of uswere to have a child with a catastrophic disability like the one from which Rich suffers? What would be my response? Yours?Would we bestrong enough physically, emotionally and spiritually?"
Have you ever thought about it? Our first response is to turn away in horror at the suggestion of even an extremely remote possibility: "G-d forbid! Bite your tongue! It shouldn't happen to my worst enemy!" But what if it does and not to my worst enemy but to me?
Well, I have thought about it and, frankly, I don't know, but I am sure of one thing: that if I had to face a challenge like Sandy's, I'd pray that G-d strengthen me in the way He's enabled her. I might then have at best a slim chance of approaching the level of Rich's mom, which is not unlike that of a "Hannah" or a "Devorah".
How many of us have ever been challenged in our lives to the point at which we have no alternative but to "walk the walk"? After all, "talking the talk" is cheap!
What about "chesed", kindness and "gemilus chasadim", acts of loving kindness about which we learn so much and often in the world of Judaism?
Do we not learn about the kindness of G-d in parashat Noach when He stopped short of completely destroying the world, only to be followed by the kindnesses of Abraham for which he is best remembered among the Patriarchs?
A problem arises when the need for acts of "chesed" is not only self-evident but screaming out "Hineni" (Hebrew: "Here I am.")
Parents: Have we forgotten how much work there is in caring for a healthy child?
Now, I do not know if Rich knows this, but in one respect, he is fortunate indeed. That may strike you as an odd thing to say, but hear me out.
Think back to your mother. Did she have to care for and raise a severely disabled child like Sandy has? Hopefully not, but if she did, you have probably heard and lived this story before.
But if she did not, could she have if called upon? Probably so. Then again, not every woman is capable of this kind of sacrifice just because she is of the female gender. It is not unlike arguing that all men can provide the same standard of living for their families because they are of the male gender.
There should be no doubt G-d "wired" the genders differently, and I am not making an argument for the superiority of one gender over the other.
What the difference does is to call our attention to a far less tangible factor, the kind of stuff which separates the heroes and heroines from the rest of us.
"I will never understand why a woman like Sandy has to suffer in this world, but it is clear to me that she will be rewarded in the next," a friend of mine whomI haveregarded as my teacher for the past fifteen years, said one evening while we discussed the inability of Man to fathom the eternal mysteries of G-d.
Why does G-d bring such children into the world who will never enjoy the simplest of pleasures that the rest of us often take for granted? You know what those simple pleasures are. Draw up a list of ten, I'll get you started: watch a butterfly in flight. When you finish listing your ten, share their wonderment with a child.
As Sandy told me at the start of our conversation, Rich is very much alive. While true he does not speak as we do, but when he's upset, he lets you know by the sounds he makes. And smiles? I've seen them with my own eyes.
Everything Rich can do reflects the purposefulness of his life. In a sense, children like Rich are our teachers and, like all good teachers, Rich teaches us, his students, by example. To insure his message is not lost upon us, we have not only to take a hard look at Rich and his Mom but draw from their example the humility to count our blessings.
Some readers may think Rich's life does not apply to their lives, and I say this intending no disrespect, but they could not be more mistaken.
Rich's special life is not only meaningful but linked to our lives. Were it not, what would be the point of yours, mine?
Life as we experience it would become a cynical game of chance in which Man's spiritual dimension would end up discarded on the trash heap and with it so much of the beauty of this life that Man creates and experiences within the spiritual world.
When he looks up, Man should see beyond the evening weather report. Referring to violent weather manifestations and "natural disasters" as the wrath of "mother nature" Man still finds it difficult to accept that so much of the world exists beyond the limitations of his sight.
It is for this reason that he builds telescopes and microscopes, the need for which indisputably demonstrates that his naked eye beholds only a fraction of the Creation.
"Seeing is not believing" in Judaism. As a matter of fact, its foundation is the very opposite-believing in what cannot be seen. Though the Creator is incorporeal, His Creation is not.
There may be no answers to life's unanswerable questions, such as why either Rich or his mom has to set such an example for us by their sacrifice.
Is there any good that comes of it? Happily there is.
By making us confront questions we've never before, we emerge as better children no matter how many adult years any of us may have. As parents, we strive to better ourselves, as we should.
The benefits that result accrue to us which are reflected in our children who are ours to love.
So, remember that the next time you happen upon Rich and his mom Sandy. Whether in synagogue on Shabbat or along the streets of Skokie, look into their eyes with your own, greet them sincerely with words from your mouth or just use it to smile.
If we do that often enough, the sun will come out tomorrow no matter what the weather prognosticators say.
Alan D. Busch
March 22, 2011
Note from the author: A very special thank you to my friend Daniel Gutstein, MD for his technical assistance.
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