Fast of Tammuz

Today is the 17th of Tammuz, considered a minor fast (Sunrise to Sundown only, instead of a full 24 hours). I figured a fast would be good for my diet, but I am continuing to drink, especially given the heat.

This is corny, but cute:

Torah Connection - Hukkat

OK, still running late, as this is last week's parsha.

One of the highlights of this chapter is the latest round of popular grumbling, whereupon G*d commands Moses and Aaron to bring forth water out of the rock by speaking to it.  Moses scolds the thirsty people for their whining, then hits the rock, not once but twice.  The water flows abundantly, but not all is well:

¹² But the Lord said to Moses and Aaron, "Because you did not trust Me enough to affirm My sanctity in the sight of the Israelite people, therefore you shall not lead this congregation into the land that I have given them."

Why are Moses and Aaron punished?  Some commentators say it is because they used physical force when words would have sufficed.  Some say that it is because they chastised the people while they were still suffering.  I think both of these interpretations have merit -- both of these are important lessons, for parents and other leaders....  but the Hebrew text offers yet another option:



The instructions are generally translated,

 ⁷ and the Lord spoke to Moses, saying, ⁸ "You and your brother Aaron take the rod and assemble the community, and before their very eyes order the rock to yield its water. Thus you shall produce water for them from the rock and provide drink for the congregation and their beasts."

However, this could also be read as:

"...Speak to the boulder which is upon their eyes and it shall yield its waters; and you shall take water out of the boulder and provide drink for the congregation and their beasts."

In other words, their grumbling represents a hardening, a blockage of vision.  It is to that hardening that Moses must speak.  That boulder may then yield its waters (tears?) so that they are open to receiving the miracle of the water.

An atheist might look upon this passage as a desert people stumbling upon a spring and foolishly crediting an invisible father-figure with it.  The value of religion is not in accurate accounting of scientific processes (although some religious scientists have gone to some lengths to demonstrate uncanny insights in biblical passages), but in the poetic understanding of human relations, which are as relevant today as in the distant past.

Looking back, looking forward

My oldest is heading to a summer internship, followed by a semester abroad.  Halfway through college, she knows what she wants to study and has some idea of how she will use her education in the future.  She has good friends and is carrying the mantle of adulthood very nicely.  I am so very proud of her.

My second just graduated elementary school (8th grade).  She has grown tremendously in the last couple of years, and has been accepted into an academically rigorous high school, apart from the friends she has been with since kindergarten.  She has picked classes for next year, taking on some very challenging coursework. Her summer will be filled with exciting adventures, but nothing compared to the 4-year adventure which awaits her in September.  I am so very proud of her.

My third is heading into her final year of elementary school.  This year she had her Bat Mitzvah, which was a tremendous commitment and growth experience for her.  She also made great progress in her cello studies, has a great group of friends, and has definite ambitions for the future.  Not only does she know where she wants to go for high school (and has begun preparing for the application process) but she knows where she wants to go to college, what she wants to study, and where she wants to live when she grows up......  She is growing into a serious young woman, and I am so very proud of her.

My fourth is just missing kindergarten cutoff this year, so I will be homeschooling him. I will be supplementing that with an Israeli playgroup and children's theater (continued from this year) as well as gymnastics and math. He is now reading EVERYTHING, in both Hebrew and English.  He loves learning songs, and memorizes movie soundtracks.  He is also a loving and lovable little boy who is sensitive to others' needs and a great big brother, too.  I am so very proud of him.

My fifth and youngest is my firecracker.  In many ways he is so babyish, but he wants to do everything his big brother does.  Physically he is incredibly strong and coordinated, already learning to do the monkey bars in the playground at age 3.  After hardly saying anything until he was almost 2 years old, in the past year his speech has grown in leaps and bounds (in both English and Hebrew) and he loves to act out movie dialogues together with his brother.  His imagination is delightful, and his laughter is irresistable.  Absolutely fearless, he tries to train the dog (who is several pounds bigger than him) -- and she listens to him!  Bright and sparkly, he has a strong personality and a mind of his own. Next year he will start a couple of activities -- a weekly Israeli playgroup and gymnastics. I am so very proud of him.

I love my family!

This could have been us - continued

I have blogged before about why I feel a special connection to this family, even though we don't actually know each other.

So every time they post an update, it is almost a personal check-in for me.  Is this something that I could see my family handling?  How would this situation have played out with my family?

Torah Connection - Korach

I am very very late with this installment.  I struggled with this parsha greatly.  Korach led 250 community leaders to "Question Authority" of Moses and Aaron, and after a thorough humiliation (wherein their attempts to bring a special sacrifice failed miserably) they and their families are "swallowed up by the earth".  Ouch.  What is the purpose here?  Is it not a good thing to strive to excel?

This commentary finally gave me a new way of seeing it.  It distinguished Korach's spiritual strivings from the act of rebellion against Moshe and Aaron.  Defying their leadership, while still in the precarious existence in the desert, could jeopardize the whole journey to the Promised Land.  It had to be nipped in the bud. However, an interesting hint that there is more going on is indicated with the choice of phrases.

When Korach and his friends first confront Moses and Aaron, they say,

3 They combined against Moses and Aaron and said to them, "You have gone too far! For all the community are holy, all of them, and the Lord is in their midst. Why then do you raise yourselves above the Lord's congregation?"

And in his response to them, Moses does a tu quoque:

 6 Do this: You, Korah and all your band, take fire pans, 7 and tomorrow put fire in them and lay incense on them before the Lord. Then the man whom the Lord chooses, he shall be the holy one. You have gone too far, sons of Levi!"

The expression used in both cases is "Rav Lachem"  רב לכם.  And where else does this construction come up?  When Moses pleads with G*d to rescind the decree forbidding him from entering Israel.  G*d says, "Rav l'cha"  רב לך.   As Korach, and then Moses said, G*d says to Moses -- "You have gone too far!".  The common denominator in all cases is that the individual has taken a lofty motive and corrupted it.  Korach accuses Moses and Aaron of turning leadership into tyranny. Moses accuses Korach of turning piety into self-aggrandizement and idolatry.  And G*d accuses Moses of trying to use their special connection to curry favors.

What does this mean for us today?

What does it mean to "go to far" in the quest of excellence?

Interestingly, it seems to echo my recent conversations here on the subject of "how far" it is appropriate to go in pursuing treatments for Trisomy 31 and other disabilities.  Loving, dedicated parents seek to provide their children with every opportunity -- maximize their potential!  This is a good thing, just as the underlying motivations of both Korach and Moses were positive.  They sought to serve more fully and deeply, and to rise to ever greater spiritual heights -- maximize their spiritual potential!  However, it is too easy to fall prey to the lure of רב לך and focus on the "potential" at the expense of both the child as s/he is right now and the parent-child relationship.  It is possible to "go too far".

How apt that I struggled with finding something to say in this while I myself was embroiled in an impassioned debate on the appropriateness of "going too far".

Righteous Among the Nations

My daughter had the last meeting of her Bnei Mitzvah group this past weekend.  Since she has already had her ceremony, she will not be continuing with the group next year.  The meeting centered around issues of Jewish identity, including processing the Holocaust.

As part of that, the topic of Righteous Gentiles was discussed.  These were non-Jews who, often at significant risk to themselves and/or their families, saved the lives of Jews from Nazi atrocities.  What motivated them?  In some cases, they had personal connections to Jews and could not see their friends (and their co-religionists) persecuted.  But in many cases it was just a sense of morals, of honor and justice, that all people have basic human dignity and do not deserve to be victimized.

Why, then, are there so few advocates for people with disabilities who are not either personally or professionally connected with such individuals?  Many white people were involved in the Civil Rights Movement.  Many heterosexuals support gay rights.  Where are the supporters of people with disabilities who were not thrust into it by their own circumstances?

More about potential

I seem to have sparked something over at Kimchi Latkes.....

Overall, we are saying the same thing -- that all people, whether "typical" or "disabled" -- have strengths and challenges, which need not be quantified, and which do not detract from personal worth.  All people ultimately have infinite potential, and can be treasured for their individuality. Yes!  I totally agree!

But I think that this part is misguided:

If most of us had one arm and were not neurologically wired to do math, the world would have developed to favor those characteristics. 

I would say that most people think of themselves as "not wired to do math".  As a math teacher, this math-phobia is a constant struggle for me in my work with students of all ages (and their parents!).  Does this mean that we do not see mathematicians as having extra potential in this area? People do not not have the ability to fly, and we fantasize about superheroes with this ability! If a person were born with this ability, would it not be universally recognized as added potential?

Also, if in fact no potential was lost with disabilities, then why would we bother with medical, therapeutic, and technological measures to restore it?  I am extremely nearsighted.  If glasses had not been invented, I would be functionally blind, and my potential would definitely be diminished.  I could not drive or do most sports, participation in an ordinary classroom would be nearly impossible, and even ordinary tasks would be challenging.  With glasses, I am considered able-bodied.  One of the things that I find so exciting about T21 is that progress has been so rapid in the restoration of lost potential that we have no idea of how much further we will be able to go.  This is a good thing!

I also believe that this is not limited to people with "disabilities".  As we agreed earlier, all people have strengths and weaknesses. The struggle around how much to put into "normalizing" the child comes from the same parental headspace as how much to push a child into sports, music lessons, extra enrichment etc. vs. "letting them just be kids".  To what extent do we try to "maximize our children's potential" vs. celebrating them "just the way they are"?

Getting back to those balloons.  I think that what these "potential balloons" really represent is a combination of our abilities and our self-image. As parents, we try to inflate our children's balloons as much as we can without popping them.  We want our children to have the greatest potential they can. As adults, we can sometimes continue inflating our balloons. Usually though, we go in a particular direction and hit the latex. This may or may not be related to a "disability", but it is always a struggle.

In general, when faced with an area of struggle, we have three choices.  We can look for ways to overcome the difficulty, either alone or with education/medicine/technology. We can accept our level of performance in that area and focus on other areas where we have strengths.  Or we can redefine our standard to whatever our level is and try to get society to accept our definition.  All three of these strategies have their place!  There are definitely areas where society's definitions impose limits which deserve to be shattered, and doing so will improve society.  But the first two are the means to improving ourselves.

Hydrocephalus

This little boy is the same age as my youngest child:

Only 3 years old, his head is too heavy for him to even sit up, so he lies in his crib 24/7.

What will his fate be? Left untreated, in the orphanage, he would probably die by the time he is 5 or 6 years old.

However, some people believe that this is not a foregone conclusion. In this country, most children born with hydrocephalus are treated in infancy and then grow and develop normally. Some people are prepared to give this chance to children like this little boy, put themselves out there, and adopt them.

Here is the little boy from that last link again, in an update from 2 months ago.  Adopted when he was already 5 years old, he looked pretty hopeless.   Just over a year - and several operations - later, he is learning to walk and communicate with his family, and making beautiful progress.

What a little snip can do!

Children with Cerebral Palsy are often given up on by society, even when they are cognitively normal. In many cases, a relatively simple procedure - Selective Dorsal Rhizotomy - can restore functionality to damaged limbs, allowing mobility which in turn permits full participation in society.

Check out this video of 10-year-old Sarah Kate:

Father's Day coming up!

...in less than two weeks!  What are you planning to do?

If you are in the Massachusetts area, you might wish to consider this:

Save the Date: D.A.D.S. Family Outing on June 16

 
The Dads Appreciating Down Syndrome (D.A.D.S) annual Family Outing at Kimball Farm in Westford will be held Sunday June 16.

The cost is $10/person for those 2 years and above. The cost will include some activities. Details are being finalized, Kimball Farm features an 18-hole mini-golf course, bumper boat rides, batting cages, a driving range, arcade, sand volleyball court, horseshoe pitch and tug of war pit.

D.A.D.S, a proud affiliate of the MDSC, will have its own tent for the more than 300 anticipated attendees. 

Contact Jeff Roback at 339-788-1460 ordadsmass@yahoo.com.

Limitations

A reader objected to an earlier post,

"If a person's potential is extremely limited, and he achieves it, then it is awesome." 

Hm... Here I must disagree with you. I think the idea that PWD is limited in potential by some absolute measure is not quite right. Instead, I'd argue that any such limitation is imposed upon them from an ableist world. I think it is an important distinction to make, as it speaks to the inherent equality of all people.

I am reminded of Aldous Huxley's description of the denizens of "Brave New World" as living their lives inside bottles:

"...Each one of us, of course," the Controller meditatively continued, "goes through life inside a bottle. But if we happen to be Alphas, our bottles are, relatively speaking, enormous."

I think that a better metaphor would be that we live our lives inside of balloons.  Some of us -- through genetics and upbringing -- are blessed with larger balloons; while others -- again, through no fault of our own, are more constricted within smaller balloons.  Certainly, as parents, we try to "inflate" our children's balloons as much as we can.

That said, most of us never use the full extent of the balloons we find ourselves in, while others reach the perimeter and push against the "latex", expanding them beyond what would have been expected.

The balloons therefore represent both our limitations and our potential for limitlessness.

Kids and Happiness

I posted before about whether adding more kids to a family constitutes a burden. Now I want to look at the other side of the cost-benefit analysis.  What do we get out of having kids?

Recently researchers have attempted to show that parents are actually less happy overall than non-parents.  Indeed, the day-to-day tasks of childrearing don't seem like that much fun.  Between dealing with bodily functions and teaching basic manners, the moments of parental bliss (naches) seem few and far between.  Parents do less "fun stuff" than non parents -- less restaurants, less theater and concerts, less sex, less vacations.  The counter argument - that parents have more "meaning" in their life to compensate for the lost "fun", is hard to quantify.

I recently came across this video, which I think answers the question, although it does not primarily concern itself with family planning.


The basic thrust is that life is about connection, and connection is achieved through vulnerability.  Children put you in a place of vulnerability, even while they are themselves vulnerable.  Working through this mutual vulnerability not only nurtures the parent-child connection, but teaches us how to become better at forging connections with others.  Another point that Brene Brown makes is that our happiness is based on feelings of self-worth.  Not "self-esteem", but:

"Our job [as parents] is to say 'You know what, you're imperfect, you're wired for struggle, but you're worthy of love and belonging.'"