What is a baby?

Why are so many children waiting year after year in foster care, orphanages and institutions around the world?  Why, when so many childless couples wait year after year, too, spending tens of thousands of dollars on infertility treatments, surrogacy arrangements, and infant adoptions?

Of course, the answer is that parents want, first of all, a child who is like them, and of them.  Genetically related.  THEIR KID.   If not, let it be an infant, so the experience will at least approximate a biological child arriving.  THEIR EXPERIENCE. All about THEM.

What about the kid?  Does a child come into the world for the benefit of the parents, or are the parents there for the benefit of the child?  A secular worldview tries to collapse these perspectives onto each other:  Having the child is the parents' choice, but having made the choice, the parents have the responsibility to provide the child's needs to maturity.  This worldview allows for great license for amateur eugenics, as parents select bio-parents from sperm-banks or surrogacy registries, or selectively abort fetuses of the wrong gender, or with inconvenient abnormalities.  How does one "flip the switch" from thinking of the child as a product to be procured to specifications, to accepting the child for who he/she is, with all the vicissitudes of a normal childhood and adolescence?

A religious worldview can sometimes bypass this, by recognizing all children as "gifts" from G*d.  We do not pick and choose our gifts.  We do not return a gift that has been specially ordered and personalized for us.  We do not discard gifts that have been given to us by those whom we love and esteem.  If such a gift is bestowed upon us and requires care and nurturing, we will do all in our power to prove ourselves worthy of it.

In the second blessing after the Shema, we read,

And you shall inscribe them on the doorposts of your house and on your gates - so that your days and the days of your children may be prolonged on the land which the L-rd swore to your fathers to give to them for as long as the heavens are above the earth.

I love that the inheritance is passed from our fathers to our children.  We have the responsibility to maintain for our children that which we might be tempted to dispose of ourselves.  This is echoed in Khalil Gibran's famous poem:

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you, yet they belong not to you.

What, then, of all those waiting children?  The older children, the sibling groups, the children with physical and developmental disabilities, with delays, with chronic medical conditions?  Whose gifts are they?

I am currently watching two adoption stories unfold, featuring older children with Down syndrome and severe institutionalized effects.  Both families are large families which have adopted before.  Both families see these children, long rejected by conventional adopters, as precious gifts every bit as uniquely bestowed upon them as the children they have conceived and birthed themselves.

Here are the Mussers, who have just completed their first trip to adopt 15-year-old Tommy, who is scheduled to come home in April/May.  They have nine biological children, ranging in age from 2 to 18.  Their youngest was born with Down syndrome.  Just over a year ago they rescued their daughter Katie from the Pleven orphanage.  At almost 10 years old, she weighed barely 10 lbs.  The story of her recovery and blossoming in the past year is nothing short of miraculous.

Here are the Salems, who are presently in the final stages of bringing home 14-year-old Hasya and 9-year-old Kael, both of whom have Down syndrome.  Like Katie and Tommy, these children have suffered horribly, not because of their disabilities per se, but because of how their disabilities are seen by a society that views children as valuable only if they meet its specifications.  Both are tiny for their ages, and severely delayed.  Hasya, like Katie before her, has not been permitted to grow beyond the size of a young infant.  She is currently struggling to gain nutrition without succumbing to refeeding syndrome.  Kael, who was in a different institution, is doing much better, though he is still only the size of an average 3-year-old.

These and other families are taking on the children whom they recognize as "the sons and daughters of Life's longing for itself", who welcome the children to come through them though they are not of them.


What is a baby?  A baby is a human being coming to the world, and meeting his/her family for the first time.  In reading various people's adoption stories, I am repeatedly struck by the idea that a child coming into a family - at whatever age - is in many ways like a newborn.  They may or may not be walking, talking, or toileting yet, but emotionally they are at square one.  Many families report very good results by "regressing" their new child, so that s/he can cover the lost emotional ground.  Katie, a year later, is in many ways comparable to a one-year-old.  In some ways she is way ahead of a one-year-old!  She has grown to the size of a 3 or 4-year-old, she is learning to toilet herself, and so on.

Russia is not likely to approve any new adoptions at this point, although it is hoped that the proposed amendment to make an exception for special needs will be passed speedily.  However, many older children are waiting in Ukraine, Bulgaria, China, and many other countries, in conditions just as deplorable as Pleven. U.S. foster care provides for over 100,000 children each year, most of whom have no disability except their age, in conditions which are incomparably better.  These children go to school, receive full medical care, and enjoy a semblance of family life.  Yet emotionally, they need parents who will baby them, make up the lost time, and allow them to reach their true potential.

Why, then, do they wait?  These gifts, these babies frozen in time?  A newborn baby is no less a bundle of needs than a child scarred by loss and neglect.

One of the prayers of Yom Kippur calls upon us to see ourselves as raw material in G*d's hands, to be fashioned into a work of art through the process of repentance and good deeds.  Khalil Gibran once again echoes Jewish liturgy when he writes:

You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as he loves the arrow that flies, so He loves also the bow that is stable.

31 for 21: How I got here

I have no children with Down syndrome.   I don't really know anyone personally with it.  So how did I get involved in this?

Down syndrome really first entered my consciousness during  the 2008 elections, with Trig Palin.

Then my daughters introduced me to the show Glee, which features characters with Down syndrome and other disabilities.

My youngest child was born a few months before I turned 41.  The possibility of Down syndrome was very real, and my husband and I discussed at length what the implications would be for our family.  We realized that, with everything we knew at that point, that we would not abort a child with Down syndrome.  As it turned out, he was born with 46 chromosomes, but the idea that a child with a disability would not be a tragedy was planted.

In January of 2012 I was taking a seminar through Landmark Education, which challenged participants to think of "something big enough to be worth your life being about".  Without thinking much, I put down the first thing that popped into my mind: "Making a difference for children with Down syndrome."  I promptly forgot about this when I got home.  But after that week's episode of Glee, I did in fact start Googling for Down syndrome volunteering opportunities, and found a program through Children's Hospital Boston, which I contacted.

I also found this video and this blog.  The ABC feature was very recent at that time.  Likewise, Katie Musser had just come home a few weeks earlier, and it was not at all clear that she would even survive.  Here is her full story since then.  It is rather long, but since I have been following it -- Susanna Musser writes exquisitely! -- this has had the most impact on my feelings about special needs adoption. Please read her story -- it is fascinating!

This past summer, I took another Landmark Education program, which challenged me to take an issue of importance to me and make an impact in the community around it.  And here I am.


Oh, and please sponsor my family in this Sunday's Down syndrome Buddy Walk!  Thanks!!!

Shana Tova!

Last night at services, our rabbi made a really cool sermon on the "kingship" of G*d.  He pointed out that the Hebrew word for "king" - "melekh" - comes from the same root as "to walk" - "lalekhet".  Thus, the image is not that of a king sitting staidly on His throne, but rather the dynamic force permeating the Universe.

I thought about this, and then I thought about the preamble (hmm, "amble" = "walk"...) to most Jewish blessings:

"Barukh Ata Adonai Elokeinu Melekh Ha-Olam....."
Blessed are You YHWH our G*d King of the Universe...."

I usually put a mental comma after "Adonai", so that the second phrase is simply an expansion on Who G*d Is, but now I put in 2 commas, and also read "King" as "Dynamic Force":

"Barukh Ata, Adonai Elokeinu, Melekh Ha-Olam....."
Blessed are You, YHWH our G*d, Dynamic Force of the Universe...."

What's with "YHWH", by the way, you might be asking.  That is the unpronounceable Name of G*d, as it would appear (with the equivalent Hebrew letters Yud Heh Vav Heh) throughout the Torah.  Back in the days of the Temple, this name would be pronounced only once a year, on Yom Kippur (this year coming next Wednesday!) by the High Priest.  These days people substitute a variety of different names (such as "Adonai" = "My Lord") in its place.  But what that name actually IS, is the root of the verb "to be".  When we call G*d YHWH, we are referring to the Was/Is/Shall Be nature of the Universe.

So when we call G*d YHWH -- a constant Being -- we refer to Him as "our G*d", but when we call Him Melekh -- a dynamic Force -- it pertains to the Universe as a whole.   We have a free will -- we are dynamic -- so our relationship to G*d is as to an anchor ("Rock of ages").  The Universe does not -- so much is random! -- so there we need a reminder that G*d is there even in the randomness.

Another observation: The phrase "Adonai Elokeinu" is cast in the plural, even though G*d is definitely One in the Jewish tradition!  This seems to say to me that each of us has an individual, separate relationship with G*d.

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This morning, I saw Susanna Musser's latest update about Katie, the 10-year-old who was adopted last year from one of the worst institutions in Eastern Europe.  When she came home 10 months ago, she weighed just over 10 lbs., developmentally like a newborn but even weaker and with serious barriers to attachment.

 

Now, less than a year later, she is the size of a 4-year-old, learning to communicate both with sign language and speech, learning to crawl and walk with a walker, and so much more!   In her update, however, Susanna emphasizes that there is no persistent anger or grief about the effects of the years of neglect on this child:

Perhaps it was because we were very prepared for Katie as she was.  We really did fully accept the Katie Before as the child we would love and care for until she reached the end of her life.  We understood that she might not grow, gain any skills, or love us back.  There was so much joy in simply being allowed to have her as our daughter.

By being completely accepting of Katie as she was (static Being), the Musser family was able to take the actions needed to meet her needs.  However, in watching her progress and flourish,

Her care may be time-consuming, but she herself, the person who is Katie, only adds to our joy in life.
Katie’s progress is a source of celebration.  She keeps progressing, so we get to keep celebrating!

So here we see the pure joy of the Dynamic Force -- whatever progress is made, is cause for rejoicing.




Or, in other words,
"G*d grant me serenity to accept the things I cannot change, the strength to change the things I can, and the wisdom to know the difference".