Friday, December 21, 2012

Loving a Child on the Fringe

Cristina Nehring:
Cristina Nehring and her daughter Eurydice
If you’d told me five years ago that I was soon to bear a disabled child with blood cancer—for whom I’d have to surrender, possibly forever, career and love life—I’d have contemplated suicide. Moreover, I would have thought this a level-headed response: not an act of despair but a lucid sort of Swiss-style euthanasia.
. . .
Am I “cheerily generalizing” as Solomon says of other Down syndrome parents, “from a few accomplishments” of my child? Perhaps I am. But one thing I’ve learned these last four years that possibly Solomon has not: All of our accomplishments are few. All of our accomplishments are minor: my scribblings, his book, the best lines of the best living poets. We embroider away at our tiny tatters of insight as though the world hung on them, when it is chiefly we ourselves who hang on them. Often a dog or cat with none of our advanced skills can offer more comfort to our neighbor than we can. (Think: Would you rather live with Shakespeare or a cute puppy?) Each of us has the ability to give only a little bit of joy to those around us. I would wager Eurydice gives as much as any person alive.
[emphasis added]

. . .
I, too, am a slow learner. Every day, Eurydice has a thousand things to teach, and every day I assimilate precious few. One thing I have grasped though is that the more I do, the more I can do. Raising my girl taps resources that did not exist five years ago. In many ways, she’s still a baby—not yet continent, not yet talking. Some days I fear she will go from being a baby to being an invalid. Medical risks are legion with Down syndrome, and they come on quickly.
There are reasons to think the future could be harder—not easier—than the present. But while certain experts (repeatedly quoted by Solomon) have suggested that this leads to “chronic sadness” in parents of children with Down syndrome, I find it leads to “chronic carpe diem”—a chronic desire to seize the day and wring the best possible from every moment—and from myself.
[emphasis added]
. . .
The joy Eurydice takes in each detail of life is the most infectious quality I’ve ever known. When she flings her arms around my neck as she does every day, every night, my most recurrent fear is no longer relapsing cancer, no longer early dementia or heart disease or hearing loss—or even the fact that Eurydice is growing up too slowly. It is a testament to how radically this child has transformed me that my most recurrent fear may be that she’s growing up too fast—that one day she could be too mature to give me those massive, resplendent, full-body hugs.
The wise learn from experience, especially tragic experience, what is truly valuable in life, and their own and humanity's limitations and glories. The ability to laugh at one's own presumptions--especially those of us who have been coddled from youth with "what a bright little boy" or "what an intelligent little girl" and teachers enjoying our "brilliance". The most important thing in life is not intellectual excellence, but the ability to give love and receive love. She's exactly right that in day-to-day life and especially in tough times, I'd rather have a spouse, brother, good friend, or even my dog than the brightest, most talented person in the world at my side.

In her parental and personal crisis, Cristina Nehring has found a major key to happiness. I say "a" major key because as a Christian, I would be dissembling if I did not attest that "the" key is God's love and blessing.


MAX Redline said...

I hope you had a delightful Christmas, TD!

While certainly no Cristina, I can identify to an extent - our daughter is autistic. Unlike Down's kids, who are generally quite interactive despite their obvious disabilities, autists are oblivious. That brings its own set of challenges.

Fortunately, I earned enough that my Bride could stay home during the early years - and daughter, though asocial, proved nonetheless quite adept in certain areas: she was reading at age three - much to the surprise of her pre-school teacher.

Over time, as my Bride became more involved with the vagaries of the IEP requirements, she became skilled at helping other parents of such children navigate the mazes; so much so that two governors appointed her to serve on the state committee dedicated to "mainstreaming" kids and young adults with disabilities.

She's now in the process of setting up a nonprofit geared toward providing individualized assistance to parents and education professionals to help them craft workable IEPs for disabled kids. Now that I've retired, that's where I come in: I do much of the writing, editing, and document proofreading. Having a built-in spelling/grammar checker is, I've discovered, a useful thing after all.

One thing Cristina should be looking toward involves the likely requirements of her daughter at age 18 - when she's officially an "adult". SSDI goes only so far, but mentoring programs are available to facilitate transition into a life that offers some degree of self-sufficiency, though she'll likely always need some degree of assistance.

It's not easy. But the joy they derive from finding the things that they can do on their own carries no price-tag.

On a side-note: Jim passed away last month, and so you may want to consider replacing your link to his Orbusmax site with a link to a different resource. Sorry to be the bearer of bad news.

T. D. said...


Your wife is one of the "angels" who not only grows through distress, but helps others in distress. And you're pretty good too!

My brother was handicapped, and a blessing in our family. He taught us what is really valuable in a person.

You're right that turning "adult" is one of the big dilemmas for those who want to protect and yet enable those with significant handicaps.

Happy New Year to you, Max!