Birthday girl draws family together

[Guest guest]

Birthday girl draws family together

http://www.newsobserver.com/opinion/columns/story/976657.html

Steve Ford, Staff WriterLet me put it this way: If my in-laws those many years ago had somehow anticipated, and acted upon, the curious advice offered of late by that Chapel Hill embryology prof, our little extended family would not have gathered the weekend before last.

The occasion? My wife's sister, Brassel of Yorktown, Va., was celebrating her birthday -- her 51st birthday, in fact. happens to be sort of the family birthday chronicler. She knows when everyone's is; she inquires solicitously as to whether your last birthday was celebrated in proper fashion. Her own day (Feb. 12) has become an occasion for members of the clan, such as it is, to assemble for what amounts to a special family holiday. This year the weekend following the actual event was designated in her honor.

She enjoys being the center of attention. She enjoys it so much that she might even appear during broad daylight to socialize. You see, tends to be nocturnal. She's usually on the night shift in the house she shares with her mother and best companion, Eleanor Brassel, who is 93. An evening get-together suits her just fine -- she's raring to go, even if others are starting to yawn.

With her ready laugh, sardonic wisecracks, shared memories of times and people and places and pets gone by ... she becomes the life of the party, especially when it's her birthday and she gets to show how outrageously long she can take to open her presents.

That has Down syndrome is pertinent to her lifestyle and the ways her family has adapted to her over the years.

There are things she won't ever do, milestones she won't ever pass. She won't drive a car or hold what would be called a regular job (she did go to a workshop for a while). She won't get married and raise her own children. It is poignant to contemplate those limitations. For reasons that have to do with her own temperament and intrafamily dynamics, she will not live independently, which has placed caretaker responsibilities on others, most notably her mother. Frustration and even sorrow have been in the emotional mix.

Yet, what parent of even the most accomplished child can say he hasn't experienced frustration, perhaps sorrow, to some degree? A hypothetical: The child's horizons and prospects are so grand that he or she moves to the Big City and visits once a twice or year. The grandchildren are strangers. You're happy for your child's success, but maybe you'd have been happier if your contacts were more substantial than the occasional phone call or e-mail.

And the joy you take in a child's triumphs often is relative to his or her potential. Brassel has any number of proud achievements, and put in perspective the family treasures them all the more.

There were her Special Olympics swimming trophies. The pictures she used to take with her trusty Polaroid. Proudest of all: her diploma from West Springfield High School, Springfield, Va., Class of 1979. We all went to that graduation ceremony, and rare is the family gathering when her graduation is not invoked. By .

Her dad, Al Brassel, retired as an Army officer, taught high school, then undertook a successful second career as an independent real estate appraiser. He was a big, outgoing fellow who loved sports and also loved to learn -- a legacy perhaps of his Jesuit education at Fordham.

Al and El pushed hard, when was growing up in Northern Virginia, for more opportunities for kids like her. "Mainstreaming" in the public schools was a novel concept and a hard sell. But for Eleanor Brassel, besides teaching her some basic skills, it helped give her life meaning. Now she sorely misses her father, who always urged her to keep trying.

My first memories of her are as a little girl back in the mid-'60s. My wife, Jeanne, and I have watched her befriend our three sons as each came along; she was older but a good playmate. Her personality has perhaps darkened a bit with age. I, on the other hand, have grown even more relentlessly sunny with the passing years and never let a somber thought cross my mind.

Professor Albert ventured his opinion as to the "moral" course for parents who learned, via pre-natal testing, that their child would be born with Down syndrome: abort the fetus. That understandably precipitated a major uproar.

Every family's situation is different, and there may be some for whom the burden of raising a child with Down syndrome is so oppressive as to seem unbearable. Yet the sense among many families in this particular boat is that their Down kids not only are entitled to life but also are able to enrich the lives of those around them. That makes it a win-win, right? People with Down aren't perfect, true enough -- but neither are the rest of us.