Composer Allen Shawn writes about a birthday meal for his 59-year-old twin sister, Mary, who has lived in an institution for the mentally retarded in Maryland since she was 8 year old, in last Sunday’s New York Times magazine. For years and years, the meal has been the same—”chicken salad, tomatoes, rolls with butter, iced tea, ice cream and cake”—-as Shawn’s 99-year-old mother has wished. At a birthday meal when their mother “would not last much longer,” Mary comes to the apartment she has not lived at for so many years:
Escorted by an aide, Mary arrived dressed in a snappy striped shirt and pink summer pants. She had a particularly comfortable, confident air. In fact, it was as if she knew her way around. Although she asked where the bathroom was, she walked to it as if from long-buried habit. Her ease in the apartment, and with our mother, was self-evident. But this was the least of the surprises. She ate her chicken salad and rolls and tomatoes, to be sure, but she was particularly taken with the [never before on the birthday meal menu]antipasto, of which she asked for second and third helpings, while asking for more of everything by name. She dug into the watermelon [also a first-timer on the menu] and the unexpected salad with obvious delight and interest. More than once she said that she was having a wonderful time.
And all of this occurred in the presence of a miracle. From the moment our mother was brought into the room, her eyes remained open in unmistakable wonder and joy, as she looked from one of us to the other in astonishment and gratitude, galvanized, awakened, transfixed, radiantly fulfilled by the sight of her daughter. The occasion brought her back from a kind of somnolence that had lasted for months, as if encountering bright daylight after an age of darkness. Her eyes remained opened even after Mary left, and that night she barely slept.
It’s never too late to shake things up a bit—-who know what unknown tastes await us?
Well, I can’t comment on the complications of the Shawn family, or why they didn’t do things differently, but I am glad that Mary and her mother had an enjoyable day and that last chance to be together. It’s hard to tell what people think at the end of their lives and whether there is regret, or appreciation, or simply moment by moment.
Mary seemed to handle the whole thing with a grace and sanguinity that seemed to be eluding the rest of the family. I hope they learn, rather than merely recount.
Mixed feelings on this NY times article. Who pays the bill for the institution? It took them all a long time to change the special routine and I wonder if this is the only time each year they all got together. Of course they were all amazed since they never made the effort in 51 years.
At least the 99 year old Mother got to keep her eyes open and see her kids, but they seemed to learn by example and only cared about one day out of the year.
I still hate the article as much as when I read it yesterday. The sister “escorted by an aide” the “snappy clothes”, etc. was insulting. She “dug in” enjoying unfamiliar food, well hell, the sister has lived on this earth long enough to enjoy a fancier than usual meal, etc. Yuk. Institutionalized “living” is the worse. The miracle at the last of the article was moving but at the expense of the sister: why wasn’t the daughter’s presence enjoyed by the mother as part of ongoing life and not just “special” and routinized annual visits?
@KC’s Mommy,
So great to hear from you—always check your blog to hear how you and your now 3 are doing.
I think our boys really can sense how we feel about changing/accepting/etc-ing them—-they are so aware of so many non-verbal and unexpressed cues. I think this is why Charlie started to just do better after “cure” and “being in kindergarten at 5 years old” were no longer our “goals”—-I think he knew that we were dissatisfied with something about him, and this made him unsettled, deeply.
Thanks and always great to hear from you—–
Hi Kristina,
I am getting caught up little by little with the blogging world.
I just watched GMA that aired June 10th and want to say your words really touched us on so many levels. Having two boys with Autism is tough, butI have come to a place in my life where I accept them as they are and stop searching for ways to “fix them” I just want to help them. I really feel in my heart that there is so much time and energy in trying to “cure” that people are missing the big picture. Our kids are here now and we have to help them along way. Thinking about Adam and K.C. has made me really consider a different way of thinking. I love both boys very much and what w ould they think if they knew “oh Mom doesn’t accept us for who we are, she just keeps trying to change us to her liking.” I never want for them to feel that way. If I were to change the boys then they wouldn’t ever be K.C. or Adam the son I love and brother I love. Acceptance, totally.
Bravo on the show!