Sisterhood

    This piece from today's NYT jumped out at me: "Siblings of Disabled Have Their Own Troubles."   Nothing really new or earth-shattering in this.  We know well the kinds of challenges Maggie has faced over the years as the abled sister of a disabled brother.  But I can say with some confidence that, in her case, it is virtually all good.  Whatever discomforts there were with friends or in social settings, she handled them with grace and sensitivity; he cultivated those qualities in her.  And now that he is gone, she grieves with the rest of us.

     Maggie shared a room with Aidan for all of her twelve years.  Sometimes at night she would ask us to turn on the compressor that blew moisturized air into his tracheostomy because she found the sound soothing and reassuring.  When she was younger, she would talk to her brother as she lay in bed before sleep, knowing he would never respond in speech but happy that he was there with her.  He was a constant and near presence.

      With his passing she now has to face the room they shared on her own.  Some might expect that a twelve-year-old girl might readily accept the prospect of her own room; but Maggie is not at all happy.  For a week or so, she did not spend much time there.  She still cannot sleep there by herself.  It is, after all, the room where he died.  We have taken Aidan's bed out and are encouraging her to think of it as her room now.  We have also offered to let her move into another room if she wants.  But her response a few days ago was: "I don't want my own room!"  She did not finish the thought - I want my brother back - but her sentiment was crystal clear.

     I see this as yet another element of Aidan's legacy: his sister's innate other-regarding conscience.  She measures her own preferences in light of his.  Time will change this, of course.  She will adjust to life without him; her own individual interests and desires will take shape on their own.  But his effect on her is palpable.  It is not a "trouble" she has had to endure, as the newspaper article suggests, but a unique companionship she longs for.