It’s not quite The Sisterhood of the Traveling Pants, but there is something that siblings of disabled individuals share that binds them together. It takes them a while, naturally, to let the information seep out and unify them; there’s no artistic way of saying “I have a disabled sibling whom I love and who drives me nuts and who feels like the proverbial albatross around my neck and who has forced me to grow up and makes me laugh and makes me angry and I’m scared” during the hearty nice-to-make-your-acquaintance handshake. TGG has spent most of his life walking around with proof that he’s not “like other kids” because his brother isn’t either.
Our approach to helping TGG cope with the reality that is J (and the many complexities of their relationship) has hinged on making him understand that they both basically got gypped, and that we know it. Let’s face it, both our kids got a raw deal, the difference is one is more aware of it than the other. Over the years we have tried to make TGG not feel so “alone” in his situation as J’s sibling by handing him books and movies we think are very apropos: Harper Lee’s To Kill A Mockingbird and John Steinbeck’s Of Mice and Men came to him at times when his symbiosis with J was starting to morph. In turn, TGG has felt like George, Scout Finch, Benny to J’s Lennie, Boo Radley and Joon. Jim Sheridan’s My Left Foot allowed him to understand that, yes, we are ALL affected by this thing that has happened to one of us…we, too, are of the same frustrated ilk as the Brown clan. Last night, TGG finally faced Lasse Hallström’s What’s Eating Gilbert Grape?
Why do I say “faced?” Well…TGG had been circling this movie since before J went through his darkest moments. It was on one of the Twelve Days that we lowered the boom with this movie, and TGG -who admires Johnny Depp tremendously and has yet to forgive Leonardo Di Caprio for his waxing-and-waning Irish-American accent in Gangs of New York– knew what we were aiming at and had every intention of remaining a moving target. Rain Man, he has stated unequivocally, is something he will not watch because he has had to hear “oh, like in Rain Man” so many times in reference to his brother that he’s developed a prejudiced aversion to this movie. I told him Tom Cruise deserved an Oscar more than Dustin Hoffman did, and -after a loud HA!- he said “uh, NO!”
Last night, in a darkened hospital room, his patient switched channels until she stopped at the one showing What’s Eating Gilbert Grape? A few nights ago this same patient told TGG he was the Devil and she would make sure he burned in Hell, so TGG was not going to alienate her back into that mood by asking to change the channel. In the darkened room he sat with Gilbert and Arnie, and once he heard snoring from the bed, he stayed with them. The greatest admission he managed this morning, as he ate his breakfast burrito, was “I should have watched this movie years ago.” There you have it, the closest thing I’ll get to “you were right, Mother dear.”
We are not the Grapes. Our experience is not the same and our reactions are not exactly the same…father hasn’t done away with himself in the cellar, mother isn’t morbidly obese to the point of immobility, there isn’t to our home the sad deterioration of apparent hopelessness and despair. We are not the Browns. Poverty is not overwhelming us. J’s not a genius like Christy, although he is trapped in many ways. We are, perhaps, closer to the Radleys with their privacy, their solitude, their isolation, but -then again- we aren’t like the Radleys at all. And yet, there is something about George and Lenny, Gilbert and Arnie, Scout and Boo, the entire Brown clan and Christy that makes TGG feel he’s not alone.
Sometimes, as parents of children who live in exceptional circumstances in relation to the world and each other, we fear that we will come across to them as condescending. Telling TGG that I understand how he feels is mendacious at its best and patronizing at worst; I have NO CLUE what it feels like to share the sibling experience with a person like J. I have siblings, and my relationship with them is complex, but I do not live knowing that I will have to be responsible for them at one point or another. My husband has brothers whom he loves fiercely, and with whom he’s been competitive, complicit, and close over the years…but they are all capable of providing for themselves and, when they are not, they have family to help them along. Here we are, though, raising one child knowing that he will have to take care of the other and that he has no real choice in the matter.
No wonder Gilbert Grape tugs at our heartstrings and we feel that he is, well, a voice that TGG can listen to and understand. The same frustrations and fears, the same overwhelming feeling of “are you serious? This is my lot in life?” that Gilbert displays is something TGG can relate to, and we are on the fringe, trying to help him understand that there are other people out there who think this whole deal sucks, and yet they love the people they are, as it were, “saddled” with.
We wish some neuro-typical kid with a developmentally-disabled sibling had offered to befriend TGG when he was younger and he needed some reassurance that the world, askew as it is within the circumstances, is still navigable. We’ve told other parents in similar situations that TGG is there if their kids want to talk. TGG, who won’t really open up to us about this because -rightfully so- he says we are clueless about the “sibling angle,” would gladly communicate with other people like him. No one takes us up on it; they probably think that because the kids don’t say “help me, I feel lost and overwhelmed,” the situation is under control.
We draw TGG out, and even if it is to tell us to buzz off, he will say something. It’s not always WHEN we want him to say what he’s feeling, but it eventually comes out and we all feel better. TGG will often talk to J (privately and confidentially) about things that he feels that J probably understands better than we do.
We’re ok with this…even if the response is not typical or effusive, TGG knows he’s not alone. And now he knows that, just like Gilbert, his frustrations and fears are not purely exclusive…Hallström found a way to voice our son’s complex symbiosis with his brother…that is priceless. Who says The Arts are frippery?
One final thought: Maurice Sendak, thank you for not talking down to us in your books; thanks for recognizing that boys and wild things belong together, even if only for a little while. The journey home is always sweetest when we’re lured from the wild rumpus by a hot meal. 🙂 We are better for having read your books…thank you, thank you, sir…