I remember the end of Marvin's room. Diane Keaton's character has spent her life taking care of her dad, who is bedridden, and a crazy great aunt. She has also just gotten the news that her own cancer is incurable, despite having her sister and nephews typed for bone marrow transplants. The two sisters are sitting in the room of the father, I think, amusing him with a mirror reflecting light on the walls. (I think -- it's been a long time). Diane Keaton's character says "I am so lucky to have had so much love in my life." The sister, wanting to be reassuring, says something like "Oh yes, Dad and Aunt whoever love you very much." It's obvious that the dad isn't even sure she's around.
Diane Keaton's character says," No, it's not that they've loved me. It's that I love them."
At the time, I thought that was sappy.
But I think of that a lot. For those of us who spend our lives loving people who might or might not be able to love us back, or they can't give us any of the "perks" that you're supposed to get from a relationship, who have that emotional investment and aren't able to ever have that translate into any sort of real-world ability to have any input, who have to just bite our lip and bear it when the parents decide a group home is best, or when we have to move on, or when a kid gets transfered, or when a parent or school or guardian or teacher or administrator makes a decision we know is wrong... we just have to love and let go. It's not like 20 years from now, a kid is going to give a speech and say "I remember that Miss Lesley helped me do this..." My kids, for the most part, don't speak. And I get embarrassed when other people note things, as if that the child with autism, or cerebral palsy, or Lanudu-Klneffner, or Angelman Syndrome, or Down's Syndrome, or whatever is so different, is so outside the human race that to love and to teach is somehow only an extraordinary achievement that only someone like me can achieve.
But I get my heart broken over and over -- sometimes through my failings, sometimes through the system. I go visit Kayla and my heart just wants to explode on the drive home. I want to be there so badly, I want to set things up so that she's loved and cared for in the way she deserves. I want everything for all of them and know that I can't do it. So all I can do is love -- even if that means not letting my 12 year old hug me all the time because it's not appropriate and all I want to do it hug him. Let go of my "wild-child" who was too violent for me to take care of her, though I think about her everyday. Go visit my 5-year-old and try to remember that I'm not going to be part of his life forever, so I need to train everyone around him on how to use his communication system. Remember how the 7 year old "got it" -- learned how to use his augmentative system to ask for things, and then moved and I'll never see him again. NOT let my 20 year old get so attached -- she gets wrapped up in her caregivers and that scares them off. She needs friends -- not paid friends. She has friends. Her caregivers need to respect that, and not bask in the affection and praise she so freely offers, and instead take her to visit her friends.
Anyway, I think of paperflowers
a lot. She knows this too and it also turns around and kicks her in the teeth all the time. The people she loves are at the end of their lives. They forget who she is, forget who they are, stop talking, have strokes, die. That's a kind of hard love that most people don't have. And it leaves her with a lot of people that have left her, and it leaves her alone.
There might be something broken about this, something that makes us seek out these sort of doomed relationships. But I don't think so. I think without my juvenile delinquents, my Kayla, my kids who can't talk but are never silent, I would be a worse person. I wouldn't understand that everything isn't always fair in love. The hubby is never going to be great with money and that's how it is. I either let myself feel cheated every month, or I accept that, and do the bills anyway. He's never going to be great at giving comfort on demand. I know that now, and I know that doesn't mean he doesn't love me. I'm not a doormat, by any means, and I get pissed when it's my bank account bouncing all the time.
I think this is sounding too emotional and flowery, and that's not what I meant. I think, without my kids, I wouldn't know what it means to just love -- expect nothing in return.
People say that kids with disabilities are the example of unconditional love, and I used to laugh. Love for Mary was totally conditional -- if you let her eat, she loved you and hugged you. If you said no, or made her mad, she hit or bit and screamed. It was the definition of conditional.
But I realized that they mean to love a kid like Mary is to know how it feels to love unconditionally, even as you're so angry you think you understand child abuse now, even as you're bleeding from a head butt. That's what I've learned from all this.