"Contentment and well-being at once become possible the moment you cease to act with them in view"
-Chuang Tzu
I've been thinking a lot this week about the temporary nature of things. We spent part of this summer in Montana where it was cool and green outside, and where we were able to spend lots of time with family and friends. Upon returning to our house in Arizona, I became conscious of a deep sense of isolation. Our big, beautiful house here just feels so incredibly empty, whereas the crappy little house we stayed in in Montana was always teaming with life.
We're currently without respite care, which is a regular problem for us. And Shane's parents, along with my dad (the only family members we have down here), are all gone until the end of October (they're all gone for seven months out of every year).
We've been back from Montana for two weeks already, and school doesn't start for another three. It's too hot to spend time outside. Even if we could withstand the air temperature, the playground equipment at the park could probably be used to fry an egg. And Cale, with all of his constant screaming, makes it impossible to attend the indoor "kid" activities at the libraries and museums. So we're literally stuck in the house together twenty four hours a day, seven days a week. And we're really feeling the isolation and boredom that accompanies us being in Arizona this time of year.
We have some friends that live near us. And, in fact, they're some of my very favorite people to hang out with. But most of their children are raised, for the most part, and they like to go out and do things. It's hard for us to go out of our house and see them because our kids are so difficult. And I don't feel that they particularly enjoy being trapped at our house all the time. So I'm afraid that we just don't see them very often any more.
We'd like to move back to Montana (we decide this every summer), or, at the very least, move across town to the other side of Phoenix where we have more friends that want to hang out with us and our kids. And, for the last few weeks, I've been just sure that one of these two things would be the solution to our loneliness.
It's funny. About the time I think I have a working plan in progress, one that will bring us contentment and well-being, things change. We've just found out that our best friends in Montana (a part of the life that our Montana house teamed with) are going to be moving away. I can't say that this has seriously dampened that "plan," but it has dampened my enthusiasm for it. So I've been making the effort to go across town here several times a week to spend time with my friends over there. And it's been awesome. So awesome in fact that I've thought that I might actually want to stay. However, I realize now, that I hadn't actually tried taking my kids over there yet.
Several days ago, some dear friends of mine from over there invited us to a potluck that they were having this afternoon. I told them we probably couldn't come because of Cale. He makes things really hard and we'd just as soon have people over to our house rather than try to take him out someplace. However, since they don't live over here and they can't come to our house very often, they really tried to talk me into bringing my kids and coming to their potluck anyway.
I told Shane that we should go. It was an hour away (and half a tank of gas to get there and back), but there was going to be food and kids and a pool. And we were all in desperate need of doing something fun. He was hesitant of course. Because we usually don't go and do things like this with our kids. But our sense of loneliness and boredom had become so intense that we actually made the brutal mistake of thinking that it couldn't possibly be worse to go out than it was to stay in. We thought that this time it was going to be different. So we decided to give it a try.
We were in the car for an hour and a half (road construction coupled with getting lost) before we finally got there. Once there, we found so many people in the back yard and in the house that it took us fifteen minutes to get to the bathroom. When we finally had our swim suits on, we went out to the pool.
Cale screamed his high-pitched, ear-drum-splitting scream (at which everyone in the back yard cringed and stared) until we found him a cup and gave it to him. FINALLY we all got into the pool, Cale started pouring water with his cup, and everyone was happy. So I began to relax. And I actually thought to myself, "WHEW! Thank God it's over with."
My friends began commenting immediately about Cale's scream, "Wow. WOW. He's got some lungs on him. That is really high-pitched and loud."
"Yeah," I replied with a sigh, "It's actually damaged my hearing."
"I'll bet," they said, "That's really something."
Realizing that these particular friends of mine had never spent much time with Cale, I couldn't help but say, "He screams all the time. And if he doesn't start talking by the time he turns five, I'm going to talk to a veterinarian about having his vocal cords clipped. You know? Like they do to those yappy little dogs? Then when he opens his mouth and screams, no sound will come out."
Yes. I actually said that. Luckily, they thought it was hilarious.
We were told that all the kids should stay outside of the house because they were going to be visiting in the house (and they needed it to be as quiet as possible). And that would've been fine except that we were only in the pool for about fifteen minutes before a thunderstorm started up. At that point, the house owners ordered everyone out of the water.
Alden cried and cried and cried. Isabel cried and cried and cried. And Cale? Cale screamed and screamed and screamed. And I really didn't know what to do. The idea of having to stay outside with the kids in a thunderstorm for God knows how long, with them not being able to be in the pool (Cale's obsessed with swimming pools), was horrible. It would mean that for the next hour (or longer) I'd have to chase Cale away from the water, with him tantruming profusely the entire time. The other option was to go inside and try to make Cale be quiet. Can you actually hear me laughing out loud about that one?
As I stood there trying to figure out our options, Cale ripped his shorts and swim diaper off right in front of everyone and ran, screaming, into the grass and through a pile of dog shit. I grabbed him and a towel and laid him down on it, fumbling through my bag to find baby wipes and clothes. As I did so, he kicked me repeatedly as hard as he could in the throat, chest, arms and legs, with his dog shit covered feet, all while screaming at the top of his lungs. Just then I looked up and saw the entire back yard full of people staring at me. You see? Not only was he piercing their ear drums, but I was still wet with pool water. So as the dog shit met my skin it turned into brown, oozing liquid which, I noticed as I looked down at myself, was dripping down over my entire body in thick, steady streams.
And I remembered, "Ohhh, that's right. We don't do things like this."
We left immediately. Obviously. I couldn't even take my wet swimming suit off or get cleaned up first because I couldn't bare the thought of a fifteen minute battle for the bathroom, trying to scoot my dog shit covered body in between the people inside while my son shattered their eardrums (if you think it's loud listening to it outside, you should try listening to it inside).
We were there for just over half an hour. But the entire process took over three. Shane and I worked our asses off to provide some "fun," we were exhausted by the time we all got back into the car, and our children were more upset than they had been in a very long time. And, you know? Suddenly I wasn't that excited about moving over there either.
As we got onto the freeway to begin the long drive home, I have to tell you that, for a moment, I felt really really sad. And it made me think about all these terrible things, all at once, things that break my heart. I thought about the mother who let her Autistic son drown in their pool in Phoenix here last year. And about the Phoenix man who put his Autistic son in the car with him and drove off a cliff last year. And about the woman in New York who'd been waiting for respite care for nine years, who finally finished waiting and shot her Autistic son and then herself. These are just the recent instances I've heard about at support group. Who knows how many there actually are. This isn't just some little inconvenience for people. This is life and death stuff sometimes. And God I wish I could help. I wish with all of my wishes that I could make things better for Autism parents. But I can barely make things better for my own family. Oh God, my powerlessness sunk straight to the bottom of my stomach. And I began to cry.
As I sat back in the seat of our mini-van, just short of full blown sobs, I noticed that I was freezing cold from the air conditioning blowing on my still wet swim suit. And just then we must've rounded a bend because the bright sun poured in through the window, warming my skin instantly and drying the dog shit all over my body into an invisible, sticky film. And it made me laugh.
You know? The Buddha lived a completely sheltered and wealthy life until adulthood, upon which he came out into the world and discovered sickness and poverty. He was so disturbed by the things he saw that he went into a quiet cave and meditated for six years straight (a quiet cave sounds so awesome to me, I think that's why I remember this story), after which he came out and announced to the world that the nature of everything is temporary.
My son's Autism, and all the things that accompany that, seriously disrupts the life of our family. But it's temporary in that it's not going to last forever. Our whole family, in fact, is temporary. Time spent with specific friends is definitely temporary. And the places we live are temporary. Thinking about all that makes me want to appreciate things instead of being upset that they don't go the way I think they should, or that they always eventually change or end. It also makes me appreciate my family, and all of our thousand little idiosyncrasies, much, much more.
So why am I constantly trying to arrange our lives in certain ways? So that we live someplace in particular? Or so that we can hang on to particular friends? Or even so that we can be less lonely? What's so wrong, exactly, with being lonely? Because, in the big scheme of things, that's temporary too.
It seems like the more I try to arrange, the more I try to hang on, the more the universe conspires against it. So what would it hurt if I just let all of that go? What would it hurt to spend just one little lifetime being with Cale? And loving my family as much as if it was the last day I ever got to see them again? And loving my friends in the same kind of way, whenever I see them, without worrying about hanging on. Wow. That dried dog shit got me thinking about much, much better things.
When I got home I'd gotten an e-mail from one of our old summer camp friends. He's moved to Arizona, and he wants to hook up somewhere in between where I live and he lives and meet my family. Isn't that cool? I think it's been around fifteen years since I've seen him and I'm definitely looking forward to spending a little time with him. I'll be hiring a babysitter of course. I'll bring my husband and a short stack of photographs of our kids for him to meet. Because it'll be temporary, that's why.
