No Regrets

Well.  Summer's over.   I mean it isn't really over, it's not yet Labor Day.  Outside it's as steamy as a Turkish Bath and even the dogs are having dog days this August.  They are sleeping, listless in the heat and without the energy to bark. But I'm home.  I've left our summer cottage, driven back down south with reams of clothes and papers and food in freezer bags with melting ice.  I'm home and I'm grumpy and a little bit snitty.   Did I accomplish what I wanted to this summer?  I had lofty dreams about getting lots of writing done in the three hour stretch my kids were at camp, or the early mornings when i could sit by my computer with a ghetto latte (lots of microwaved milk not frothed and a tiny bit of java.) But I did.  I accomplished so much that I wanted to.  I hiked, I watched movies with my kids, I answered far too many emails and flirted with facebook, only to be driven back by the volumes of messages I didn' t feel like answering.  We finished that jigsaw puzzle of previous blog fame and we swam and laughed and cooked and ate.  But I didn't write.  Not much anyway. Every time I sat down to tackle something on my list, there was some kind of interruption.  And many of those interruptions were from my parents, most specifically my Dad.  I'd settle in front of the computer and through the screen door, cheery as a bluebird, I would hear his voice  call out to me "Helloooooooooo." For just a moment, a part of my heart would sink.  "I have three precious hours," the Type A part of my brain would scream.  And then the dutiful daughter part of me would muzzle it, put a pillow over those thoughts and push down.  And then they would stop.  I would stop.  "No regrets," I would tell myself.  "No regrets." As the summer progressed, my father and I fell into a regular morning ritual of coffee and chatting as he made me the half-way stop on his daily walk down to the general store to be fussed over by the ladies at the coffee counter.  Each morning was the same.  Ground Hog Day.  He'd stomp up the steps, come in, announce how winded he was from walking up the hill and then sit.  In the same tone I use with my children I'd chide him for not drinking enough water, put a full glass in front of him  and tell him to rest, maybe pull off his sweater as the day heated up. We'd sit and talk about the same things, the weather, when I was leaving, when my husband was coming, where the girls were.  I'd feel myself unwind, relax, the tension would leave my shoulders.  This was my Dad.  He has dementia which means that every week or month or so we can almost feel the little pieces of him slipping away, breaking off.  Dementa is a slippery eel. Some days he is more present and with it.  Other days he will have a hard time getting a sentence out.  He can often form the words, I think he knows them in his head, but they come out wrong or jumbled.  He hesitates a lot more now, more even than last month, unsure of what will come out.  In those moments I see the mask slip, the casual jaunty smile he wears and has always worn, of confidence.  Underneath the mask I see terror, pure, clean fear at what is happening and what the future holds. I am powerless.  I'm powerless to do anything as he asks me the same questions over and over in the span of 15 minutes.  I can listen and answer patiently and pour him some more coffee and smile at him in that loving way daughters smile at their Dads.  This much I can do. And as my mind flicks to all the things I need to get done, the dentist appointment to rechedule for my daughter, the school forms so Cathryn can play pre-season soccer, the college shopping list I need to put together for my son and the writing, always the writing, in the back of my mind, I force myself to relax. "This is what summer is for," I tell myself.  "It may be his last summer here and these moments, this time in the kitchen, these are the things that really count.  You don't want to have any regrets.  You want to feel secure that you spent the last good years letting him know he was safe, loved, cared for, before he slips away."  It's the very least my sisters and I can do.  It's the legacy of love. And so here I am.  Summer is over.  l'll be planning a trip to see both my parents soon in their independent living facility a state away.  But those visits aren't the same as summer.  Summer is the warmth of the dock, a cold plunge in the lake, delighted screams from the raft and all of our family around.  Summer is  freedom, roaming, his daily walk, the sunshine and the smell of pine and moon, of the July rains and my Dad's once carefully tended geraniums.  The other months of the year, lived out in their small apartment, make life seem diminished, circumscribed.  There are smells of new carpet and industrial cooking in the building.  It is a place to live, not a home.  It is not summer. I am home now, buried under a mountain of things to do.  But I have no regrets.  No regrets.

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A Three Stooges Day

After the failings of July weather, August burst out with brilliant blue mornings and clear, cool nights. I was racking up banner days with my kids; cloudless skies on the lake, a little canoeing, swimming with their cousins. Kicking back on the beach chair with a book, I could hear their squeals of delight as they played rag tag, throwing the wet piece of towel at each other and ducking under the raft.

I call these helium heart days. You go to bed with a lightness of being, fullness of day and a sense of completion. You’ve hit the mark as a Mom on these days, checked off most things on the “Most Wonderful Mom” list like “played with kids,” “meaningful conversation” or “maintained good cheer.” You know these days don’t come all the time, maybe not every week, and so you try to still them, to soak them in.

Coming back up to our cottage I spread out the towels on the railing to dry and turned on the stove to roast a chicken. I was determined to check the box for “healthy meal” on this day too. I loved this; loved the pace of summer, of not having anywhere to be that night, of knowing we would all open our books on the couch that evening or tuck into a movie under blankets.

And so to demonstrate my contentment, I did what most people do when they are happy. I let out a Three Stooges Curly “whoop-whoop-whoop,” as I was stuffing the chicken’s cavity with rosemary, onions and garlic. Truth be told, it was kind of a combination of Curly and Julia Child, inspired as I was by the French Chef to be pulling the bird’s goose-fleshy legs wide open.

“What was that?” asked my daughter Claire.

“The Three Stooges,” I said, casually binding the chicken’s legs together with string like a demure virgin.

“I’ve heard of them. I think we have the movie.”

“Well, let’s find it,” I said. “Every kid needs to know about the Three Stooges. Whoop- whoop-whoop,” and I quickly rubbed my hands on my head the way Curly used to do. My kids laughed.

They tried to imitate the Curly thing, but without a good example, the real deal, they had no traction. There was no Three Stooges DVD in the drawer.

“Let’s You Tube it,” I said. Honestly, what did we do before You Tube? Life must have been one giant game of charades. How did we function without the ability to view everyone’s pratfalls, oogle bad plastic surgery transformations or watch the woman walking down Fifth Avenue with her skirt hem tucked in her panties.

And so as I finished the dinner prep, boiled the beets and cut the tomatoes, the sounds of Moe, Larry and Curly emanated from my office computer. The girls were transfixed.

Heading upstairs with my glass of white wine to take a shower, I realized that amongst the slaps, whines, screams, kicks and whoop-whoop-whooping soundtrack, one sound was missing --- my kids’ laughter. My girls were watching, fascinated, but that slapstick kind of humor that was such a hallmark of the vaudevillian years was eluding them.

I had always sort of identified with the Three Stooges as a kid, being one of three girls. I was the oldest, Moe, the one starting the trouble and usually meting out the punishment. Watching a few of the clips, I’d forgotten what a complete bully Moe was, a serious tyrant, a dictator even, as seen through the eyes of my kids. But the expressions and the physical humor made me chuckle.

When it was almost time for dinner I walked in again to see them still both still mesmerized by the screen. That meany pants Moe was pulling Larry by the hair. And who was Schemp? Had Curly died? I couldn’t remember. Maybe he’d taken so much physical abuse that he had just keeled over one day.

“It’s really violent,” said Claire.

“And it’s black and white,” remarked Nora.

“Yeah, these shows were made even before I was born.”

“Wow,” said Claire. “That’s a long time ago.” I nodded seriously.

“Are they rated PG?” asked Claire. She was still stuck on the slapping, dragging, hair pulling and screaming part of the Three Stooges. Our kid’s did humor differently now. They had their own entire genre of “appropriate shows” that were educational. They learned other languages, how to get along, kindness and inclusion. There were Teletubbies and Dora the Explorer. Sesame Street taught them to count and read at an early age. Hannah Montana had her own identity and boyfriend problems to work out. There was absolutely, positively no slapping, hitting or boulders being dropped on anyone’s head.

“Use your words, Moe, not your hands,” I could imagine my Nora thinking as he popped Curly with an iron, screaming so hard his eyes bulged out of their sockets and veins stood out on his neck.

“That’s an outside voice Larry,” I imagined Claire thinking. But still they watched, with a combination of fascination and horror. Man, there went Moe again, swinging a two-by-four at poor Larry’s head. Well, that’s a brain injury waiting to happen, I thought as Curly’s eyes rolled back and Larry saw stars. I thought about all the things that used to pass for OK when we were kids, people on TV hitting each other in the kisser with golf clubs, no seat belts in the car, no bike helmets. Spanking was acceptable for the bad transgressions and the best ever was riding on the back of the station wagon, tailgate down, to get ice cream, legs dangling out over the road. All of this carefree recklessness I associated with my childhood. And I had loved it.

Sure, our kids were safer now and protected. We were smarter about so many things from diet and nutrition to political correctness and inclusion. As a generation of parents we had learned from our own parents’ mistakes and had gained from the knowledge of science, psychology and medicine that comes with the advancement of time.

But sometimes there is simply no substitute for the silliness of the “whoop-whoop- whoop.” There is simply no better, simpler, pure dumb-ass pleasure than the Three Stooges.

“Time for bed,” I called hours later. And when no one moved, I resorted to the technique my father had used in the good old days.

“See this finger?” I held out my pointer and Claire and Nora grinned, nodding. I had their attention now.

“See this thumb? “ they started laughing and running and in unison we all shouted….“See this fist…. You’d better run!”

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Looking At Different Abilities

I was taking a walk down a country road near my home when I saw a bright yellow “children at play” sign. Carefully written above the letters in deep black marker was the word “autistic.”

When I was growing up, I remember a family of deaf children who lived on my street. Near their house was a big orange sign that said “Deaf Child Area.” It was necessary that drivers know the children there would not hear their approach or the honk of a horn.

I thought back to that sign and how I had felt seeing it as a child. I don’t remember playing with those kids. I’m quite sure that they went to different schools, had different friends, didn’t mix with the neighborhood kids. Maybe they felt communication would be difficult or awkward. The sign always struck me as a kind of quarantine, setting the family apart. It stigmatized them in my young eyes.

Yesterday, as I walked past the bright  sandwich board sign set on the side of the road, I thought about what that mother must have felt as she wrote the word “autistic.” She had fears for her children’s safety, I imagined, and maybe she simply wanted people to understand if her children acted differently or didn’t react to passersby. But there was a kind of un-nameable pride in those words. The added word seemed to say “these are my children. I’m comfortable with it and you should be too.”

Maybe I felt this way because I knew the mother who had put up the signs. She has three boys, two of them autistic. She seems to have boundless energy and has devoted her life to her sons. Her world is circumscribed by their abilities, her marriage has been impacted and her social life is limited. I imagine that in the quiet of her home and the privacy of her bed there have been many bleak moments, mixed with triumph and pride.

The sign also made me realize just how far we have come as a society. There was a time when we swept these kinds of disabilities under the rug. They were shameful, stigmatizing and segregating.

I am proud of this mother for choosing to call a spade a spade. I have a hearing impaired daughter. Whe this disability is not anywhere as limiting as the level of autism my friend’s boys have, I have learned long ago you cannot measure people’s pain. We all ache equally for our children when the diagnosis is delivered. There are no blue ribbons for first prize in the “biggest martyr” category. Anyone with a child who has different abilities is my hero.

I’ve raised my daughter to be very matter-of-fact about her hearing. “I wear hearing aids,” she will explain, and she has chosen hot pink tie-dyed ear molds so that there can be no mistake. I know that when adolescence hits, it will be harder for her to crow about her differences. She will want in-the-ear hearing aids and perhaps take them off in certain situations when she is self-conscious. No child wants to be different, at least in that way.

The Americans With Disabilities Act went a long way toward legally giving people with disabilities rights. But to truly remove the stigma, to really help those with different abilities we need to all be comfortable with calling it as it lays. Denial, or choosing not to speak about it only continues to keep others shrouded in the cloud of “shame” that can accompany people with disabilities.

I recently wrote a cover story for Parade magazine about brain injuries and the promise of cognitive rehabilitation for recovery. I received a great deal of reader mail in support of the article. But it was, of course, the one dissenting letter that stayed with me. The reader told me how much he enjoyed the story until he got to the line where I said “brain injured people are often seen as “slow” or “retarded.” As the father of a grown Downs Syndrome son, he felt that by using these words I was insulting him and his family. In an email back to him I pointed out that by choosing those words I meant to underline how we stigmatize people with pat phrases.

I ached for this father. His son was in his 20s and yet he still felt the pain, perhaps even the shame that his son’s disability carried. As I wrote him back and assured him my words were meant to advocate for people like his son, I thought about all of the families across America who have braced themselves to feel the slight, the whispers, the child’s stare when they go outside their door with a loved one.

On the way back home from the walk, I passed the sign again and fought the urge to raise my fist in support. “Here is my child,” the sign said, “and this is what you need to know about him.” Slow down, pay attention and change YOUR behavior. There is a lesson in there for each of us.

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