Rachel Simon's Blog

We got out of the car in the dark. Despite the lights on the pathway from the parking lot, the only hint we had of the legendary magnificence that lay beyond the trees was an enormous cloud of mist. It hovered in the sky, beckoning like a party of genies just released from their bottles. Only as my new friend Linda led me toward the ridge until we could see the teeming waters of the river did I hear the roar of Niagara Falls.

I’d forgotten, when I’d arrived at the airport in Buffalo earlier that afternoon, that the event I’d be attending the next day was located less than an hour from one of the great natural wonders of the world. I’d been focused instead on my upcoming responsibilities at the twenty-second annual Developmental Disabilities Awareness Day, a hugely successful conference in western New York state. As the author of a memoir about life with my sister, Riding The Bus With My Sister, I’d been invited to give the keynote address, then run a workshop and sign books. I’ve done many such events, but as every person is unique, so is every conference. For one thing, DD Day, as it’s known, regularly attracts about 1,500 people, a more sizable crowd than I usually address. For another, the participants include so many adults with special needs, they might well outnumber the professionals, family members, and children with disabilities in attendance. I rarely see that kind of proportion, and for the whole flight to Buffalo, I was excited.

Certainly I know many adults with disabilities, from my sister Beth and her boyfriend Jesse to many individuals I have met when I speak. But I never cease to be amazed at how common it is for people who aren’t in the disability community to think that “person with a disability” equals “child with a disability.” The idea that the child will become an adult doesn’t seem to occur to them. Their thoughts, like special ed, seem to stop at age twenty-one.

My new friend Linda was on the committee that organized DD Day, and after she got me at the airport, then took me out to have dinner with others from the committee, she asked if I wanted to see Niagara Falls. I’d been there one night thirty years ago, but with out-of-towners like me, and we hadn’t remotely understood what we were seeing. Linda had grown up in this world, so when she offered to be my guide, I said yes.

In the dark, she continued to lead me down the pathway toward the Niagara River. I could see the rapids now, careening toward what she explained were the Horseshoe Falls, and although they were not yet visible from where we stood, and were better viewed from the Canadian side anyway, I understood that their massive power was the source of the mist. We wove through patches of tourists, listening to the screeching of frenzied gulls circling above the water, smelling fish.

We reached the railing. The river was only a few feet beneath where we stood, and in the dark, under a full moon, it coursed black and ghostly and faster than any river I’d ever seen. I could make out the horizon where it began, but had no way of gauging its depth. If Linda hadn’t been with me, explaining the geography before my eyes, I’d have thought that the ledge to our right was not the drop-off point for one of the most majestic sights a person might ever see, but the end of the earth.

A few years ago, I gave a talk for an agency in Erie, PA that provides specialized residential care for adults with developmental disabilities who might also be medically fragile. I met several adults in their group home, and was impressed at how full of life each was, with habits that made them happy and games they enjoyed playing and chairs they loved to sit in. When I came home, bursting with pleasure about this agency and these individuals, I told a colleague at the college where I was teaching about where I’d just been. He listened distractedly, then made a correction. “You mean children,” he said. “No,” I said. “They’re adults.” His face went blank. I said, “When children with special needs get older, they still need services.” His face stayed blank, and as I backed away from the conversation, I thought, Could he really not understand that children with disabilities grow up—into adults with disabilities?

When I encounter this attitude, I try to be sympathetic. I know that, despite the growing presence of adults with disabilities in the workforce, on television, and in the community, many people still think that “special needs” equals “children.” I also know this can be as true for people like my colleague as for young parents whose child has just gotten a diagnosis they never imagined they’d hear. I meet these parents a lot. They’ve just been thrown into a world that’s unknown to them. It looks dark, foreboding, and overwhelming. Where are they going? they ask themselves. How will they find their way? What could it possibly look like when they get there?

Beside the Niagara River, under the full moon, Linda continued to guide me along the railing. The Canadian side, she told me, bathed the Horseshoe Falls with colored lights, but all I could see as we moved was the mist. It so fully engulfed the Falls that we walked for many yards before we could see anything again. Then it was the river, now hundreds of feet below, and far downstream, the other falls for which this landmark is renowned. The American Falls were easier to see, but too far away to admire.

“I wish I could see all of this better,” I told Linda as we made our way back to her car.

“You’ll just have to come back in the daytime,” she said.

It sounded good, but how was I to do that? The next day was devoted to the conference, and my flight home was set for the following morning.

I forgot about Niagara Falls as soon as I went to bed. It did return briefly to my thoughts when I woke up, dressed for my talk, and made my way to the conference center. But as soon as I was enveloped by the crowd, I forgot even that I was in New York state. Instead, I was in a world that transcended all the boundaries, including ethnicity, class, and age. This is one of the great truths of disability: it can happen to any person, in any family, at any time. None of us is so special that we might never have special needs.

Some people, like, perhaps my old colleague, or parents newly entering the disability world, might find that truth frightening. As a sibling, I find it comforting. Yes, it means everyone is vulnerable. But it also means the human race has fewer divisions than we sometimes think. So friends, guides, even role models might already be around us, if we allow ourselves to see.

Then I was swept up in the day. I shook hands with dozens of adults with disabilities, many of whom were involved in the self-advocacy movement. I got on the stage and did my talk, looking out into a room of all ethnicities, classes, and ages. I gave a workshop, and attended others. I stood at the book signing table and hugged parents, siblings, professionals—and individuals with disabilities.

And here’s what I saw as the day progressed, all of it with people who had once been children with disabilities and grown to become adults.

If only every young parent could be here, I thought, as the day wore on. The fear would start to recede. The darkness would lift.

“So,” Linda said as the conference drew to a close, “do you want to go back to the Falls?”

We had just shuttled another speaker—a media advocate who’s the mother of a Hollywood actor with Down Syndrome—to the airport, and I was ready to get back to the hotel and collapse. But the sun was still up. And if I didn’t take this opportunity now, I might not get the chance again.

So for the second time in twenty-four hours, I stepped out of Linda’s car at Niagara Falls. The river was still a roar, and the falls were still a force. But now I could see that the water wasn’t very deep. I could see infra-structure I hadn’t noticed. I could see that Linda had become someone I trusted. Together we moved along the path toward the American Falls, until they were not too far away to admire.

“I wish everyone I know could see this,” I said. Then we looked out to the water and put our arms around each other, and I saw so much that I hadn’t known to see.

Last Wednesday, two weeks before my sister Beth’s fiftieth birthday, my phone rang. I saw her name on the caller ID and was baffled. It was only nine thirty in the morning, and she rarely takes her lunch break so early. I snatched up the phone, expecting her usual, sing-songy “Hi, Sis. Thiz Chatty Beth.”

Instead she said, “My side hurts.” Her voice had a gasping, panicky tone, as if she was holding back tears.

I sat up at my desk, on full alert. This is the opening to a call you do not want to get from someone you love, and especially not someone who needs a little more help to get through life. My sister Beth has an intellectual disability, and although she’s confident and self-reliant, has a boyfriend and an apartment of her own, and has carved out a very social life riding buses all day, every day, I know I need to help when she needs me.

I’ve always known that. She’s eleven months younger than I am. On her birthday we’ll be twins for the next month.

I kept my voice calm. “Does it hurt a lot?” I said.
,
“A lot. And I’ve been throwing up all morning.”

“That doesn’t sound good.”

“My aide’s coming to take me to the doctor.” She pushed the words out through what were obviously volleys of pain. “At ten.”

“Do you want me to come to you?” Beth lives a couple of hours away, even if I broke speed limits all the way there.

“You don’t have to. She’s taking me.”

“Maybe you should go to the hospital.”

“I’m going to the doctor!”

“Will you call me as soon as she sees you?”

“Yeah.”

“Do you want to stay on the phone until your aide gets there?”

“She’s gonna call so we can’t.”

“Then tell her to call me, okay?”

“Yeah,” she said, and she hung up.

I sat there, my heart pounding. I have no medical training, but these sounded like serious symptoms. I wanted to do right by her, but she didn’t tell me to come. My friends with kids have told me about calls like these, when their daughter or son phones in the midst of a crisis, not knowing what was happening, wanting to connect but not wanting their parents’ help, and maybe living too far away for help to come galloping immediately there anyway. My friends have told me about the fear, the feelings of powerlessness, the time-stopping descent into hell of not knowing how bad this might be.

Having a sibling with a disability is not like having a child. For one thing, Beth has always been there; unlike parents, I knew no Before.

For another, everywhere you look, a substantial number of the adults you’ll see are parents, so, as singular as your problems with your child might be, you can take comfort in knowing that you’re far from alone. But special siblings, far less common, might know few, if any, others like themselves, so the sense of aloneness, of having to figure it out on your own, of having no one except a handful of other siblings who truly understand, can be profound.

There are many other distinctions between having a child and being a sibling to someone like Beth, but the one I have the opportunity to notice most often is that sometimes Beth wants to me to do the things a parent might do, like pay for her meals when we go out, attend meetings with her aides, answer questions she’s too embarrassed to ask anyone else. But other times she wants me to be only a sofa-sharing companion while watching DVDs, a supermarket chauffeur who lets her buttons get pushed, an engaged listener to endless bus-related gossip, a tireless back scratcher who expects to get teased for eating soy yogurt, agrees to watch Shark’s Tale for the thirtieth time, notices that each toenail is painted a different color, and knows not to step on the purple rug—i.e., she wants me to be a sister.

Being the sibling of a person with special needs means being a shape-shifter. Which is why, when she didn’t ask me to come meet her at the doctor’s, I didn’t just don my parent cape, jump in my car, and fly up to see her. I stayed dressed as an ordinary sister and waited by the phone at home.

Years ago, I struggled with just about every aspect of our relationship. Then I rode the buses with her, and came to terms with many things about her, about myself, about the unique nature of the special sibling relationship. I recounted my experiences in a book, Riding The Bus With My Sister, which became a movie. But my story with Beth has, of course, continued after the last page and the final credits. That’s the real difference between being a sibling of someone like Beth and being a parent. The lifelong worry of After.

When I was a kid, After meant after our parents passed away. I knew, as did my brother and other sister, that we were expected to step in and be there for Beth after they were gone. As a child, I just accepted this as a fact of my life, but by my college years I’d come to dread it. How would I know what to do? What if we weren’t getting along, as was the case then? Why wasn’t I free to live my own life without this responsibility?

Then Beth entered the world of adult services, and we were lucky enough to find an agency that treated her well. They got her an apartment when she didn’t like the group home. They gave her good training in independent life skills. They hired aides who often stayed with Beth for years. With their support, I no longer had the worries I’d had about After. I could choose to be there After, but it wasn’t a requirement.

I chose to be there.

And then I started to realize there was another kind of After.

What happens After one of us begins to lose the vigor and health we’ve both enjoyed through our half century together? I hate to say this, but I’ve always hoped she would lose it first, so I could—if she wanted—accompany her to doctor appointments and keep her company if she grew weak. Yet she’s always seemed so robust, so unstoppable; even with a cold, even in a blizzard, nothing will keep her off the buses. What will it be like to watch the decline of the willful, energetic, Croc-addicted, Winnie-the-Pooh-adoring, always-in-my-life force of nature known as Chatty Beth? (She was Cool Beth for a long time, but switched to Chatty Beth when a new, favorite bus driver was amused by her talkative ways.)

I haven’t wanted to think about it. Not only can’t I imagine her not being there, always eager for a visit, a call, a letter, and money to buy her ice-cream. But I’ve known siblings who’ve lost their Beths, and have told me that the absence and grief is made all the harder by people who just don’t get it. One friend told me that, soon after her sister’s funeral, people said to her, “You must be so relieved.” She wasn’t relieved at all; without her sister, she felt forlorn, and given that kind of reaction, she felt abandoned.

It’s ironic. Being a sibling of a person with a disability means always feeling connected to someone else. Yet because of the way our society thinks of that someone else, it also means feeling far apart from others.

Fortunately, because of my book, there are hundreds of thousands of people who do think about Beth. Many of them are also siblings, or parents, of people with disabilities. Or they have disabilities themselves. And they know her life is worth as much as any other life, and would never dream of saying, “You must be so relieved.”

Yet there I sat, after she’d hung up, feeling all alone. I wasn’t at her side as she hurried to the doctor. I wasn’t speeding down the highway to meet her at the hospital.

Only later did I learn that I wasn’t alone at all. When the day had begun, and she’d insisted on getting on the bus despite the pain in her side, her bus drivers took stock of the situation. When she began to throw up, they urged her to go home, call her aide, see the doctor. When her aide came, they rushed to the doctor. When the doctor saw her, she sent them to the emergency room. When Beth called her boyfriend from the hospital, he rode his bike right there.

I learned most of this a few hours later, when another one of Beth’s aides began calling me with updates. Over and over she called, as every little piece of news developed. That’s when I found out that Beth had many people who’d been ready to help out. That’s when I found out that, after an early suspicion of diverticulitis and the discovery of an excess of white blood cells, and then a CAT scan, an IV, and morphine for her pain, her aide and her boyfriend stayed by her side. She wasn’t alone.

And, because of the kindness of her friends on the buses, and the professionalism of the people who work at her agency, and the devotion of her boyfriend, neither was I. I might have been sitting alone at home, holding my breath. But I was one of many who encircled her, waiting for the answer, hoping for the best.

Finally, at seven o’clock, she called. This time there was excitement in her voice. They were releasing her, she said, and she couldn’t wait to get home. Her aide got on the line and explained that Beth had had a kidney stone, which she’d passed while she was in the hospital. She was also found to have a slight case of pneumonia. Oh no, I thought, imagining her blasting onto the buses the next morning. But then I learned that, when Beth called a bus driver to tell her, she was told she simply had to stay home the next day and fill the prescription the hospital gave her and take it easy and that was that. And so, Beth told me, she would.

I went to see Beth a few days later. She seemed a little lower in energy than she often does, though I’m not sure if that was because of the pneumonia. In fact, one of her drivers said to me, while I was there, that maybe it was a misdiagnosis, because, after her one day off, Beth had gotten back on the buses and ridden with her usual gusto. The downshift I saw in her energy was probably more related to her having fallen over an uneven sidewalk when she went out to get the prescription filled. She’d hit her forehead and gashed her knee, which still hurt. I felt a surge of worry, then learned that she’d applied Neosporin and bandages.

“How did you know to do that?” I asked.

“A driver told me.”

So as of today, it seems we’ve pulled through. There will be other times ahead, I know that. And maybe the next one will hit me instead of her. But right now, when I think about the Afters that will come, I know she won’t be alone—so I won’t be, either. Some people just get it. They might not be siblings, or even parents. But whoever they are, they know what matters. They know not to step on the purple rug. They know not to ignore the many-colored toenails. They know not to toss around words like “relieved.”

I stood on our front porch, waiting for the vet to arrive. It was a chilly Saturday evening in May, though the wind gusted like November, sweeping old leaves up into the air and down the street, twirling them out of my sight.

Inside the house, our cat Peach lay on the kitchen floor, where she had lain for much of the last day. My husband Hal sat beside her, stroking her fur, cooing consoling words. She was fifteen, and her long-haired, calico coat was as beautiful as ever. But her plume of a tail, once a flagpole of merriment as she bustled down the stairs to greet us hello, stretched flat on the floorboards, and her eyes, which had gazed into Hal’s so many times with a look of unconditional adoration, stared out into nowhere, unfocused.

We didn’t want to believe her time had arrived. Yet even as we hoped the vet would say recovery was still within grasp, even though we knew she wanted to hold onto her life, we knew she would not revive.

Her decline had begun a few years ago. That’s when our cheerful chatterbox with the insistent friendliness and fill-up-a-house personality, whose dainty ballerina turnout, combined with a sashaying gait, made us call her Miss Marilyn Meow, added some new and unwelcome behaviors to her repertoire. She howled loudly, peed outside her cat box, drank water constantly, lost lots of weight, and ran about until she collapsed into the deepest of sleeps.

After many visits to Dr. Coogan, the softspoken veterinarian who, it turned out, every pet lover in our neighborhood called their own, we learned she had hyperthyroidism. Increasingly common in cats, with unknown causes, hyperthyroidism will ultimately lead to kidney failure. There is only one medication that might help, and we tried it in pills, pill pockets, liquid, and a gel we applied to her ears. But it made her sleep all the time, or throw up, or have allergic reactions. So about half a year ago, in the fall, we decided to take her off the meds, and let what would hapen happen.

The wind rushed down our street with a force I hadn’t seen since around the time we made that decision. It tipped potted plants onto their sides and spilled out the dirt. It snapped strong young branches off trees.

Hal came up beside me, and put his arm around my shoulder.

He glanced at the trees on our street, their leaves chattering in the gusts. “Such a windy day,” he said. “Somehow it seems appropriate.”

The graph of Peach’s health had been sloping down for months, but it was gradual. The bottom seemed far away.

Only two nights ago had we reached the steep drop down. We didn’t realize it at first, because she and our other cat, Zeebee, had spent the day romping and sleeping in our small backyard, and in the neighbors’ yards across our side alley. When dusk fell, Zeebee came in easily, but for awhile we couldn’t find Peach. Then we located her, perched on the edge of a neighbor’s tiny fish pond. Since her illness, she’d drunk water from this pond. That night, she wasn’t drinking.

A few hours later, at four in the morning, she woke us with a plaintive cry. We found her in the bathroom, a place where she rarely ventured, and after we brought her to bed to comfort her, she climbed out, made her way downstairs, and laid beside her water bowl. I’d heard that’s one of those bad signs, so we tried a trick we knew of giving her ice cubes and encouraging her to lick. She didn’t lick.

At sunrise, Hal called Dr. Coogan. He’s the kind of old-styled vet who’s cut from a cloth rarely made anymore: he has a gentle, caring demeanor, sees patients the day they need help, and understands that animals have the capacity to enter the souls of those who love them. He told Hal to bring Peach in, where we learned she was severely dehydrated. For a few hours he gave her fluids, then released her. But when Hal brought her home and set her carrier case on the floor, she didn’t move. We urged her out, and saw her legs were wobbling. She laid on her side on the floor. Hal sat in a chair and brought her to his lap. “This isn’t looking good,” we said.

That was Friday. Now it was Saturday. The journey through Friday night had been a march into dread. Will things somehow turn around? When should we call the doctor again? How can we go on without our mirth-making, dustball-producing, quilt-kneading Miss Peachie Pie?

We didn’t sleep, thinking instead about how, when Hal was single fifteen years ago, he found a shriveled, lonely, quivering cat in his backyard in another city. She had a collar but no tags, and somehow, for reasons we would never know, had gotten separated from her home, and taken refuge under a concrete bench outside Hal’s back door. He’d recently said goodbye to his first feline soulmate, Woody, who’d also had hyperthyroidism, and died at age twenty-three. So his house was empty and his heart was ready, and when he lured this lost, pathetic looking creature into his warm kitchen, she moved into his life as well.

She found him, and a paradise beyond any she could have ever dreamed of—shelter and food and rugs and beds and warm laundry and nightly brushie and nuzzly-cuddly-giggly-fur-addicted-nickname-minting-cat-dancing companions—became hers.

There were intrusions in her paradise. Moves to a few new residences, with all the accompanying changes in routines. The arrival of a black and white stray, Zeebee, who Hal insisted we take in a few years ago.

But mostly Peach had a gloriously happy existence. And she repaid us by winning over the hearts of everyone—friend, neighbor, even new wife—who encountered her. They called her “Mouthy” for her talkativeness. Everyone marveled at how she’d speak whenever you waved your arms near her, like the electronic instrument of the theramin. Neighbors discovered her boldly exploring their houses when their back doors were open. They saw her appear on their back porches whenever they were barbecuing, snatching up any morsel that fell from a fork, earning her yet another nickname, The Hamburglar.

Her eyes were smart. She knew her name. When we learned that Delaware had declared our state dessert to be the peach pie, we laughed and said, “It’s true.”

Dr. Coogan circled our block twice before he was sure he was at the right address. I wasn’t sure what I was expecting, but it wasn’t an older, white van, the kind families take for long vacations. I wasn’t expecting him to get out in shorts, a t-shirt, and a baseball cap. For a moment I wasn’t even sure it was him, except that when he got out, he held a cardboard cat carrier and a leather medical bag—the kind I’d seen only in old television shows, when small town doctors paid house calls.

Who pays house calls anymore? Certainly not doctors. Probably not vets.

Yet when Hal called during Dr. Coogan’s office hours Saturday morning, saying Peach had shown no improvement, and in fact hadn’t been able to hold the fluids she’d received the day before, Dr. Coogan said we didn’t have to make any decisions just then. Yes, his office closed at noon on Saturday, but here was his home number. We could call whenever we needed him over the weekend. Hal asked if there was a chance Peach could come back. Dr. Coogan said it was remote. But, he added, we could wait and see. And if the time came when we felt decisive—and, he emphasized, emotionally ready—he’d come.

So Saturday we sat vigil, waiting and seeing. We began on the kitchen floor. But the morning was sunny and warm, and, aside from being in Hal’s arms, the thing Peach liked most in the world was being in our backyard.

With great care, we carried her outside and set her on the grass. She laid limp. Hal brought out his guitar and serenaded her. She sat up. We called neighbors who loved her. Susan, who’d named her “Mouthy,” came over and stroked her coat. Jen, whose yard backs onto ours and who often found Peach on her porch, said Peach felt like her cat, too. Kelly and Dave expressed sympathy over our shared fence. Hal’s parents called. My father called.

But there was a moment in the midst of all the goodbyes when hope returned. Peach’s favorite place in our yard was the Japanese maple tree, under which she would sleep for hours. And after several hours outside when the most she could do was raise her head, she somehow roused herself to stagger across the yard, jump up and over the foot-high slate border of our garden, and collapse beneath the branches of her tree. There she slept in her beloved spot, and we thought, How was that possible? Maybe she was coming back!

The winds came up then. The branches started snapping.

She crawled out from the tree but could walk no more. “I think she wants to go in,” Hal said.

We brought her to the sofa. I knew the decision had to be Hal’s—he was her true love, and she his second feline soulmate. I was her breakfast feeder and daytime playmate. But I was not the center of her universe.

Hal said, “Let’s wait until tomorrow morning.”

I waited fifteen minutes, and I said, “Why?”

He leaned over and pressed his face into her fur and mumbled their secret language, the one they’d shared since he rescued her from the concrete bench. He had waited a few hours too long when Woody died, and had watched the poor animal suffer in his last breaths. He didn’t want that to happen again. Yet it was clear Peach still loved life. And he—and I—loved her life, too.

Then he lifted his head. “I’m calling Dr. Coogan.”

Dr. Coogan came into our living room. “We’re still wondering,” I said, since I knew Hal could not. “Let me see her walk,” Dr. Coogan said, and when Hal set Peach on the floor, she just settled right where she was.

He said, “Her breathing is labored. She has no more than twenty-four to forty-eight hours left, and they won’t be easy ones. I think your decision is the right one.”

So we brought her to the coffee table and held on. And he explained everything before he did it, and was kind and gentle. And the life left her quickly and easily, because she was already so close. And he closed her eyes, and we placed her in a box. “Now I’ll leave you to your grieving,” he said, and he left. And we cried.

The next morning was cold and the wind was still autumn-strong. Hal dug the grave in the backyard, in a spot close to Peach’s tree. We cried and cried and set the box within. Then he covered it with dirt.

We’d thought of getting a marker of some kind. But then we realized that, sitting across the yard was a very large rock, left over from several tons of stone we used, not long ago, to build a stone wall in our yard. The rock was calico-colored, we suddenly realized, and so Hal carried it to the covered grave and set it on top. “Should we say anything on it?” I asked. We both knew the answer, and as we held each other, crying, we also laughed. “State dessert,” we said, looking down. “The Peach Pie.”

The house is quiet now, and Zeebee is just beginning to search for her friend. We cannot tell her Peach is gone. But just a few moments ago we saw her sitting on the back steps, staring out to the rock.

We look too. The wind still hadn’t settled down, and we’re waiting for May to warm up again. We know we were lucky. Hal had fifteen years with one of the greatest cats of all time, and I had nine. We were given many months, even years, to adjust to her decline. We had the presence of mind to make a decision before her suffering began. She said goodbye to her friends. She spent a final afternoon under her favorite tree. She had a veterinarian who was exactly what a veterinarian should be.

But as much as we wish it would, luck doesn’t balance out loss.

We miss her so, and we always will.

Every wedding is a lacework of stories.

The threads are long and delicate, having survived the hopes and disappointments of previous romances, the fierce friendships of youth, the familial realizations of adolescence, the giddy playmates of childhood, the dependent clasping of infancy. But they don’t stop at birth; every wedding extends far back in time, to relatives known and unknown, whose choices—visiting a particular matchmaker, moving to a new part of the world, taking up a certain line of work—set the course of the bride and groom’s lives. Every wedding, too, encompasses the dreams and disillusionments of the guests who come to the day hoping the happiness they’ve found, or for which they’re still searching, has come to the couple before them.

All these stories come together on a wedding day, and even though no one in the room knows all of them, we see the interweaving occur in front of our eyes, making something beautiful that has never existed before—and, if all goes according to plan, that will never fray or fade.

This is what I thought last week, when I was the matron of honor at my older sister’s wedding.

I didn’t think it on the plane ride from Delaware to Phoenix. My husband Hal and I were caught up in the logistics of seating assignments and arrival times, the pleasures of a layover in my favorite airport, the discomforts of turbulence (for me) and a migraine (for him). Nor did I think it in the two days we had before the wedding, when, having recovered from the flight, we took walks through the sunny valley, trying to remember the names of the plant life we were passing, wondering what words the locals use to describe the brown mountains.

I only began to think about it at the dinner for a dozen friends and family, held the evening before the wedding, when the conversation turned to what advice, if any, each couple at the table would give the almost-newlyweds.

“Forgiveness is important,” one couple said, giving each other knowing glances.

“Remembering that the goal of any argument is win-win, not lose-win,” added someone else.

“Having the ability to laugh at yourself,” said another.

I looked around the table, and understood that we were hearing conclusions reached after long, complicated stories, just like what happened with Hal and me. Then one person recalled how hard the early years of their marriage had been, after their two spools of stories netted together, and they discovered many glitches and snags.

Hal and I discovered the same thing when we laced our lives together. But in our history, that was before we took our vows, in the thirteen years (yes, you read that right) when we lived together. In fact, our imperfect union led us to break up, and only after six years had passed—six years when we each went through many changes—did we come back together and get married. Talk about a lacework of stories when we stood before the justice of the peace!

Our path to marriage was unique, though what couple’s isn’t? Certainly not the people sitting around me at the table. Certainly not my sister and her fiancé.

But none of this really hit me until the ceremony itself.

It was to be a modest gathering, held on the covered terrace of an Italian restaurant, with forty guests. Perhaps because the bride was fifty-two and the groom sixty-one, or perhaps because they prize their network of friends more than ostentation, the flowers, photography, and cake were to be handled by people they’ve laughed, cried, and yardsaled with for years. Hal was given the task of pressing the buttons on the iPod. An acquaintance from my sister’s spiritual group would be administering the vows.

A few hours before the big moment, we met for a rehearsal. Then the bridal party of four drove back to the hotel and got ready.

The bride’s dress, which was sleek, sleeveless, and violet, had been purchased at Ross Dress for Less. The dress for the matron of honor (me), a loose emerald silk two-piece, was sewn by our stepmother. The other two women in the bridal party—the groom’s grown daughter and six-year-old granddaughter—wore blue and purple, respectively, their dresses from Victoria’s Secret and JC Penney.

My sister produced a box with a bouquet for her and me. She placed a wreath of lavender flowers on the granddaughter’s head.

Then we drove back to the restaurant, and parked, as planned, in the back. After two days of wind and cool temperatures, the evening was breezeless and warm. We lined up, hidden behind a corner, the sun not yet set, the guests taking their places on the terrace.

Hal pressed the first song on the iPod. The groom’s favorite musical group is the Carpenters, so the first song was one of theirs, “I Just Fall In Love Again.” As the bridal party stood waiting for our cue, the second song, I imagined the groom and his best man doing the same, on the opposite side of the terrace. In the spirit of colorful frivolity, they both wore purple shirts. The groom also wore a tie chain with the icon of his engineering honor society. An engineer by education, he’s now a defense systems analyst. He was trim and fit in his suit, and his dark hair was neat as always.

Then Hal began the second song. This was by the bride’s favorite group, the Beatles, a preference I happen to share, and as “In My Life” drifted softly over the terrace, I poked my head out of hiding.

There was the woman performing the ceremony, taking her place in the designated alcove on the terrace.

Then came the groom, smiling right at me, walking with his best man.

Then came me, walking toward them, bouquet in hand, cameras flashing beyond the corner of my eye.

And then my almost-brother-in-law’s face lit up. I turned around, and there was my sister, looking more beautiful than I’d ever seen her.

Accompanied by the groom’s daughter and granddaughter, she came to the alcove. The three of us stepped aside. The best man stepped aside. The song came to its end.

And then, after a brief preliminary by the woman running the nuptials, my sister and her almost-husband produced sheets of paper on which they’d written their own vows.

I’d of course known many of my sister’s life threads, but that’s when I remember some of his. His first marriage, which hadn’t gone well, resulted in the daughter beside me. His second marriage, filled with love and respect, ended tragically, when his forty-four-year-old wife died suddenly of a stroke. He then grieved. He tried to date but nothing clicked. He moved to Phoenix to be closer to his newly married daughter and her future children. He settled in, buying a nice house, working at a job that suited his talents.

Then one day after eight years had passed, dearly wanting to talk to his wife once more, he contacted a psychic he’d seen portrayed on television, Allison DuBois. They set up a phone call, then talked for a long time. Most importantly, she impressed upon him that his wife wanted him to have the courage to move on with his life and to be happy again. His wife wanted him to find somebody new. The call left him ready to embrace the next chapter of his life.

Only a month later, my sister paid a regular visit to her financial advisor, a woman, assisted by her daughter, who she’d seen for years. My sister had begun working with the advisor after her divorce from her first husband. She’d told the advisor stories of the men she’d seen since: nice men lacking in ambition, including, for the most part, careers.

After the session ended and my sister left the office, the financial advisor started to think about another client, a defense systems analyst, who was scheduled to come in the following week. She went into see her daughter. “I think these two clients would enjoy each other’s company,” the advisor said. “What do you think?” The daughter immediately said, “I think so, too.”

So the financial advisor played matchmaker.

And my sister met the good man she’d been wanting so long.

And the defense systems analyst met the partner he’d been craving.

And romance enveloped their lives.

The vows complete, my sister and her groom turned to the guests. I turned too, and saw forty smiling faces, forty clapping pairs of hands, forty sets of stories. I watched everyone, and thought of all the histories I knew, and the many I didn’t, and how each of us hoped for this couple to have the best of all we’d ever had, and none of the worst.

Then I saw Hal rising from the iPod with tears in his eyes. Our gazes locked, and the moment froze with it. All of us together, in our messy jumble of losses and dreams, pasts and presents, lessons mastered and lessons just begun. Witnessing love’s needle stitching order into our lives. The glitches might come, the snags might appear. But maybe not. Maybe everything will stay just as it was right then: a beautiful mesh, a perfect design, a delicate lace that’s impervious and strong because at last these lives are woven together.

I cut my engine in the church parking lot and looked around. Most of the spaces were taken, and I was glad. It was the one heartening detail I could imagine on this otherwise disheartening day.

I am not a very experienced funeral attendee. In fact, I’ve gone to fewer than a dozen funerals in my fifty years. But my impression has always been that, of the many ways we can count the measure of a life, one of the most obvious is the fullness of the church when the world is bidding us goodbye.

There are certainly exceptions, like when my step-grandfather died, and everyone he’d loved, aside from his family, had already passed away. But the woman whose funeral I’m here for was only forty-one, in the prime of her life, and until the cancer grew too debilitating, she had worked at a bank, supported a dance organization, enjoyed the company of family, spent time with her friends. I’d wondered if she’d meant as much to them as my colleagues, family, and friends meant to me, and I could see, as I got out of the car, that they had.

This was welcome news, because I had not known her. I was here because of my friendship with her father. He was an artist, and since I’d met him seven years ago, he’d been struggling to cope with the death of the youngest of his five children. Today he’d be burying the oldest.

I held up the obituary I’d printed from the newspaper. The picture at the top was the first I’d seen of her, and since she wasn’t smiling when it was taken, and the text included only a succinct resume of her life, I hadn’t gotten a sense of her personality. I am a reader of obituaries, so I know they often convey such praiseworthy traits as religious devotion, strong work ethic, or affection for golfing, but rarely does the sum of the self become apparent, and this time was no exception.

So it was meaningful to see that the lot was full. Every person I saw walking toward the church doors was another clue to the daughter I would never meet. There were the women with the lithe bodies of dancers, the woman in medical scrubs, the young couples. If only I could speak to each of them, I could come to know her better.

But I knew I would not disturb their private grieving. Everyone was young, their lives lying ahead. I remembered how I felt myself, when a college friend died when we were twenty. Just about every funeral is hard, but the funerals of the young are harder.

Especially for the parents. And especially for already-grieving parents.

When my friend called to tell me that his daughter was gone, his voice seemed dizzy with suffering. He’d lost the youngest child, a son, suddenly, in an act of violence by a stranger. I met my friend a few years later, when he read a book I wrote about my sister and, seeing in it a long struggle giving way to hope, asked if he could paint her portrait. In the months that followed, he worked from photographs, sent me sketches of his ideas, and finally invited me to meet him at an art opening. When I got there, he showed me a portrait of a handsome young man—his son, he told me—and then he explained the terrible circumstances of the boy’s death. Ever since, I stayed in touch, visiting my friend in his studio, meeting for coffee, writing letters. I met two of his remaining sons, though not his only daughter. There seemed to be no hurry. Lightning can’t strike twice, right?

Many people mill about the lobby of the church. I spot one of the sons I’ve met, and go over to him. Like his brothers, who I will see over the next hour, he is composed, soft-spoken, gently in charge, and acting in unison with his brothers. He greets me, then guides me through a series of framed photographs that are propped up on a table, introducing me to his family. Most faces are from long ago, with all five children smiling. I recognize the young faces of the two sons I know. My heart thumps at the faces of the two children who are gone.

Lightning, of course, can strike many times. My friend was himself diagnosed with cancer shortly before his daughter. They underwent treatment at the same time, the three sons taking time off from their jobs to shuttle father and sister to the doctors. The father recovered. The daughter did not.

When I learned that she had died, I called my husband. The funeral was a few hours away; I’d lose a day or two of work if I went. “Should I go?” I asked him. He said, “You know the pro’s. What are the con’s?” “There aren’t any con’s,” I said, and there was my answer.

You can shake your fists at the sky and ask how such things can happen. But as I lifted my eyes from the photos, I saw another son, with his wife. They were speaking to other guests, and the wife was very pregnant. “When’s the baby due?” the guests asked. “Today,” the wife answered.

I made my way to the chapel where the viewing was being held. My friend was there, and his face brightened when he saw me. We hugged and talked about his daughter and his health, as I’d expected. But he also told me he hadn’t been able to paint for weeks. He was afraid his pain was so great, he’d never be able to reach inside himself to find art again.

I didn’t tell him, “Of course you will.” I didn’t know that. I’m an artist, too, so I’m well aware of the elusiveness of creativity. I just held his hand and listened.

I sat alone through the service, wondering if he was finding comfort in the hymns and prayers, in the thoughts of everlasting life. I hoped he was, and tried to remember what he’d once told me he felt about religion. We’d discussed it over coffee—I could even remember the booth we were sitting in — but no matter how hard I tried, I wasn’t able to call up what he’d said about God, about faith, about what became of the soul after the last breath. He’d shared all that, yes, but at the time there seemed to be no hurry to commit his thoughts to memory.

So instead I looked around the church, and was struck, as I’d been in the parking lot, by how many people had come. And again, I thought about the measure of a life. If it can be counted by any number, then that might well be the number of people who care enough to see us off. But it might also be the number of dances danced, or times we laughed with friends. From what I could see, by any of these measures, this young woman had lived a rich life.

Maybe my friend would see this, and it would give him some comfort on this hardest of days.

Yet as the service drew to a close, and the pall bearers surrounded the casket to bear it down the aisle, I knew that comfort in this moment would do little to ease my friend’s suffering. I knew too that the number of people who were in this church meant less to him than the number of days his children had lived on this earth. I wished I could reverse everything that had happened, and give him the hundreds—the thousands—of days that hadn’t been given to them.

When the guests filed outside, and I saw him standing on the curb near the hearse, looking bewildered and fragile, I came up to him. The sun was beaming down onto us, and I gave him a huge hug. Behind him, I could see his three sons, who would, I knew, go through the rest of their lives with a bond that no one would break. Along with them was the pregnant wife, who would soon—maybe even later that same day—give birth to my friend’s first grandchild.

I closed my eyes, and as we tightened our hug, I thought about how, when the skies darken and the worries uproot everything in sight and lightning shoots down from the sky, none of us has the power to stand in the way of the bolt, catch it in our hands, and hurl it away. All we can do is stay together through the storm, holding each other’s hands, and hoping the sun will return.

How do we measure a life? I wondered this as my friend and I let go in the bright light of the April morning. Is it the number of people whose lives we’ve touched? I’d thought that, when I pulled into the lot. But now, as I looked into my friend’s face, I thought, The measure of a life cannot be counted with any numbers. We measure a life by the depth, the strength, the endurance of the love we give to others. It doesn’t have to be a whole lot of others, either. It can be the love we give to just one other, at a time when he really needs someone there.

I walked back out to the parking lot, looking at the other guests getting into their cars. Her life was short. But maybe she touched just one of these people at just the right moment. Even if her days were far too few, maybe her love was complete.

When my three siblings and I were kids, living with our mother, there were only a few activities we did outside the house as a family. We saw movies (usually at drive-ins), got ice-cream (usually at a local family restaurant), and went bowling.

We were champion commentators throughout a movie. Hence, the merits of drive-ins. (Being able to take the dog was a plus, too.)

We were champion devourers of ice-cream, as long as we each got our favorite flavors, which ranged from chocolate to coffee to black raspberry. Hence, that one local family restaurant.

But when it came to bowling, we were clods. The balls were heavy. We dropped them. They careened into the foul lanes. Occasionally we did hit pins, though only when guided by the hand of luck. Skill sat off on the sidelines.

I remember scores of 27. Once, one of us bowled a 1.

Not surprisingly, when we grew up, although we continued seeing movies (in theaters) and eating ice-cream (or less calorie-loaded cousins like sherbet), we left bowling behind. We were oafs. We were so inept that bowling was sheer comedy, an opportunity to laugh at ourselves as a family.

Many years after I had last fit my fingers into a bowling ball, I read the groundbreaking, data-packed book Bowling Alone, by Robert Putnam. You’ve probably heard of it, or its premise: American were once avidly involved in social groups, from organized gatherings like Rotary and bowling leagues to informal visits with friends. But increasingly we don’t join groups and don’t see friends. In other words, we figuratively, and sometimes literally, bowl alone.

Putnam provides many reasons for this decline, most of which we could name: more solitary attractions like TV and computers, changes in family structure and work commitments that ask more of our time, a suburban environment where large lawns separate neighbors and cars are required to reach nearby stores.

Bowling Alone made me think about why I don’t belong to any organized groups. Pretty much all the reasons Putnam gave applied to me at that time. In addition to living in car-oriented suburbs, I was single, childless, lived alone, and had multiple part-time jobs. I supported organizations with donations, but lacked the time—and maybe the necessary level of passion—to give them my presence. I did better with friends, but wondered if I’d ever become someone who joined.

I felt guilty. Here I was, a voting, law-abiding citizen who always returned library books on time, held doors for strangers, and was consciously trying to be the good I wanted to see in the world. Yet for the most part, I was a lone bowler. Actually, I wasn’t a bowler. The thought of bowling gave me such feelings of incompetence that joining a league was out of the question.

The same, in its own way, applied to most other organized gatherings I could think of. I’d try to envision myself as an attendee and I’d imagine myself feeling socially clumsy. I was part of the problem, and I’d just have to accept that.

Then in 2001, I got married. My husband lived in an old, artsy, urban neighborhood in Wilmington, Delaware. It had narrow streets, generous porches, and a mix of ethnicities, ages, and sexual orientations, and pretty much everyone agreed that we were an actual community. Dog walkers, porch sitters, backyard gardeners would pause to chat, trading the news of their lives, commenting on the news of the day. Neighbors would help neighbors shovel snow and rake leaves. We would attend each other’s art openings, admire each other’s porch gardens. And the parties! Block parties, progressive dinners, backyard celebrations of seasons. I learned what it was like to belong.

And I realized that part of why I had, figuratively speaking, bowled alone was I hadn’t naturally found myself in a group that suited me. In this neighborhood, I could chat at the curb or drift into my house, attend parties or stay at home, make dear friends or keep it to acquaintances. I could do as much or as little as I wanted, the way I wanted. And so could everyone else. If our balls went into the gutter, no one cared.

It was luck, again, that guided my hand. Or may be it was something a little wiser than luck, because it gave me what I needed, and what would make me be the good I wanted in the world, without my even needing to try.

If you’d like to read about how this sense of community changed the course of my life, go to my most recent memoir. In hardback, it’s titled Building A Home With My Husband, and in the paperback, which comes out in May 2010, it’s titled The House On Teacher’s Lane. (Yes, it’s the same book, but with a different title and cover.)

You can also see my neighborhood in these two videos, both made by our neighborhood videographer, Tom Davis, whose professional name is TCDavis. The first one is from our block party this fall, and the second from the blizzard this winter. Both videos are about four minutes long, and give a good feel for the architecture, friendliness, and diversity of our community.

When I got married nine years ago, my husband Hal was deeply connected to Peach, a long-haired calico who had taken refuge in his city backyard several years earlier. Hal is a total softie when it comes to animals, and especially cats, and when he saw her, shivering and cowering beneath a bench in his tiny back yard, he was himself recovering from the loss of his previous cat, who’d been at his side for twenty-three years. So he began a campaign of luring this pitiful creature into the shelter of his warm apartment, and with several bowls of food spread out over a few days, he succeeded.

Soon she trusted Hal enough to let him clean her coat, at which point he discovered that she wasn’t the skinny, blackened tomcat she’d appeared to be, but a slender, gorgeous lady who walked with hips swiveling and paws turned out like a ballerina. He named her Peach, because her white and orange fur looked as luscious as peach and vanilla ice-cream. In no time at all, she’d become his constant companion, except for the moments when his attention strayed, and then she would sprawl seductively on the floor, belly up, gazing coquettishly toward his face until he happened to glance her way. The second his eyes met hers, she’d cross her front paws at the wrist, her final move to melt his heart. And it did; he’d drop to the floor and nuzzle her, and she’d make happy sounds in return.

When Hal asked me to marry him, I knew I’d also be marrying Peach. I too would come home to the ritualistic greeting, when she’d bound down the stairs, squealing with glee, spring up to the top of the sofa, and ready herself to get hoisted onto a shoulder. Then there would be the display of affection and attention-seeking she’d do for guests, when she’d place herself in the center of the action, and roll about with such abandon, Hal’s friends nicknamed her Roly-Poly. And I’d have to get used to the smart look in her eyes, which sometimes struck me as professorial, especially when she’d sit at the back door, head cocked, demanding with a glare that we let her into the yard.

I am not an easy sell with animals. I like them just fine, but for reasons I’ve never understood, I don’t open my heart for awhile. Somehow, I see them as just a cat, just a dog, until they assert their personality, repeatedly and insistently, and charm me into submission.

Peach began right away. To her credit, she didn’t resent my arrival. One of the many virtues of pets is their rather quick acceptance of new situations, and their efforts to make the best of whatever fate has handed them. Another is their ability to pick up on the overall emotion in the household. We were newlyweds, blissfully happy. And so, therefore, was she.

And so she did win me over. It happened in our first week of marriage, when Hal was giving her her nightly brushie. All he had to do was hold up the brush and she’d hurtle onto the bed and catapult herself over to her special brushie chair. Oh, and then the rolling and dive-bombing and chin-marking of every available surface! Oh, and then the sound of ecstasy: rrruh! It was unbridled delight in life, the same as I was feeling. She won me over because she was herself—and also because she was me.

Soon, with the two of us inventing terms of endearment for our fuzzheaded entertainer, Peach became Peachie.

Then Miss Peachie Pie.

Then Miss Peach E. Pie.

And Cleopatra.

And Meopatra.

And, finally, Miss Marilyn Meow.

But they tick to a different clock, pets. Their hearts beat faster, drumming them more quickly through life. Though I don’t see animals as inherently wiser than humans, I do admire their lack of self-consciousness, capacity for forgiveness, assertiveness with affection. It is as if they, with their shorter life spans, somehow know the pointlessness of grudges. Why not just wait right outside the bathroom door in the morning, going Wah wah wah, even if the night before we were too caught up in our own distresses—a call from a hurting friend, problems at work—to do her brushie? Why not jump on the bed for her nightly kneading dance, even if we’d yelled at her ten minutes ago for sneaking onto the kitchen counter to steal a slice of cheese?

Yes, their clocks tick faster—but they reset faster, too. We’re the ones who know life is too short, but they’re the ones who act like it is.

Her decline began slowly. We didn’t know her age when she met Hal—the vet said a year, but it could have been more. So we couldn’t say, “Oh, now she’s twelve, so let’s start looking for middle-aged milestones.” The changes just happened. There were the losses: less running around, less roly-poly, less variety in her vocabulary. There were the mores: more sleep, longer sleep, deeper sleep. There were the unwelcome newcomers: the drop in weight, the urinating at doorways, the howling, the throwing up.

Then began the visits to the vet. After many rounds, he diagnosed her with hyperthyroidism, a condition that afflicts many older cats (though no one is sure why), and prescribed the one medication used to treat it. She wouldn’t swallow the pill. We got pill pockets. She did swallow, but threw up more. The vet sent us to a compounding pharmacy, which reformulated the medication as a tuna-tasting liquid. She wouldn’t let it into her mouth. The compounding pharmacy turned the liquid into a gel we rubbed into her ears. Her ears turned red, the fur fell off her face, and she slept, slept, slept.

I volunteer for hospice. One of the things I was taught in training is that, at the end of life, cure ceases to be the focus. Instead, the effort goes toward palliative care: making the individual comfortable, maintaining a good quality of life.

We took her off the medication. Her ears healed, her facial fur grew back. She woke up.

But the decline didn’t stop. Her weight dropped even more. The howling grew weak, the peeing grew constant.

No more roly-poly. No ritual greeting. No coquettish displays.

During what turned out to be the last snowstorm of this winter, when she couldn’t hold down dinner, I said, “I don’t think she’ll make it until next fall.” Hal, petting her, said, “We can’t know. Why even think about it?”

So we still do the brushie, and she still loves it, in a scaled down way. Sometimes she still does her nightly kneading dance, but not often. When days are cold, she curls up next to a hot water bottle, too thin to warm herself on her own.

The sorrow of watching her decline is made worse by the fear of losing the gifts she’s given us. The laughter, the readiness to drop to the floor and play, the appreciation of her stunning beauty. But more than all of that is the treasuring of the now. If there is only the now, there is no need for hard feelings. If there is only the now, there is no need to be shy about asking for love. Because of Peach, and the other pets we have loved, we see how to revere just one day, one hour, one minute. The minutes will go on after losing her. But how we wish we could grab time, hug it to our chests, and never let go.

So with every day that remains, I hear her in a whole new day. Yes, she still says rrruh! when the brush comes out. And some mornings, she still stands outside the bathroom door and says, in her new, more feeble voice, Weh.

But I now hear the word she and all cats say, the one she’s been saying all along. The one we nicknamed her after.

It is not just the mantra of cats. It is, I now think, the sound of consciousness beating.

Me now. Me now. Me now.

Stay here, me, I think every night, looking at her, and Hal, and everyone I love. Stay here now. Let me come inside the house, and now roll around the floor, and make themselves at home forever.

Neither my brother nor I are currently working at jobs. Since I write books and give talks to make my living, I am self-employed, a situation that suits me well. My brother, though, is a lawyer who has always worked for others, and he would like to keep it that way. However, over the past year, he’s found himself caught up in the unemployment crisis.

First, the company where he’d long been an in-house attorney underwent a merger and eliminated many positions, including his. Then he found a part-time position for another company, but in this economy they didn’t have enough work coming in to keep him occupied and let him go. So he’s been searching for a job. He tries to be methodical about checking the appropriate job sites, but, like many people in his shoes, sometimes the scarcity of job opportunities is highly dispiriting.

I want to help.  It’s in my nature, not just because I too have experienced the numb despair of being between jobs, or wondering whether the famine of my feast-or-famine writer’s life was going to end, but because I’ve seen so many friends struggle over the last few years.

Unfortunately, I don’t have any jobs to offer him.

But I do have something else.  Me.

I make my own schedule, so I’m able to call him up whenever I want and suggest we go out and do something. Usually he says yes, since just getting out of his apartment can boost his morale. The things we do are minor – we make deposits at the bank, mail things at the post office, run off copies at Staples, go for coffee.

But even these small outings, which we can do at our own pace, without the stress of a time sheet to fill, seem helpful. They give us the chance to talk, and regardless of whether the topics are mundane or significant, based in the present or the past, cover our personal lives or current events, I think they give him the sense that this time is only a pause in his life, and that there is so much more to him than a job.

There are things you want to do when people you love are hurting.  You want to make everything right – get them the perfect job, or romantic partner, or therapist, or medication.  But my outings with my brother are reminding me that there is something else you can do.  You can just be with that person.  Your presence, alone shows him you care, and that he matters in the world.

Now it is spring, and he’s told me that the beauty of the season is helping, too. So on our last visit, rather than just run errands, we went out to a local park, and as we walked through a patch of cherry blossoms, and I snapped these pictures, I asked if I could put them on this blog. He said yes, and when I asked what I should say when I posted them, he smiled and replied, “Tell people that this is your brother, whiling away an unemployed afternoon.”

It is a hard time for him, and so many millions of others. But I am glad that, even though I have no job to give him, he’s letting me be there. So in honor of all the people like him out there, and any self-employed person in a period of famine, here are a few moments of springtime glory.

Last week, I had a magical trip to Orlando.  Yes, I was in Disneyworld, but I was not there for vacation.

The main reason I went to Orlando was to do a presentation at the National Council for Community Behavior Healthcare Conference.  Since we still had snow on the ground in Delaware and the temperature in Orlando was seventy degrees, I was particularly happy to go.

My host was Core Solutions, a software company for the behavioral health and human services industries.  I appeared for a special event in their hospitality suite, where I showed clips from the movie adapted from Riding The Bus With My Sister, talked about the real experience I wrote about in that book, and signed complimentary copies of my book.  The attendees included the parent of a woman with disabilities and a self-advocate, both of whom shared their own stories.  As often happens at these events, I laughed and I cried, and I came away deeply moved.

But there was an additional reason for why my trip was more than just memorable – it was magical.

For the past several months, I’ve been corresponding with one of my readers, Lily Grinsberg.  The mother of three sons, two of whom have disabilities, Lily is devoted to exploring all avenues to help her children.  She also wants to share her insights, so she runs programs where she talks with guests about her recent discoveries.  (You can read more about her on her Double Rainbow website.)  As luck would have it, when I went to this conference, she happened to be in Orlando with her family for a vacation – the twenty-eighth one they’ve taken to Disneyworld!  We arranged to visit.

We met in her hotel lobby, falling into a big hug as if we were old friends – which, because she knows me through my books, and I know her through her life mission, we pretty much are.  After so many emails, I finally got the chance to hear her story in person, and to learn about the many fascinating things she’s involved with.  These include Nordorff Robbins Music Therapy, a music therapy that nurtures people of all levels of ability to build well-being; Camp Acorn, a recreational program that builds confidence and self-esteem in children and adults with multiple disabilities; and Radiant Awareness, a form of therapy that inspires joyful awakenings and inner connection.  All of them look terrific.  (For contact information about Nordorff Robbins, see the comments for this post.)

Then we went to dinner, and I got to meet her whole family.  The love in this family is a sight to behold.  The father spontaneously hugs his sons.  The typical son shares a close bond with his brothers.  And everyone is close to the personal assistant for the oldest son.

Here’s a photo of Lily’s son, meeting up with Donald Duck, followed by a photo of Lily and me.