Rachel Simon's Blog

Have you been wondering what’s happened since I last posted here in late May? Here’s the answer, in the form of a brief slide show inside this holiday e-card. It comes from my husband Hal and me.

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Today, Feb. 13, 2012, is the publication date of the paperback of The Story of Beautiful Girl – and the day my book tour officially begins! My first event will be tonight at the famous Tattered Cover, at the Historic LoDo location in Denver.

But I’ve already been in Colorado for a few days. As you might have seen in my last blog post, I arrived on Feb. 9 and went to Boulder, where I did a talk the next day for the stellar organization, Via – Mobility for Life. On 2/11, I returned to Denver to prepare for another talk – for Jewish Disabilities Awareness Day.

Although the event itself was on Sun., 2/12, it began for me the night before. After I dropped my bags at my hotel, two key people on the Committee for the event, Sheryl Goodman and Pam Valvano, picked me up for dinner at a Chinese restaurant. Over vegetarian dumplings and crispy tofu, they shared their life stories with me, and at times tears were shed. We also discussed the event the next day. The schedule called for me to do a 20-minute keynote about the Jewish values inherent in having a family member with a disability, then a 45-minute breakout session about The Story of Beautiful Girl. This meant that only a handful of people would be able to see the Powerpoint I’d put together for that talk – a handful wouldn’t include Sheryl or Pam.

So when we finished eating, I suggested we go back to my hotel so I could show them the talk. I just wanted to be sure they had the chance to see it. They sat on my hotel bed, I pulled up the Powerpoint, we turned off the hotel lights, and I gave my talk to an audience of two.

Sheryl and Pam were very taken by the talk. They left lamenting that the set-up for the next day wouldn’t allow me to give the talk as my keynote.

The next morning, Sheryl called. To my surprise and delight, she’d convinced the powers that be to rearrange the day so I could do that talk for my keynote! Certainly, I was prepared to do the other talk, but I knew the one about The Story of Beautiful Girl would be just right for that audience.

I’m happy to report that the crowd of about 200, which included families, people with disabilities, and professionals, was just as caught up in my talk as Sheryl and Pam had been. Fortunately, I was allowed a little extra time, so I didn’t have to compress it too much. People smiled as I spoke, and they wiped their eyes. Ten emails were waiting for me by the time I returned to my hotel.

But before then, I turned my break-out session into a Q&A, as there were many attendees who wanted advice, or had questions about my books. I also hugged many people while I signed their copies of The Story of Beautiful Girl and Riding The Bus With My Sister. A friendly, efficient bookseller from Tattered Cover was on hand, and she was a terrific companion through the afternoon. (So was a staff person, John, who was assigned to be my buddy.) We actually sold all but two copies of the paperback books she brought – and then she bought two copies of the hardback herself.

After the event was over, I visited with a bright young woman, Naomi, who I first met years ago. That time, in 2003 or 2004, her father got in touch during one of my Denver trips for Riding The Bus With My Sister. He told me Naomi, who has a sister like my sister, was an aspiring writer. We spoke for only a few minutes in that long-ago visit. Now Naomi is in college, and her father contacted me again. Would I meet with her a second time? Yes. I had time in my schedule, and a place in my heart. We went over to the nearby Whole Foods, had tea, and talked for a good while.

Now I’m getting ready for my first bookstore appearance on the tour – at Tattered Cover. I’ll post about that tomorrow.

For now I’ll just share some of the Jewish values I didn’t get the opportunity to talk about yesterday. (A list of Jewish values that tie in specifically with The Story of Beautiful Girl can be found in the Discussion Guide for Jewish Disability Awareness Month. You can see a pdf of the guide by clicking here.)

Of course, I think of this as a human, rather than just Jewish, list. Wouldn’t the world be a better place if everyone lived according to these values?

Having a family member with a disability has taught me:
- Love thy neighbor as thyself.
- Do good deeds.
- Maintain justice and do what is right.
- Have benevolence and compassion for the suffering, be kind to the needy, be honest and ethical. Kindness is what life requires of you.
- Make the world a better place to live.
- Save one life and you save the world.

Actually, my book tour starts in Denver tomorrow, 2/13/12. But when my fabulous publisher, Grand Central, told me a few months ago that they would be sending me on a book tour for the paperback release of The Story of Beautiful Girl, I got in touch with the wonderful folks at Special Transit, in Boulder, CO, and asked if they’d be interested in having me fit in a presentation for them.

This wasn’t a random call. I’d done a number of speaking engagements for Special Transit on two separate occasions, and had stayed in touch with the Executive Director, Lenna Kottke, whose house I’d stayed at on both trips.In fact, if you’ve ever watched this clip of me speaking about Riding The Bus With My Sister, you’ve seen me at Special Transit’s 25th Anniversary Gala Dinner. I just love the mission of this non-profit organization, which is to provide customers with transportation and mobility options that enable them to live more self-sufficient and independent lives. I also love the people who work there; they’re warm, committed, and enormously skilled at running events.

They were thrilled when they learned I’d be coming to their general area, and asked me to be part of a unique program. As it turns out, after a major capital campaign, they recently opened an elegant new facility full of sustainable features and located in one of the most picturesque areas in Boulder. This fresh start prompted them to rename themselves, as they’d learned that many in the disability community no longer embrace the word “special.”

For several months, they’d been wondering how to do a big event to launch their new name and new logo. Upon learning that I could fit in a detour to Boulder, they set the date of their event for Feb. 10, and asked if I’d do a talk.

My time with them began on Thurs., Feb. 9, when I landed in Denver. But as I was picking up my suitcase from Baggage Claim, I got a call from my publisher. That very evening, the PBS News Hour would be airing an interview I’d taped with Judy Woodruff two days before. The show would broadcast only an hour later on the East Coast, so lovely Diana, the staff person who drove me to Boulder, had to listen to me calling friends and family in haste. Fortunately, the show wouldn’t air for another few hours in Boulder. So I began my visit to Boulder by running into Special Transit’s amazing facility, hugging my old friends, emailing friends around the country, and then going home with Lenna. There, she, her husband Jon, and I hunkered down in front of their TV set, and we got to watch the interview together.

I was relieved it went so well. I’d had too much tea before I went on the air and was jittery. I was also asked, at the last minute, to sit on a high cushion so I wouldn’t look as small as I really am. Unfortunately, this led my feet to dangle far from the floor – a problem I’ve encountered often enough for my husband Hal to give it a name: the Edith Ann Effect. Somehow I came off well, despite these concerns. You can watch that video by clicking here.

Then Lenna, Jon, and I went out to a delicious vegan dinner, and caught up.

The next day was the event. The invitations had indicated that attendees would learn the new name of Special Transit, but they had no idea what it would be. So the air was filled with anticipation.

Guests began arriving at 4:30 PM. Some were people I’d met at previous events, others were new to me. We were ushered into the clean, warm, beautiful bus garage.

Then Lenna got up on a stand and announced the new name: Via! With that, the garage doors opened. The Special Transit bus that had been inside the garage was driven out, and a three new vehicles, with the Via logo, pulled in. Everyone clapped and beamed.

It was a thrilling unveiling of an exciting new time in this organization’s life. I felt very lucky to be a part of it.

Then we went upstairs to their event space. Food was set out for the guests. I got up on a stand and talked about how people like the characters in The Story of Beautiful Girl need Via’s mission, as it is critical to ensuring that all people can remain living in their communities.

At the end of my talk, I talked with several people in the audience. Some were so moved by memories that were sparked by things I’d said that they welled up with tears. I hugged many people that night.

I didn’t leave when the guests did. Among the friends I made at Special Transit was a wonderful person who now works elsewhere in Boulder. She’d attended my talk, then stayed late with me to catch up. We feel a great connection, and have given each other many helpful life tips over the last several years. I am so happy that I know her.

I was scheduled to leave the next afternoon to go to Denver, but I was able to work in one more visit with an old friend.

I went to a boarding school, Solebury School, at a hard time in my family’s life. (I have written about how I ended up there in Riding The Bus With My Sister.) Joel Rosenblum, who lives in Boulder, was in my class, and I hadn’t seen him since we graduated in 1977. We hadn’t even been in touch, until he contacted me on Facebook a year or so ago.

He picked me up at Jon and Lenna’s, and we went out for coffee. The two hours I had for our visit weren’t nearly enough time, as we had thirty-five years to cover. So we both spoke quickly, telling each other the story of what happened since we received our diplomas. For those of you who don’t know, Solebury School was, and is, an unusual place. It’s a very small, co-ed boarding and day school which is dedicated to the development of each individual student. We had extraordinary teachers who taught such classes as Post-Modern Literature (David Leshan), Anthropology (Michael Brady), and European History (Mariella Sundstrum). Art classes were required as well. And students called teachers by their first names. It was a great pleasure to talk with Joel about the effect this gem of a school had on both of us.

I raced back to Lenna and Jon’s, where Patti, who is on the staff of Special Transit – no, Via! – picked me up and drove me to Denver. Since she has a family member with disabilities, we had a lot to talk about in the car. Two hours wouldn’t have been enough for us, either. But our conversation was only about forty-five minutes – way too brief.

Moments after Patti dropped me off at my hotel in Denver, I met up with my host for the next event, which I’ll be doing immediately after finishing this post. I’ll be speaking at the Denver JCC for Jewish Family Services. Sheryl and her friend Pam took me to dinner at a Chinese restaurant. We shared our lives and ate great food. Late in the meal, another customer came up to us and asked if I was Rachel Simon! When I recovered from the shock and said yes, she said she’d seen me on the News Hour on Thursday, and had debated approaching me for her entire meal.

Throughout the time in Boulder, I kept trying to connect with my sister Beth. She called a number of times, but over and over I wasn’t free to speak. So this morning – Sunday, 2/12 – I went out for a walk in snowy Denver. I walked beside a beautiful stream, and even though I was cold, I was happy, because I was finally able to call my sister and talk with her for a good long while.

On Sundays the buses don’t run in her city. But sisters don’t stop on Sundays. They don’t even stop for book tours.

Could there be a better way to kick off the release of the paperback of The Story of Beautiful Girl than to get interviewed by Judy Woodruff on the PBS News Hour?

Yesterday I flew to Colorado. I’m currently in Boulder, getting ready for a talk tonight. After another talk on Sunday, I begin my book tour on Monday. (To see where I’ll be going, check out my Appearance page on my website.) I’ll blog whenever I get the time.

But earlier this week, on Tuesday, I went to Washington, DC and taped the interview. It was an honor to meet Judy Woodruff, not only because she’s a legendary journalist who I’ve admired for years, but because she has a personal connection to disability.

The interview aired last night, Feb. 9, 2012. To watch it, click on this link. Enjoy!

Family Network TV is a new internet TV channel founded by Susan Stephens, an energetic and visionary grandmother of a boy with cerebral palsy. The shows on Family Network TV focus on families who are living with disabilities, with the goal being to unite the special needs community worldwide. Susan Stephens, Vice President Tara Ecklund, and a team of fifty parent and sibling volunteers have poured their time and love into making this dream into a reality. Family Network TV made its internet debut at the end of February, 2011.

The Family Network TV show “What’s Happening” is hosted by fellow sibling and writer Mary McHugh. Mary recently interviewed me about the genesis of my upcoming novel, The Story of Beautiful Girl, which will hit the stores on May 4, 2011, and asked me to give some behind-the-scenes insights into the writing process. Mary’s interview with me was conducted on Oovoo, an online video chat service, and posted soon after Family Network TV launched, on February 28, 2011.

To watch the fourteen-minute interview, click on the first video below.

And if you like this video and this format, I hope you’ll check out Family Network TV and see the many other programs they offer.

Here’s to a bright future, Susan, Tara, Mary, and all the people who make up Family Network TV! You have my gratitude and best wishes.

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What do you do when you love someone deeply but have fallen totally out of sync with her – maybe to the point where this person, who you once got along with every day in every way, suddenly starts speaking coldly and harshly to you, rolling her eyes at so many activities you once enjoyed together, or even says those most painful words: “I hate you”?

And what do you do when this person is your own flesh and blood? Maybe even your teenage daughter?

As someone who does not have children of her own, I have been spared this all-too-familiar experience and all the associated pain. But as readers of my books and this blog know, my sister Beth, who has an intellectual disability, has the unusual lifestyle of riding city buses all day, every day, and in the interest of growing close to her after years of emotional distance, I rode the buses with her. I learned many lessons while sitting beside her on the bus, but one of the most important was this: If you want to recapture a closeness you once felt with a loved one, it’s extremely helpful to stop standing outside her world, casting judgment and grieving. Set aside all the criticism you have of her life and the hurt feelings you carry around. And, if she’ll give you permission, just enter her world.

This is the same conclusion that my friend, the writer Lauren Kessler, came to when her delightfully compatible and mutually respectful relationship with her twelve-year-old daughter Lizzie molted into constant conflict. The result is her latest book – which I recently read and got a great deal out of, My Teenage Werewolf: A Mother, A Daughter, A Journey Through The Thicket of Adolescence.

Lizzie had been an easygoing child who loved riding bikes, going bowling, drinking hot chocolate, and doing art projects with Lauren. Then adolescence hit. Not only did Lizzie lose most of her interest in these activities, she began reacting to Lauren with loud sighs, testiness, accusatory glares, and dramatically rejecting gestures.

Lauren was stunned and confused. Then she became frightened, since her relationship with her own mother had deteriorated when Lauren was a teenager and never recovered.

But Lauren isn’t just a loving mother. She’s also an insightful and fearless nonfiction writer. In fact, I first met her through the pages of one of her books, Dancing With Rose (retitled Finding Life In The Land of Alzheimer’s for the paperback). Lauren’s mother had recently passed away from Alzheimer’s, and in the interest of coming to terms with that never-healed relationship, Lauren took a job at an assisted living facility. In the course of learning about the last world her mother knew, Lauren also grew close to several of the residents. That book is as informative about the daily life in such a facility (and I say this as someone who’s regularly in one as part of my hospice work) as it is moving about Lauren’s personal journey.

Having learned from that book what I learned from my memoir about my sister Beth, Lauren decided that the way to gain some understanding of Lizzie was to enter her world. But this time she wouldn’t get a job. She’d just ask Lizzie if she could shadow her life. It is a credit to Lizzie’s bighearted personality, and to the endurance of their love for each other, that Lizzie said yes. And it is a sign of Lauren’s courage, and faith in her ability to see truths that might trouble her, that Lauren then accompanied Lizzie everywhere.

The mother joined the daughter in the social minefield that is junior high. She observed teen dynamics, adolescent friendships, and her daughter, as they went from class to class, walked down the hallways, attended lunch and band. As time went on, Lauren went to sleepaway camp, volunteer activities, job internships, athletic events, and even a sex ed session at school. Along the way, she acknowledged her own emotions, which sometimes veered into dismay or annoyance, other times rose to pleasant surprise and even admiration. Sometimes Lauren managed to keep her thoughts to herself, and other times, to her chagrin, she didn’t. She also re-examined why her own relationship with her mother froze in time – and re-committed herself to not repeating that unfortunate history.

Lauren chronicles this mix of anthropology, journalism, relationship deconstruction, and introspection in her book – and she does so in a way that is honest, informative, humorous, and moving. It’s also a good story, which starts with Lauren and Lizzie being totally at odds with each other, and it ends with them coming back together, now in a stronger relationship.

I was drawn to My Teenage Werewolf because of my affection for Lauren’s last book, but I’m writing about this well-written book here for two reasons. One is because I enjoyed how much I learned – on so many levels.

The other reason is that we live in a world where, when relationships grow difficult or even break apart, so few of us know what to do. We might ask friends, but they’re so often groping for an answer themselves, struggling as they are with their own questions about how to deal with their parent, sibling, child, or friend. We might turn to therapists, too, and sometimes they do offer insights, or provide the gentle guidance, to help us take some kind of step toward healing – though not necessarily toward understanding, accepting, and actively, while keeping the person in our life, repairing. And of course we live in a time of high drama, where adversarial relationships are all too often viewed as acceptable.

So I think it’s important that, whenever we encounter something that has facilitated our sense of compassion and understanding, we let others know – and perhaps all the more so when that compassion and understanding is directed toward our own flesh and blood.

So I’m sharing this book with you because it seems possible that you too might be in a struggle like this with someone you love, and need just the inspiration that this book offers. It will remind you, as it reminded me, not to fight back or reject or run away.

Run toward.

This is a story about how everyone deserves love.

First, please meet my mother. For the past two decades, she’s lived in Florida with her husband, and both are retired. Every spring for the last few years, they’ve driven the thousand miles north to Pennsylvania, where he grew up and they met long ago. They travel in a mobile home, which they then park in a campground for the entire summer. The campground is a few hours from where I live.

This is my mother’s husband. He does all the driving because a few years ago, my mother became too forgetful to cook a meal, much less drive a car, and was eventually diagnosed with senile dementia. She still lives at home, and he’s her caregiver.

They love each other very much and are each other’s constant companion and best friend. They’ve been married for almost thirty years.

I see them as much as I can when they’ stay up north. My mother still knows who everyone is and can carry on a conversation for short periods, but she has large and ever-growing gaps in her memories. It’s hard knowing that any visit I have with her might be the last time she remembers who I am.

Until a year and a half ago, my mother and her husband doted on their pet cockatiels, Lemon and Pumpkin, who were also each other’s constant companion and romantic partner. Their feathered bond lasted for a gloriously happy twenty years, all of which they spent with my mother and her husband. Then, suddenly, Lem passed away. Pumpkin pined away for months, and then he died, too.

My mother and her husband were bereft. They loved these birds so much, they’d long ago stopped using airplanes when they traveled, as they disliked having the birds out of their sight. That’s why they got the motor home, which gave them the ability to drive across the country as a foursome, the birds happily entertaining the humans from their cage, the humans adoringly catering to the birds’ every need. They’d even hired an artist to paint a picture of Lem and Pumpkin on the side of the motor home. At some point, my mother’s husband bought a special box for a double coffin, saving it until the time came so they could be laid to rest in style – and together.

The silence was overwhelming after their beloved birds were gone. There was no one to sing along with the radio, or to dance in the cage, or to display his or her feathers. No one whistled back when my mother said, “Good morning.”

I am a hospice volunteer and spend a lot of time in an assisted living facility, where many of the residents have Alzheimer’s. I see that while some people have regular visitors, others have none, and although I can’t detect a difference in the progression of their condition, I’ve come to suspect that loneliness encourages insecurity, neediness, fear, even desperation. Everyone, regardless of the state of their cognitive abilities, needs to know they’re loved – and needs to have the opportunity to love another back. Whether or not it makes us live longer, I cannot say; but it deepens and enriches every moment that we’re here.

This summer, my mother and her husband came up north in July, planning their return drive to Florida for mid-September. I visited several times, and told them I’d come back one final time a few days before they were scheduled to leave.

But an interesting thing happened a week before that last visit. I went to get my hair cut.

This is Michele. She lives twenty minutes from me and has a sunny room in the back of her house where she cuts hair. She has a warm and caring personality, and always does a great job with my curly mop.

It’s very peaceful in Michele’s haircutting room. She’s the sole employee, and at most I encounter only one other customer, though often it’s just Michele and me. The atmosphere is easy and informal, and, because her family sometimes stops in to say hello, I’ve gotten to know her daughters, husband, and pets. Right now she has two dogs but for a while she had a bird, too. The bird passed away, but she retained a fondness for feathered creatures.

In early September, when I went to Michele’s for my haircut, I opened her back door and, to my surprise, saw a new bird. It was a cockatiel, no less, who was instantly eager to say hello.

“Who’s this?” I asked, walking up to the cage.

“That’s Rudy,” Michele said.

Rudy, who’d already been bouncing around the cage trying to get closer to me, grew even more alert at the sound of his name. Full of energy and blessed with an insistent friendliness, he was instantly likable.

“Where did Rudy come from?” I asked, not taking my eyes off him.

“One of my other customers. He’s only three years old, and her family has grown so much that they recently realized they have too many children to pay enough attention to Rudy. She mentioned that she was thinking of putting him on Craig’s List, and I said, ‘Well, I’ll take him.’ I hated the thought of him being on Craig’s List.’”

I did, too. Rudy was clearly smart and engaged, and his personality instantly struck me as larger than life. It was terrible to think of him ending up with someone who paid the highest bid, and who might not love him as much as, well, as much as he deserves. And everyone deserves to be loved.

I said, “You know, my mother and her husband had two wonderful birds who passed away. I think they’d love Rudy.”

Michele said, “He’s a very nice bird.”

I said, “I feel strange asking this, but…I’m going to be seeing them in a few days. Can I tell them about him?”

“Sure.”

Michele then cut my hair. And right after I left to go home, her daughter, who’d been listening to us from the living room, said to Michele, “I think Rachel really wants that bird for her mother.”

A few days later, I drove to see my mother and her husband, as planned.

And after we’d gotten caught up, I told them about Rudy. “He looks just like Pumpkin,” I said. “He’s bursting with affection. If Michele was willing to part with him, would you want to take him in?”

My mother immediately teared up. “Yes,” she said.

Her husband said, “Oh, three years is a really good age. And it would be so great to have another bird. And we still have all the food and toys and everything we need. But would she really let Rudy go?”

“Rudy sounds wonderful,” my mother said, gushing.

I said, “How about if I call Michele and get her thoughts?”

Right then and there, I dialed Michele. She laughed because she’d been thinking I’d get in touch. Then she checked with her family, and moments later, she called back. “Yes, your mother and her husband can have Rudy,” she said. “We like him, but we haven’t bonded yet. And we know that we’ll treat him like a prince – but they’ll treat him like a king.”

So a few days later, I went to see my mother and her husband one more time, and led them in my car to Michele’s house.

My husband Hal, who also wanted to meet Rudy, was waiting for us. Michele greeted us all warmly. Then we went into her haircutting room, where Rudy awaited.

Hal was immediately taken by Rudy.

Michele brought him out of his cage.

And my mother gave him a kiss.

We carried Rudy outside, set him in the car for the ride back to the campground, and hugged each other goodbye.

Moments later, they drove off with their beautiful new companion. As always, I felt sad, not knowing what state my mother might be in when I see her again. Yet I also felt I’d done a good thing.

A few days later, when they were halfway to Florida, my mother’s husband called. “This is a magnificent bird!” he said. “He’s so friendly. He gets on our shoulders and nuzzles our faces. Your mother sings to him and he sings back. They’re already getting totally attached. We totally love him.”

I could imagine my mother in the background, Rudy on her shoulder as she cooed to him. I don’t know how much longer my mother will remember who I am. But because of one family’s need for help, one hair dresser’s generous spirit, one customer’s luck in scheduling a haircut just when she did, and one bird bursting with affection, I do know that every minute that my mother – and her husband and Rudy – have left on this earth, they will know that they’re loved, and that they will have someone else to love back.

I hate to admit this, but I’m not a vacation person.

I understand the attractions of vacation: getting away from routines, obligations, and the familiar. Seeing new landscapes, visiting old friends, returning to beloved terrain. Spending private, leisurely time having serendipitous adventures with my wonderful husband Hal.

All of these things have a great appeal to me. But because, as a writer, I tend to thrive when I adhere to solitude, silence, a slow pace, and discipline, I feel I have to rediscover a social and spontaneous self when I jaunt about on a vacation. That’s not always difficult, and sometimes I quite welcome the shift. However, the backlog of emails and the build-up of obligations, along with a renewed delight in the world of real, rather than imagined, people and experiences, mean I need many more days than I care to admit to return to the quiet place in my mind where I do my work.

Also, for years now I’ve traveled a fair amount to do talks, so I’ve seen all the new landscapes, old friends, and even beloved terrain I might desire- and my hosts pay my way. But vacations cost money – sometimes a lot more money than I feel comfortable spending.

And, on top of all that, sometimes things go wrong. Then there you are, far from home, and paying for the privilege of getting the flu, suffering through car trouble, hiding out from bad weather, losing a favorite possession – or coping with the likes of something you never even dreamed you might deal with.

But the one compelling reason for me to set all these concerns aside is that Hal likes to get away now and then, and, as I mentioned, when we’re away together, we allow ourselves to wander around back streets, engage in lengthy conversations with gregarious strangers, poke around in quirky shops and museums, and open our minds, and hearts, to so much we don’t usually see.

This past summer, Hal proposed that we make a trip to Charlottesville, VA. He went to college at the University of Virginia, and since he took off five years in the middle of his undergraduate career, during which time he lived in town and managed the pre-eminent record store of that era, Back Alley Disks, he still has friends in the area, as well as the type of fondness we all have for the place that bestowed a bounty of pleasing memories in our youth. My affection for Charlottesville is more subdued, though I do find its historic buildings attractive and its rolling hills restorative. I also happen to have an emotional tie there: a close friend from seventh grade moved to Charlottesville after high school.

But nothing beats visiting a place where your spouse gushes loving memories every few feet, catches up with people who’ve been dear to him for decades, and feels a sense of peace simply by breathing the air.

So every few years we take a trip to Charlottesville, and this summer was one of those years.

In May, Hal asked me when I’d be free during the summer. I told him the few dates when I had speaking commitments but otherwise the calendar was open. He then narrowed it down by seeing what interfered least with his responsibilities at work. Finally we picked the dates of Aug. 12 to 17. Hal filled out the forms at work to get official approval. We booked the hotel. We emailed our friends and scheduled our visits.

And then something happened that I never could have dreamed of. Three weeks before we were to leave, the person who handles my speaking engagements called. We’d just received an invitation for me to come to Casper, Wyoming to speak to special education teachers. “When,” I asked. “August.” “What’s the date?” I said, getting nervous. “August 16th.”

Oh no! Could Hal’s work responsibilities allow for us to change the dates?

No.

Did the folks in Casper have the flexibility to change the date?

No.

Should we just give up on our vacation?

Definitely no.

So we decided to compress our tiny, long-awaited, five-day vacation into a mini, two-day vacation. We’d wedge in as much vacation pleasure as we could, and then I’d hop on a plane – or, really, three planes, starting in the little airport in Charlottesville and landing in the little airport in Casper – to do my talk. And although we wouldn’t be together for the second half of our truncated vacation, we would continue the same spirit of adventure and openness.

Yes, something had gone wrong. But like many people who’ve had things go wrong on vacations – and, at some point, doesn’t that include all of us? – we decided to have wonderful experiences anyway.

And so we did.

If you, like me, are the brother or sister of a person with a disability, you have concerns, emotions, and maybe even responsibilities that the siblings of typical individuals don’t contend with.

You might have protected your brother or sister from the neighborhood bully when growing up. Or resented that they didn’t have any chores when you had several. Or relished the contagious glee they expressed when they won a round of Go Fish, or danced in the living room, or greeted you every time you came home. Or felt guilty that you could ride your bike to see friends while they couldn’t ride a bike and didn’t have friends. Or burst with pride when they reached major milestones that you’d hit many years earlier.

From a very early age, you might have worried about what would happen when your parents died.

From a very early age, your vocabulary included words like “IEP”, “group home”, “sheltered workshop”, and “SSI” – words that your friends didn’t know existed.

From a very early age, you felt older and more mature than your friends.

From a very early age, you knew that sometimes you were called upon to act like a brother or sister, and other times like a parent.

And from a very early age, you looked askance at a world that mistreated, ignored, stereotyped, mocked, and cut the funding for people like your siblings – and you couldn’t, for the life of you, understand how anyone could be so insensitive and even ignorant.

If you’re the sibling of a person with a disability, you would have loved a conference I attended this summer, the first International Sibling Conference, held in Greenwich, CT. For three days in early August, adult siblings from all over the world gathered in the sumptuous Hyatt Regency Greenwich to talk about our worries, support each other emotionally, and make friends in the sibling community. By the time it ended, we knew that, regardless of our personal struggles, we would always have others to turn to.

As at all conferences, the three days were full of receptions, presentations, and panel discussions, and every single event, from the largest addresses to the entire crowd to the smallest and most spontaneous moments in the hotel lobby, led to insights about my own life and connections with so many others. I did already know several people there, having encountered them at previous conferences or in my inbox, but I so enjoyed seeing old friends again – and meeting a ton of others for the first time.

Here is a photographic depiction of some of the high points of the conference, which was the brainchild of the people at ARI of Connecticut, Inc., The Sibling Leadership Network, and the Kennedy Center, Inc. I hope it gives you a good taste of the experience, so that, if you too are a sibling, you can join us when we meet again next year. (Please contact Dr. Bob DiDomenico if you’d like to get notified: didomenicor@arict.org)

International Sibling Conference: Channel 12 News Coverage from John Kramer on Vimeo.