Spring Blossoms

Posted By on May 1, 2012

Hi Dear Readers:

A blossom of information has already bloomed and awaits your attention. The Valerie Fund, an organization that supports comprehensive health care for children with cancer and blood disorders in New Jersey and New York City, has been serving sick kids and their families for over 35 years. To observe the occasion, The Valerie Fund’s VOICES was published.

VOICES is a book filled with astoundingly wonderful photos of our resilient Valerie Fund children, their poems, and their artwork. Insightful quotes by the children’s parents and siblings add to the book’s power.

VOICES, a team effort first conceived by Bunny Flanders of The Valerie Fund, and involving writer/editor Rhonda Silver, graphic designer Mary Tedesco, and me, is now on sale at The Valerie Fund’s website http://www.thevaleriefund.org. Please click on ‘Gift Shop’ at the top of the organization’s web page and take a look. This is truly a book to cherish.

On a far different note, another spring season blossoms for me with fresh writing possibilities and some computer clean-up tasks. These kinds of blossomings, though, require a sabbatical from my blog for several months. I am confident, however, that I will see more flowering from the fruits of my labor,

  • And since hope springs eternal, in mid-May with the help of an editor, I will begin restructuring my memoir, Unexpected Lives (working title), in a renewed effort to find a book publisher.
  • I am working on a second book, Breathless: Resilient Mothers in Challenged Families (working title), with my co-authors Cherie Castellano and Mary Beth Walsh about resilience in Moms with special needs children. These children run the gamut from autism to cancer to cerebral palsy and every serious illness in between. By the way, our book on resilience is still looking for additional submissions. If you know a mom with a special needs child who would like to submit a chapter about her resilience, please contact me.
  • The third project involves my website http://www.suzannbgoldstein.com. It needs to be spruced up: more content will be added and the site’s maneuverability improved. The web master will do most of the work but I’ll attempt to be a bit more courageous and do some of that maneuvering myself.

I will try to keep you all updated as to my progress. In any event, keep watching. I’ll be back!

Suzann

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Suzann B. Goldstein lives with her husband Ed in the Watchung Mountains of New Jersey. Suzann and Ed established The Valerie Fund, an organization that supports children with cancer and blood disorders in New Jersey and in New York City. Suzann has her Master of Arts degree in sociology with a sub-specialty in medical sociolgogy from Rutgers University, is a published author and poet, and has just recently completed her memoir, Unexpected Lives.

 

TOOTING MY OWN HORN: And Hoping I Don’t Blow it

Posted By on April 1, 2012

In January, I was told that I had been chosen as an Outstanding Woman of the Year in Somerset County by The Somerset County Commission on the Status of Women (SCCSW); the award category was for Public Service. A dinner to present the awards was to be held in March to celebrate Women’s History Month.

Chaired by Paula Marasco of Bernardsville, the SCCSW committee sifted through many names and ultimately recognized nineteen women in various categories for their “ . . . personal accomplishments and dedication . . . ” to their communities. I was one of those nineteen.

An estimated 300 people filed into the dining room of The Imperia in Somerset, NJ on March 23. The evening was lovely and crowded with family and suppporters of the award recipients, all milling around and talking excitedly.

I was honored by the award but panicky that I had to stand up and give a speech, one out of nineteen. Then I discovered that the categories were listed alphabetically in the program and the speeches, of course, were tied to their categories. Public Service was speech number 18. Uh Oh! That meant I not only had to worry about what to say but whether or not people will hang around long enough to hear me. Or, on the other hand, perhaps they might be too drowsy to listen to me speak. I desperately needed a glass of wine.

Wine did not help one bit and my food was put on hold. But the night was fun-filled. Jokes and laughter abounded and I loved it all. Except when I thought about speechifying.

The first seventeen speakers were heartwarming and those women were well chosen for their accomplishments. Which made me even more nervous.

To my surprise, the time and the speeches flew by; all spoke well and with passion. Equally surprising, the audience seemed wide awake and attentive. Most important, however, given the circumstances, my public speaking juices and my innate sense of competition had finally heated up.

The need to cut Abigail Adams from my speech, though, was disappointing. I originally wanted to praise her for her grit, but my speech was running over the time limit so I’ll tell you now what I wanted to say that night in honor of Abigail and Women’s History.

Abigail Adams, in March 1776, wrote to her husband, who would become our second President, “John, I desire you would remember the ladies,” and she bothered him about women’s rights throughout their marriage. Continuing on a firmer note, she cautioned, “If particular care and attention is not paid to the ladies, we are determined to foment a rebellion, and will not hold ourselves bound to any law by which we have no voice or representation.”

She was some woman, that Abigail, courageous and wise at a critical time in American history. Remembering her, I thought, this speech is not about “foment(ing) a rebellion”; this is merely a talk in front of friendly folks. I can do that!

I heard my name. Ed was poking me. It was my turn.

I stood up, walked to the podium, looked out at my audience, and began:

Thank you, Paula, and thanks to the Somerset County Commission on The Status of Women for my award in Public Service. Also, thanks to Carolann Garafola, the Mayor of Warren, and Bunny Flanders of The Valerie Fund for their efforts on my nomination.

And a very special thanks must go to my husband Ed, my other half. My Muse… My Lodestar… My Exemplar. Together, in all manner of things, we have taken care of our children, worked in our business, and shaped our public service goals. And, as an aside, he has suffered through, and opiniated on! every single draft of every single thing I have ever written.

As you can see, I’ve found the right guy. Thank you honey for being you, and for encouraging me to be all that I can.

My lost loved ones, too, have played their very important roles.

My older brother Stan was the first to push me toward public service. Our mother died when I was nine. Stan was fourteen and he was my best friend. Twelve years later, when he was twenty-six, Stan died in an auto accident. But by his example in his short lifespan, he taught me to feel concern for others, to avoid self-pity, and to be strong.

Shortly after his death, I took my life’s savings, the entire $20, and mailed it to Stan’s Hebrew School administrators telling them to offer a scholarship in his name to a young person in need. I didn’t analyze it at the time; I just knew I had to do something.

As it turned out, making that donation comforted me, and I did it yearly.

Fast forward to early 1970: our three-year-old daughter Valerie was diagnosed with bone cancer and treated at Babies Hospital in New York, over an hour’s car drive from our home. There were no pediatric oncologists in New Jersey in 1970 so most of our time was spent in caring for our ill child and traveling to and from the city. Stacy, our older daughter, was separated from us too many times to count. The guilt was overwhelming.

We lost Valerie in 1976, and soon after, The Valerie Fund — I called it our third child — was born in the living room of our Warren home. One year later, we opened The Valerie Fund Children’s Center for Cancer and Blood Disorders at Overlook Hospital.

We didn’t need an organization to remember Valerie — memories of her j’oie de vivre still make us grin — but we did need the comfort of knowing that other families with seriously ill children could find treatment closer to home, right here in New Jersey. Ed and I and all the people who volunteered their time and gave of their money worked hard to make The Valerie Fund successful. Today, The Valerie Fund supports seven children’s centers throughout our state and one in New York City. The Valerie Fund also runs a free one-week overnight summer camp, Camp Happy Times, with on-site medical care for children who have or have had cancer.

Fast forward again to 1989: our surviving child Stacy was diagnosed with breast cancer. She was a determined young woman, close to us, her parents, in every way as she battled her illness, thoughtful and loving in marriage and in child-rearing, and with a straightforward sense of reality. She was a model for living life as fully as possible. We lost Stacy in 2001. She was thirty-seven.

A few years later, Ed and I joined the fight against breast cancer with a focus, this time, on research as well as clinical care. In Stacy’s name, we supported fellowships for two young M.D./Ph.D. scientists, both young women, working in breast cancer research at The Cancer Institute of New Jersey.

In 2009, in collaboration with The Cancer Institute, we renamed their breast cancer center the Stacy Goldstein Breast Cancer Center. And when we see our two scientists over lunch or in their labs, I give them orders, “Work faster! Work harder! Find that cure!” We all smile; we all know that I’m serious.

I believe that the bedrock of public service includes the voices of our loved ones, a deep-rooted concern for others, and a lot of determination mingled with the gift of j’oie de vivre — a joy in LIFE. And on that path to public service, we learn, again and again, that when we give, we also receive.

Thank you for being here and for listening. This is an award I will always cherish.

And I will. I will also cherish the knowledge that I was the only speaker to receive a standing ovation that night. Astonished at the response, I left the podium to walk back to my table but was stopped by the many people in that dining room who were either cancer survivors or who have or have had loved ones with cancer. One woman told me she was a breast cancer survivor and had a son who was also a cancer survivor. Another, a man — a husband, brother, father? — simply touched my shoulder, nodded, and stepped away.

So. For all of us, our work is not yet finished, not by far.

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Suzann B. Goldstein lives with her husband Ed in the Watchung Mountains of New Jersey. Sue is co-founder of THE VALERIE FUND, has her Master of Arts degree in medical sociology from Rutgers University, is a published author and poet, and has just recently completed her memoir, Unexpected Lives.

 

Remembrances of Times Past

Posted By on March 1, 2012

Donnie Moorin died on Monday, February 20, 2012. He was 79 years old. Donnie, his younger sister Carole, and their parents lived two houses away from my family on Charles Street in Bridgeport, CT. Carole and I have been close friends since babyhood.

Donnie’s death shattered the peace of our Florida vacation — my husband Ed and I were on Longboat Key at the time — and instantly pushed memories of my past to the fore. They flashed by unordered, the past mixed with the present.

Memories. We forget. We combine. Or we elaborate upon them. Some bring a smile. Some tears.

For instance, my memories of Charles Street, right or wrong, include the following. They bring a smile.

  • My kitchen windows and Carole’s bedroom windows faced each other across two backyards, the views unobstructed, and like Mrs. Goldberg of early TV fame, we shouted to each other out of our respective windows until some adult hollered, “Stop it, you kids!”
  • Carole and I, during a crazed period of early adolescence, shaved our arms and eyebrows together in the privacy of her bathroom (Don’t ask why.).
  • She and I tumbled down the concrete stairs of her house holding tight to one another and have argued about whose fault it was ever since.
  • We smoked our first cigarettes together in my bathroom, standing close to the wide open window and working hard to wave the telltale smell outside.
  • And, last but far from least, Donnie wouldn’t let me walk on their sidewalk. My big brother Stan retaliated by forbidding Carole to walk on ours. Just retribution!

Additional snippets of memories, those dog-eared corners of my life, surfaced for me with a vengeance in the funeral chapel that Tuesday in Boca Raton. Unaware for the moment of my surroundings one thought intruded on another. I came to attention, however, when I heard friends in the midst of their eulogies call him Don or Donald. To me he was always Donnie. I wanted to stand up and cry out, “No, not Don. Not Donald. But Donnie. His name was Donnie!”

Back home two days later, still locked into the memories of my past, I turned to some old photos. One black and white in particular stood out. I don’t know who snapped the picture but five little kids stood facing forward and had been clearly commanded to look at the camera: Donnie, Stan, Carole, Sue, and Boopsie, the son of the Moorins’ upstairs landlord.

We were on a grassy field at an overnight Jewish Community Center camp in CT. It was visiting day. Did Boopsie go to camp? I don’t remember. But I’m sure Carole will remind me. She has a memory far better than mine. She doesn’t forget, combine, or elaborate. In fact, I am taking a big chance in writing about the old days because she will correct all my errors, and there will be many. I can handle it. After all, these are my memories, and they’ve settled unalterably into place, mangled or not.

The 3” x 5” camp photo makes us look curiously squat. And very young. The memory of that day so long ago somehow eludes me. I look at the photo often but it is just a photo. Were we really ever that small? A slow smile spreads across my face as my mind’s eye tries to imagine the five of us restlessly waiting for the end of the photo shoot.

Another photo is one of my mother standing in front of our apartment house and holding me, the baby of the Bresler family, in her arms. She died when I was nine years old leaving me without most memories of those early years. I often look at that photo as well.

It is a special black and white, and without fail, it brings tears to my eyes for the mother I missed in life and blocked from my mind. Although I do have many, I need no photos for those loved ones who are now gone but whose memories I have retained clearly: my twenty-six year old brother and best friend, my dad who brought us up with the help of my grandmother, and most painful of all, my girls, Valerie at nine and Stacy at thirty-seven. All are gone. The tears drip down uncontrollably.

See what Donnie’s death has wrought? And it surprises me that all the deaths before Donnie’s fall helter skelter from my heart, rising up so quickly in such vivid color, creating such emotions.

Yet, with the passing of the years, the sadness that often creeps upon me is just as often short-circuited by reminders of humorous past episodes. That part of my past becomes what I call the in-between times: the good memories when life was lived with a big grin and a great bounce. Those are the sustaining moments when I forget the sorrow and remember to grin.

And I discover, again and again, there can be laughter among the tears.

With that in mind, I remember Donnie as I last saw him about nine months ago at his niece’s Bat Mitzvah. He looked wonderful. We all joked and reminisced about the old days, and we hugged and kissed. Now that’s an in-between time, and a memory to store away forever!

So, Donnie my friend, although many stories are lost over the years, one certainly remains and carries with it a smile along with this generous offer: you can always walk on my sidewalk.

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Suzann B. Goldstein lives with her husband Ed in the Watchung Mountains of New Jersey. Sue is co-founder of THE VALERIE FUND, has her Master of Arts degree in sociology, with a sub-specialty in medical sociology,  from Rutgers University, is a published author and poet, and has just recently completed her memoir, UNEXPECTED LIVES.

True Love or Our Never-Ending Quest to Change Each Other

Posted By on February 1, 2012

Change is in the air. All sorts. All ways. All driven by society. This perpetual transformation pushes developments in technology, science, economics, communication, education and … the list goes on.

          There’s another equally long list, certainly significant, but not quite so dramatic, that involves much smaller change: really just a penny’s worth. Nevertheless, that kind of change seems to be perpetual too. I’m referring to the behavioral changes we humans try to induce in others, the changes we can’t resist promoting: weight change, smoking cessation, healthy eating, green living, exercise, frugality, neatness, listening, etc.

Attempting to bring about behavioral change in others is a habit that we humans believe is within our rights. Unfortunately, it is frequently circular, such as ‘I want to change you; you want to change me.’ Thus, you and I bounce back and forth chaotically and, in the process, provoke little change.

And so, through the years, I have learned that when we try to change certain behavioral characteristics in others, failure is often at hand. That does not stop me. Nor does it stop anyone else.

A first-person example is required here. When I was very young, and until I left my father’s home, he often said to me, “Suzann, turn off the lights when you leave a room. I don’t have stock in the United Illuminating Company.” My beloved father’s comment was just a little testy. And I found it weird, when some years later, my husband Ed said the same thing in almost the same words.

In the early years of our marriage, Ed would begin by saying “Honey, please turn off the lights when you leave a room.” In later years, I’d hear, “Sue, shut off the lights when you leave a room! We don’t own shares in Public Service.” His tone was just a bit testy, too. The campaign, by both my dad and my husband, to effect change in me broke down but never stopped. To this day I sometimes hear that command in my sleep, “Turn out the lights when you leave the room!” Admittedly, Sue’s failure to change.

In my defense, I like lights on in a room even before I get there. Therefore, I don’t turn them off when I leave. I can’t explain this but it’s a fact.

Our grandson likes lights too. When Jonah was about 2-1/2 years old, he started playing with the light switch near my side of the bed. I didn’t try to change him. Oh no! I didn’t say, “Jonah, stop playing and turn off the lights.” I simply sat quietly and watched as he turned the switch on and off, whispering, “Yights on, Yights off. Yights on, Yights off.” I thought Jonah had to be exceptionally smart in order to understand the connection between light and switch.  That story might not be relevant to this discussion. Sorry.

So, returning to the topic of behavioral change: the failure to attempt change in others exhibits a strange but clear pattern. At first, change may or may not seem to work; then it may work intermittently; finally, the change, if it has occurred at all, disappears completely.

Reducing that concept to the personal once again, my husband Ed has tried over the years to change my conduct on many issues besides lights. He and I just celebrated our 50th wedding anniversary. I was lucky to have found him. He is wonderful. But I do recognize that we have lived together happily for all those 50 years while continually trying to modify each other’s behavior. `

On one of our earlier dates, Ed took me to La Cave Henri VIII on East 50th Street in Manhattan. Over dinner that night, Ed made his first attempt to change me. He couldn’t resist. I was not a good eater. In fact, I was a lousy eater. My other dates would look at my plate at the end of dinner and ask, “Is that all you’re going to eat?” They were thinking of their newly emptied wallets and envisioned most of the expensive dinner on my plate disappearing with the garbage.

In great contrast, my honey-to-be, looked at my plate on the table of the elegant La Cave Henri, looked at the fork in my hand, looked at most of my food scattered to the edges of my plate, looked at the big empty space in the middle—my effort to make the uneaten food vanish from sight—and said, “If you don’t want to eat anymore, don’t. But don’t play with your food.” I shrugged, put my fork down, and grinned. It was almost but not quite love at first sight. I  was truly impressed.  Ed’s attempt to change Sue was a success. It was a noteworthy and courageous undertaking.

Five months later we became engaged; two months after that, we were married. Bliss for another two months.

Ed and I moved into a rental apartment in Plainfield, NJ. Then, he and I had our first fight and I pulled out a suitcase to pack up and leave. I was very angry but don’t remember why. In short time, though, I recognized the implications of the suitcase lying open on the bed: it was nighttime, I had no car and didn’t know where to go even if I had one. In truth, I was relieved when Ed grabbed the empty suitcase, closed it with a loud bang, and thrust it away into the closet where it was normally stored. After a short but intense staring match, we talked it out. I would no longer run away. Our discussion and Ed’s firm stance had changed me, and introduced the idea that true love conquered all.

Later, however, he told me that his actions were based, not on love, but on what to do with all the wedding presents we had recently received. Give them back? Too embarrassing. What a way to keep a marriage going, no? Nonetheless, Ed did modify my behavior. I had learned to stand my ground and fight back. I’m not sure that he was happy about that. Partial success on Ed’s part to change Sue.

Yet another attempted change: over time, Ed has complained that I don’t say I’m sorry, even if I’m not. That doesn’t make sense to me but it does sound terrible, doesn’t it? “Why can’t you apologize,” says he. “Because I didn’t do anything wrong,” says I. If I’m not sorry about some perceived wrongdoing, from Ed’s perspective anyway, how can I say I’m sorry? It gets complicated, but Ed continues to work on it while I remain firm. Again, Sue’s failure to change.

On the other hand, Ed doesn’t close the side door when he leaves the house for the mail—our mailbox is about 100 feet away at the foot of our driveway. I’ve tried everything. First, if it’s winter and if I’m in a nearby room, I whine that I’m cold when the door is left open. Next, I tell him that he’s wasting the heat and costing us money. At last, I start to holler. To no avail. The door stands open when Ed gets the mail. I don’t bother in warmer weather. I’m not cold. And yes, I know. It’s my fault he doesn’t change. I’m not consistent. But what about Ed’s inability to wipe his feet when he comes in from the outdoors and tracks all kinds of junk onto my clean kitchen floor. I plead, “Please, please wipe your feet, Ed.” Consistency is not an issue here! Ed’s failure to change includes two for one in this paragraph; not fair, you say? I’m sorry.

Which reminds me of a story about Marlo Thomas and her husband Phil Donohue when they were newly weds. He flagged down a taxi one day and, in a gentlemanly gesture, held open the back door of the cab for his wife. While he was doing that, Marlo hopped into the front seat next to the cabbie. Phil was astounded because once he had seated her in the back, alone, he would have gotten into the front and spent the ride blithly chatting away to the cab driver on his left, as was his habit. As was Marlo’s habit.

Did he change Marlo? I’ll bet he tried. Did they work it out by taking turns, by flipping a coin, by calling out “Odds or evens? once, twice, three, shoot!” or did they simply fight over the front seat each time they took cabs together? How was it settled? Was it ever settled? Probably failure to change on both sides.

Well, did I change Ed? Did he change me? What about Marlo and Phil? Any changes there? Probably not as often as any of us would have liked. Our attempts, though, are as perpetual as our hopes for modification. And despite failure, we humans remain everlastingly optimistic about changing the behavior in others, especially when it comes to our loved ones.

Not that it’s impossible . . .

Dear Reader: What about your attempts to change your loved one? Anything interesting?

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Suzann B. Goldstein lives with her husband Ed in the Watchung mountains of New Jersey. She is co-founder of THE VALERIE FUND, has her Master of Arts degree in medical sociology from Rutgers University, is a published author and poet, and has just recently completed her memoir, Unexpected Lives.

Happy New Year!

Posted By on January 1, 2012

Hi Everyone:

My post today is a series of short, evocative poems in honor of the New Year. They fly out to you, wonderful readers, with my best wishes for a very happy, healthy, and peaceful 2012. Special mention also speeds through cyberspace to my terrific husband Ed, born on January 1, the most exceptional New Year’s baby there ever was — Happy Birthday, Honey. He has loved me for 50 years; hard work that, especially since it includes reading all rough drafts posted to my blog, Unexpected Lives!

My poems of choice are haiku1. After reading all three I believe you’ll nod your head, grin, and then, as I did, find them permanently glued to your psyche.

This first haiku is appropriate for those of you who feel just a bit gloomy come 1/1/2012, or who simply want to bypass the annual celebrations. Know that you are not alone!

New Year’s Day­­­­­ –

Everything is in blossom!

I feel about average2

 This second haiku is indulgent: I love chocolate at breakfast time.

New Year’s Day –
granola breakfast special
with chocolate chips
3

And this last speaks to the sheer beauty and hope embedded in the new year.

Night snows
the words on New Year’s Day
clean and white3

From my family to yours: CHEERS! BOTTOMS UP! L’CHAIM! SALUD!

The next post to my blog will be on 2/1/2012. I’ll see you then!

~

1)      Haiku is an unrhymed, syllabic form adapted from the Japanese: three lines of 5, 7 and 5 syllables. Because it is so brief, a haiku is necessarily imagistic, concrete and pithy, capturing a single moment in a very few words. By Bob Holman & Margery Snyder, www.About.com Guides.

2)    Written by Kobaayashi Issa (1763-1827), a Japanese poet and lay Buddhist priest of the  Jōdo Shinshū sect, this haiku is one of many translated and published by Robert Hass in 1994.

 3)   A Dictionary of Haiku Classified by Season Words with Traditional and Modern Methods  by Jane Reichhold www.ahapoetry.com/aadoh/newyear.htm).

 Suzann B. Goldstein lives with her husband Ed and a tree named Buster, (Read about a Shih Tzu named Buster; 12/1/2010 post, A Half-baked Story About a Crazy Dog and a Nutty Squirrel; Source: www.unexpectedlives.com). Sue is co-founder of The Valerie Fund, has her Master of Arts degree in medical sociology from Rutgers University in New Jersey, is a published author and a poet, and has just recently completed her memoir, Unexpected Lives.

Books of Glass

Posted By on December 1, 2011

I’d like to tell you about the glass books — 8” x 10” pieces of clear glass hinged together in pairs, and graced, front and back, with wonderful works of art by everyday folks. Each of these ‘books’ tells a different and very human story about the effects of trauma and the coping behavior that might stem from it including substance abuse, eating disorders, anger, and everything else imaginable.

That’s the GlassBook Project in brief. The concept was created in 2009 by Rutgers University professor and artist Nick Kline in collaboration with Project Partner Helga Luest, the Witness Justice national nonprofit organization, and other artists, writers, survivors, students, and community organizations. Through the GlassBook Project, they hope to raise country-wide awareness and understanding for the way in which people respond to the abundance of emotional and physical wounds that seem to exist today. Since its inception the books have been exhibited in art galleries, educational institutions, and at federal and state meetings. They have drawn much attention.

Finding a way for the individual to express his or her reaction to personal trauma via an artistic form requires digging down deep into the psyche in order to first comprehend what is happening and then to interpret that knowledge for others to see – in this case, designing art-covered glass books that become a means to an end. Thoughtfully expressing the responses to trauma through a glass page is as significant as the end goal to disseminate information: in other words, to educate. Thus, the GlassBook Project is not only about creating images on glass: it is a teaching moment for those who see beyond the artistically bright colors and glittery objects; it is about reactions and the need to understand.

As terrific as it sounded, when the idea was first presented to me as a project for the Mom2Mom2 peer support program, I was skeptical. How would the GlassBook Project be helpful to the program’s recipients, primary caregiver mothers who have a child, or children, with special needs, e.g., autism, developmental delays, cerebral palsy, leukemia?

Mom2Mom’s program director, Cherie Castellano, however, recognized the importance of the GlassBook Project. Under Cherie’s wings, interested moms who were connected to Mom2Mom gathered to create their own glass pages with the guidance of artists Sarah Stengle, Nick Kline, and trauma expert and advocate Helga Luest.

The Mom2Mom group titled their collection of glass pages, Breathless. It was to be an advocacy and education effort, an artistic and absorbing outreach experience.

When the Breathless project began, I was invited to attend a training session although I wouldn’t take part in the project; I’d be away for most of the sessions. Besides being a huge fan of the Mom2Mom program, and despite my initial reaction, I was curious, and accepted the invitation, rather eagerly I must say.

On the day of one of the earlier training sessions, I sat down at a long, artsy-messy table in a sunny room in an art/media building on the Rutgers-Newark campus. Next to me was my friend, Amanda (Mandi) Grimes, a Mom2Mom volunteer and the mother of an adorable three-year-old Valerie Fund3 Children’s Center patient. We knew each other well. And in a flash, the two of us were discussing our glass book pages! No longer was I an observer.

As it turned out, the process is as interesting as the art itself, and working on a page, even as a novice, is as therapeutic as the satisfaction that comes with completion.

And so, as I listened to Sarah explain the techniques of working with glass, I also kept my eyes on the faces of the moms around the table. How did they react? Well, they were engrossed in every word that issued from Sarah’s mouth. The only sounds heard were questions asked and answered. The interest discovered as well as the short reprieve from the moms’ stress-filled lives was apparent in that GlassBook session and immediately changed my mind; both the experience and the resulting art I witnessed that day seemed invaluable to me and would no doubt be even more so once Breathless was exhibited.

The moms’ work,  the materials used, the colors, the stories, and the supportive camaraderie discovered at that table were all part of the GlassBook Project. But the work was not yet done. When the glass pages were finished, each mom had to write an artist’s statement describing the meaning behind her art. No easy task that. Yet both the art and the artist’s statement would, I had no doubt, be wonderous.

Afterwards, over lunch at a diner and through emails, Mandi and I discussed the whys and wherefores underlying the art, hers and mine. Our two glass pages would be linked together and although she and I talked, I had nothing to do with the the concepts essential to our  book. Mandi worked it out and put it all together; I contributed the photos! And what a job she did. I was truly breathless.

I saw our glass books displayed for the first time at the Autism NJ annual conference in October 2011. Mom2Mom’s Cherie, autism expert and advocate Mary Beth Walsh, and I had presented a workshop on resilience based on a book we are co-authoring, working title: Resilient Mothers in Challenged Families. Mandi and my husband Ed set up the Mom2Mom glass books display while Cherie, Mary Beth, and I discussed resilience in front of about twenty mothers of children with autism.

Later, as I walked up and down our exhibit table slowly examining each glass page, I saw that the transference of the moms’ trauma responses onto artful glass pages was done with such beauty and honesty that it did indeed take your breath away.

The small missing link was my artist’s statement. Everyone bothered me until I finally wrote the story behind my glass book pages. Following is Mandi’s statement and then mine; they are accurate descriptions of the art that traced our trauma and the trauma that guided our art.

Amanda Grimes’ Artist Statement

You are looking “through a mother’s eye” on the day I received my baby’s diagnosis of Leukemia.

In my book, I wanted to express the traumatic experience of my son and me. At Jacob’s birth, I had finally found my world. It was my beautiful baby boy. My job when I became a parent meant to love and protect my child. Everything I did, I did for him, and having him made some of life’s crazy turns easy…until the date that I never want to remember. I engraved this date on the glass, barely visible to signify that it will always be there—February 16, 2010.

Behind the date is a mirror with the image of the world, because when I became a mother, my child instantly became my world. But at that date and time, my world was also shattered. Hurt and fear took over, and I knew something was terribly wrong with my only twenty month old baby. I was completely devastated to learn there was a monster inside my baby boy that was stealing his smiles.

On the back side, you can see the picture of my eye, with my baby boy in the middle. This monster forced him and me into a bubble and a new over-protective life. We could no longer participate in everyday activities. My baby was trapped in a bubble that trapped me inside as well. I want to share this devastating experience with viewers, to expose this new, isolating world that I must continue to live in, a reality that I didn’t ask for.

Suzann B. Goldstein’s Artist Statement

The front cover of my glass book page shows a hazy photographic image of my two children smiling at me as they lean back against a beautiful cactus tree, a Pachypodium lamerei. In my imagination, the clarity of the tree’s leafy, enveloping branches shield the girls from harm. The back of the glass piece shows a blurred view of the same protective tree while my daughters have moved forward into the light. The fused imprint, front and back, always arouses in me a gamut of emotions from sadness to astonishment.

Both girls, two years apart, were diagnosed with cancer at different times in their brief lives: Valerie diagnosed at three with bone cancer and lost to us six years later, and Stacy diagnosed at twenty-five with breast cancer and gone twelve years after that.

Embedded in glass, their photo, taken years earlier and inventively superimposed in front of the tree offers me a well-preserved memory of Valerie and Stacy playing on the lawn in front of our home. Although gone from us now, their joie de vivre shines through and continues to shine undimmed for all those who knew them.

The three forms as a whole represent the in-between moments of life — those moments that recall a happier time despite illness. The unusual and memory-inducing permanence of the glass page allows me to return their broad smiles with a grin that is sometimes mixed with tears. It is the same reaction I get when I pass by the living tree on my many walks along a quiet Florida street. Those memories are important to me.

I call that tree Georgia. It looks like it might be a Georgia O’Keefe watercolor. But while fully-leafed in this piece, Georgia is most often bare. Nonetheless, she remains a sight to behold: tall and straight with branches stretching high to the bright blue sky.

And so, my girls and Georgia are a reminder to look upward when I feel down, to remember my lost children and their smiles, and to enjoy nature’s beauty as well as the memories that reside within us all.

My thanks to Mandi Grimes who so creatively developed my glass book pages as well as hers. She and I are connected through friendship, but it is more than that. She knows me well. We talked long about my piece but it was Mandi, the artistic mother of a three-year-old, who captured the concept and did the hard, innovative work of putting my scattered thoughts to glass.

Please click on http://www.glassbookproject.org/. In the beginning, simply wander through the site and see the many gorgeous glass pages. Then, on the left side of the screen, scroll down to the Glass Books section and click on Breathless. The colorful icons at the top of that screen will show you each of the moms’ artful work. Find Mandi’s pages and mine under the letter G. See how they are hinged together. They evoke anguish and joy both at the same time. Look carefully. Note that these pages as well as all the others speak to a mother’s love, a love that remains steadfast and transparent throughout time.

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1. The Mom2Mom program at the University of Medicine and Dentistry of New Jersey – University Behavioral HealthCare (UMDNJ-UBHC) provides a compassionate and encouraging environment for mothers of children with special needs. Call 1-877-914-6662 or email mom2mom@umdnj.edu.

2. The Valerie Fund, supporting comprehensive healthcare for children with cancer and blood disorders since 1976; www.TheValerieFund.org., 973-761-0422.

Suzann B. Goldstein lives with her husband Ed and a tree named Buster (Read about a dog named Buster; 12/1/2010 post, A Half-baked Story About a Crazy Dog and a Nutty Squirrel; Source: www.unexpectedlives.com). Sue is co-founder with Ed of The Valerie Fund, has her Master of Arts degree in medical sociology from Rutgers University in New Jersey, is a published author and a poet, and has just recently completed her memoir, UNEXPECTED LIVES.

 

Lunchtime!

Posted By on November 1, 2011

Lunching out for me can be like those in-between times when the long, hard periods in life seem to vanish and the smiles take over. When I’m alone I’ll go to a diner, order a tuna salad sandwich, some iced tea with lots of ice, and then eat quietly while I’m either editing an article or reading a book. I take my time, pick off the pieces of the sandwich I don’t like, chew, drink, and relax. If I’m with someone, I chat freely. Either way lunches out are terrific, as are breakfasts and dinners too. I love ‘em all.

My partial list leads with a lunch far different from the norm but fun, mesmerizing, and a brain boost to boot. Five of us sat in a booth last July, at Due Mari, an Italian restaurant in New Brunswick: my husband Ed and I1, Kim Hirshfield, MD, PhD, and Vassiliki (Valia) Karantza, MD, PhD, two of our favorite young physician scientists, both medical oncologists at the Cancer Institute of New Jersey2 (CINJ), and Michelle Walker, CINJ’s dynamic Director of Annual Giving. Deb Toppemeyer, MD3, the Director of CINJ’s Stacy Goldstein Breast Cancer Center usually joins us but had to cancel that afternoon because of a last minute meeting.

The yearly lunches with Kim and Valia, Deb and Michelle, are a bonus for Ed and me, and keep us in touch with the latest research and news at CINJ. As time passes, we become more familiar with each other and our conversations veer toward the free-and-easy; only afterwards come the serious discussions. The various topics? This year, they ranged all over the place:

· Herniated discs in the neck — Kim, Valia, Sue

· Exercise — running (Kim, Valia), speed walking (Sue, Ed), weight lifting (Valia, Ed)

· Work hours — very long for all but Sue and Ed; fulfilling for everyone

· New homes — trials of moving and reconstruction (Kim, Valia)

· Love life — not telling, but I did ask; at any rate, Ed and I are great!

· Cancer research — Kim and Valia talked about their lab work and what they were working on; Michelle sat quietly and beamed.

During the research portion of our lunch I picked up a few dandy sounding words. If I were Stephen Sondheim I’d put them to music. For example,

· Autophagy (aw-tofa-jē: segregation and disposal of damaged organelles [subcellular units] within a cell4 but better know to me as garbage cells).

· Angiogenesis (an′jē-ō-jen′ĕ-sis: development of new blood vessels5)

· Apoptosis (ap′op-tōsis: programmed cell death6)

Besides the essential quality of those rhythmic sounding words, I’d like to share a bit of Kim and Valia’s research work. I’ve taken the liberty of combining a small number of their individual writings on breast cancer and breast cancer outcomes into a whole without using individual citations.

To begin with, the research generally shows that similar to other cancers, breast cancer, the most common female cancer and the second most common cause of cancer death in women (lung cancer is number one7), often exhibits genetic changes that allow tumor cells to bypass the mechanisms controlling normal cell growth and cell death.

In search of these changes, Kim and Valia are focusing on the very basics of science: cell growth, cell division, cell death, and examining how to prevent DNA mutations from forming. A few of their experiments include a gene involved in cell growth and cell division. If too much of this gene is expressed, cells grow when they shouldn’t and make too many new cells when they aren’t needed.

Given that knowledge, the two scientists tested for changes within the gene and uncovered a surprisingly strong correlation between one specific change in the DNA: women carrying that particular genetic change are actually at lower risk of developing an early onset, hormonally-responsive breast cancer (about 60% of all breast cancers are estrogen-receptor positive, i.e., sensitive to estrogen8 ). They are also less likely to have a recurrence of their breast cancer. Now that is exciting! Nobel Prize in Medicine, anyone?

It seems, though, that too much of the gene makes breast cancer cells resistant to tamoxifen, an anti-estrogen drug used to treat and prevent breast cancer. Since the gene is not expressed in normal breast tissue to any significant degree, what happens that allows the breast cells to grow and divide when they shouldn’t? Currently under investigation is just how another change in this gene may lead to breast cancer and resistance to hormonal treatment.

Further research was based on an FDA-approved drug by others at UMDNJ to treat Lou Gehrig’s disease. This drug, targeting the gene under discussion, has now been shown by Kim and Valia that, in lab cultures, when both tamoxifen and this drug are used in combination, more hormonally-responsive breast cancer cells die than with either drug by itself. Therefore, if the gene’s actions can be blocked, sensitivity to tamoxifen would be restored and fewer women would have recurrence of their disease. More work is required, of course, but I believe that we’ll see positive outcomes arising from this research in the not too distant future.

To put it all together, Kim and Valia’s current research into this gene seeks to uncover who might benefit from the drug when combined with hormonal agents such as tamoxifen. Their long-term goal is to translate the scientific findings into clinical work and provide solid laboratory data for the rational design of breast cancer treatments9, an approach called translational medicine: in short, ‘from the bench to the bedside and back,’ the energizing mantra for all at CINJ and the starting point for our very memorable lunches.

On a separate note, my daughter Stacy and I used to eat lunch out whenever we had the chance. Which was pretty often. We would both order tuna salad sandwiches, mine with lettuce and tomato — no tomato for her —, iced tea lots of ice, no sugar, slice of lemon for me — none for her — and then once the sandwiches were in front of us we’d precede to squeeze out most of the tuna and daintily push the pickles onto another plate. By the time we finished customizing our lunches, half the tuna sat on our plates instead of between slices of bread. Mayonnaisey fingertips were always on the agenda. There was no deviation.

It was less than a ritual but more than a mere custom. Stacy and I reveled in it. If anybody was with us for lunch we’d very sincerely apologize for the mess. But just the two of us? We did it our way. Not surprisingly, either one could rattle off the sandwich order for the other without hesitation. Add some gossip to the deal and lunch was just plain fun. Those memories are cherished.

The fancier lunches are almost as memorable, such as an elegant lunch that really had the cake but, unfortunately, not the tuna. In celebration of my 40th birthday, two of my best friends picked me up at my house in North Plainfield without a word as to where we were going. I only knew it was a surprise birthday outing. I was told not to wear blue jeans.

Driving into New York City was surprise enough but when a valet took the car in front of Lutèce — food critics proclaimed the restaurant’s wonders for years before it closed in 2004 — I was stunned and quite nervous about the food. It is certainly true: I ate only tuna salad sandwiches for lunch. But Lutèce served the wine that was the salve that soothed my picky stomach.

Without doubt, it was a wonderful afternoon despite shoving the strange-looking food to the edges of my plate; if I didn’t recognize it I wasn’t going to eat it. And embarrassing myself even further, I asked several questions continually throughout lunch. “What’s this?” and, “This looks kind of funny. What do you think?” Or, “Did I order this?” Oh well …

Nonetheless, all was forgiven when the birthday cake arrived. It was a chocolate fantasy like no other, and its arrival at our table introduced me to ganache, a sweet creamy chocolate mixture used as a filling or frosting. That ganache topped my cake like a queen’s crown and my finger was the first to ruin the perfect swirls. I have another friend who recently commented that my food habits hadn’t changed a bit. Hmmm.

Far from the elegant, and before Ed retired, I had a desk on the other side of his kitchen cabinet showroom. Either he or I would bring in sandwiches for lunch and eat on his blueprint-covered, rather sloppy desk or on my neat one. Real down and dirty but heavenly nevertheless. Lunches out, no matter where or what kind, are simply plain old fun.

Oh, but I cannot discuss lunches without talking about my Wednesdays with Ann. We met in a Rutgers sociology graduate class in 1986. Ann and I were both working toward our PhDs in medical sociology. She was a nurse therapist and I was planning on a free-lance research career. After getting acquainted during the first class, we discovered that her office was not far from my house. Meeting nearby for lunch to discuss sociology was the next step. Soon, sociology became less than a fly on the wall of a diner in Berkeley Heights.

 Ann and I have been meeting weekly ever since, our families commingle when given the chance — we all love each other — and lunch has been updated to a restaurant-brewery, an eatery slightly fancier than the diner. There is no tuna; I am distressed but survive. Still, the wait staff is wonderful. Any one of them will ask their question of the day, “The usual?” We nod and off they go to get two iced teas with lots of ice. Ann and I smile, sit down, and immediately start talking about our lives in 7-day increments. Nothing gets past us, except maybe, sociology.

 One newly-instituted lunch on the outside grew from Ed’s retirement. If one of us has been away from the house but is soon to head home, a quick call suggesting we meet for lunch is obligatory. I always say yes as does he. And now that I think of it, either one can order for the other as well: tuna salad sandwiches, iced tea, Ed gets the pickle. And I sit back and heave a sigh of relief as we chatter nonstop, our conversations filled with gossip, business, politics, and volunteerism. We have fun.

 And it’s clear. I enjoy all the memories of those in-between times, however they may come about, however large or small they may be. Like my lunchtimes, they are grand memories that yield smiles over and over again. Check out yours. Are they smile-worthy? I’ll bet they are.

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 1. Ed and I first discovered CINJ years before our lunches with Kim and Valia. We were impressed with the quality of the work CINJ did, both in research and in clinical services, and decided to help support two young postdoctoral fellows in our daughter Stacy’s memory; both were unknown to us at the time as they transitioned to positions on the UMDNJ-RWJMS faculty. Several years after that, we officially endowed the Stacy Goldstein Breast Cancer Center at CINJ. At the dedication ceremony in June 2009, both Kim and Valia, our two fellows, had, by then, transitioned to faculty as Assistant Professors of Medicine and were well-known to us. They spoke and caused tears on the faces of everyone listening. If I remember correctly, I think some of those tears were on Kim’s face as well. They were wonderful speakers and their words touched us all.

2. The Cancer Institute of New Jersey (www.cinj.org) is the state’s first and only National Cancer Institute-designated Comprehensive Cancer Center and is one of just 40 in the nation. Its physician-scientists engage in translational research, transforming their laboratory discoveries into clinical practice, quite literally bringing research to life. CINJ is a Center of Excellence of UMDNJ-Robert Wood Johnson Medical School.

3. In September 2011, Deb was named the chief medical officer at CINJ. Her role includes oversight and responsibility for all of CINJ’s clinical objectives and she serves as CINJ’s ultimate authority on medical issues.

4. Stedman’s Electronic Medical Dictionary. Version 6.0. Lippincott Williams and Wilkins. 2004.

5. Ibid.

6. Ibid.

7. United States Cancer Statistics: 1999–2007 Incidence and Mortality Web-based Report. Atlanta (GA): Department of Health and Human Services, Centers for Disease Control and Prevention, and National Cancer Institute; 2010.

8. The New York Times. Science Times. Vital Signs. A. O’Connor. October 23, 2011

9. Kim Hirshfield, M.D., Ph.D. Assistant Professor of Medicine. The Cancer Institute of New Jersey. UMDNJ-Robert Wood Johnson Medical School; Vassiliki Karantza, M.D., Ph.D. Assistant Professor of Medicine. The Cancer Institute of New Jersey. UMDNJ-Robert Wood Johnson Medical School.

Suzann B. Goldstein lives with her husband Ed and a tree named Buster, (12/1/2010 post, A Half-baked Story About a Crazy Dog and a Nutty Squirrel. Source: www.suzannbgoldstein.com/blog). Sue is co-founder of The Valerie Fund with Ed, has her Master of Arts degree in medical sociology from Rutgers University in New Jersey, is a freelance writer and a poet, and has just recently completed her memoir, Unexpected Lives.

 

 

 

 

 

My Faith My Way

Posted By on October 1, 2011

My husband Ed and I and our family celebrated the beginning of the Jewish new year, Rosh Hashanah, with dinner at our home. I loved every one at that table so the evening was delicious.

Yom Kippur, the Jewish Day of Atonement, is now just a week away; that somber holy day begins on the eve of October 7. On that night, Ed and I will light yarzeit candles for our loved ones who have died and I will recite one of the few Jewish prayers I remember from Hebrew school. Just before sundown of the following day, October 8, Ed and I will go to our synagogue for the Yizkor memorial service. We’ll whisper the mourner’s prayer, I’ll cry, Ed will hold my hand tight, and we’ll leave. It is always hard.

And so, once again I am compelled to reexamine my faith, or the lack of it. And when I do, I think back to one of our younger daughter’s many hospital stays throughout the six years of her illness.

Valerie had been hospitalized at Babies and Children’s Hospital in New York, this time in mid-September 1974 after surgery to remove her right lung because of metastatic bone cancer. The procedure left our bouncy little girl pain-ridden and cranky. Her eating habits were always poor but this latest assault to her body suppressed what slight appetite remained. So, when she wanted Oreos, I raced to the cafeteria — Oreos by choice, though any cookies would do, nutrition be damned.

In a rush to return to Val with the cookies in hand, I took a shortcut. And, as often happens with shortcuts, this one turned into a drawn-out route through the main lobby of the hospital. On that accidental tour, I passed the hospital’s chapel.

A weary-looking woman, her sweater stretched tight over a very pregnant belly, was walking through the doorway. Never noticing the chapel before, I slowed down and peeked in. A narrow line of ten or twelve polished wooden pews ran the length of the room. Up front stood an unadorned altar. The chapel lights, turned low, cast a hazy, quiet authority over the interior and forced me to consider, anew, all things theological.

Brought up as an Orthodox Jew, I had attended Hebrew school at a conservative synagogue in Connecticut to prepare for my Bat Mitzvah, the ceremony symbolizing religious responsibility for a Jewish girl. I rebelled when I was twelve and began to torture my father with an infinite number of complaints delivered in a whiny voice. He gave in before long and I was allowed to quit. No Hebrew school, no Bat Mitzvah.

I cracked a bit of Dad’s heart with that decision but it healed quickly. He loved me too much. Yet, whenever Bat Mitzvahs were mentioned, he’d look at me and shake his head from side to side, the religious slight bringing a sad smile to his face.

While not confirmed as a Bat Mitzvah, I held a fixed belief in God: my father’s God; the God of the bible stories I read incessantly as a younger child; and the God who answered all my prayers — if my father or my older brother Stan didn’t get there first. Naïve? Perhaps. But the bible stories I grew up on, in those beautiful, oversized, full-color books I read while stretched out on the living room floor, were food for a child’s thought. Add to that, an interminable religious service followed by a raucous holiday dinner with my aunts, uncles, and cousins squeezed in around a huge dining room table, filled the very air with love and warmth. Even a youngster is touched by that.

Moving from the many to the few, my immediate family, close-knit but small, included my grandmother who lived in the apartment across the hall from us. Her daughter Edna, my mother, had died at 42 when I was not quite 10 years old and my father, my big brother Stan, and Granny — my wonderful though lopsided family — doted on and nurtured me throughout my growing years.

When he was twenty-six, however, my brother was critically injured in a car accident, and remained unconscious in a New York hospital until his death six hours later. I prayed. Oh, how I prayed for his recovery, but although Dad and I were at Stan’s bedside throughout his ordeal, he never awakened. My brother was unable to hear our last goodbyes. That night, in that hospital, I lost my best friend.

Belief-altering? Oh yes. Stan’s death did that. And so, in a meteoric turn around, the believer within me vanished and I withdrew from anything based on faith.

In contrast, my family’s secular values had settled easily into place as did my ample supply of optimism and tolerance regardless of circumstances. I believed religion was no longer needed.

As time passed, despite a persistent uneasiness about my religious views, I came to trust in the best part of the individual. Set in motion one by one, and multiplied by the vast numbers of humankind, the essential quality of goodness resides at the core of our humanity. Reality sometimes denies this, I know, but I tend to ignore that.

At any rate, confidence in the individual core held sway over my father’s omnipotent, unknowable God. To me, that God, supposedly benevolent, often appeared to lack mercy. When questioned, Dad and others with a religious bent responded to personal and worldwide horrors with a sigh and the explanation, “It is God’s will.” I had never been able to grasp the concept behind that statement. A doctrine about individually controlled human behavior made more sense to me. I understood that.

By and by, in searching for further details to structure my earthly opinions, I came across the Hebrew concept of Tzedakah, a charitable conviction that includes a variety of practices from giving aid and money to offering a smile or a courtesy. It’s an obligation that rests on rich and poor alike and requires respect for everyone. Thus, we give of ourselves and get back from others, maybe twofold if we’re lucky. It’s beautifully circular, it sits at our core, and is not such a bad formula to live by, whether a believer or not.

Years later, with Valerie seriously ill, I knew I had tried throughout my life to be helpful to others, to be as humane as possible, and to give what I could, when I could. And so, after Val’s lung surgery, I found myself calling for — praying to?— someone, something, to give back to me, and deliver my daughter from her dreadful illness. Divine intervention? My father’s God? Fine. I simply needed it done.

And so, like a wartime soldier alone in a dank and dirty foxhole, the disbeliever in me stepped back, just a little, just in case, and left open the possibility of a tender force hovering above and around. Help, however, did not arrive.

We lost Valerie in 1976 when she was nine, and in 2001, our surviving child, Stacy, died at thirty-seven after a twelve year battle with breast cancer.

If asked, I would have replied that my position on religion had hardened even further. As it turned out, it had only altered somewhat. Times change, beliefs bend, and thoughts become carefully, if minimally, modified.

Today, I recognize that I am clearly in doubt about an omnipotent being watching over us, but no doubt exists in my mind that I will be together with my daughters, my husband, and all my loved ones some day. Furthermore, I know that my father is watching me from above in all instances religious or otherwise. Is that spiritual? Or is it personal history and Jewish tradition coming to the fore?

The Hebrew concept of Tzedakah, the Yizkur prayers recited on the holidays, the special yahrzeit candles lit in memory of Stacy and Valerie and our other loved ones, the dinners with our family celebrating the Jewish holidays, and my effort to ensure that they all happen — a need I am somehow unable to resist — unites me with my religion and connects me to a faith that although it curves away from my father’s orthodoxy, remains embedded in my psyche. I am comfortable with that.

Yet I am curious about that pregnant woman in the chapel; and my thoughts shift back to that day, but not for the first time.  I have wondered about her over the years as the questions continue to pop up one by one. Who had she been visiting: her sick child, a young relative? Did she have strong religious beliefs? What were they? Did those beliefs help her through the tough times? Or was the chapel merely a calm spot in a chaotic universe? I should have asked her back then, in 1974. 

                                                        Sue Goldstein

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Suzann B. Goldstein lives with her husband Ed and a tree named Buster, (12/1/2010 post, A Half-baked Story About a Crazy Dog and a Nutty Squirrel. Source:  www.suzannbgoldstein.com/blog).  Sue is co-founder of The Valerie Fund, has her Master of Arts degree in medical sociology from Rutgers University in New Jersey, is a freelance writer and poet, and has just recently completed her memoir, Unexpected Lives.

Memorials Unlimited

Posted By on September 1, 2011

Last April, I heard about a memorial service held jointly by The Valerie Fund Children’s Centers* at Overlook and Morristown Hospitals. This special memorial for children who had lost their struggle to cancer or blood disorders takes place yearly in the Morristown Hospital’s Malcolm Forbes auditorium.

The idea was so natural and loving that I wondered why neither my husband Ed nor I had thought about it thirty-five years ago when we first established The Valerie Fund. A memorial was appropriate then. It is appropriate now.

The death of a loved one is devastating. A child’s death, however, is that and more; it can be likened to a piece of flesh torn out of a parent’s heart. It does not heal. That pain endures. Knowing this from personal experience – our two daughters were both lost to cancer, Valerie at 9 and Stacy at 37 —  a ceremony of remembrance for the Centers’ bereaved families and their friends is a thoughtful and touching way to commemorate the children.

Because I wanted to know more about the service, I talked to one of the social workers at the Morristown Center, marked the date of their next memorial, May 5, 2011 at 7:30 p.m., discussed the program, and promised to attend. Ed would go with me along with two good friends, Cherie and Mary Beth. We were going as objective observers, so I believed.

A few days later, I was asked if I’d like to include photos of our girls in the memorial video. I said, “Of course,” and sent in a photo of the two of them, both smiling broadly while standing in back of a lush rhododendron near our side porch.

Still trusting in my objectivity, I wondered how many would attend the ceremony, how would it be organized, and who would speak? I was convinced that I would be emotionally uninvolved.

On May 5th, the four of us arrived at the Morristown auditorium. People were milling around; some were chatting in small groups, some were silent with eyes lowered. We knew several of the staff members and the pediatric oncologists, said hello to them, did the introductions, and were handed small candles to light during the ceremony. I politely refused my candle since I wasn’t a participant. I was an observer.  

We moved into the auditorium with approximately 100 other people. Most sat up front and close to the stage. We chose to sit in the back. One lone woman sat behind us.

It was something, that memorial. Poems were read, music was played, social workers and parents spoke.  A list of the memorialized children was attached to the Service of Remembrance booklet. Moving down the list in order, each of the parents and those with them stood and read out loud their children’s names.  All four of us stood up when it was Stacy and Valerie’s turn; we softly spoke their names. My objectivity was fading.

A little bit later in the service, Cherie poked my arm and whispered about the woman who sat alone in back of us. I whispered back, “Get her attention and ask her to sit with us.”  And Cherie did. The woman got up, moved down to our row, sat next to Mary Beth, and became the fifth member of our group. She was no longer alone.

Cherie poked my arm again, this time to hand me some tissues. Oh yes. The objective observer had vanished. Out of control, I was now an active participant. My cheeks were wet and I was using tissue after tissue. Ed was stone-faced, his arm tightly around my shoulders, my hand on his thigh. Both my friends were openly crying and using tissues galore. How can you not cry for those children? And I re-learn something about myself daily. At this event, I learned, once more, that it’s okay to let others see your pain. I just forget that from time to time.

One Dad stood up from his seat a few rows away from the stage, hesitated, and then said “Today would have been my son’s eighth birthday,” and sat back down. Another Dad went up to the podium and spoke about his recent bout with cancer. “I know now what my son went through. He was too young to be that sick but he was very brave. I try to be brave like him.”  Moms got up and spoke as did a few of the siblings. They read poems or letters, and shared memories.  The Valerie Fund Centers’ staff did the same.

At some point, Johnny Cash’s “We’ll Meet Again” was played. I was never a big fan of his, but that night I loved him and that song, and I know I will love them both forever.

Next on the program were the photos of the children who had died. They were displayed one after the other on a huge screen over the stage. Various musical scores melded harmoniously as the photos flashed by. And then I saw our girls on that screen and, at the very same time, heard the music to “Over the Rainbow.” It was Stacy’s favorite. How extraordinary was that? She had watched the 1939 Judy Garland movie, The Wizard of Oz, yearly and when he was old enough, Stacy’s son Jonah joined her. It became an annual tradition that was now broken.   

Finally, the ceremony was over.

People wiped away their tears and roamed around the auditorium and the hallway. Parents spoke to other parents and told stories about their children as if part of a giant support group. Both the medical and the social services staff listened and told their own stories. Which brings me to . . .

September 11, 2001. It will soon be ten years since the destruction of the twin towers and the dear folks who worked there. Yet most of us remember where we were that morning, what we were doing, what our first thoughts were.

Early on the morning of 9/11, Ed called me from his office in Union and asked what was happening in New York City.  He sounded worried. An employee had a radio but there was too much static to hear anything clearly. I turned the TV on and saw the second plane crash into the south tower. I called him back, told him what I had seen, said “Come home,”  hung up, and phoned our daughter Stacy. Without thinking, I told her to grab Jonah, the au pair, and Willie the dog, put them all into her car and drive over to our house immediately. She did not argue with me.  In our mutual distress, we would be together.

And together our family sat and watched and listened in horror as the news unfolded.

Memorials of all kinds. They are sad, they hurt, and we remember those lost to us. We recall their voices, their smiles, their hugs, their tears. We do not forget, no matter the ordeal, no matter the anguish. We remember the stories and retell them freely to family, friends, and strangers. One story triggers another.  Episodes thought forgotten are brought to mind. We laugh. We cry. But we remember. And in the remembering, we keep the children and the adults who died, from whatever cause – accident, disease, terrorism, or war – close to our hearts and in our minds.

Memorials: whether in tribute to The Valerie Fund Center children who died from cancer or blood disorders, or to those who perished in the twin towers calamity, and to all the other loved ones who are gone from us. We remember you.

Sue Goldstein

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 *WWW.THEVALERIEFUND.ORG  The Valerie Fund provides support for the comprehensive health care of children with cancer and blood disorders in hospital-based medical centers throughout New Jersey and in New York City. While child-centered, the medical staff, the  social workers, child-life specialists, psychologists, and counselors at the Centers work together to help bolster the entire family.

Suzann B. Goldstein lives with her husband Ed and a tree named Buster, (12/1/2010 post, A Half-baked Story About a Crazy Dog and a Nutty Squirrel. Source:  www.suzannbgoldstein.com/blog.   Sue is co-founder of The Valerie Fund, has her Master of Arts degree in medical sociology from Rutgers University in New Jersey, is a freelance writer and poet, and has just recently completed her memoir, Unexpected Lives

Summertime

Posted By on June 1, 2011

Hi My Friends:

Memorial Day Weekend has come and gone in spectacular fashion, at least here in our nation’s capital where Ed and I spent a wonderful few days visiting with family.  I hope it was equally good for all of you wherever you were, on land, sea, or in cyberspace.

This brief post is to let you know that I am taking the summer off from writing my blog in order to complete some projects I’ve been working on. One is a book that will commemorate The Valerie Fund’s 35th year as an organization that supports comprehensive health care for children with cancer and blood disorders www.thevaleriefund.org. The book will be filled with stories of hope and healing written by the children, their parents, and their siblings. I’m writing the introduction and helping out with the editing. The second project is a book to be written with Cherie Castellano* and Mary Beth Walsh** and other writers who will contribute chapters on resilience in Moms with special-needs children. Both books have a September deadline. Oh boy!

 Keep watch. I will be back on September 1st with an essay that will knock your socks off.  So be prepared.

 Have a  safe,  healthy, and terrific summer.

 Sue

Suzann B. Goldstein lives with her husband Ed and a tree named Buster, (12/1/2010 post, A Half-baked Story About a Crazy Dog and a Nutty Squirrel; Source: www.unexpectedlives.com). Sue is co-founder of The Valerie Fund, has her Master of Arts degree in medical sociology from Rutgers University in New Jersey, is a published author, a poet, and has just recently completed her memoir, Unexpected Lives.

*Cherie Castellano is Director of the Cop2Cop, Vet2Vet, and Mom2Mom programs at the University of Medicine and Dentistry of New Jersey’s  University Behavioral HealthCare facility.

**Mary Beth Walsh, Ph.D, serves as Co-Chair of the Autism Task Force of the National Catholic Partnership on Disabilities and teaches at Caldwell College, New Jersey, in the Master of Arts in Pastoral Ministry program.