Unexpected Lives

Posted By Suzann 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 chips³

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.

Category: Family Style, Social Behavior | 2 Comments »
Tags: Haiku,, New Year, Poems,

Posted By Suzann 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.

###

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.

 

Category: Mom2Mom, Social Behavior | 4 Comments »
Tags: Art, Autism,, Awareness, Breathless, Coping, GlassBooks, Resilience, Rutgers-Newark, Trauma

Posted By Suzann 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-tof′a-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-tō′sis: 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 40^th 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.

 ###

 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.

 

 

 

 

 

Category: Research, Social Behavior | 2 Comments »
Tags: Breast Cancer, DNA Mutations, Genes, Research, Restaurants. Lunch

Posted By Suzann 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

###

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.

Category: Family Style, Uncategorized | 22 Comments »
Tags: Faith, Jewish Holidays, Religion, Tzedakah

Posted By Suzann 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 5^th, 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

###                   

 *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

Category: Grief and Bereavement | 8 Comments »
Tags: 9/11/2001, Bereavement,, Johnny Cash, Memorials, The Valerie Fund

Posted By Suzann 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 35^th 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 1^st 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.

Category: Time-Off, Uncategorized | Add Comments »
Tags:

Posted By Suzann on May 1, 2011

My husband Ed and I had dinner a few Saturday nights ago with four of his old friends from the Weequahic section of Newark: as a Connecticut Yankee, I was the outlier of the bunch. Their reminiscences about the Newark neighborhoods always seemed to go on forever and usually embraced the same stories. And always, their relentless recall prompts me to interrupt with a wisecrack immediately followed by the rolling of my eyes and an exasperated look my way from Ed. Nevertheless, I love them and they love me.

Geographic differences aside, though, the women and I had lots in common and so we usually sat huddled together at one end of the table and discussed education, literature, and children with special needs – much more interesting than the men’s stuff about sports and politics.

The diversity of our topics that night eventually led to a question asked by one of the women: “As a society,” she said, “have we become too open in our conversations around children, particularly when it comes to specific childhood disorders?” I answered that I believed it was better than hiding the problem. Still, my response was tentative.

I reminded them that when our younger daughter Valerie was diagnosed in 1970 with bone cancer, the nature of her illness was kept not only from Valerie and her older sister Stacy but from many family members and friends as well. Our fears were that someone would talk in front of the children about the threatening qualities of cancer, and so we told people that Val had a bone infection. Although I’m sure her connection to cancer was bandied about, those who did so were circumspect. And to my knowledge, the word cancer in relation to Valerie was never used in front of our girls.

I didn’t analyze the silence surrounding Valerie’s illness when we were a young family. Not then. Our silence was simply an uneasy but apparently necessary fact of life.

We lost Val in January 1976. Shortly after that, Stacy and I were sitting in the den talking about school. It was quiet in the house and I thought it was a good time to talk to her about her sister, her hospitalizations, and the many times Ed and I spent away from home: in other words, to add some more information about Val’s bout with cancer if that was what Stacy wanted. “Stacy, hon,” I said, “I’m sorry that we never told you about Valerie’s cancer. It must have been very hard on you, all those years, wondering what it was that made her so sick.” I laid my hand on hers but before I could continue speaking, she pulled away and cried out,  “Oh, no, Mommy! No, I would never have wanted to know that when Val was sick.” The horrified look on her face told it all. Should have just kept quiet, Sue. Remember? Tell children only what they want to hear. But how do you know what that is?

With that brief conversation, I had wrongly gauged my child’s emotional needs and increased my long-held confusion about secrecy versus honesty. All in one fell swoop.

In February 1976, when Ed and I established The Valerie Fund¹ in Val’s memory – the organization supports hospital-based medical centers for children with cancer and blood disorders – the word cancer had defiantly become the most common word issued from our mouths. All the same, my hesitation in giving a resounding yes to society’s current openness puzzled me. And so I told a story hoping that it would address my friend’s question as well as my doubts. It’s a story that I’ve told many times and one that continues to astonish me.

I’m walking down the narrow hallway of The Valerie Fund Children’s Center for Cancer and Blood Disorders; located at Overlook Hospital in Summit, it is our first Center. My mind is elsewhere. I do that when I can; it’s easier. A young woman startles me by reaching out from an open doorway. She grabs my arm. Smiling, she pulls me into a small Valerie Fund examining room and introduces me to her seven-year-old son who is on the floor playing with a toy truck. He makes chugchugchuging noises in his throat – his version of what a motor sounds like. We shake hands, that little bald-headed boy and I, and then he turns back to his truck. I grin. He’s cute.

His mother and I chat for a few minutes and then she begins to tell me about her son’s Lymphoma and his treatment at The Valerie Fund’s Overlook Center. Every now and then, from his seat on the floor, the little boy looks up at us but appears disinterested in our conversation; he has heard it before. Finally, his mom says, “I’m sorry that you didn’t have a Valerie Fund Center to go to when your daughter was ill. You needed it then as I do now.” I nod my head, not quite knowing what to say. We hug each other. I bend down to give her son a kiss good-by and I leave.

Back in the hallway, that mother’s comment about our need for a Valerie Fund Center when Val was sick provoked a delayed but earnest Yes indeed! from me. The memory that stands out the most, however, was the shock I felt when she spoke in front of her son about his illness. For hours afterwards, I obsessed about him and the concept of openness.

And then it disappeared from my mind’s eye. Satisfaction that the organization was working as we had envisioned it pushed all other issues away. Her son was being treated with the best that pediatric oncology had to offer right here in New Jersey with a minimum of family disruption. That was more than enough for me.

Time passed. Ed and I kept busy growing The Valerie Fund. We talked to groups about our daughter Valerie, her illness, the emergency trips into New York, the time spent away from our older daughter, and family disruptions. Both of us had become candid but the openness factor as an issue never came up.

More time passed. Our daughter Stacy matured into a beautiful, loving young woman, and at twenty-five, two years into her marriage, she was diagnosed with breast cancer. We talked about her illness with her then, of course. No more secrets. But again, we did not discuss the silence that Ed and I insisted upon when Val was ill. I thought about the impact of that silence – the lies it generated, the worry that someone might say something in front of Val or Stacy – but had not had a clear alternate plan to help our family through that period. Too late now. That was then. Social behavior had naturally changed with the years, hadn’t it?

We lost Stacy to breast cancer when she was thirty-seven. And we talked about her, her doctors, her hospitalizations, the fact of her disease’s early onset, and whatever other topics arose about our daughter‘s life and her illness. But about our silence all those years ago? Only on rare occasions, and always, for me, with that small sense of discomfort.

Most recently, I attended a Mom2Mom^{2, 3}training session at UMDNJ’s University Behavioral HealthCare.⁴ A young mother sat next to me. Her son Nicholas was diagnosed at five with Acute Lymphoblastic Leukemia and was treated at The Valerie Fund Children’s Center at Morristown Medical Center. Amy, Nicholas’s vibrant and exciting mom, talked about him. She said,

One year into his illness, when he was six, Nicholas asked me how to spell stinks. On a piece of drawing paper and crayon, he spelled out the word c a n c e r – he knew how to spell that! – and crayoned next to it the word as I spelled it for him: s t i n k s.  Nicholas then drew a flower beside the two words. Imagine! Those words, cancer stinks, next to a flower. How ironic is that?

Amy’s face lit from within as she talked about Nicholas.

Now see for yourself what else is happening with Nicholas. Look at his website – he is eight years old and CEO and President of Cancer-Stinks.⁴ His younger brother Ryan is Vice President and Mom Amy is the worker bee. Read what they have done to show other children and their families how to deal with illness. Understand what it says to all of us about resilience, and hope, and openness.

Isn’t that another astonishing story?

Today, a diagnosis of cancer, for children and adults alike, remains serious and is frightening but, in general, along with many other disorders, it is no longer sequestered in the closet. Although our daughter Stacy may not have been ready for openness as an eleven-year-old in 1976, it was Ed and I who initially closed that door. She just followed in our footsteps. Nonetheless, with time, we all did grow.

And without any hesitation, I have an answer for my friend.

Yes. I believe openness is good if sensitively handled and in an age-appropriate way. It enables reflection, it provides the opportunity for questions, and it allows for expression.

No more secrets. No more silence. No more fears that there might be a slip of the tongue or that the children might hear something that would frighten them without a chance for well-defined discussion. Openness is what I had been looking for as an alternative to our silence but I had been unable to see its outcome until Amy and Nicholas held open the door.

Openness may not have been for our family in 1970 and it may not be for everyone today. Yet I can’t help thinking: for those who practice it, openness must feel more comfortable than silence.

###

1. www.thevaleriefund.org

 2. www.mom2mom.us.com

3. www.ubhc.umdnj.edu University Behavioral HealthCare at the University of Medicine and Dentistry of New Jersey

4. www.unexpectedlives.com. Read my 3/1/2011 post, Special-Needs Moms;

5. www.Cancer-Stinks.com

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 of The Valerie Fund, 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.

Category: Illness | 16 Comments »
Tags: Cancer-Stinks, Friends, Hodgkins, Leukemia, Openness, Secrets, Weequahic

Posted By Suzann on April 1, 2011

 I began this post thinking that, lately, I may have taken on more tasks than I can handle. My husband Ed brought it to my attention not long ago but fearing that if he said too much he would find himself in the middle of a perfect marital storm, he didn’t push the issue.

 I do like being busy. It’s good for me and keeps my brain cells challenged. Yet Ed may have a point. His point, though, is not mine. He wants me to slow down. I don’t. Still, Ed’s comments stuck in my head, and I decided to find out how busy people coped with their – well – busyness.

The quickest way to do that was to search Google for overly busy people. The phrase seemed innocuous enough, but, as it turned out, I uncovered a bit of online venom. I was stunned to find, for example, that instead of busy people being admired, they were often considered annoying. Now that’s a topic more interesting than coping, right?

Most people believe they are busy. And most people are. But after reading several of the internet complaints, I discovered that people who babbled on about being too busy were seen as irritating and arrogant. The list of complaints also included folks who were so busy they were continuously late for appointments; they aggravated those who were always on time. Also making the list were those who made a big deal about how busy they were as a way of avoiding doing what they were supposed to do.

Finally, but perhaps the most evocative, were those people who were too busy to read poetry. Take Stephen Dunn’s poem titled Poem for People Who Are Understandably Too Busy to Read Poetry. Published in 1966, his poem’s first line is, “Relax. This Won’t Last Long.” I ended my search after that.

Taking the matter seriously, though, I speculated about famous people, none of whom I knew personally. I imagined that they didn’t belong to any of the categories – babbler, late arriver, avoider – on any regular basis, that is. I thought about Elie Wiesel, the winner of the 1986 Nobel Prize for Peace, whose themes are based on the Holocaust and its survivors, and Stephen King, the prolific horror specialist, whose subjects include vampires and evil machines. Those two are very busy. Do they have time to talk about being busy? I doubt it. Are they usually late? I don’t know. But they certainly don’t avoid their work since they’re both extremely productive.

And how about celebrity politicians like Nancy Pelosi and John Boehner? They must be working overtime given today’s contentious climate. Are they talking about being too busy? Of course not; they are too busy strategizing. Are they usually late? Maybe. And the avoidance dimension probably is relevant only when it comes to sensible discourse, not job-oriented tasks.

But what about my busyness? Am I making a big deal about it? I do seem to be repeating myself – see the first line of my March blog, the post about Special-Needs Moms, www.unexpectedlives.com. I quickly dropped the busyness issue from that post, however, in favor of writing about Moms, their kids with special needs, and the Mom2Mom* program at the University of Medicine and Dentistry of New Jersey.

At any rate, since I intended to continue all my various activities anyway, a good look at my busyness, or at least my sense of busyness, was in order.  My self-analysis included questions such as

• Why am I so busy? I like being busy.
• Am I so busy? Sure.
• Is talking about my busyness annoying to others? It’s possible.
• Am I often late for appointments? Well . . .
• Am I an avoider? Perhaps.

I must admit that the above is not a rousing endorsement of my social behavior. Therefore, I’ll change. It shouldn’t be too hard. I’ll simply

• Keep quiet about being soooo busy.
• Be on time for all appointments, both social and business. Unless something unavoidable comes up – but that may be hedging it a bit.
• Overcome – avoid? – the need to do laundry when it conflicts with writing that is determined by deadlines.
• Ditto the above for polishing the silver.
• Ditto again for roaming the malls.

 Everything else will be put aside except for eating, sleeping, and my husband until I’ve written my blog post, drafted the introduction to The Valerie Fund’s* forthcoming book, Stories of Hope and Healing (working title), tweaked the current version of my memoir, Unexpected Lives, and completed my chapter on resilience.  By the way, did I say that both the chapter on resilience and The Valerie Fund’s book are due in September? There I go again. Sorry.

It will not be easy but I can do it. I think.

###

Mom2Mom Helpline Program: 1-877-914-6662;  WWW.mom2mom.us.com

The Valerie Fund: WWW.thevaleriefund.org

Suzann B. Goldstein lives with her husband Ed and a tree named Buster, (under Recent Posts, please click on ”A Half-baked Story About a Crazy Dog and a Nutty Squirrel”). 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 a poet, and has just recently completed her memoir, Unexpected Lives.

Category: Family Style | 7 Comments »
Tags: Busyness, Google, Internet complaints, Stephen Dunn poem

Posted By Suzann on March 1, 2011

I’ve been whining lately about being too busy. I do that every now and then, but before long my feet hit the ground and I recognize others who are really busy. Like moms of children with special needs. Their kids may be diagnosed with profound mental retardation, terminal illness, or serious psychiatric problems. Or they may have mild learning disabilities, food allergies, or occasional panic attacks. The list goes on; it is long, varied, and staggering. Tending to each of them requires appropriate care, acceptance within the family, the school, and the community, and understanding. That list goes on as well.

Often forgotten, though, are their mothers. They too have special needs.

My education about special-needs children and their moms was furthered one morning as I sat down with my bonded-together-forever friend Cherie Castellano in her office at the University of Medicine and Dentistry of New Jersey’s (UMDNJ) University Behavioral Healthcare (UBHC). Cherie is skilled in peer support, helplines, and crisis intervention for people in high risk environments, and is program director for the Cop2Cop program,* the Vet2Vet program,* and UBHC’s latest, the Mom2Mom program,* a peer helpline for mothers with special needs children. Although we had met before (please click on www.Suzannbgoldstein.com/blog and read the “Vets in Need…” post), this second meeting turned into an in-depth talk-a-thon that lasted over three hours. Lunchtime arrived and our talk continued. We examined our lives, our families, and our goals.

We have much in common, Cherie and I. Cherie has two boys, an older son who is healthy in all ways and a younger one who is a special-needs child. I had two children both lost to cancer, my younger daughter Valerie when she was nine, her older sister Stacy when she was thirty-seven. We are volunteers for various charities; we love to write; and we are special needs moms.

As we talked, Cherie described her new grant-funded pilot project at UBHC, the Mom2Mom peer helpline which centers on moms with developmentally disabled children. My charitable antennas began to wiggle furiously. As co-founder  of  The Valerie Fund,* an organization which supports comprehensive health care centers for children with cancer and blood disorders, it seemed to me that the kids at The Valerie Fund Centers also came under the category of special needs; and their moms were sorely stressed. Listening to Cherie, I was certain that The Valerie Fund Centers’ moms needed access to the helpline. I pushed for them to be part of this project. But I didn’t have to push hard. Cherie’s head was nodding in agreement as I spoke.

In short order, we set up dates for Cherie to visit two Valerie Fund Centers. Since we needed evidence that The Valerie Fund moms would, in fact, utilize the helpline, focus groups were discussed and moms were asked to participate. As a result, one focus group has already taken place and another will take place in early March.

At that point, with my interest soaring, I attended, as an observer, the first Mom2Mom training session. About twenty-five other women were there. All had special-needs children: Autism, Cerebral Palsy, Down’s Syndrome, Developmental Delays, Epilepsy, and more. Those women were smart, engaging, and excited about the helpline.  

The training session ran for three hours. Following are some of the issues discussed in Cherie’s Mom2Mom PowerPoint presentation.

•  24 hour, 7 day a week helpline featuring peer support, telephone assessments, a network of referral services, and support groups.
• Daily worries about how life will unfold for child, for family
• Divorce rate estimated at 80%-90%
• Absence of mental health support
• Research shows impact on siblings, marriages
• Among Top Symptoms for Moms are Depression/Mood Disorder, Anxiety, Medical/Somatic complaints, Aggression/Violence, Physical Abuse

What I learned that day confirmed what I had imagined, that our moms at The Valerie Fund needed access to the Mom2Mom helpline. Speaking to a peer mom who had similar child health issues would prove, at the least, that they were not alone. It would contribute, I had no doubt, to a mentally and physically healthier mom.

But as adamant as I was to include The Valerie Fund moms in the program, I wondered – would I have called a peer helpline when my girls were sick? I thought back to one particular night during Valerie’s six-year struggle with bone cancer.

Her temperature had risen sky high. Val, thin and pale, lay quietly on our king-size bed as Ed and I took turns running a cool washcloth over her hot little body. At last her fever came down and she slept. After a while, Ed kissed me goodnight – he had work the next day – and walked into Val’s room, collapsing fully dressed on her bed. I sat down cautiously on the edge of our bed right next to Valerie, keeping guard over her and, at the same time, trying to calm my frantic heart. It was late.

I glanced at my watch – two o’clock!  Everyone else in the house was asleep. I stood up from the bed, checked on Valerie, kissed her gently on the forehead – still cool, I noted – went into Stacy’s bedroom, kissed her, and tiptoed in to kiss Ed: couldn’t leave him out. All were sleeping soundly.

I padded barefoot down the night-darkened hall toward the kitchen, stood staring at the sink for a moment, walked back to the bedrooms, and circled back again to the kitchen. Back and forth. Back and forth. What to do? I could not sleep and my brain was banging against the bones of my skull. I heard hideous screaming noises that would, if it were possible, burst out of my head and wake all my loved ones.

I was frightened, exhausted, and guilty, always guilty, so preoccupied with Valerie’s health that I could not spend enough time with Stacy. Though silent and upbeat about my fears during the day, the nights were a different story – oh those nights – my head noises were overpowering.

You bet I would have made a call and fast! I would have been dialing that helpline number at the first scream.

The next training session for future peer moms is in April and I’m anxious to learn more. Mom2Mom is a small pilot program and in need of more funding, but I am convinced it will grow and the funding will increase.

The moms need it.

###

Please click on www.thevaleriefund.org for more information.

Please call: 1-866-COP-2COP; 1-866-VETS-NJ4; 1-877-914-MOM2Mom. 

                       Program Director: Cherie Castellano MA, CSW, LPC

∞

 Suzann B. Goldstein, MA, is a medical sociologist, and a freelance writer, poet, and author. Sue and her husband Ed co-founded The Valerie Fund, an organization that supports medical centers for children with cancer and blood disorders in New Jersey and in New York City. In addition, the breast cancer center at The Cancer Institute of New Jersey (CINJ), in collaboration with Sue and Ed, was renamed the Stacy Goldstein Breast Cancer Center at CINJ. For more information, please click on www.cinj.org/treatment/breast_oncology.html.

 

Category: Mom2Mom | 2 Comments »
Tags: Special Needs Children,

Posted By Suzann on February 2, 2011

I was a car-deprived, stay-at-home mom. My husband Ed, on the other hand, had a Chevy and used it to drive to and from work; his car was not at my disposal. Yet I needed to take care of the household errands, do the marketing, and, at the same time, look after our two young daughters, Stacy and Valerie. Pushing the baby carriage along our suburban street was fine for chatting with neighbors. Piling a few bags of groceries next to my two little kids in the carriage was not.

The car issue became central after my last food shopping trip. My girls and I had just finished marketing. Val was an infant at the time and lying inside the baby carriage. Stacy, her big sister, sat facing me in a little seat attached to the carriage’s front handle. Without thinking, I placed a large, heavy bag of groceries on the carriage bed near Val’s feet just behind Stacy. In less than a nanosecond, the overloaded carriage lost its balance, and I found myself reaching out with one arm for Stacy who was falling head-first toward the floor, and with the other arm grabbing for Val, whose tiny body was sliding rapidly toward the grocery bag which was also heading for the floor.

While I calmed my crying girls, the cashier took care of the rolling cans of vegetables, a bouncing carton of milk, a smashed package of lamb chops, and some hamburger patties. Everybody else in the grocery store stood motionless and stared.

That scary moment was on our minds when Ed and I heard from a friend that her friend had a Dodge for sale. We looked at it, liked it, and bought it. The Dodge, a dull gray hunk of a car, seemed like a terrific bargain, and with modest fanfare, the papers were signed, and the Dodge was ours.

But just before the Dodge’s first birthday, the car refused to go into reverse. If I overshot the house I had to drive around the block, and once on our asphalt driveway, had to make a tight turn so that the car’s front end would face the street ready for the next day’s excursion. Some bargain, huh? Words cannot describe my frustration. Or maybe they can, but not with the children around.

Time passed, we got rid of the Dodge, and bought another car, this one brand new. The kids were still little: Stacy at four and Valerie just two years younger. The new car was a sky blue 1969 two-door Mustang and cost us the grand sum of $2,368. It had Cruise-O-Matic transmission, bucket seats, a radio, power steering, a heater, and a 6-cylinder engine. No air conditioning but who cared. That car was mine and I loved it.

My Mustang lived for six trouble-free years when it suddenly, and conveniently, died at the local gas station as we waited to fill up. The owner of the station kindly drove my girls and me home, and before dropping us off, offered to buy the now-defunct car for $175.00. He would put in a new motor.

The following weekend, Ed, Stacy, Valerie, and I went car shopping. At one car dealership, I spied a striking 1975 red two-door Mustang sitting flamboyantly off in a corner of the showroom. I wanted it. “Ed,” I said, “that’s it; that’s the car for me!” Ed looked it over and talked to the salesman who proudly called it an executive’s car. We were assured that it was not often driven, and was sold to us as such. It was our second bargain car out of three.

My red Mustang was bigger and flashier than the blue one, but though it had pizzazz, it did not act the part. The car doors were long, opened awkwardly, and were very heavy. Grunts issued from the mouths of all who tried to open or close one of the doors with merely a thrust of a hand.  

Adding to that, the Mustang’s engine had a hard time turning over on cold days.

Valerie, who was diagnosed with bone cancer in 1970 when she was three, had her right leg amputated above the knee in 1973 in an attempt to prevent metastatic disease. Shortly after we bought the red Mustang, however, Val, nearing her ninth birthday, had a bone biopsy on the tibia of her left leg, her good leg. The biopsy confirmed what the doctors already understood, that the cancer had spread.

At that point in her illness, Valerie could no longer walk on her own, and our bedroom became hers. She’d lay like a little princess on our king-size bed where she could watch TV and order everyone around.

Because Val was, by then, quite fragile, I had problems getting her comfortably settled onto the Mustang’s passenger seat. It was a twisting, turning process that ultimately failed unless I did some initial work in very speedy fashion.

It was late December and cold. Val had doctors’ appointments, many of them. I had to prepare the car for her by opening wide the passenger-side door, reclining the seat as far back as it would go, and layering a few pillows on it to soften the hard leather. I’d then run back into the house, carefully pick up my little girl – Val was lying on the couch bundled in her winter clothes – rush out to the car with her in my arms, and lay her down as gently as possible on the seat. My reward for all that work was to cover her with a blanket, hug her tight, and give her a sloppy kiss or two on the nose. This frequent ritual demanded an exaggerated wipe-off of that tiny nose mixed with giggles and a big shout, “Stop it, Mommy.”

Once we were both safely in the car, I’d turn the key, press my foot to the gas peddle, and start the engine. Or try to. My beautiful bright red car, a car that only an executive had driven, would refuse to turn over. We usually had no time to spare, but that damn engine was obstinate. 

One day, no longer able to bear it, I got out of the Mustang, slammed the door shut, and walked around the car searching for . . . what? I had no idea, but I soon found a tire that raised my ire, and kicked it. I stopped, finally, when I noticed my daughter grinning at me through the car window. I felt foolish about kicking the tire, or maybe chagrined because I was caught in the act. In any event, I got back into the car. After a bit of fast mumbling, such as, “Come on, come on, come on, car,” the Mustang started and off we drove.

I swear, I only kicked one of the tires once.

Nonetheless, it was simply too hard to get Val in and out of the car without hurting her. And so we traded in the red Mustang for a car with four doors: a boxy black Plymouth, the front passenger door and seat looking as if it would work wonderfully for Val. And it did.

But what to do with my zippy red Mustang? Put it up for sale, of course. Ed placed ads in the local papers and spoke to some friends who spread the word: the Goldsteins had a beauty of a car to sell.

Before long, one couple called and wanted to see the Mustang. They might be interested in buying it and would come to the house that afternoon to look it over. I had marketing to do but I’d be home in plenty of time to show them all the features of what I had begun to call Mommy’s Wildly Wretched Red Mustang.

In spite of my name-calling, that car, sitting in our garage, looked showy, shiny, and super. I’d miss it but the prospective buyers would test drive it, fall in love with it, and I’d tell them about the small problem of starting up in the mornings. 

I was still out marketing, however, when they arrived. Erin, our housekeeper, always friendly and chipper, invited the couple in and brought them back to our bedroom to meet Valerie. The four of them chatted for a bit, I was told, and then Val, with a smirk on her face, explained that in order to start the Mustang in the morning, “Mommy had to kick the tires.”

I saw their car as I pulled into the garage and unaware of the tire-kicking tale already told, hurried into the house to greet them. Racing toward our bedroom, I was bombarded by noisy laughter.  Everyone – all four of them anyway – seemed to be talking and laughing at once. At first, when I was told what Val had said, I was dismayed that my tire-kicking behavior had become public. Next, I realized that the car sale was probably doomed. My priorities may not have been in order, but in considering the situation, I began to laugh, and thought, oh well, someone else will want it. I hope.

Most important, though, my daughter had found a way to bring laughter to others and, at the same time, have some fun herself, no matter the circumstances. Although I was not there to see any of their faces, I can still envision Val’s as she drew a clear, verbal picture of my quirky behavior. I’m sorry I didn’t use trashy words during the tire-kicking episode, words that Val would have repeated with glee. She really would have  loved that.

Valerie’s new friends had a sense of humor, too, and demonstrated it by eventually taking the car out for a test drive, and phoning us the next day. I believe they wanted to buy Mommy’s Wildly Wretched Red Mustang because they couldn’t resist Valerie, her impish smiles, and her joie de vivre despite the severity of her illness.

And with that, I recognized, once more, how the unpredictability of life, of kids and cars and strangers, produce in-between moments of joy that forever touch the heart. Those moments become jewels that maintain their sparkle in the telling, over and over again.

###

Suzann B. Goldstein lives with her husband Ed and a tree named Buster. She is co-founder of The Valerie Fund, has her Master of Arts degree in medical sociology from Rutgers, The State University of New Jersey, is a freelance writer and a poet, and has just recently completed her memoir, Unexpected Lives.

 

Category: Family Style | 6 Comments »
Tags: Cars, Joy, Mustangs, Stay-at-home moms