Spring and Summer 2015 - Robert Wood Johnson Medical School

Healing Times
Issue l Spring and Summer 2015
[email protected]
www.rwjms.rutgers.edu/sids
TO HAVE LOVED AND LOST:
BEREAVEMENT FROM A FATHER'S PERSPECTIVE
Daniel Abrahamian
Our son Ronin was born a healthy baby boy on September 8, 2014. Nine months of anxiety
coupled with care culminated in a miracle of birth which both elated and enthralled the hearts of whom
loved me and my wife the most. Perhaps most fascinating for me was the manner in which our eldest
son Micah naturally gravitated towards his youngest and only brother. From a father's perspective, it
was almost as though the meaning of having children became illustrated before my very eyes in a way
which I hitherto would never have been able to conceptualize. The most intriguing facet for me was the
conceivable bond between the boys which seemed to have materialized instantaneously. Seeing my
sons together for the first time with my wife forged an ardent sense of paternalistic pride which echoed
the sentiments of my father before me. I now felt a sense of completeness which I believe most fathers
have felt at one point or another in their journey towards patriarchal fulfillment. Unlike my son Micah,
Ronin initially appeared somewhat fragile to me. I was almost reluctant to hold him and vividly
remember fearing that I might hurt him if I did so. How strange then it seemed that the last time I saw
Ronin he was the picture of perfect health; a plump, rotund, placid infant with bright red cheeks and
auburn-colored hair.
I will never forget the morning I received that call. The voice on the other end communicated
every parent's worst fear. Ronin had passed away. Throughout the course of the previous evening, he
had died of unknown causes. This was perhaps the most painful news I had ever had the misfortune of
hearing. My defense mechanisms were activated almost immediately as my mind struggled to grasp the
sad reality that I was now forced to confront. Although we ask ourselves "Why did this happen?", I was
too grief-stricken to attempt to surmise an answer; let alone investigate the question. I wanted to fingerpoint; I needed a scapegoat - someone to throw the blame on; to eradicate the burden of responsibility
which I now felt had been bestowed on my wife and myself as parents. It's easy to blame God; perhaps
too easy. God has always been the ideal scapegoat; the one to toss into the flames when we need a
reason. When we need closure it's natural to want to blame. It's natural to want to place attribution in
places where it doesn't always belong. Yet, this is not what I did. This was not the decision I decided to
make nor the route I chose to take. As with most tragedies, my instinct told me to look beyond the
obvious and take the less-traveled path towards higher meaning. Although this took a considerable
amount of time, this is ultimately what I did. In doing so, I freed others from the chains of blame. I
excommunicated disparagement and shunned attrition. I found meaning in Ronin's death by discovering
meaning in his life. The precious eight weeks that Ronin was with us gave me a deeper appreciation for
the beauty of life and highlighted the fragility of that selfsame beauty we all revere. I learned that we
must appreciate what we have while we have it. Love passionately and count each day as a blessing; for
you never truly miss the water until your well runs dry.
Rest In Peace; My Son,
Ronin Shaiah Abrahamian. 9/8/14 - 10/31/14
SIDS Center of New Jersey Toll Free Hotline 800-545-7437
LETTER FROM THE DIRECTOR
Dear Friends,
Sometimes we are asked by the concerned friends and relatives of grieving families, “Will the
parents ever get over this?” Mothers and fathers further along in their journey answer that while they
never do “get over this,” they have and are getting through it.
In truth, the cherished memory of one’s child and their absence from our lives is not something
we get over. For us, life has changed, we have changed, and those we love have changed as well. But
with the strength we muster from deep within ourselves, with the support of caring friends and family,
with the comfort many of us derive from faith, we mourn, we survive, we go forward, we rebuild, and
we get through the darkest days.
The daily pain lessens, we begin to feel unexpected joy once more in the simple pleasures of
life, and hope for the future emerges anew. The return of smiles to our own faces and those of others
who deeply felt the loss with us feels welcome and right. Memories of the life lost, so painful at first,
become treasures to preserve. Together, and over time, we are “getting through this,” but, no, we do not
“get over it.”
We hope that the stories and comments others have shared in this issue will help you in your
journey. And, as always, we at the SIDS Center of New Jersey are here to walk along the road with
you and offer our support.
Sincerely,
Barbara M. Ostfeld, PhD
Program Director
2
SIDS Center of New Jersey Toll Free Hotline 800-545-7437
GRIEF RESOURCES
Good Grief is a program helping children and teens cope with loss. http://www.good-grief.org
Pregnancy and Infant Loss http://www.storknet.com/cubbies/pil/mothersday-ilse.htm
Grief During the Holidays http://www.whatsyourgrief.com/dealing-with-grief-during-the-holidays-plan/
http://www.whatsyourgrief.com/64-tips-grief-at-the-holidays/
Modern Loss- Published by the New York Times, this article defines how the “online generation” redefines
mourning through evolution of the internet, social media, and blogs.
Modern Loss http://www.nytimes.com/2014/03/23/fashion/an-online-generation-redefines-mourning.html?r=0
National Grandparent Support Resource Originally started as AGAST.org, a SIDS grandparent support
group, this non-profit organization is now dedicated to assisting all grandparents when a grandchild dies. Now
AGAST has merged with MISS Foundation. Support is offered by an informational packet that helps
grandparents through their grieving and gives information on how to help their children (the parents). Peer
contacts are available, as well as support groups. http://grandbrigade.org/
“What's Your Grief” is an online blog that supports the statement that “one way to face your grief is to
understand it.” This web site offers free articles with information regarding grief. You can subscribe to What’s
Your Grief to receive posts straight to your inbox twice weekly. If you prefer to listen to your grief support,
check out our grief podcast. Recently, they posted a blog about understanding avoidance in grief. Often this
blog provides helpful examples of what you may be feeling during your grief work.
http://www.whatsyourgrief.com/avoidance-in-grief/
GOING GREEN
If you would like to receive this newsletter via email, please send your email address to
[email protected]. In addition to receiving the newsletter, email notifications will be mailed
announcing events and memorial celebrations or other SIDS Center activities.
PEER CONTACT TRAINING USING SKYPE!
At the SCNJ we understand that you may be grieving in isolation. Sometimes family, friends, and the
community do not truly understand the grief journey. Our peer support program is a way to connect with a
person who has shared in similar experiences, and understands how it feels to lose a child. Family members
who have experienced and coped with their own grief can be a vital source of support while you are grieving.
Sometimes, they are even more meaningful than those around you. Please consider volunteering for this
program if your child has died over a year ago. We need family members to continue the tradition in this
program. If you are interested in volunteering to be a peer contact or would like more information please
contact Lisa Capizzi Marain, MSW, LCSW at 551-996-5226 or [email protected].
SIDS Center of New Jersey Toll Free Hotline 800-545-7437
3
SEASONS OF GRIEF
3
Shall I wither and fall like an autumn leaf,
From this deep sorrow - from this painful grief?
How can I go on or find a way to be strong?
Will I ever again enjoy life's sweet song?
Sometimes a warm memory sheds light in the dark
And eases the pain like the song of a Meadow Lark.
Then it flits away on silent wings and I'm alone;
Hungering for more of the light it had shone.
Shall grief's bitter cold sadness consume me,
Like a winter storm on the vast angry sea?
How can I fill the void and deep desperate need
To replant my heart with hope's lovely seed?
Then I look at a photo of your playful smiling face
And for a moment I escape to a serene happy place;
Remembering the laughter and all you would do,
Cherishing the honest, caring, loving spirit of you.
Shall spring's cheerful flowers bring life anew
And allow me to forget the agony of missing you?
Will spring's burst of new life bring fresh hope
And teach my grieving soul how to cope?
The precious gift of love I was fortunate to receive,
And I realize you'd never want to see me grieve.
Shall summer's warm brilliant sun bring new light,
And free my anguished mind of its terrible plight?
Will its gentle breezes chase grief's dark clouds away,
And show me a clear path towards a better day?
When I visit the grave where you lie in eternal peace,
I know that death and heaven brought you release;
I try to envision your joy on that shore across the sea,
And, until I join you, that'll have to be enough for me.
Yet, the lessons of kindness and love you taught me,
And the good things in life you've helped me to see;
Linger as lasting gifts that comfort and will sustain,
Until I journey to that peaceful shore and see you again.
Source: http://www.familyfriendpoems.com/poem/seasons-of-grief#ixzz3We3GUlOy
SIDS Center of New Jersey Toll Free Hotline 800-545-7437
4
WE INVITE YOU TO JOIN ONE OFFamily
OURFriend
BEREAVEMENT
Poems
GROUP MEETINGS
The purpose of a parent support group is to offer understanding, suggestions for
coping, support, decrease in isolation, friendship, and most of all hope. It’s a chance
to talk about the events of your child’s life and death, feelings related to the grieving
process, reactions of others and concerns about subsequent or surviving siblings.
Please consider attending one of the following or joining one on-line.
“Sorrow shared is halved and Joy shared is doubled” Native American Proverb
First Thursday of the Month:
Pregnancy and Newborn Loss Support Group,
Facilitator: Alissa Sandler, MSW, LCSW For information call: (551) 996-5131
The Joseph M. Sanzari Children’s Hospital; Hackensack University Medical Center,
30 Prospect Avenue, Hackensack, NJ. Meditation Room, 1st Floor, 7- 8:30 P.M.
Third Tuesday of the Month:
SIDS/Infant Loss Support Group, (English)
Facilitator: Anna Irizarry-Wood, MSW, LCSW, for more information call (551) 996-3219
Fourth Tuesday of the Month:
SIDS/Infant Loss Support Group, (Spanish)
Facilitator: Anna Irizarry-Wood, MSW, LCSW, for more information call (551) 996-3219
SIDS/Infant Loss Support Group
Facilitator: Linda Esposito, Ph.D., MPH, APN, Newark, NJ for more information call
(800) 545-7437
OTHER SUPPORT GROUPS IN THE STATE
Third Thursday of the Month:
The SUDC Program’s Monthly Support Group (for families of children who were older than one
year of age). Held in North Jersey. For Information Call: 800-620-SUDC or go online at to
www.sudc.org
SIDS Center of New Jersey Toll Free Hotline 800-545-7437
5
WINTER WISHES, THE WINTER MEMORIAL
Our Winter Wishes Memorial held at The State University, Rutgers, in December, was attended
by over 100 people. It was a day of wishing, remembering, and sharing for our families. There was a
sibling program, candle lighting, video memorial, prayers and poems. Family members were able to
stand up and speak about their loved one and share a memory. Each family was also able to say their
infant/child’s name out loud during the candle lighting. Afterwards they enjoyed a delicious meal and
connected with many families from around our state. This year our memorial is December 6, 2015 to be
held at Rutgers University, Busch Campus in Piscataway, NJ.
SAVE THE DATES
SUMMERTIME SHARING EVENT
Monday July 27 (rain date August 3)
Jenkinsons in Point Pleasant Beach
STRIDES FOR BABIES NJ 5K
RUN/WALK
Sunday October 11
Thompson Park in Lincroft, NJ
https://www.cjsids.org/get-yourself-involved/eventcalendar/details/97-strides-for-babies-nj-2015.html
WINTER WISHES, THE WINTER MEMORIAL
Sunday December 6
Rutgers University, Busch Campus in Piscataway, NJ
SIDS Center of New Jersey Toll Free Hotline 800-545-7437
6
Lisa Capizzi Marain, MSW, LCSW Senior Social Worker
Here at the SCNJ we are acutely aware that Mother and Fathers’ Day is swiftly approaching.
Families often ask us, How do we pick up the pieces, especially around Mother and Fathers’ Day? Too
often families find themselves in a position of having to reinvent their lives, thinking about revising
goals, and making plans without their beloved. This is one of the most difficult parts of the grief
journey. This new life was not asked for, nor is it wanted. The pain can be unbearable for quite some
time to come. Please know there will be love and light again. It returns sometimes when you least
expect it. Sometimes it is only for a fleeting moment, but please know that it does return on a more
permanent basis.
Grief triggers are also very difficult reminders. They often happen at the most inconvenient
times too! Families will share with us that some grief triggers return them to ground zero. Perhaps it is
the toy you found under the couch, or the laundry that you just can’t bring yourself to wash. We have
come to know that a day on the calendar is one of the hardest grief triggers to battle.
Another struggle can be when you are battling your feelings and trying to cope with wellmeaning people who are often misinformed. Parents tell us the challenges they face when others tell
them what they should be doing. Grief Myths often guide these well-meaning people. Below are some
of the main myths we have encountered.

Individuals should leave their grieving at home – Grief cannot be controlled as to when and
where

Grief has a time limit – Grief is unpredictable, uneven, and a roller coaster with no time limit.

Grievers are best left alone – Most people need opportunities to share their memories and grief.
Support is a very helpful tool. Many parents often say a simple phone call goes a long way.

Men and woman grieve differently- Generally speaking all people grieve differently, it is not
specific to your gender. There may be traits that are sometimes associated with a man or
woman, but both parents are broken hearted regardless of their gender.
SIDS Center of New Jersey Toll Free Hotline 800-545-7437
7


Don’t mention the infant/child’s name – Parents most often want to know their child is not
forgotten and want to hear their name mentioned, even many years later.
Parents like to hear platitudes ex. it will be OK; they are in a better place –Many parents often
tell us this is one of the most hurtful things. If you are unsure what to say, just offer a hug and
let them know you are thinking about them.
We have found that families benefit and gain strength from having contact with others who truly
understand what they are going through. It can be through an internet blog, a Facebook page, or an
event. There are three upcoming events for our families.
July 27, 2015 – Jenkinson’s Boardwalk Summertime Sharing. This event is for all of our families.
Information to follow.
October 11, 2015 - Strides for Babies NJ 5K Run/Walk is organized by SIDS/SUID parents and
supported by the SIDS Center of New Jersey (SCNJ) through education and volunteerism.
www.stridesforbabiesnj.com
December 6, 2015- Winter Wishes, our annual memorial, held at Rutgers, The State University
Information to follow
As always, the SCNJ is here to support you 24 hours a day, seven days a week at 1-800-5457437. Please reach out to us through our 24 hour hotline anytime that you may need to speak with
someone. We are wishing you peace during the season of honoring you as parents. You will always be
mothers and fathers no matter how long your baby or child lived, and no matter how long ago you last
held them.
QUILTING
The SCNJ is planning a quilt square project and is in need of someone to volunteer their quilting talent
to help us assemble the quilt squares. Can you quilt? If so contact [email protected]
8
SIDS Center of New Jersey Toll Free Hotline 800-545-7437
SCNJ Staff
Robert Wood Johnson Medical School
Rutgers, The State University of New Jersey
One Robert Wood Johnson Place
MEB #312,
New Brunswick, NJ 08903
(800) 545-7437
Co-Medical Director
Thomas Hegyi, M.D.
The Joseph M. Sanzari Children’s Hospital at
HackensackUMC
30 Prospect Ave.,
Hackensack, NJ 07601
(551) 996-3219
Program Director
Barbara M. Ostfeld, Ph.D.
Education, Research, and Communication
Coordinator
Linda Esposito, Ph.D., MPH, MSN, APN
Co-Medical Director
Harold Perl, M.D
Section Chief
Alissa Sandler, MSW, LCSW
Social Worker
Anna Irizarry-Wood, MSW, LCSW
Program Assistant
Norma Lewis
Senior Social Worker
Lisa Capizzi Marain, MSW, LCSW
Clergy
Rev. Ann B. Shamy, M. Div
[email protected]
Social Worker
Jacqueline T. Nemeth, MSW, LCSW
Newsletter Editor
Linda Esposito, Ph.D., MPH, MSN, APN
The SIDS Center of New Jersey is a program of Robert Wood Johnson Medical School, a part of Rutgers,
The State University of New Jersey, New Brunswick, NJ and the Joseph M. Sanzari Children’s Hospital at
HackensackUMC, Hackensack, NJ. The program is funded in part by a grant from the New Jersey State Department
of Health to Robert Wood Johnson Medical School, a part of Rutgers, The State University of New Jersey, and a
grant from the CJ Foundation for SIDS to the Joseph M. Sanzari Children’s
Hospital at HackensackUMC.
9
SIDS Center of New Jersey Toll Free Hotline 800-545-7437
Robert Wood Johnson Medical School
Rutgers, The State University of New Jersey
One Robert Wood Johnson Place
MEB Third Floor #312
New Brunswick, NJ 08903
SIDS Center of New Jersey Toll Free Hotline 800-545-7437