Spring and Summer 2015 - Robert Wood Johnson Medical School
Transcription
Spring and Summer 2015 - Robert Wood Johnson Medical School
Healing Times Issue l Spring and Summer 2015 SCNJ@rwjms.rutgers.edu 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 SCNJ@rwjms.rutgers.edu. 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 lmarain@hackensackumc.org. 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 griefsupport@hackensackumc.org 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 SCNJ@rwjms.rutgers.edu 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