Meaningful Moments: Ritual & Reflection When a Child Dies
Meaningful Moments: Ritual & Reflection When a Child Dies
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Meaningful Moments Ritual anol Reflection When a Cnilol Dies Rana Limbo Sc Kathie Kobler p GUNDERSEN H MEDICAL B B FD UNDA7ll39lONl L 2013 Gundersen Medical Foundation All rights reserved Meaningful Moments Ritual and Re ection When a Child Dies Rana Limbo and Kathie Kobler Copyright 2013 Gundersen Medical Foundation All rights reserved No part of this publication may be reproduced stored in retrieval system or transmitted in any form or by any means electronic mechanical photocopying recording or otherwise without the prior written permission of the publisher Published by Bereavement and Advance Care Planning Services Gundersen Medical Foundation 1900 South Avenue La CrosseVVl 54601 vvvvwbereavementservicesorg ISBN 9780615790800 First Edition Edited by Charlotte Grant Layout 8c Design by Joe McCormick Photography by Roger A Grant rogeragrantphotosheltercom pages ix x 5 7 Z3 Z4 1 9 20 29 3 32 35 40 47 5 55 6 65 7 76 77 83 Todd Hochberg toddhochbergcom pages 24 26 27 39 42 74 Kristin Royalty Gundersen Health System pages 8 J 7 59 62 67 Brooke Doval Gundersen Health System inside from cover Jim Tritch Gundersen Health System pages 56 57 Heather Silver Chesapeake Kids Annapolis MD page 23 Jessi Hill Hill Photography and Artwork page 60 Jim Marvy page 58 Contributed Family Photos pages 25 36 52 57 58 4 Caregiverk Song of Lament Because of Logan and On Rocking rz Jur Copyright Kathie Kobler Used with permission Additional copies of this book may be ordered at vvvvwbereavementservicesorg Printed in the United States of America Dedication To the children families and colleagues who have shared many meaningful moments with us cknowledgemenfs We thank those who have so willingly shared their stories of ritual and relationship We are grateful to Charlotte Grant who served as our editor We express our deep gratitude to Roger Grant Rana s friend for nearly 35 years whose beautiful work adorns the walls of her home and now this book a photographic artist extraordinaire The Grant s grandson Benjamin was stillborn while they worked on this book We honor his memory through these pages Thank you to Todd Hochberg whose eye for capturing meaningful moments in photos inspired our writing Danai Papadatou author of the foreword a friend and colleague graced us with her beautiful and inspiring words We acknowledge with grateful hearts our own families and close friends who bring richness and ful llment to our lives every day Table of Contents Foreword vi vii introduction viii l Pause Reilect Acknowledge he Mindtul RRAM 23 The Power of a Moment 45 The Role of Ritual When a Child Dies 6 Co creation 7 Families ampRitual 8ii Metaphors 14 Shifting Sands i5i6 Roots ampWings i7T9 Lament 2022 Circles 2329 Light so34 Angels 3536 Water 3740 Word 4i 45 Safe Havens 4650 Transitions 5i 54 Bridges 5563 Ritual for Caregivers 64 The CaregiVer s Final Goodbye 6467 Unit Blessings 68 Touchstones for Ritual 6973 Making Bead Bracelets to Inspire 8L Build Strength 73 Dissolving Paper ampWater Release Ritual 7475 A Bridge For Caregivers 76 Final invitation 78 Foreword To read Meaningful Moments Ritual and Re ection When a Child Dies is to embark on a journey of re ection over profound life losses and ritual that are helpful in marking a passage from living with a seriously ill baby or child to living in his or her absence It is a book about acknowledging and transforming a deep suffering that is evoked by the reality of a pregnancy ending too soon or a child s death Such death often appears incomprehensible and unfair as it reverses the perceived order of nature with children dying before their parents and grandparents This book challenges the common perinatal and pediatric practices in many acute care hospitals and ambulatory settings of medicalizing the dying process and de ritualizin g death Death without ritual deprives families of symbolic activities that facilitate separation and validate grief Rana Limbo and Kathie Kobler offer an alternative approach that underscores the importance of companioning families through critical life transitions The authors invite professionals to become the family s companions by helping seriously ill infants and children pave a digni ed wa out of life while re arin arents siblin s and rand arents for se aration and b su ortin them throu h their rief Drawin on Y P P 8 P 8 8 P P Y PP 8 8 8 8 their long nursing experience in perinatal and pediatric nursing the authors do something unique They propose a framework for planning and performing rituals that are meaningful to families whose child is dying or is deceased and provide guidelines on how to create opportunities for meaningful moments that transform suffering They move beyond rituals that are prescribed or preordained by culture and religious traditionsThey invite clinicians with the help of guided questions to assess each family s beliefs values preferences and needs before joining parents siblings and signi cant others in co creating and actively participating in rituals that are meaningful to them Rituals represent highly symbolic acts of signi cance that confer transcendental meaning on the loss experience Whether practiced in private or with others whether arising in the moment or planned in advance they are most helpful when they meet the following functions fr a irm the imminence or reality of a pregnancys Kfz legitimize the continuity of the relationship with ending or child is death the deceased child and celehrate his or her life no matter how hrief it is or may have heen and M provide opportunities for expressing feelings without necessarily resorting to words Kfz validate grief hy reinforcing mutual support and solidarity among the mourners who integrate the f attrihute a transcending meaning and mfer alternative hereaved family into the larger community explanations that help family memhers understand the child is death within the context of their heliefs The authors provide a wealth of examples of ritual rituals of welcome for an expected baby who is born with a life threatening condition rituals of separation that provide opportunities for good byes and expressions of love rituals of e rmation of the child s unique characteristics talents and impact upon the family s life and rituals of continuity that recognize the on going connection with the deceased child and the reconstruction of the family s story which has been shattered by loss The book also comprises a section that addresses the effects on professionals of caring for babies and children who die It underlines the signi cance of creating collective rituals that acknowledge the clinicians losses and grief and provide opportunities for mutual support Through the sharing of personal experiences Rana Limbo and Kathie Kobler demonstrate in an admirable way that there are no limits to the creativity and ingenuity of ritualized acts that celebrate valued relationships and honor a child s life Their words re ect how the rewards of caring for those whose pregnancy ends too soon whose baby is born still or whose child is dying stem from the poignancy of present moments that professionals share with families in the face of death These meaningful moments are not measurable but fully lived they render the reality of loss more bearable meaningful and whenever experienced as extra ordinary are carried in memory forever Meaningful Moments Ritual and Re ection W9671 61 CJild Dies makes a signi cant contribution to the eld of dying death and bereavement by lling an existing void in the literature that has disregarded the power of personalized rituals to contain and transform suffering in meaningful ways It is written with sensitivity compassion and wisdom This book is a gift to families and those who care for them In addition it is an invaluable resource for administrators and other leaders who ensure high quality care at their sites and seek opportunities for staff development and support This challenging book opens up avenues for re ection on personalized rituals that honor relationships and enrich the lives of those who co create and perform them Danai Papadatou PhD MEd Professor of Clinical Psychology Faculty of Nursing University of Athens Greece Dr Papadatou s clinical experience research interests and publications focus mostly on issues related to pediatric palliative care bereavement support and community disasters She is also the president of llerimna a Greek nongovernmental organization which provides pediatric palliative home care services and bereavement support to children families and school communities that are affected by death She has received various awards for her clinical research and educational contributions in the field of death dying and bereavement a Ritual 99 days with Eliot t 30 weeks pregnant my wife Ginny and I were told tbat our cbild bad a condition tbat meant be or sbe would most likely not make it to birtb and if we were so blessed witb a birtb tben tbere was a bigb likelibood tbat tbe life would be a sbort one Ybis unwelcomed news set our lives on a difkrent trajectory in so many ways One of tbe ways wbicb was never actually discussed or acknowledged by eitber of us but seemed to ow naturally from our new reality was a deep desire to ancbor our world witbin tbe present Wben Eliot did come we were transferred to tbe NI C U wbere we sat bolding bim wbile surrounded by otber tiny fragile lives 17 were discussing to ourselves bow tbe clock was creeping toward 45 9 pm and bow be bad been witb us for 24 bours bis rst unpromised day Minutes later one of tbe nurses quietly came alongside us witb wbat sbe called a birtbday bat a small circle of tinsel sbe bad beisted from a nearby bulletin board celebrating tbe 4tb of Sbe proceeded to band tbe sleep deprived new parents as well as eacb nurse apiece of birtbday cake otberwise known as breatb mints for Eliotsparty 17 laugbed at ber ingenuity as all wbo were present gatbered around to sing bappy birtbday in busbed tones sucb a familiar song rang out in sucb an unfamiliar setting W itb Eliot some sort of camera was an integral part of tbe goods tbat became bis traveling posse typical baby items sucb as diapers and wipes a portable oxygen tank a mecbanized device for belp witb bis tube feeding and always a camera 17 were full of fear and knew tbat looking abead migbt sink us so we desperately sougbt belp witb living in tbe moments tbat we were given Ybat camera always came out around 45 9 eacb day as we bad a birtbday for every day of Eliots life from tben on 17 got 99 birtbdays witb Eliot and tbougb I am left wisbing for more I am tbankful for a woman wbose quick and tender actions belped us see tbat practices and parties can belp one celebrate and more importantly live witbin tbe 771077 l 7 ZfS Z06 6176 gi U67 Z Ritual for us became a way to take tbe smallest of steps toward tbankfulness Ybere were tbings to be tbankful for but witbout intentionality tbey were eclipsed by our sadness and left unacknowledged For us ritual was not a way out we miss bim every day Ritual is a way in into tbe moments tbat we did receive Ybese practices tbat we bad wben be was bere now belp us to continue on witb tbis journey tbat bas no map nd wben tbere is no map tbe smallest ancbor The lm 99 Balloons honors the brief but remarkable life of Eliot son of Matthew and Ginny Mooney With nearly 4 million YouTube views a featured spot on the Oprah Winfrey Show and a place in the Resolve to tbat present moment and now to a former reality indeed to a person tbat we love beyond a p 1hI39Ough ShafiI1g BCfCaVCII1Cnt Training PCfinata1 DCath thC MOOHCYS lm has touched more lives than they ever imagined Eliot and his family to wml you will neverfbrgef39 Ritual my Served are powerful examples of ritual relationship and hope To view the video as a way to remind us and otbers tbat wbat we see visit Matt s blog and learn about an organization the Mooneys created to help other families with medically fragile children receive respite care is not all tbere is or was or I believe will be go to bttpwww 9 9balloo ns orgbistory pbp Matt Mooney From the authors As nurses we have seen the power of ritual transform human experience Several years ago we collaborated on an article on ritual that led to the writing of this book Now we write to honor the relationships and experiences of ritual in our personal and professional lives We believe ritual unfolds from relationship an idea that resonates with others Often in our follow up bereavement work families convey stories of interactions that allowed them to connect with their dying baby or child in signi cant ways When healthcare professionals are asked what provides meaning in their work they recount moments of honoring the child parent relationship in the midst of tremendous sorrow and suffering Transformation is the common thread in these stories Participants emerge from ritual with hearts changed This book is for l Caregivers who may introduce parents to its ideas images and poetry l Caregivers seehin g ways to recognize and co create meaning il moments l Families whose heloved child dies l nyone interested in reflecting on the spiritual dimensions of life centered in relationship with others Kfz ll who participate in human experiences that tap our deepest emotions We hope our idea that ritual can be created in the moment will also resonate with you May you nd your own personal stories of relationship hope and love re ected in these pages We wish for you the discovery of meaningful moments today and every day 04 A Kama Kathie Kobler Buffalo Grove IL Rana Limbo La Crosse VV1 Ritual ows from relationship Relationship forms the bridge from suffering to hope Hope transforms Introduction Deep within all human interactions are moments that de ne an experience Each is an instant in time that captures the essence of all that is unfolding Deep within each of us is a corresponding instinct to recognize these special moments to bring signi cance and meaning to the powerful interactions that emerge from relationship This book is about honoring those moments when the death of a child permanently changes a relationship both assumed to be and dreamed of as living and lasting It is about parents families and caregivers making time to watch listen and interact It is about sharing all the feelings and experiences that encompass the hard work of saying goodbye to a beloved child It is about what lies within and ahead for the heart of each person changed by a life ended too soon This book is about ritual and reflection In keeping with that theme we include re ections from parents Their stories may not contain ritual yet they are profoundly moving in describing the transformative nature of grief You will nd points for re ection throughout the book They are intended to help you internalize and personalize its precepts Developing a re ective practice helps balance life and work enhancing the intimacy of caring for others1 We invite you to pause and re ect on the questions we pose You may want to write in the spaces provided or simply be open to the thoughts and feelings that arise As you ponder the questions the answers may lead you to action Some of the questions and or answers may be anchor points helping you transition to what comes next As a guide for re ection we offer the PR M framework We believe this 4 step process of self awareness and preparation is an ideal way to learn and practice the art of re ection Taking time to be in the midst of doing requires a thoughtful approach o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o on Stop Be still Center yourself Focus on something in your environment such as the door card marking the room you are about to enter Ground yourself Feel your feet on the floor REELECT Think about your breathing Pay attention as your chest rises and falls Think about the situation you are about to encounter Think about what a relationship might look like between you and the person you are about to meet or see Re ect on your feelings ACKNOWLEDGE o o a a a o o o o a a a o o o o a a a o o o a a a a o o o a a a a o o o a a a o o o o a a a o o o o a a a o o on Name what you feel Tell yourself it s OK to feel as you do BE MINDEUL Be in the moment by bringing your full attention and energy to the meaning of the relationship that has brought you here Silently bless the space PRAM 2012 Kathie Kobler and Gundersen Medical Foundation Reflection Before you pegr7 reedpg the pages of We poolt pause for a moment Cose your eyes take a deep breath Lez your rr7no Wander to an event r7 your fe thez Wes s39gr7f39oer7z Spend a few rr7r7uz es rememberpg When you are fr7shed turn the page Re ec onz Was there r39tua n your remembermg What does the Word quotrma mean to you Memories of a meaningful past event generally include ritual Rituals are signi cant because they prompt us to recall and re ect acting as touchstones to our past Ritual has permanence created in the moment and called to mind and heart at a later time The memory links the present with the past making ritual a powerful way to maintain lasting bonds with someone who died Rituals are common to all cultures39lhey may be sacred or secular and have been used to mark transitions establish order and promote healing According to Rando6P394 2 ritual is a speci c behavior or activity that gives symbolic expression to certain feelings and thoughts Authors write about the power of ritual to transform7 offering an avenue for family members to create new connections with the deceased83911 Anderson2 writes speci cally about using ritual to meet the needs of a dying person A ritual has a beginning middle and end Because ritual involves different senses memories of past rituals can be evoked in different ways You might remember a loved one s funeral ritual by what the weather was like the scent of a single gardenia the sound of a piece of music or the emotion you felt when you said good bye for the last time There is power in ritual whether it occurs with a group of people or in solitude A woman whose baby died early in pregnancy may plant a colorful ower in her baby s memory in her private garden and later participate in a community memory walk that brings together hundreds of bereaved parents Many think of ritual as actions or prayers associated with religious ceremonies A broader understanding of ritual from a spiritual perspective which may or may not include religious practices opens up the possibilities of where and how ritual can be created Ritual occurs in the moment but transcends the here and now by spiritually connecting participants at a deeper mindful level touching the core of our existence The Power of a Moment Ritual is about a single elongated moment 8 created out of relationship to build a bridge from despair to hope and wholeness Exemplary oncology nurses reported on the importance of moments as a way of remaining engaged in the work of caring for the dying Speci cally they spoke of moments of connection making moments matter and energizing moments with their patients Being mindful of the moment is the foundation of the PRAM framework Whether pausing to admire a dying baby s hands or acknowledging the moment when a father s hope shifts to wanting a peaceful death for his son each is a mental or emotional snapshot that can be brought to mind well after the experience passes Parents and caregivers who look for wait for and pay attention to those moments allow ritual to emerge transforming the here and now into something that is forever The Role of Ritual When a Child Dies While ritual doesn t fix or complete a person s grief it uniquely facilitates connection to the one who died and all who share that loss Very little has been written about ritual and its usefulness for families when a child dies Ritual is de ned as a spontaneous or created response that marks a signi cant point in time Throughout this book we describe how ritual can be a part of the meaningful moments related to Ybe early ending of a pregnancy llfz Ybe deatb of a newborn or infant Tbe birtb of a baby born still llfz Ybe deatb of a cbild at any age Why do we need ritual What is it that draws people both known and unknown to each other to participate in ritual when a child dies lib Ritual creates a community a connection among tbose llfz Ritual provides a patterned response for adapting to involved in a cbild s living and dyin g cbange 14 familiar religious ritual like baptism may be performed witb simple grace in a neonatal intensive lltz Ritual belps create and transform meaning care unit Tbe sound of water scooped from a bowl witb K mayprovide an understanding Qfseengingb 61 53055311 Can b6lII07 U the 700771 as k5 mingles 4 the unanswerable questions tbat ov naturally from Stead beeping 0f 5171017737 50533quot m0 it07 profoundgrief sucb as TVby my cbild Wby me lltz Ritual bas tbepower to transform emotions llfz Transformation is an outcome of ritual yet transformation for an individual may not be visible to otbers The power of rtua to transform the human experience at a deepyfet spr39tua ee s a harn for the grieving heart Families 8L Ritual The use of ritual resonates with the hiloso h of famil centered care as all P P Y Y members of the family bene t from participating in ritual Children naturally go with the ow of co creating using their instinctive creativity to add to the richness of the experience for both children and adults Asking a child who is old enough How would you like to help or What would you like to do invites a child s rich thinking to co creation This mold shows the hands of 412yearold twins with the impression on the right made from the child who died In this situation the whole family made molds of their hands The surviving twin wanted to place her hand next to her brother s with their ngers entwined Notice the little boy s identi cation bracelet and a bead bracelet on his wrist The beads represent a related ritual Each stands for a special connection with her brother described in stories she shared while she strung the beads W NOTE TO CAREGIVER T To facilitate the use of ritual with families as a baby or child is dying learn what is most meaningful to parents Your recognition and support can help frame and hold the heartbreak and sadness You might use phrases and questions such as these l In your family what usually happens when someone you love is very sick What special moments have you and your child shared together in the past lf Is there a favorite toy son g prayer hlanhet or other comfort item we should hold in mind as we create this ritual together l How would you lihe to honor this time with your child 14 5yearold was adamant in wanting to say good bye to bis bospitalized 2yearold female cousin wbo bad died of leubemia about 2 bours before To bonor bis reguest bis parents worbed witb tbe medical team to prepare tbe boy for wbat be would see Ybe little boy entered bis cousins room in bis fatber s arms From tbe bigb vantage point be scanned tbe faces of all tbe adults immediately grasping tbe adults grief and somber expressions Suddenly be loobed down and saw bis cousin cradled in ber motber s arms Put me down be exclaimed running forward to toucb bis cousin He wbispered in ber ear Tm going to see you again in beaven nd tben as be bad a secret too wonderful to beep be sbouted VIe are going to see ber again in beaven His faitb lled proclamation caused all tbe adults present to breatbe deeply witb bope Yben be did sometbing even more amazing He tenderly reacbed up cradled bis aunt s face witb bis small bands and said Huntie are you going to be obay mazingly tbis little boys actions led to tbe co creation of tbe ritual repeated by every adult in tbe room In turn eacb came forward to toucb tbe little girl wbisper words in ber ear and o er consolation to ber motber The term thinking outside the box is appropriate for the way caregivers respond to families Our openness to what parents need want and value and our complete lack of judgment about what is a good idea or a bad idea creates a sacred space for nurturing relationship Honoring culture personal preferences family relationships and parents love for their child in this way provides the rich soil in which meaningful moments can grow This mother reminds us to honor the parent child relationship She describes how she and her family were prepared for meeting their baby who was born with several medical conditions For as sle was always our clild oar oaoy girl oar daagljter Slje was never a oody a dead oaoy a corpse to prepare or dispose of nd oecaase sle was sacl a sick may in atero we also knew tnat se woaldprooaoly not appear as a normal newoorn and sbe didn t Y79is too we prepared ourselves and our cl2ildren for But wlen it came down to it none of tlat mattered melias appearance was of no consequence Her disjfgarement due to ler condition was secondary Slje was simply oar daagljter oar 4tl clild oar cljildrens sister Stephanie Dyer November 2011 Re ectiom To lrelp create a ritual you could ask yourself tlaese simple questions Wlrat do I and otl7ers want to aeeomplislr tl7rougl7 tl7is Wlrat meaning does tlais lJave for tl7e family For caregivers For me Wlro will oe involved in tl7e ritual Wlrat could I do to draw otlaers in Wlrat materials or symbols mi gl7t oe used We hope you will fully open your heart and mind to the potential for ritual in your life and practice Metaphors photos examples and how tos are used to make you aware of the relationships and interactions unfolding around you We offer this framework for ritual to launch your journey not to prescribe it 12 Meaningful Moments Ritual and Re exion VV7671 cl CJia Dies Ritual ows from relationship Relationship forms the bridge from suffering to hope Hope transforms i Metaphors H I H V 5 F 14 F Meaningful Moments Ritual and Re ection 139HV7en oz CJild Dies SJiftin g Sands Walking along the beach or climbing across a sand dune is unpredictable As the sand gives way to the weight of your feet you may be moved in an unexpected direction Areas that look easy to navigate may in reality be more dif cult than you anticipated A beautiful shell shiny and colorful when you pick it up may have been the source of intense pain when you stepped on it moments before You can t go farther until you tend to the pain Grief is like that sometimes Although you will eventually make your way across the sand to your planned destination a review of your footsteps will reveal a path marked by shifts and transitions from the intended course Journeying with those who are dying also involves transition and change As care shifts from curative to comfort measures we tend to the dying with the hope of honoring patients and families wishes and making life the best it can be Throughout this journey you will experience unexpected shifts in thinking feeling wishing and hoping Out of such shifts ritual may arise One tbin g is for certain tbe grieving motber statecl empbatically I cannot bear to bring any of bis tbings bome witb as Sbe was rocbing ber baby sons bocly loobing earnestly into my eyes I can beep tbem scfe for you for now I repliea I watcbea as tbe motber gently tranyferrea tbe baby into berbasbandfs waiting arms ter some time tbe mom stooa over ber sons bospital bea and began to straigbten ap bis belongings Ybe only soana in tbe room was tbe rbytbmic creabing oftbe rocber ana tbefatberfs gentle bamming to bis son s sbefoana an item bariea under a blanket sbe exclaimea IIoney clo you remember wben and proceeded to sbare a special memory oftbeir son I watcbea39 as tbis process was repeated mom straigbtening ap nding an item sbaring a memory t some point sbe paasea39 looked up and smiled I m cloing exactly wbatI tboagbt I coala39n t clol Ofcoarse I want to tabe bis tbings bome witb as o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o Sometimes shifts are audible even though they may be invisible A shift may be a big sigh or a sob breaking the silence Letting go of pent up breath creates room for new fresh air Allowing ourselves to release inner pain can mark a shift or transition toward hope or healing Reflection reyou on tye beat9 or climbing a sand dune today VV7612 is your grz39efz39e Could ritual yelp steady your footsteps on tusjouruey NOTE TO CAREGIVER Pay attention to sighs Often after an audible exhaled breath the one we are sitting with in silence will share signi cant words that may be the key to co creating ritual For example A mother who let out a tremendous sigh followed with these words If only she could feel sunshine on her face one last time Out of this expression grew the opportunity for the mother and her nurse to create a ritual for her little girl to experience sunshine before she died 16 Roots 59 Wings The ultimate goal of parenting is to help each child nd wings providing the freedom to explore and choose how to share their gifts and talents with the world At birth a baby is welcomed into the immediate family an extended family and a larger community Each is grounded in traditions familiar practices and shared beliefs Parents strive to recognize and nurture each child s unique personality gifts and talents This juxtaposition of wanting to both ground and empower forever unfolds in the parent child relationship Ritual can be both grounding and empowering in the same moment Ritual provides the opportunity to combine traditional and in the moment experience Ritual requires cultural awareness One cannot assume but instead can engage the other by asking open ended questions Such assessment helps the other to identify what is already familiar and known while also thinking mindfully creatively pondering What if P Naming Baby 777e year 2012 is a special year for our entire as we acla two names to our tree quotThere are ony two esthg bequests We can hope to ge our ehdreh One of these s roots the other Whgs Henry Ward Beecher Oar rst clrila a son was stilloorn on Novemoer 30 Z 965 t that time parents were not mjrerea to see or lrola tl7eir clrila oecaase it was oelievea that it would he more lrartfal in the long run for parents to see their oaoy VIe were also discouraged from naming oarprecioas oaoy In I 970 that theory was still in place Our tlrira clrila a claaglrter was oorn still on the Z 7tl7 ofFeoraary Botlr our oaoies were perfectly l7ealtl7yfall term oaoies and the only explanation for their a eatl7s was that they clia not receive enoaglr oxygen when I oegan to l7emorrl7age oefore they were oorn I always felt in my heart that it would have oeen so comforting to have met our son and our claaglrter in person Botlr my lmsoana and I would have so welcomea the opportunity to see and spena time with our oaoies To lrola ana oona with each oftlrem would have mjrerea a great sense of comfort to as ootlr It would have oeen a way for as to show them how very maclr they were wantea ana lovea 14s in all relationslnps we are olessea with in our lives we neeclea ana wantea to say Iello oefore we saia Gooa oye Wlrile on the stafoftlre Resolve 772roagl7 Slrarin g perinatal oereavement program I learnea from other parents I met that they felt naming tl7eir oaoies at oirtlr gave them a sense of peace 777e signgfcance of naming the oaoies allowea them to oe recognizea as an important part oftlre Even tlroaglr their parenting was limitea to saclr a short time it was a vital gift that only they coala give their oaoy 777is year my lmsoana and I namea our two oaoies Our son is nameclje rey llen Baslrek and our a aagl7ter is Malincla nn Baslrek VIe along with their orotlrer Brian and their sister Reoecca celeorate their names oein g aa a ea to our tree Laurie Bushek Reflection How is eac7 family member connected to tJe may or e7ia39 VVJill grounding and empowering aspects of tJeir relationsJip can oe 7onorea39 wit7 ritual NOTE TO CAREGIVER Learning what is most important to families from a cultural perspective is key to the process of co creating ritual Saying Help me to nowyonrfamilys traditions ZU7671 someone a ies provides opportunity for re ection It may also reveal important perspectives as the co creation process for the ritual unfolds If family members are separated by many miles when a child is dying consider using technology that affords real time communication with sound and images For example a laptop computer strategically placed in the room could allow a grandmother on the other side of the world to participate in Buddhist evening prayers for her dying grandchild ity to combine ience t2e m0ment exper des the opportun I and in Ritual prov tmditiona Lament udeo Christian tradition is rich in lament a form of prayer that allows the release of all that feels unsettled unfair incomplete and broken Many of the Psalms in the Bible are actually laments The psalmist trusts that God is listening to words and feelings set free by tears Within all lament is a recognizable shift in tone from rage or anger to expression of trust in God s faithfulness and presence within the pain 779is lament was written e er a series of a eatJs in tJe neonatal and pediatric intensive care units A Caregiver s Psalm of Lament O Lord of Life Where are You The silence is crushing In this room once lled with the sound of pulsating heartbeats whirring machines and whispers of hope there is now only death The one for whom we worked so hard lies motionless in his mother s arms 0 Lord of Healing Where are You You whose mighty hand parted the sea gave sight to the blind and formed this babe in his mother s womb Could You not have moved Your hand to save him Could You not have given us insight to know what was wrong We are left to weep into our helpless hands 0 Lord of Comfort Where are You Were you not beside us as we kept our care lled watch over this precious one Did you not hear as we whispered words of love in his ear Our hearts are heavy with the weight of our inadequacies All of our love and tender care could not save him Why even attempt to care for another 0 Lord of Compassion Where are You Move past the curtain surrounding his room Enter into our torrent of tears Break through the veil of grief which surrounds our hurting hearts Have mercy O Lord In this silence we will wait for you Let us hope in Your promise All who seek shall nd You Kathie Kobler Keeping Silence Sometimes intense feelings of lament cannot be expressed in words as only silence lls the space where heartache resides Ritual may unfold from such a silence watching and waiting being with unsettling feelings nding creative ways to shift the burden of a heavy heart Refraining from sharing words can be powerful within ritual Taking time for silence asking for a time of quiet re ection using the absence of word to honor the moment all of these can have their soundless place in ritual providing unique meaning known only to each participant In silent solitude a grieving parent family member or friend might use ritual to collect and contain feelings Bottle of Lament Ritual Place an empty container or bottle with a lid on a table Quiet yourself Take several cleansing breaths in and out Visualize the feelings concerns vvorries or pains that burden your heart Picture yourself pouring those difficult things into the empty container Watch it fill with all of the difficulty and burden When it is full put on the lid and turn it until it is tight Continue to breathe in and out 0 Now visualize the space in your heart once occupied by the hard E things as open and ready to receive something new In the hours to come be conscious of what can now fill the space that has been emptied Remember the full bottle You know at any time you can return and reclaim the concerns and worries it contains Record my amenf sf my tears on your scro are they not in your record Psalm 568 in Reflection reyou waiting in silence re you protesting in anguislr Listen to worcls ancl to tl7e silence Coulcl tl7is oe a meaningful moment for you NOTE TO CAREGIVER Compassionate silence is a mindful approach to being with another without using words The caregiver may choose to acknowledge silence during a ritual by using words such as 779e worcls we lJolcl insicle speak louclly in a tone tl7at can only be laearcl oy tl7e l7eart 17 l7onor tl7ose unspoken worcls witlr silence 22 Circles Circles symbolize forever With no beginning or end each is continuous and connected within itself The image of a circle can be used creatively in rituals involving loss and death Cradling embracing enfolding these physical responses of parents to beloved children become circles reaching for completion Look for ways to honor the circles that form through relationship Baby ring ritual to honor a past loss This simple ritual can occur in private to remember a loss early in pregnancy or later even a loss that occurred years ago but went unmarked at the time ITEMS NEEDED baby ring and neck chain Bead these words or write words of your own Baby of mine l remember you today as l have so often in the years since you left me lplace this ring on a chain that l W lovingly Wear to keep you close to my heart Baby of mine Baby Billy born still at 30 weeks Baby ring ritual to honor relationship before or shortly after death Baby ring blessings can also occur as the parents share tender time with their child before or after death Like a circle the ring has no beginning or end and can be used in ritual as a symbol ot the parents neverending love tor their baby Parents can be presented with the baby ring using these words in my hand l hold a simple gold ring The ring is a perfect circle The circle is never ending just like your love for your child This love was present when you learned about your pregnancy This love continued as you anticipated your baby s birth This love has filled your baby s hospital room during each moment of hoping it continues as you love your baby back to God Accept this ring a symbol of your love for your baby The caregiver can simply extend his or her hand to present the baby ring and see what untolds Parents will often accept the ring moving torvvard with the next step of the ritual they will co create in the moment placing it on their baby s tinger with timing presence and meaning that is all their own Parents may wish to have two rings one buried with the baby and the other remaining with them symbolizing the eternal relationship between parent and child Logan his parents Bryanna and Paul and Logan s caregivers N A 319qqv0H PPOJ When 7 month old Logan was dying his caregivers spontaneously created two circles the second is just outside the range of the camera s lens and each took turns saying good bye and thank you to Logan This image is from the conclusion of the ritual when a chaplain read a Verse of scripture and all caregivers extended hands in a going forth blessing Circles in Photographs Bereavement photography is a ritual through which meaningful moments can be captured forever The photographer must be both present and separate to create images in the moment He or she silently discerns environmental elements and uses them to frame uncoached gestures and postures Barely noticed by participants as they focus on the child the photographer melds human subject with light shadow and other shapes that ll the camera lens Staff may gather with parents encircling the bed or isolette of a dying premature baby uniting the equipment and the people Invited by their parents to draw near brothers Kai 3 and Koa 112 created a natural circle with their newborn sister Kanani on their mother s bed Captured not long before Kanani died their mother Lisa describes this moment as the most precious and dearest of her life These moments when captured in a photograph re ect relationship and embody emotion Bereavement photos oin living and dying in a continuous process that can be seen again and again Our Ferny s e oroe of strengtn and ove tn every brtn and every unon tne oroe grows Every joy snared adds more ove Every orss faced togetner rneltes tne oroe stronger Author Unknown 2 H quotH3 H u 2 y 2 p1 K 5 TOdd HOChbCfg has been a documentary sty1e bereavement photographer since 1998 He has this to say about his approach to photography and the opportunities it affords for co creating ritual For me making meanin gfal pkotograpks for families is a manifestation ofpresenee 779r0agl7 an intuitive collaboration ketween plzotograpker and family tlae images often make tl7emselves I aim to befallpresent anel minefal of tl7e moment Being present means supporting witlmat intruding walking witk tl7em anel followin g tl7eir leael as tl7eir experience anfolels Todd Hochberg Andre and his parents Pbotograpbers are storytellers Documentary pbotograpby is a complementary approacb to family centered bereavement care because tbe pbotograpber responds to wbat families are experiencing Pbotograpbs are not staged or posed ratber pbotograpbs are tangible representations of relationsbip among parents baby or cbild siblings otber family members and caregivers Wben parents view and sbare tbeir pictures tbey bring to mind an intimate and tender time witb tbeir cbild Images sbowing parents creating ritual are especially powerful because tbey capture botb relationsbip and emotional moments s one motber conveyed IWe saw our time witb our son laid before our eyes Its as tbe pbotograpbs spoke to us saying It was real You did bold bim You did quot139quotquot l39Fe 39 quot J l L 39 i 1 39 s 39 Jquot 39 39 HA I bV39393939339 l39hh39H 391 395 ll L quot H39J If quot1gfi J Baby Sierra with her sister Destiny D biss bim You are a family mong tbe most powerful images re ecting relationsbip are tbose sbowing parents creating ritual My interest is in ritual tbat evolves out of experience and deep need ratber tban prescribed by religion culture or institutional protocol Ybese rituals are rarely discussed or planned I am reminded of sucb momentsquot a couple enveloping tbeir dying cbild on a mabesbi bed in tbe bospital a sibling asking to bave ber baby sisters bandprint on ber arm a fatber reacbing out to caress bis sons bead as mom o rers love and assurance to ber son wbile lying next to bim I watcb as tbese meaningful moments evolve and strive to capture tbem in pbotograpbs 6yearold Will with his parents Todd Hochberg Todd Hochberg Reflection Have z Jere been circles in your own experiences of grief and loss VVJill did you do to draw 2 aem togez 7er How didyou Jorzor z Jem Have you captured circles in pJotogrupas you ve taken NOTE TO CAREGIVER Circles can be the framework for meaningful moments during the days hours or minutes of a life drawing to its close Watch for circles that form naturally as caregivers family members and friends gather to be present and meet the needs of a dying baby or child Note the potential for physically connecting honoring relationships and creating community through circles In a circle words prayers songs or silence can be shared to comfort the child and all who are joined and centered by this serene shape We oome together at We moment 39n tme to oreate a oommunti a oroe of gnt to honor our ondren Create a circle of votive oahdles around the Candle of Love It you know the names of the children to be remembered ih advance you oah place the hame on each votive oahdle it you doh t know their hames ask each parent to hame their child after the leader says each time Today and aWays We remember 31 One Small Wish I stood in tbe window forcing my eyes to look as far as tbey could see for a sign of tbe vebicle tbat was carrying Kristin and ber parents Tom and jean It wasn t every day tbat we gave a pass to a cbild wbo was dying so tbat sbe could bave a picnic at tbe river witb ber Mom and Dad Especially tbis cbild 17 bad spent endless bours isolating Kristins fragile body from any invader 17 wrapped ber tiny self in kilometers of a special dressing to keep ber peeling skin intact and keep tbe real world out 17 smotbered our own breatb bebind surgical masks and gloved our scrubbed raw bands to dress ber weeping lesions Sbe was berparents dream come true tbe cbild tbey longed for planned for and miraculously created But tbe dream sbattered witb tbe diagnosis we could not cbange ll tbe love care and dollars in tbe world could not erase tbe trutb tbat sbe would die IWis it wrong to grant even one small wisb for tbis family Could we not give tbem one day outside of ber isolated space to experience tbe sun tbe wind tbe riverbank tbe trees in full color to expose ber delicate eyes to wbat Gods eartb really looks like 17 decided it bad to bappen Our plan included a nurse to accompany a portable I V pump to tuck into ber car seat a days wortb of oxygen a carefully selected sleeper jacket bonnet and blanket a few bugs for eacb otber and tbe little foursome slipped out tbe door Ybey said tbey d call tbey needed anytbin g But several bours bad passed I caugbt a glimpse of tbe car as it neared tbe bospital entrance I ew down tbe corridor down tbe stairwell out to tbe elevator and beld it open as tbe foursome slipped back witbin our walls Silently we moved as a group and quietly tucked our treasure back into ber crib Had we taken an unreasonable risk IWis I an irresponsible manager Or bad we merely created one beautiful memory for a family wbo deserved so mucb more Ybe answer to my questions was evident in tbe eyes of ber parents I saw an early glimmer of peace and maybe a tbread of acceptance for wbat bad to be I went back to tbe window Ybe perfect day was turning grey tbe breeze became a wind and tbe leaves began to fall Judy Lawson RN former Pediatric Veonatal Intensive Care Unit manager From Tears TogetJerNewsletter 1984 Tom and Jean Thompson the parents in the One Small Wisb story provide this reflection 29 years after Kristin s death They remind us of the meaningful moments that remain etched in memory for a lifetime Emotional support from family friends and our Gundersen Lutberan Medical Center team beloed us bear tbe loss of Kristin and a year later tbe stillbirtb of ber brotber Cbristopber Botb bad tbe same genetic disorder To tbis day we remember tbose moments outside in tbe ligbt Ybe memories of ligbt mingle witb music to remind us of tbat time of trauma and pain Lionel Ricbies Stuck on You comforted us wbile our daugbter clung to lfe Even wben music evokes melancboly mixed feelings soon give way to bittersweet but fond memories of our brief time togetber To complete our family we adopted 4 montb old Lynsee from Korea Ybree years later 2 montb old Cbiyo arrived from apan Ybe opportunity to parent tbem was tbe lasting go we received c er our loss Lynsee and Cbiyo belo us remember tbeir brotber and sister tbrougb a gob tournament we sponsor eacb year to raise funds for Gundersen Healtb System a Cbildrens Miracle Network bospital Our cbildren bave brougbt us joy and taugbt us a great deal about unconditional love and acceptance Life is so good y J Sometimes a dying child or baby cannot be taken outside Perhaps a window or skylight can be the source of soft natural light even through tinted glassTwinkle lights can be hung on the wall or on the isolette39lhese might have special appeal to siblings seeking a way to be involved in special preparations Caregivers may offer real or battery operated candles to provide light during a family ritual Reflection VVJill does igJz mean to you VV7611 is yonr morite kind oflig71 VV7611 rituals in your own life involve lig71 How does ig71 make a difkrence 34 ngels For many of us angels symbolize comfort and protection They soar past the bounds of our everyday knowing As messengers and signs of something beyond ourselves they represent a surrounding force of love and care Hospitalized children themselves have described protectors Asking children what they see or what the protector looks like can be used to co create a comfort ritual For some parents the angel image is their child For others the angel was sent by God or their child as a harbinger of hope a way of staying connected with God in the middle of a dif cult time Some limit angels to Christian faith In fact these extraordinary agents are found in several faith traditions When angels are used as part of a ritual it is important to be sure that the parents nd solace in the image of an angel Caregivers should ask not assume that angels are acknowledged or meaningful to the family For those who welcome their presence angels and their ethereal evidence can be found in unexpected places as this grandmother shares I learned rigln before I le for work one morning tlaaz my daugln er nn and laer kuskand experienced a miscarriage z l7e day kefore I was sad to learn z l7az I wouldn z gel to meez my first grandcl7ild 779ey l7ad keen z ryin g to gel pregnant for awl7ile and I knew z Jatfacz weigJed Jeasvily on nns mind wl7en sl7e called to tell me wkaz kappened I le for work aware of z ye krigJz blue summer sky will not a cloud in sig72 s I was driving I looked up and was surprised to see z l7is single small wl7iz e cloud rigln above my car For some reason I was drawn to watcla iz nd z lJere before my eyes tlais small wl7iz e cloud became a cross ndjusz as suddenly tlae clear image of z l7e cross became an angel 779ere iz was z l9e sign z l7az my first grandcl7ild was already in l7ea7Jen Jennifer Nordeen 36 After our first baby died the evening before Thanksgiving I returned home exhausted with The Kobler family Christmas tree grief My husband wanting to comfort me but up our Christmas tree while I slept as he remembered how much I enjoy Christmas lights I woke to find a lit tree a sweet note and one small box of ornaments When I opened the box there on top was a simple lace angel ornament I couldn t bear to decorate the entire tree but I did find the strength to choose a spot for the angel As I stretched up my arms to hang the angel a bit of hope met me Since then the angel is the first ornament I place on the tree Many years later one of our children asked about the ornament so I shared how the angel helps me to remember our first baby From then on the story of our Christmas angel has been passed down from one child to another which has made this such a sweet family ritual This year just as always one of the kids brought me the angel ornament with a smile Here you go Mom Kathie lltobIer Reflection Have you ever felt tJepresenee of an an gel Have you 7eara39 stories told oy otJers convinced of tJeir presence and actions VV7611 does tJe concept of guardian angel mean to you VV7611 is tJeplaee andpnrpose of angels in yonrfait7 tradition NOTE TO CAREGIVER Listen carefully when a child talks about big shiny guys or similar descriptors since the child may be referring to what adults understand to be angels Also note when parents say Our child will be an angel now Honoring a family s belief in angels may provide an opportunity to co create ritual and explore meaning IVater Water is essential to life It is necessary for birth regeneration and renewal Our bodies are composed primarily of water When we are wounded physically or emotionally water escapes from within us owing to the surface It has been estimated that the body exerts a tremendous amount of energy to produce a single tear This precious liquid can be shed during moments of extreme joy or overwhelming emotion Whether they are evoked by sorrow or gladness tears are a unique aspect of human expression Throughout history tears of grief were often collected and saved in special containers In Victorian times mourners were given tiny bottles as a way to capture their tears These ornate vessels signi ed the special nature of tears of grief and made it possible to set them in a place of honor Similar designs are currently available in gift shops and could be purchased by or presented to parents as a way of honoring their tears Other countless tears have fallen on the ground soaked tissues or been brushed away by ngertips In some cultures though tears are shed in private never shown to or shared with another Whether they are visible or hidden from view tears should be honored Their presence almost always marks a signi cant moment There s sacredness in tears They are not the mark of weakness but of power They speak more eoduenty than 70000 tongues They are the messengers of ovenlhemng gref Of deep contrton and of unspealtape oie Washington Irving Honoring tears ritual The parents tears may be gathered in a cotton ball tissue or heirloom handkerchief A few teardrops may be carefully collected in a small shell and used to bless or baptize the child Include a simple statement recognizing and honoring these tears of love Verses chosen from the family s faith tradition can further enrich and deepen the experience of a ritual to honortears Here is one example from the Hebrew Bible He W sviaow up death forever and the Lord God W wipe away tears from a faces Isaiah 258 NOTE TO CAREGIVER The healthcare provider should carefully assess a family s expressions of emotions and feelings including the presence or absence of tears If the family is showing the depth of their experience with tears it may be meaningful to incorporate their tears into a ritual with the baby or child o o o o o o o o o o o o o o o o a o o o a o o o a o o o a o a o o o o o a o o o o o o o o o o o o a o a o a o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o a o a o Bathing the Body in Love Water is also used to cleanse renew and refresh Children require frequent bathing a parental responsibility repeated countless times over the years Yet such an ordinary task can become a transforming meaningful moment when parents are invited to participate in the care of their child s body after death The resources needed for this informal ritual are few and can yield priceless rewards It began witb a simple question Tuld you like to belp answered witb a quick nod of agreement from bis parents ltbougb we did not speak tbe same language tbeir intent was clear Quietly warm water soap and towels were gatbered His parents slowly stood and carefully positioned bis still body in tbe center of tbe bed Togetber witb bis nurses tbey paused in silence 779e nurses tben reacbed out tbeir bands motioning to tbe parents to join tbem in unfolding tbe blankets and clotbing His parents were tentative at rst but tben witb a mix of reverence and eagerness tbey willingly assumed tbeir rigbtful roles and began to batbe bis body s bis motber slipped ber bands into tbe warm soapy water a faint smile toucbed berface Sbe wbispered a word into bis ear and began to gently wasb bis body s sbe nisbed cleansing eacb area bis fatber s bands were waiting to dry tbe area witb a soft towel 779ey fell into a gentle rbytbm allowing tbe water to wasb over bis wounded body wbile talking softly to bim followed by caressing drying and kissing bis skin 779eir faces tbougb streaked witb tears radiated a profound joy 779ey were bis parents Ybeir willing participation in caring for tbeir son was even more poignant knowing just twelve montbs prior tbeir newborn daugbter bad also died from tbe same devastating metabolic disorder o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o no Todd Hochberg Reflection I VJut signs and symbols do you nd in wuterspresence or use How Jdve you used water in past rituals How is water used in yourfuit7 tradition or spiritual life Word When words are assembled in just the right way they may capture the most profound aspects of the human experience the joy of love the beauty of a sunset the depth of sorrow the majesty of a mountaintop the power of the sea Word can be an essential component of ritual Whether spoken aloud gently sung repeated in unison chanted by a cantor or written in re ection words shared in ritual can be powerful Words or phrases repeated in chants or mantras can create a rhythm that helps participants focus unite and be wholly engaged in the moment Words spoken from the heart can help connect with the inexplicable de ne the inde nable feel the unimaginable understand the incomprehensible Words From the Heart Writing down feelings stories or re ections can be important components of a ritual to support those anticipating the death of a loved one After putting words on paper the writing could be read to the dying child or if not meant to be spoken aloud the written words could be placed in an envelope and buried or cremated with the child Because of Logan Before we met I was stuck in my own agenda concerned for time watchful of the hours Before we met I was absorbed with my own feelings and thoughts and concerns Before we met I entered your room empty handed equipped only with my eyes ears and mind Before we met I did not want to start the day when my alarm went off Before we met I was weary Before we met I was taking breathing for granted Before we met I was doing moving scattered August 302002 2 am Kathie Kobler Because of You Little One I was struck y tlrepawer of a moment ancl l7unibly wonderecl now your soul slipped from tl7e constraints of our Inan niacle time into eternity Because of You Little One I lost myself in your parents pain Because of You Little One I left witlv an ovei owing laeart Because of You Little One I m tlran fulfor tlae opportunity to l7a71e experienced tlais clay Ylaan fulfor tl7e privilege of meeting you and your family Because of You Little One Ilae weariness remains joinecl new y a sacreclpeace Because of You Little One I new quietly rest focusecl on tlae gift 0feacl7 reatlr Because of You Little One I am still present and 0 verwl7elniecl witlr tlrepower of love Words from other authors or trusted sources Parents and families may nd comfort in either hearing or reading aloud from sacred texts secular prose and poetry Caregivers should ask if there are any special prayers or readings that the family would wish to be shared These can be incorporated into the child s care Stories amp Songs Many parents have storybooks or songs that they share with their child on a daily basis Asking about a child s favorite bedtime story or a comforting song can lead to its use in a co created ritual at end of life A parent may wish to lie beside the child and read a beloved storybook Siblings gather around the child may wish to and sing their favorite family song Even the silliest story or song can be rich with memory or meaning when shared one last time with the dying child Families have welcomed reading familiar books like Goodnign Moon or Guess How Muc7 I Love You to their child and using those stories during times of transition between living and dying One father while reading the family s favorite story book prior to her coming off the ventilator changed the words of Goodnign Moon to re ect his daughter s surroundings Good night NICU good night beeps and buzzes good night nurses whom we love 42 Big brother Liam reading to Anna Liam 7 came to the hospital prepared to read 77949 Runaway Bunny to his sister Anna who was dying Once at her bedside he became apprehensive Then spontaneously and without any coaxing he picked up the book stepped closer to Anna and began reading A sweet and poignant moment captured in this photo for his mother and father who are holding Anna brother James and the children s grandparents Todd Hochberg IIow mucb time does sbe bave left ber mom asked me in a weary voice I m not certain I answered bonestly adding It seems as sbe is soaking up all tbe love sbe can Witb a wistful smile sbe answered Yes but tbere is so mucb more we wanted to sbare witb ber Tell me more I asked I m tbinking of tbings we would do places we would go stories we would tell ber sbe sadly replied IVbat kind of stories I asked W itb tbat ber busband wbo bad been silent quickly replied Like bow we rst met Ybat is sucb a good one Sbe sbould know tbat sbe sbould bave a cbance to know tbat Before I could speak again tbis dear couple began to wbisper into tbeir daugbters ear telling ber bow tbeir lives bad rst been brougbt togetber Recognizing tbe intimacy of tbis moment I quietly exited returning later By tbis time otber family bad gatbered 14 grandfatber sat nearest tbe door and greeted me witb a smile Ifyou re coming in you better be prepared I quickly learned tbat tbe parents decided to use tbis time witb tbeir daugbter to tell stories nyone wisbin g to enter ber room could only enter c er agreeing to sbare a story witb ber Some visitors were rst taken aback by sucb a request But tbe contentedness peace and even joy tbat surrounded tbe little girl is bedside was palpable radiating alike from tbe faces of tbose wbo sbared and listened to tbe stories 43 NOTE TO CAREGIVER Inviting parents and others to tell stories can be a powerful way to co create ritual Provide time to pause invite others to share and allow time for those gathered to collect their thoughts One storytelling tool can be simple heart beads Invite all participants to choose a heart bead while holding in mind a special story memory or thought about the child Invite participants to share their re ections out loud With each telling place the heart bead on a string The completed strand of love can be placed at the child s bedside Reflection How 76l U words gured in your own experiences of grief and healing How 76l U6 you invited anotJer to sJare words to Jonor a moment IVmt texts poems or personal writings migJt comfort otJers Safe Haven Safe havens evoke the mental image of a restful presence in a location that allows one to feel secure and at home A safe haven is a place to simply be resting in the familiarity of memory or in comforting surroundings Even in the midst of an intensive care unit one can create safe havens Pillows and quilts draped over recliners and other comfortable chairs make it easier for tired parents to curl up and cradle an infant or older child nestled heart to heart head to head Encircled in an embrace a baby or child lls a special space in arms aching to hold onto the last hours and minutes of a sweet but all too short life Sbe ts rigbt bere tbe Dad somberly sbared pointing to bis cbest Yet bis eyes glowed as be continued Every nigbt sbe ts rigbt bere and I carry ber ap to bed I m going to miss tbat terribly I watcbed as be beld bis small daagbter s body secarely against bis cbest Hoars later as we were discussing tbe direct release of ber body from tbe bospital room to tbefaneral director I remembered tbe Dad is words Valdyoa like to carry ber in your special way oat to tbefaneral directors car IIis entire body position cbanged as tbe gaestion bang in tbe air sboalders straigbtened eyes asbed witb a glimmer of bope Vald I Wby I 2 follow you over a mile of barning coals it meant I coald do tbat witb ber one last time nd so we did and for one last brief moment fatber C9 daagbter were bome and scyfe For some families the metaphor of Safe Haven means their baby or child s presence in heaven after death Parents have taken comfort in creating ritual to prepare their little one for transition to this safe haven of heaven n o o n o o n n o o n n o o n n o o n n o o n n o o n o o o n o o o n o o o n o o o n o o o n o o o n o o o n o o o n o o o n o o n o o n o o n o o n o o n n o o n n o o n n o o n n o o n n o o n o o o n o o o n o o o n o o o n o o o n o o o n o o o n o o o n o o o n o o n o o no The story below illustrates one hospital s creation of a safe haven for grieving families a room centered on re ection and comfort39lhis painting serves as a focal point in the room providing a mystical centerpiece for thoughts and emotions 779e pastoral paintin g IIeavens Garden is laden witb spiritual symbolism In tbis unique work commissioned by St Vincents Perinatal Bereavement program journey tbe imagery of artist Laurie Snow Hein expresses tbougbts and feelin gs sbared by bereaved families Ylye original design concept was developed by Lynette Spruiell journey and Resolve Ylarougb Sbarin g coordinator Eacb person wbo enters tbe Eric Blabe Faulbner Quiet Room is drawn to Heins color drencbed tableau 14 softly burbling slate and copper water feature seems to animate a waterfall in tbe scene Ylarougb a large stained glass window muted ligbt batbes tbe room s comfortable furnisbin gs in bues tbat ecbo tbe paintings natural tones I7odsy scented potpourri and a carpet patterned in soft moss green vines invite every visitor to step out of tbe real world 779is is a soundproofed sanctuary from tbe joyful noise of families celebrating in tbe labor and delivery area ltbougb used primarily for grieving families tbe room is also appropriate for baptism or blessing rituals as well as pbysician consults wben unexpected outcomes occur 779e painting was designed to minister to persons of many faitbs 779e cbildren represent various ages and cultures No full faces are sbown so family members can gaze at tbe painting and imagine tbeir loved ones being nurtured in tbe peaceful c erlife portrayed by Heins eloquent brusbstrobes Symbols sucb as water rocb ligbt lamb rose and sparrow are grounded in many spiritual traditions Eacb image bas poetic or scriptural meaning Time t er time tbe quiet room and paintin g fubill tbeir sbared purpose Family members overcome witb grief are taken to tbe room to recover Once tbey are seated tbeir breatbin g slows and tbey begin to relax If stc remain quiet and let tbe room speab tbe bereaved often nd tbeir own words to begin tbeir bealing process s one grandmotber stated 779is room seems to lay a gentle band on tbe starb reality of our loss Lynette Spruiell LPN o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o no Despite terminal illness an outgoing 10yearold 7 7 7 Reflection boy continually cnarmed family and caregivers in anticipation of his dying his parents shared their faith in 5 If we Creating 5 V9 gt w3 quot i would it look andfeel Me God and heaven In his last days the typically tallltative youngster withdrew in deep sadness and silence Then one day be confided his fear How will I recognize all my relatives in heaven His family quickly gatnered photos of relatives many of whom had died long before the boy s birtn At first he intently studied the photos I W 7 7 7 and learned their names A few days later be tearfully mm our Own Wwn ofWwn and 02 yer sa e men5 confided to his nurse he was worried that neaven would be boring because everyone there was old With his parents consent the nurse told him she knew cnildren his age who were already in heaven With the consent of those cnildren s parents snapshots of prospective playmates were shared Each night the boy looked through his stack of prints thinking of new friends he would soon meet All of the photos brought him comfort They were eventually displayed together in a place of honor at his wake 507 Transitions Transitions are like knitting weaving together relationships and creating connections A transition encompasses change good byes and welcomes Sometimes families learn during pregnancy that the expected baby has a condition that will cause death before birth or shortly after Ritual can help a family get ready for both Here is a way of welcoming a new baby who may not live long Ritual of welcome Gather together all family members and friends who would like to welcome the expected baby Ask each to bring an item or words written on a piece of paper that represents something significant in the family s life or the person s relationship to the baby or other family members Pass a travel bag or small suitcase from one person to the next Let each participant talk about what they place in the bag and why it is precious When everyone is finished all will say together We Wecome you into our family no matter how short your time with us W be has been We want you to be oied to be comforted to be pain free 51 Blessing Way Knowing that a baby will die usually allows time for creating special rituals The Blessing Way ritual designed to honor a mother s upcoming birth can be adapted for a mother who is pregnant with a baby known to have a life threatening condition The purpose of the Blessing Way is to nourish the mother which can be done in a variety of ways foot washing hand massage gifts written messages and food pNOTE TO CAREGIVER 1 Caregivers do the best they can in preparing families for how their baby may look or what the baby s living and dying may be like In doing so we may make assumptions about parents experiences that are different from their reality We know parents who wished they would have been better prepared Stephanie s story nextpage reminds us that the best approach is probably one that engages the parent in how much or how little information they need or want When you ask Would you like me to tell you more about what your baby will look like or Would you like more information on what your baby s actual dying may be like you put the decision about information in the parent s hands When you let them lead the way you build trust Trust is the cornerstone of any relationship Stephanie s family chose a unique setting for a transition ritual their home Amelia Rose spent four days at home after she died lovingly cared for by her family 5 T 1 M E C t PY 7 7quot W quot 5 Y w I av r quot 5 n r L r Our Final Goodbye By Slepkanie molker of melia Rose poslea on ker klog In lle guiel ofllis sleepy morning I sil nexl lo my melia Rose 7lis morning will ke our gooclkye Toclay will ke lle nal one for me in llis journey oflelling go Today my kaky girl will ke forever clangea ana gone plysically from my life No longer will I ke akle lo lola39 ler caress ler kalle ler in my lears Never again will I know wlal lle soflness ofler skin feels like or ke akle lo krealle in ler sweel kaky smell My lips will nol krusl againsl lerforeleaa anymore My eyes will never see ler again My arms will never craclle ler rock ler or ke akle lo reacl for ler again My neck will never feel ler weigkl snugglea againsl il My learl will never ke lle same again Il is fraclurea ancl kroken I am so very graleful for lle klessing of our cloice lo keep ler lome will us 1 lave laa four clays will melia Four clays as a family Four clays will all four of our clila ren logeller 7le unpleasanl llings llal llose uncomforlakle will our cloice warnecl us akoul NEVER IIz4PPENED Ske is per ecl will rosy cleeks sofl skin and a peaceful expression Sle looks as sle is asleep 1 were preparecl for less lime 17 kepl llinking llal we only would lave one clay will ler llal lle clange ofcleall woula lappen loo fasl in ler small and fragile lillle kocly ncl il lasn l Sle looks lle same as lle clay I issuecl lerforll inlo llis worla Il las nol keen scary for our clilclren 7le opposile in facl iclen Oliver ana Marin lave keen akle lo experience cleall in a way llal mosl aclulls never do 1 lave keen akle lo slare melia will llem answer all lleir gueslions ana give llem lime lo ke will lleir sisler 7ley lave only ever lovea ler wanl lo kiss ler lolcl ler ana lell ler lleir slories Saying gooclkye loclay will ke lara for llem as well kul lle lime we lave laa las given us memories more precious llan I could lave imaginecl 1 lave given our clila ren lle mosl precious ofgifls TIME lo say gooclkye on lleir lerms Slill lle gooclkye is kreaking my learl IIolcling ler in lle lasl minules unlil sle las lo go is all I can do Crying will lave lo su ice I jusl wanlea lo wrile llis clown so llalI can rememker llis in lle klur of clays lo come 7le monlls and years aleaa willoul ler are unimaginakle rigll now Now in lle lasl precious minules I wanl lo soak up lle momenl inlo my skin and make il a parl of me forever Tle klankel sle is wrappea in lle lal llal las gracea ler leaa lle jewelry sle wears will ke wlal we lave lefl 7ley coula nolpossikly ke enougl kul il is all we will lave So for now I will lola onlo ler kocly I will craclle ler in my arms one lasl lime I will kiss ler encllessly kefore sle leaves I will inlale deeply and lry ana rememker ler smell I will clesperalely pray llal I can lel ler oul of my arms ana slare ler will lle resl of my family 7ley will neecl lo say gooclkye loo Bul I am feeling very sekisl rigll now and cannol kear lo lel ler go 7lis is lle ena Our nal momenls logeller s lle minules pass lley are peifecl ancl sweel and precious 7ley are exguisilely painful and leavy al lle same lime I can feel lle lime slipping away il is alive almosl eleclric in llese lasl momenls httpbeyondvvordsdesignscomp1484 Reprinted with permission 53 NOTE TO CAREGIVER Touching Hands Ritual of Transition After the death of their baby or child family members often express concern as they contemplate leaving the hospital Consider offering to place an ink print of the child s hand on the palm of the grieving parent s or sibling s hand in preparation for this transition This is a way for family members to hold the child s hand as they walk into the outside world One mother took a picture of the ink print in her palm and had it recreated as a tattoo This lasting image of a parting ritual comforts her to this day Reflection In wJaz ways J6l U6 you welcomed a special cJild into your life Tain aoouz final moments you 7a ve experienced VVJill was z Je time like for you VV7611 memories do you carry in your aearz 54 Bridges The photo illustrates a foundational understanding of bridges What one sees while crossing is only a portion of the entire bridge The part beneath often forgotten holds the bridge in place allowing it to function as a connector Bridges link one place with another Metaphorically bridges can be used to link the present and future the present and past and life and death Ritual is also a bridge The transforming power of ritual does not end after the death has occurred Ritual can become a trusted pathway a tangible connection to the one who has died Evidence of ongoing ritual can be found if one looks or listens carefully Examples include l 14 roadside memorial to a teen who died in an accident fr 4 special nook or area where mementos of a child are displayed in a home l Serving a special cake each year on the hirthday of a child who died fr 4 visit to the gravesite l Tending a memorial garden Sometimes the very act of honoring memories of someone who died involves ritual Jessica was 18 when she died in a car accident killed by a driver who fell asleepessica s mother Jean chose to honor her through a photo quilt which served as a bridge to the family s memories of Jessica x I I I I I X X X X I X X i I I I I X l7er l7ow mucl7 I love l7er and miss l7er Photo Quilt Instructions Here are the directions with a few tips that helped me create three beautiful quilts one for each of her siblings Maggie Ted and Jeremy Purchase inlltjet printable fabric in white from a craft store Determine the size of the finished quilt I used 85 photos 7 portrait and 28 landscape Follovv instructions q if for printing photos onto the fabric I used best quality printing which meant four ink cartridges per quilt I I I I X X I I I I X X X I X I X X X X I X I X K A llteepsallte Quilt for Jessica IXIKXXIXXXIXX I X essica was just a very special young lady witl7 a zest for life you couldn t put into words I lrad to do sometl7in g and tl7e idea of making keepsake quilts in essicas memory felt riglrt a gut from me to l7er to snow It was lreartoreaking at times to work on tl7em out it was also a lrealing process I needed to go tl7rougl7 Wlren I gave my dauglrter Maggie wl7o is two years older tl7an essica l7er guilt I l7ave never seen a more wonderful expression on my dauglrterfs face For one sl7ort moment tl7e love tl7at I felt from Maggie wl7en sl7e received tl7is guilt took away all tl7e pain of losing essica Choose material for the background that has a comparable weight to what you use for the photos Take the landscape photos and sew one strip of material across the top and one across the bottom to make them the same height as the portrait oriented photos Press in the same direction on each block and always on the back side of the picture Next lay them out and sew into rovvs Sevv a row of sashing onto the bottom of II I X X X X X X X X X X XX each row and onto the top of the first row I used 25 vvide strips Add the border cutting it to the size wanted for the overall quilt Sevv vvidth ends first and then lengths Press after each end is sewn on and do a final pressing of the whole quilt from the back side Use a flat bed sheet l80 2OO thread count for the backing several inches larger than the top Assemble it back to front pinning it to a quilt rack or taping it Signs as Bridges to Memory Signs offer hope and portray ongoing relationship Signs are reported by caregivers as well as parents often bringing great comfort to those receiving their awaited con rmation or acknowledgement Some parents believe their child communicates with them through signs such as a dragon y feather or coin Happening upon the object unexpectedly may be used by the bereaved as recognition their child is okay In J 999 I lost my rst son to SIDS One nigbt several weeks cdterjastin died my basband and I were driving in tbe car It was a clear crisp nigbt and it seemed as all of tbe stars were visible in tbe sky I asked God for a sign tbatjastin was all rigbt Ybat be bad made it to Heaven and was all rigbt I waited and waited all tbat drive bome bat notbing Every time a new baby is born into our family my mom makes Cbristmas stockings for tbat babys rst Cbristmas erjastin died my mom didn t know wbat to do sbe asked we still wanted a Justirfs Siblings stocking made for jastin and we said Yes with hls Stockmg Jack Isabella 779e next time my basband and I went to visit my parents my mom told me sbe bad completed and Elliot jastins stocking Sbe told me bow it bad been so bard for ber to try and decide wbat to pat on bis stocking Sbe said one day sbe was sitting tbinking about bim and bow sbe could make bis stocking just rigbt Yben sbe felt a band on ber sboalder and just knew wbat it bad to be Sbe broagbt oat tbe stocking dark blue witb a ligbt blae angel in tbe middle and surrounding it several sets of silver stars I immediately tboagbt of tbat nigbt witb tbe star lled sky wben I asked for a sign tbatjastin was all rigbt Here was my answer on a Cbristmas stocking wbicb my motber somebow magically created to coincide witb my desperate searcb to learn of my sons well bein g Needless to say I bad gotten my sign Heidi Giese 60 NOTE TO CAREGIVER Many hospitals provide memorial services remembrance walks and hospital burials Each of these has important symbolism and meaning for a community of the bereaved and their caregivers serving as a bridge of support and hope that honors relationship over time Caregivers who provide follow up bereavement support may ask parents What has become meaningful to you What brings you comfort Listen for ritual and symbolism e g sleeping with a child s favorite toy blanket or out t noting that seeing a butter y is a sign from their baby that she is okay Reflection Caregivers and parents grieving their child s death can ask these kinds of important questions VVJill are you doing to rememoeryour buoy How do you stay connected to your CJild In ZU7611 ways do you find comfort euc9 day 63 Ritual for Caregivers Those who care for families when a child dies witness the sorrow and suffering of othersust as with families ritual for caregivers can be co created arise in the moments surrounding signi cant experiences or be planned in advance Moments that may give rise to ritual Planned responses that may give rise to ritual We Multiple deaths on the unit in a short time We Recognition of stay commitment to their daily care of patients We Traumatic patient encounter We Blessing of caregi72ers hana39s We Loss of a long term heloved patient We Rea39ea39ication of a unit space We Disconnection among team memhers due to a Igeatvy workload We Sta memorial service Do hot cose your eyes hetore sufferhg Fhd Ways to he Wth those who are suzterhg by e rheehs ewelteh yourset and others to the reety of suzterhg h the vxorct Gautama Buddha The Caregiver s Final Goodbye Suffering is a state of intense distress generally involving physical emotional or spiritual pain Pediatric and perinatal healthcare professionals witness the suffering of others and experience personal suffering1 According to Ferrell and Coyle nurses have described their role as helping those who are suffering become whole 1P3974 Suffering affects the whole person in uences or is in uenced by relationships and has the power to transform1 19 Ritual can play an important role in allowing healthcare professionals to process their own suffering and to grieve Papadatou asserts that caregivers grieve and that grief is transformative She also makes the key point that grief varies between experiencing and avoiding the sense of loss Caregivers who are not able to let go of the intensity of grief at least for brief periods are more likely to experience complications of grief Ritual that binds caregivers together and creates community in the midst of loss is a balm for the hurting heart and contributes to the transformation from pain to hope When the timing is right ritual can also help to release their feelings so they can move on to care for other patients Papadatou notes Formal or informal ritual activities help them a rm their honels with each other and enhance connectedness and a sense of helonging to a team that is ahle to contain sufering ana pro72ia e opportunities for change ana growth19PP3926439265 s a nurse one of tl7e saddest times cy ter a deatl7 is vJl7en tl7e family l7as left tlae lyospital and I m carefully preparin g tl7eir cljildfs oody for eventual trany er to tl7e funeral director 779is time is a nal act of care and usually unfolds in a timely faslyion I still cannot fully capture witlr words vJl7at tugged at my l7eart one particular evening vJl7en I could not nisl7 tl7is task of preparing a small body n unsettling urge overtook me as I could not bear to move forward witlr my work On Rocking Arthur The room seems so empty now I am left holding you Your family has gone But traces of their tears are evident in the dampness of your clothes 39Iheir whispers of love still hang in the air I sink into the rocking chair cradling your motionless body in my arms Together we rock You are so beautiful your face and body perfectly formed It is hard to believe that inside you were too broken and sick to remain long on this earth Tears fall as I think of all your poor body has suffered 85 endured in the ght to live Minutes pass and then an hour For some unknown reason I am unable to stop rocking you I have sung to you prayed for you thanked you for allowing me to have a small part in your short life But still I am unable to put you down Friends peek around the curtain their worried looks convey the unspoken words of concern The rhythm of our rocking is broken by the familiar ring of the telephone It is your Mother Crying wishing she could tell you of her love just one more time She thinks you are already far away Smiling through tears I gently reply We ve been waiting shall I put the receiver close to him Faint strains of a lullaby drifted upwards We had arrived Kathie Kobler o o a a o o o a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o no Caregivers experience many signi cant moments and emotions when a baby or child dies Out of such experiences ritual may arise offering staff the opportunity to honor relationship and their grief For example caregivers may choose to do one of the following Kfz Nurses often join together to prepare a child is hody for the funeral director Such tender caring moments may o er opportunity to pause and re ect aloud on the special ways the nurses connected with the child l 14 prayer hlessing or simple words may he spoken as a child is hody leaves the unit fr 4 single rose can he laid at the hed space where a death occurred for a period of time Kfz Hanging a picture of an angel or star in a special spot on the unit can alert incoming stay that a death has occurred Kfz n organized prayer hlessin g or simple words of renewal may he used over a room or area of the unit where multiple deaths have occurred One hospital chose to completely redecorate the room on their lahor and delivery unit after the devastating unexpected death of a mother and her hahy fr 4 memorial service for sta lonly can he planned to honor children who have died during the past year Sta may choose to light candles or release halloons or hutter ies as the honor the recious lives the are rememherin J J 3 Unit Blessings Sometimes hospital units experience patient deaths in rapid succession Heartache may be pervasive and palpable as teams are present to successive grieving families Staff may ask to have the unit blessed after such periods of unrelenting sadness39Ihe next ritual written and led by chaplain resident Tracy Nolan M Div offered NICU nurses and residents the opportunity to acknowledge three deaths in less than 24 hours In a beautiful example of co creation team members responded in an unexpected way when Tracy invited them to touch something in the unit They reached out and held onto each other as the ritual unfolded I know that the last few weeks and even just the last few days have been incredibly dif cult here in NICU We ve lost too many little ones Angie asked me to lead us in a blessing of this space particularly Pod C as we enter into this new day and remember God s presence the presence of something or someone bigger than us all in this place So to start would you join me in prayer Loving God we come io you wiib sadness and we are siriving for irusi Be preseni bere in ibis place ibis Pod wbere you bnow pain bas come so deeply Grani your presence ibai ibis would be a place free of pain and insiead lled wiib peace Grani your presence ibai ibis wbole NI C U would be a place free of fear and insiead lled wiib irusi Grani your presence ibai we would be lled wiib your spirii Be bere wiib us now and always rnen As I was thinking about what it means to bless this space I recalled the ways I have seen you all bless this space every day with the care and love that you give to all of these little ones every hour So it would only be appropriate that your hands are the hands of blessing in this space today As you re able I invite you to place a hand on a wall a condo a crib a desk a chair and join me as we bless the space together I ll speak a word of blessing and each time I say 17 say I d ask you to repeat Peace and bealing be preseni bere Ybese walls of Pod C baoe seen ioo many iears God Families friends and we ourselves bane feli pain and desperaiion Mabe ibe iears pain and desperaiion of ibis space be no more No more We say Peace and healing be present here 17 bnow ibai you are a God of love wbose inieniion is always love wbose presence is always love Fill ibis space wiib ibai sieaebfasi love and overcome anyibing ibai is NOT loroe We say Peace and healing be present here Our bands and bearis are iired from weebs of losses 17 asb for energy wisdom and guidance as we daily enier inio ibis worb our worb of blessing Ybrougb our bands we say Peace and healing be present here bove all we bnow ibai you lead us ibrougb valleys of deaib and inio green pasiures Mabe ibis place a green pasiure resiore our souls and be wiib eacb person youngesi and oldesi in ibis unii Mabe your blessing be bnown nd so we say Peace and healing be present here Amen Go in peace ioday embraced by God is peace Go in peace ioday surrounded by friends Amen Touchstones for Ritual A hospital team may choose to keep speci c supplies on hand that can be used as end of life situations unfold on the unit The nal section of this book will describe items that may serve as touchstones along with corresponding ideas so caregivers can co create their own rituals Many of these items can be found online and or purchased at a local craft supply store Caregivers are encouraged to consider their favorite verses or lines of poetry that could be incorporated into the ritual A few rituals are offered in their entirety as examples of how ritual can be customized to meet the individual needs of caregivers following shared experiences of loss and grief o o a a o o o a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o an Candle Battery operated icker candles are safe to use in the hospital setting and come in a variety of sizes They can be used to honor signi cant events or the deaths of patients For example a candle can be used at the start of a unit meeting to honor those patients who have died or who have touched the team s heart since the last unit meeting Staff can be invited at the start of the meeting to call to mind the baby or child they would like to remember After a few moments of silent re ection the leader can say We light this candle to remember and honor those who have brought light and love into our lives o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a a o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o o a a o o a a a o co Hope Chest Treasure Chest Ritual A small woodenwicker chest or box can serve as a meaningful container to hold words written by ritual participants For example the treasure chest could be placed in a signi cant place on the unit after a child s death Small pieces of colored paper can be placed next to the chest Written instructions placed nearby can invite staff to write a few words or draw a picture that represents a special memory of the patient The completed papers may be folded and placed in the chest as reminders of ways staff will continue to treasure their memories of the child Sand Sand can provide an especially effective touchstone after difficult situations leave staff feeling drained uncertain or overwhelmed about next steps Sand can be placed in a shallow glass dish or pan The words below refer to the shifting sands metaphor on p 15 and can be read aloud IquotWzlbin g along tbe beacb or climbing across a sand dune is unpredictable s tbe sand gives way to tbe weigbt of your feet you may be moved in an unexpected direction reas tbat loobed easy to navigate may in reality be more di icult tban you anticipated 14 beautiful sbell sbiny and colorful wben you picb it up may bave been tbe source of intense pain wben you stepped on it moments before You can t go on until you tend to tbe pain ltbougb in tbe end we will mabe our way tbrougb tbe sand to arrive at our planned destination a review of our footsteps will reveal a patb marbed by sbifts and transitions from our intended course journeying witb sicb cbildren and tbeirfamilies involves enduring transition and cbange Over tbe past two weebs we bave experienced di iculty and uncertainty You may cboose to add a description bere of tbe sbared situations tbat bave prompted tbe ritual Ybere may bave been times wben you bave felt weary especially wben no end to tbe burt and pain seemed in sigbt You may bave experienced unexpected sbifts in your tbinbing feeling wisbing and boping Pause for a few moments for private re ection Before us is a circle of sand You are invited to come forward as you are ready to place your band in tbe sand s you set your band in tbe sand press down Notice bow tbe sand sbifts underneatb your weigbt Notice too bow eventually your band settles into tbe sand nding a scg e resting spot Before you step away notice bow your band print overlaps witb tbe otber imprints Invite stc to come forward one by one to press tbeir bands in tbe sand Call everyones collective attention to tbe sand See bow our individual prints bave responded to tbe presence of otbers midst sbifting sands we are all intertwined present to belp eacb otber tbrougb tbe di icult situations we are facing In our collective presence as sbown in tbe sand we see uni ed solid centered spaces May tbis image be called to mind as we continue to move tbrougb tbis di icult experience Remember we are present for eacb otber May tbis centering ritual o rer bope meaning and bealing May tbe worb of your bands and bearts continue to be blessed River Stones River stones of Varying shapes color and sizes can be offered as a touchstone in ritual The stones could represent whatever you wish Here is an example of using the stones 77 38 CO1lI393gC StO1 1CS Stones bave been in existence for countless years enduring barsb conditions and severe transitions as tbe seasons unfold Yet tbey bave bept tbeir consistency and beauty tbrougb bard times Invite all participants to cboose a stone sb tbem to loob closely at tbe stone tbey bave cbosen Note tbe un igue size color texture of your stone Feel its beaviness or ligbtness in your band Now cup tbe stone in your band Notice bow tbe stone cbanges 272 l 77 2P 7quot6ll Zl7quot 566612 56 Qf JOZ 7 P76567166 Re ect on a situation in wbicb you provided strengtb or comfort for anotber in need of care just as tbis stone absorbs your warintb and cbanges because of your presence so does eacb burting individual bene t from your presence and care Even wben you cannot stoppain or si erin g your willingness is a priceless gift ccept tbis stone as a gift It is a courage stone a symbol of strengtb and resilience Wben you bold tbis stone Kb May you believe in your resilience during d cult situations Kb May you nd tbe strengtb you need to be present to tbose wbo burt Poetry Re ective writings such as poetry can be used as a touchstone in ritual For example when staff is hurting these words written by Emily Dickinson could be offered as a re ective reading during ritual Hope Hope s the thhg th feathers That perches h the sou Ahd shgs the tuhe thout the words And hever stops at a Emiy Dickinson White Feathers It is often helpful to provide a symbol participants can receive during the ritual and use at a later time as a touchstone to re ective memories Simple white feathers can be laid out on a table and offered during ritual This may be done in combination with Emily Dickinson s Hope poem Feathers can be a helpful touchstone after staff members on the unit have experienced much turmoil or distress Before you today is a vbitefeatber You are invited to pick up your featber Hold it in your band as you listen to tbis re ection Featbers are delicate ligbt in wei gbt and fragile in appearance Featbers sbi witb tbe sligbtest movement accommodating tbeir position as a result of even tbe sligbtest breeze Yet despite tbeir appearance featbers are incredibly strong Togetberfeatbers accomplisb an amazing feat Ybey can lift a bird in igbt to incredible beigbts just libe eacb of you you tirelessly sbi to meet tbe needs of your patients Your presence provides an incredible gift to tbose wbo burt May tbe work of your bands and bearts continue to be blessed Scratch Art Hearts or Stars At times during ritual it may be important for caregivers to re ect on special qualities of a child who has died or to recall speci c memories shared For moments such as these paper scratch art may be used to encourage creative expression These scratch art products come in a variety of shapes with bright colored paper hidden under a black coating Participants can use the scratch tool while writing or drawing resulting in beautifully colored words or designs The completed art can be strung together and hung in a special place on the unit Multicolored Glass Beads Staff members can be invited to string beads of different colors and shapes to create strength bracelets The information below describes the meaning of each color of bead Staff members should be instructed to choose beads that represent their work with patients and families After the beads are strung invite participants to share how they chose their beads as each connects to their work The ritual of beading and telling stories provides a touchstone for staff members in the moment and after as they wear the bracelets COLOR GUIDE Making Bead Bracelets to Inspire 8L Build Strength Yellow Intellectual energy optimism sunshine relaxation stress relief Blue Spiritual awareness tranquility peace inspiration comfort peaceful dreams 90 This bead activity is intended to allow you to re ect on the important work that you do Ask yourself these questions Red Physical energy good fortune adventure love ambition courage VV7611 mspzres you What gwes you strengz 7 or courage 271 your work Green Powerful energy of nature growth As you think about these questions choose beads that carry meaning heamgi hope feluve atio i bamce Gold Good health happiness success to you to construct a symbolic piece of jewelry This bracelet can We friends Wisdom Wealth God be taken with you when you leave today as a daily reminder of the Turquoise Creative expression imagination strength you possess Identifying what gives you courage is one way relaxed Se39l39aWare eSS 39 39t39aI39Ve OOO to honor your Work strength protection power o Silver Female power draws out negative energy telepathy distinguished E The guide at right describes color symbolism It is not meant to limit you in your bead selection process Colors can have different orange Friendliness intuition Creativity celebration courage meanings to everyone so be creative Purple Enchantment respect transformation charisma Brown Nurturing home dependable healing simplicity O9 White Purity serenity silence new beginnings balance harmony 3 Pink Admiration grace thanks inner I I I I I I I I I I I I I I Black Dramatic presence confidence I I I I I I I I I I I I peace emotional healing I s a p Water added at beginning can be used cyfter stafbas experienced di cult situations As the words about pouring out are read empty the water from the pitcher into the bowl 17 invite you now to tabe up tbe piece of paper before you Ybinb about your experiences witb families Ybinb about sometbi n g tbat bas been di icult for you sometbin g tbat you wisb to lay down sometbing you wisb you could cbange Write down a few words or draw an image tbat represents wbat you are bolding in mind Wben you are ready we invite you to come forward and place tbe paper in tbe water Use your n ger to toucb and submerge tbe paper Swirl tbe water I Wztcb wbat bappens Participants come one by one to the water experience their paper and written words dissolving into the bowl You may wish to play instrumental music during this portion of the ritual After everyone has nished dissolving their paper say the following words 4 In tbis act of release and transformation we open new spaces witbin ourselves Ybis now empty pitcber represents tbose new spaces 17 are emptied to be lled again End of version one Water added at end can be used as a community bonoring ritual 17 invite you now to tabe up tbe piece of paper before you Ybinb about your experiences witb families Ybinb about wbat you bope for consider wbat ways you appreciate collaborating witb colleagues and your wisbes for your team in tbe future Ybinb about wbat brings you meaning I Wite down a few words or draw an image tbat represents wbat you are bolding in mind Wben you are ready fold your slip of paper and come forward to place it in tbis empty bowl Yben tabe a place around tbe table When everyone is in place around the table share these words Ybis bowl represents tbe coming togetber of our bopes dreams and wisbes 17 are a community united togetber in tbe common bond of wanting to provide tbe best possible care for our patients Pick up the pitcher and share these words Ybis water represents our combined compassion energy and beart for tbis worb Empty the contents of the pitcher into the bowl swirl as needed or invite participants to join in swirling the water Let all observe in silence then invite re ection How was tbis for you Wbat did you experience Wbat is on your mind Allow participants time for processing this powerful ritual enjoy hearing the meaning they have found through the joining of the water and paper Provide closing words that acknowledge their work the gift of combined strength and compassion that are theirs as they continue to support one another in this work o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o o co A Bridge For Caregivers Caregivers willingly enter into a vulnerable place with patients and families As they provide care their own feelings and experiences are called forth As caregivers pause re ect acknowledge and are mindful they honor their own grief In doing so they release past experiences and create a bridge to a relationship with their next family Reflection N OTE TO CAREGIVER eae7 atJer wJen apatient dies We invite you to come back to these two In wmt ways can team members support pages after being with a family and child at the end of life Consider using the PRAM framework as you allow the photo to draw you in Pause Imagine yourself on the bridge in I Vmt are we currently doing the photo Reflect on what you have experienced with this patient s death Acknowledge what you will carry with you and the gifts left behind by this child VVJill could e added and family Be Mindful of the steps you will take on the bridge as you anticipate entering into relationship with the next family 76 References 10 11 Ferrell BR Coyle N 77939e Nature of Suferin g and tl7e Goals ofNursin g New York Oxford University Press 2008 Anderson M Sacrea39 Dying Creating Rituals for Einoracing tlae End of Lgfe New York Marlowe 2003 RomanoffBDTerenzio M Rituals and the grieving process Deatl7 Stua39 1998228697711 Romanoff BD Thompson BE Meaning construction in palliative care the use of narrative ritual and the expressive arts m Hosp Palliat Care 2006234309316 van Gennep A 77939e Rites of Passage Chicago The University of Chicago Press 1960 Rando TA Parental Loss of a Cl7ila39 Champaign IL Research Press Co 1986 Driver TP 77939e Magic of Ritual Our Need for Lioerating Rites tl7at Tranyform Our Lives ana Our Communities San Francisco HarperS anFrancisco 1991 Brin D The use of rituals in grieving for a miscarriage or stillbirth I 7nen 59 Yloerapy 20042734123132 CoteArsenault D Weaving babies lost in pregnancy into the fabric of the family journal of Family Nursing 2003912337 Grout LA Romanoff BD The myth of the replacement child parents stories and practices after perinatal death Deatl7 Stua39 200024293113 Meert KL Briller SH Schim SM Thurston C Kabel A Examining the needs of bereaved parents in the pediatric intensive care unit a qualitative study Deatl7 Stua 2009338712740 12 13 14 15 16 17 18 19 Milstein Q Introducing spirituality in medical care Transition from hopelessness to wholeness f lw 20082992924402441 Doka The role of ritual in the treatment of disenfranchised grief In Doka K ed Disenfrancl7isea39 Grief New Directions Clrallenges ana Strategies for Practice Champaign IL Research Press 2002135147 Perry BWhy exemplary oncology nurses seem to avoid compassion fatigue Can OncolNurs 20081828799 Limbo R Kobler K The tie that binds Relationships in perinatal bereavement M CN m Matern Cl7ila Nurs 201035 63 16321 quiz 321323 Pridham KF Limbo R Schroeder M Thoyre S Van Riper M Guided participation and development of care giving competencies for families of low birthweight infants 4a39ro Nurs 199828948 958 Kobler K Limbo R Kavanaugh K Meaningful moments The use of ritual in perinatal and pediatric death M CN m Matern Clrila Nurs 2007325288295 quiz 296297 Back AL BauerWu SM Rushton CH Halifax Compassionate silence in the patientclinician encounter a contemplative approach Palliat Mea 2009121211131117 Papadatou D In tl7e Face of Deatl739 Professionals Wlro Care for tl7e Dying and tl7e Bereaved New York Springer 2009 We invite you to share stories of ritual and reflection you experience as a result of reading our book Please send them to rituaandrefectiongmailcom Photographs are Weoorne too About the Authors Rana Limbo PhD RN PMHCNSBC FAAN is associate director Resolve Through Sharing Bereavement and Advance Care Planning Services Gundersen Health System La Crosse Wisconsin She has been involved in perinatal bereavement work as a nurse since 1981 She was the rst coordinator of Resolve Through Sharing the premier international hospital based perinatal bereavement program She is the author of numerous articles and book chapters Her rst book co authored with Sara Wheeler When a Baby Dies A Handbook for Healing and Helping published in 1986 is considered a classic and is widely used by parents and professionals She is a Fellow of the American Academy of Nursing and an elected member of the International Work Group on Death Dying and Bereavement Kathie Kobler MS APN PCNS BC CHPPN serves as the advance practice nurse leader of the perinatal and pediatric palliative care programs at Advocate Children s Hospital Park Ridge IL campus She has been caring for medically fragile and dying infants and children since 1985 She speaks and writes professionally on perinatal and pediatric palliative care and bereavement issues She works on a national level to promote the growth of perinatal and pediatric palliative care currently serving in leadership roles on the National Board for Certi cation of Hospice and Palliative Nurses and the National Pediatric Hospice and Palliative Care Collaboration
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