By: Patti Budnik and Cindy Swain
When my husband and I (Cindy) lost our baby, our whole world turned upside down. Although family and friends were a great support in the early days, they soon seemed to move on with their lives and expected us to do the same. They did not know how to deal with the new people we had become as grieving parents, and we felt very alone and misunderstood. That changed when we found Share and the community of support they offered. The support group became our lifeline. We waited for each monthly meeting to be in a place where we were welcomed as we were, with all of our brokenness. A safe place where we could talk about our baby, our grief and make connections with other parents who shared similar stories. We were no longer alone or felt crazy for the thoughts and feelings that overwhelmed us. We grew closer as a couple, as each shared things in the meeting that we hadn’t told each other, trying to protect the other from our pain. The support we found at meetings, the memorial events that celebrated our babies, and the friendships forged along the way were really what kept us going through the dark days and helped us keep moving forward toward the hope that life could have joy again. Without the support we received from Share, I don’t know how we would have survived the loss of our baby boy.
We all grieve and mourn differently. We express our heartache and pain differently. Our reactions and emotions to our loss can change often, so it is important that each family have access to a variety of options for support and resources.
Having a support person at home is wonderful, but often there is so much that is left unsaid or expressed. Share’s primary mission is to support families during the loss of a baby. This support is needed well past the time of the loss. Our hearts continue to grieve, mourn and love our babies forever. With time, our grief does change and so does the need for the type of support we seek. Having a variety of options and resources for support is essential for healing. Share was founded on the need for parents to support one another and this continues to be the foundation for all of our supportive resources.
Peer support groups
Peer support groups allow for a sharing of experiences with others who have walked a similar journey. It is very reaffirming to hear from others who have had similar challenges and struggles. This is the place and the people who understand the anger, the sadness and the frustrations that we feel after our loss. Here, we are not told to ‘get over it.’ Here, we are able to talk about our baby and say their name(s), when we feel like the rest of the world has moved on. The group provides a safe place where you can really feel heard and know that you are not alone. Parents that are farther along in their grief journey can also offer their experience and provide hope that there is healing after loss. Share was started with a support group of parents wanting to share the stories of their babies and their grief. Parents continue to voice this need and support groups remain a foundation for many support programs. The benefits of support groups are proven through research and the experience of hundreds of the families at Share.
It can be difficult or overwhelming to hear the stories of other families who also lost their baby. Meeting or talking with the group facilitator before your first meeting can really help to ease any fears and help you feel more comfortable about attending the meeting. Keeping a connection with the group facilitator can be very helpful. It is also common for parents to make connections with other parents that lead to ongoing friendships. Often support groups meet monthly but we still want support in between that time.
Online support groups or chats
Online support groups or chats provide an additional option for support. This is a convenient way to have conversations with peers without leaving home. An online chat should still have a facilitator or moderator. Share provides three online chats a month; all are moderated on a secure and private site. This is a great way to seek support when there is not a peer support group in your area or if you want additional support between meeting times.
Closed Facebook Groups for Parents are another good opportunity to be connect with other parents. Share has several closed parent pages that are also moderated.
Share Companions are parents or grandparents who have had a past loss and now volunteer their time to help support other families that are experiencing a loss. They can provide support at the time of your loss to the weeks or months following your loss. Companions have been trained in grief of the family and can use their experiences to walk with a newly bereaved family on their journey to hope and healing. They provide a trusted relationship and personal connection that helps many families feel like they are not alone.
Writing can also be healing. This could be journaling, writing a letter to your baby or writing for the Sharing magazine. There is something very powerful about letting your words escape you. Don’t be intimidated by journaling. It doesn’t have to be neat or organized. Your spelling or grammar doesn’t need to be perfect. It doesn’t have to be shared with others. Writing can be a way to express the thoughts and feelings that you may not otherwise have the opportunity to share.
Some people have a real gift with writing and from them, we get additional guidance and understanding.
Reading can be very helpful. Share has multiple grief support brochures and booklets that are free to parents and their families. There are also numerous books that can be helpful; from parents’ personal stories to ways to deal with your grief. If reading is helpful to you, contact the Share office for a list of recommended books. Our online magazine, Sharing, has many articles written by other bereaved parents that may resonate with you and bring validation to what you are feeling. They are written on many topics that bereaved parents experience and can be a source of comfort and encouragement.
Professional counseling or therapy
Professional counseling or therapy is completely normal and actually very common. What can be the hardest part of seeking professional care is finding someone that you’re comfortable with. In our everyday lives, if we can’t fix something on our own, we look for other sources of help. Why would we not do the same thing for our mental health?
When we are grieving, the world does not stop for us. Instead, we are trying to heal through all the painful dates on the calendar, return to work, and maintain our role within our families and homes. Isolating yourself is common and at times can feel needed. Because of the changing daily triggers, what we find helpful one day may provide little comfort on a different day.
Having different resources available is so important and helpful. It is much like our personal coping skills. It can be overwhelming to come up with ‘ways to cope.’ It can be a little easier to think of hobbies, things or places that you enjoy. It is good to have a variety of options. At Share, we refer to this as your bag of tricks. Doing things that you enjoy both indoors and outdoors. Having things around you that bring you comfort, such as music. Our community of support grows daily with added organizations and resources, additional trained caregivers, and you. As parents and families move through their grief, the love for their baby continues. We, at Share, are here to support you on your grief journey. We hope that you find the support that meets your needs, and brings you comfort.
About Patti Budnik, BSN, CPLC – Bereavement Care Manager
With over 20 years of NICU and Labor & Delivery nursing experience, Patti has seen first-hand the benefits of Share programs both for her patients and for herself as a professional. She joined the National Share staff in 2013 as the primary liaison for the Share Companion program. In her role, Patti provides education regarding standards of perinatal bereavement care and Rights of Parents.
About Cindy Swain, BSN – Administrative Assistant
Cindy became involved in Share in 2001, first as a bereaved parent, then volunteer, and joined the staff in 2017. She has a BSN in Nursing and a BS in Biology from St. Louis University. She serves as the Administrative Assistant for Share, and supports the staff in all aspects of Share’s mission. She enjoys using her personal experience to connect with newly bereaved parents.