Advocating for Wholeness
by Kara L.C. Jones

Fred Rogers of Mister Rogers' Neighborhood did so much work in his lifetime to create opportunities for people to be emotionally present. He once said, "We can't be expected to leave the unhappy and angry parts of ourselves at the door before coming in. We all need to feel that we can bring the whole of ourselves to the people who care about us." In the face of life after the death of a child, this statement is so powerful and should readily be shared with family and friends who surround the bereaved parents.

As bereaved parents, we are faced with grief that can be overwhelming at times. Our children may have died due to miscarriage, stillbirth, preemie birth complication, SIDS, disease, accident, or any number of other causes. Regardless of how or why they died, we as parents are left dealing with grief while trying to continue living, trying to reconnect with the world at large.

At first after our child's death, the people around us may have sympathy. They can understand the immediacy of the loss and may try to be present for whatever emotions arise for us. But many, many loved ones fail to see the long term effects of our losses. Maybe this is because there is no proper word in the English language to describe us. If your parents die, you become an orphan. If your spouse dies, a widow or widower. But when your child dies, you are??? Even in language we are left out, hindered from describing the long term reality of our lives. The reality is this:

We are still parents. Death cannot change that. And emotions like
sadness and anger will arise from time to time throughout the
balance of our lives in regards to our child's death or in regards to
our role as a childless parent. There is no "closure" to our role as
this different kind of parent.

Understand that Dr. Elisabeth Kubler-Ross wrote about the "stages" of grief in the early years of hospice care in the United States. She mapped out those "stages" based on what the terminally ill person was going through at any given time. The final stage became "closure" because the person would be dead. She did not originally mean for these "stages" to be used for the bereaved who are left behind to try and live again in grief's wake. But due to lack of available bereavement research, materials, and support back in the day, the caregiving community picked up the "stages" and began trying to make sense of what the bereaved were feeling.

But now it is time to acknowledge that the "stages" must be expanded to really apply to bereaved people. We must look more toward Fred's idea of bringing "the whole of ourselves" to the world at large. And while it may seem unfair because grief is hard enough by itself, it has become the job of the bereaved themselves to speak up and ask for this change, to demand a shift in consciousness, to be vocal about how people might best support us over the course of time.

If we want family and friends to rediscover the "whole" of who we are after the death of a child, we have to stop being complicit with the demands that we put on happy masks. This doesn't mean that we are constantly morose or anything. This doesn't mean that we are using baby dolls pretending it is the child we lost and mothering the toy in some sort of disconnect from reality. It simply means that we be allowed to feel whatever we feel in the moment without censorship.

So the family wants you to come to bbq celebration, and you have a lot of anxiety around this as there will be pregnant women there or there will be children there who are the same age your child should be. Well of course you have anxiety about this because we all fear going into the situation and having absolutely no one in the room acknowledge this reality, thereby isolating us in our grief even more. So it is our job -- however unfair it may seem to have to advocate for ourselves in this time of need -- it is our job to say to our family members, "Yes, I want to come, but I have anxiety about this, please be gentle with me." And then to ask for whatever you need to make that day gentle. Maybe when all the other mothers and fathers are being celebrated as parents on Mothers & Fathers Day, just maybe the childless parent can be included, too. If all the other parents are getting flowers, then by all means include the bereaved parent! Or maybe other are getting gifts? The make a donation in the child's name and give the acknowledgment of that during the time of opening presents. There are lots of options.

For each of us, this scenario will be different. We may simply want to be hugged should someone see us crying. Hugged without being told, "Hush now, it's okay," because it isn't okay. We are there in the midst of joy and gratefulness, but in the *very same moment* we are sad, feeling lonely, and just want to be acknowledged. *This* is what it means to "bring the whole of ourselves" in the door for everyone to see and know. And to continue, over the years to advocate for ourselves, letting people know there is no "closure" on this. It may change from year to year. Some years we may want to be alone and do nothing with family. Some years may feel more full of joy than grief. That's okay, too. We are not advocating each and every day be prescribed to look like this or like that. We are asking that people simply be present for whatever comes up in the moment.

The most surprising thing about this course of action is that it makes all of us be more present for each other in the moment. As we practice and advocate good self-care, so too are we able to advocate for the care of others. When we ask for and are allowed to feel a full range of emotions ourselves, so too are we able to let everyone around us do the same. Attending every Sunday dinner or holiday party does not make a family. Being emotionally available to each other consistently is what makes a family. Of course we are advocating for that.

While it would be great to just have us all come to this realization as a general part of life, the reality is that many of us face these challenges for the first time in the face of grief. Grief makes everything doubly challenging. Please know many of us out here see that, know that, live that right with you. You are not alone. Here's hoping that when we meet, we'll be bringing "the whole of ourselves" to the table.

About the author

Kara L.C. Jones is a graduate of Carnegie Mellon University where she studied Literary, Cultural Theory and Poetics with a minor in Child Development from Chatham College. When at CMU, Kara mentored with Hedda Sharapan, David Newell, Fred Rogers and the team at Family Communications, Inc., producers of Mister Rogers Neighborhood.

In 1999, after the death of their son Dakota, Kara and her partner Hawk co-founded KotaPress (KOTA: Knowing Ourselves Thru Art), an expressive arts outreach. Through their KOTA work and in partnership with the MISS Foundation, they have been mentoring other bereaved parents and caregivers around the world, offering creative perspectives on learning to life again after loss. In 2001, they were featured on NPR in an interview with Megan Suyks who then hosted KUOW's show "The Human Condition."

Kara received her Reiki Master-Teacher certification with Masters Jeanne Robinson and Jane Valencia, having apprenticed with them since 2004. In 2007, she began an apprenticeship with Professor & Coach Sherene Zolno exploring The Hero's Journey (based on Paul Rebillot's work) as a personal and professional development tool. As a coach to private clients, Kara facilitates the exploration of grief and creativity using many tools for alternative mind, body, spiritual health. Some of her specialties include henna art, heART-making, co-active coaching, Reiki, Tapping, asking the answerable questions and more.

She is an expressive artist working in many formats from henna art to ATC, from altered books to handmades, from poetry to prose. With her adventure, she explores intentional henna art as an expressive tool for everything from celebration to grief, solace to release. Please visit her excellent and resourceful Kota Loss and Compassion Blog. You can be in touch with her via