All photos and text are the property of Libba James, and may not be used without her consent.

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Grief & Loss Presentation
at the 2007 Romberg's Retreat

Kelley's high school counselor, Libba James spoke to us at the 2007 Romberg's Retreat.

Libba's presentation was how "Grief & Loss" relates to us having Rombergs Syndrome. She had a very unique insight in how it can be for us to deal with the losses that we have had. She had slides to go along with her presentation. We video taped her presentation and have given a paraphrased account of it below. We of course could not relay the complete detail of her presentation. I feel we have captured enough for you to benefit from it as well.

Loss is any experience across the lifespan that demands the surrender of something personally significant and/or familiar.

The way that I approach counseling is when I meet with a student, I'm always looking at what have they lost? And most of the time, I can sit down with a kid who is struggling with something and look back and find something eventually, that they have lost in their life. So that is where I'm going with a lot of my research and in my talking with people. Loss is huge, loss is across borders with all experiences.

Each of us is the author of a life story, a personal narrative. The story of one's life includes facts, perceptions and interpretations.

One of the main things that I have found with Kelley and people with Rombergs, is absolutely there has been a loss there. But the biggest thing is resilience in how they have reconciled with that disease and how the families have helped and really come together. Another thing that I talk about is personal merits, our stories. Each of us has a story and it includes everything in your life, everything that you ever thought, your perceptions, your beliefs. Everyone has a unique story.

Stories move in circles. They don't move in straight lines. So it helps if you listen in circles. There are stories inside stories and stories between stories. Part of the finding is the getting lost. And when you're lost, you start to look around to listen.

One thing about stories, they move in circles and they move in and out. Elizabeth Cooper Ross, she was one of the back bones of Loss and Grief research theory and she was the one who started up with looking at grief and going through different stages. You look at denial, you look at anger, acceptance and different stages, going through grief. Her theory was very revolutionary when she came out with it. However, now looking at what she has done, we put loss into that.

Loss is more of a circular thing. It goes in waves. It goes in and out. You have these stages yes, but at one time you will be angry, then you go back and then you are angry and you are bargaining and talking about it to people. And anybody who really stands a significant loss, as some one who died or a divorce, things like that, you know where you are going. It is not something that you go through in stages and then get over. It would be much easier if it was. We would like for it to be that way, but it is more of a fluid type of motion, it goes in and out. It's unexplainable, it's maddening to go in and out of those things.

It really disrupts our life story. And I also see that in what many of you are going through with Parry Rombergs, it disorganizes your life story. It changes things for you. Then the beautiful part is taking that disorganization and making something wonderful. And that is definitely what I've seen in Kelley and in one night of meeting all of you.

Reconciliation of grief is integrating and incorporating a loss experience into one's life story. Grief Recovery is transforming the story so that the future is created with resilience.

Again I want to talk about the biggest part to me, reconciliation. It is incorporating that loss into your story. It's taking what's happened to you in your life. It's taking what is unexplainable, whether it be a divorce or a death, or disease. It's not focusing on that piece, but it's taking that piece and it's growing from there. It's making yourself stronger because of that experience. Grief recovery is transforming the story so that the future is created with resilience. That's definitely what I see everyday working with Kelley, and in learning more and more about Parry Rombergs. It is really looking at how you incorporate that into your life. How you grow stronger with it. It certainly would be families dealing with it as well. I know a lot of you are suffering with this disease and there are family members as well.

Our depth of companioning with others is expanded when we reflect upon our own grief journey.

And there are people who are support systems here. And what an amazing position you have as well, to be able to give that support and be able to go through that journey with your family member. Companioning is a huge piece of our jobs, not just a counselor's job. But all of our jobs. And I find companioning is how much energy you can put in with someone. And how much you are able to be present for someone while they are grieving. The only way that can be done, is if you reflect on your own grief and your own losses in your life. And be able to bring that to the table. And that is huge. All of us have a hard time doing that I know. It is a hard journey and that is part of what I try to do with people, is to reflect on their own journey. For those of you who are not directly struggling with that disease, that is something that each of us need to do to go through and really become aware of who we are. That is the only way to be present for someone else who is going through that struggle. I certainly could not imagine what you people have gone through who have Parry Rombergs. I can't possibly understand that, I can't try to. But I can understand myself and make myself present to be there and listen and companion with someone who is struggling through that loss. And I think that is what each of our jobs will be, to be present with someone who is struggling with that disease or any loss, and that is really just being present for anybody that you care about. I think that is incredibly important.

Shadow grief weaves private and personal layers of loss, not completely visible to others and often outside the conscious awareness of the griever.

Another thing I look at a lot, is shadow grief. Shadow grief is an idea that a lot of people don't recognize. But you certainly have had a primary loss. For example, some who have Parry Rombergs, that's the most apparent, the closest to the surface, kind of loss that you are looking at.

Shadow Grief is all the other stuff that comes with that and sometimes those are the hardest things to get through. The things that are even unconscious to the person who is going through that loss. Shadow grief, for example is a divorce. Shadow grief is the financial aspects that go along with that. The loss of friends, the loss of family, the loss of security, the loss of a home. So many things that come under primary loss that people just don't recognize. And I think about that quite often when looking at people who are struggling with a disease such as Parry Romberg. That is a physical disease. There are so many losses that come under it that people don't think about.

I am worried about some different things, like Kelley who has just had surgery. That is who she has been for many, many years. And now she is about to start into school as someone who is different and beautiful. And was beautiful before. But there is a loss in that and there is a loss in things that are good as well. There is loss in things that come as far as reconstructive surgery and things that really can be seen as beneficial but there is a loss there. That is someone you have been and now you have to reconstructive that story again. That is something that has been dropped into your story and now you have to reconstruct everything and learn to live your life in a different way. And you might not even be consciously aware of that at first. As I said, that is Kelley. But that definitely is going to be apparent. And it is going to be very evident in things that she does day in and day out. So those are some of those things which are more of what I look at as far as the quietness of the loss. The pieces that are not really coming to the surface to the outside viewer. I think people who are supporting our family members or friends, or our children, those are things important to really become aware of. And to know there are other pieces to that which we are not aware of and they might not be aware of. And that again is where just being present comes in. Just being there, that presence for them to hear what those stories are. And again they might not even know what comes to the surface for them.

The goal of the long journey of grief is not to escape, but to travel well within the shadows.

Again with the story of your personal narrative, the goal of the long journey of grief is not to escape, but to travel well within the shadows. It's all about the beauty of the journey. It's all about the beauty of taking that loss and building on that. Again in one night of seeing such beautiful stories from each of you and your family members and those who have this disease, that you travel well within the shadows. You have to build a beautiful life and that is the biggest part of what I believe loss and grief counseling is to me, is to be able to sit through that journey with someone. That was probably the biggest part of what I wanted to talk to you about this morning, to try to expand that explanation of loss and grief. And to expand what I do. It is not about being sad, it's not about sitting and grieving over things that we have lost. It's about the journey after that. It's about building on that. It's the strength that comes from that and the strength that I've gained from sitting in on that journey as well. I mean I've grown monumentally just being able to sift through this journey with Kelley. And learning so much through that and that's probably the biggest part of what I wanted to say to you today, is just loss can be a beautiful thing. Many people talk about wanting to avoid things in your life, to avoid the hardships and avoid lots of things that make struggles for you.

To me and my challenge to you, is to embrace these things. And to embrace those challenges that come about for you. Because that is where growth comes. And that is where the beauty comes to your life and the beauty comes in other people's lives, to get to be near you. And what an amazing gift to have.

All photos and text are the property of Libba James, and may not be used without her consent.

Libba James
Romberg's Retreat
July 22, 2007
Dillon, CO USA
For additional information, please contact Libba James.

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