May 24: The Death of a Mother - David Browning

HEALING THE GRIEVING HEART
The Death of a Mother: Integrating Personal and Professional Knowledge
Hosts:  Dr. Gloria Horsley and Dr. Heidi Horsley
With guest:  David Browning
May 24, 2007
G: Hello.  I’m Dr. Gloria Horsley and
H: Dr. Heidi Horsley.
G: Each week Heidi and I welcome you to Healing the Grieving Heart, a show of hope and conversation with those who have suffered the loss of a loved one and for mental health professionals who work in this most difficult field.  As always the message is others have been there before you and made it, you can, too.  You do not walk alone.  If you’re listening to our Thursday live Internet show, please join Heidi and me and our guest on the show by calling our toll-free number, 1-866-472-5792, with questions or comments regarding the losses in your life.  These shows are archived on our blog, www.thegriefblog.com, as well as www.compassionatefriends.com website.  All shows can be downloaded on Itunes and transcripts can be accessed on www.thegriefblog.com.  Well, good morning, Heidi.
H: Good morning, mom.
G: I noticed in the New York Times a couple of days ago, there was a big article about birth certificates.  A lot of states are issuing birth certificates for stillborn babies now.
H: Oh, I think that’s wonderful.  I’m glad they’re finally doing that.
G: Yeah, that’s going to be great for mothers because they feel like they’ve had babies too so we’re really glad that mothers are getting that recognition and we hope that you have that kind of recognition in your state if you’re looking for that.  Also, a couple of weeks ago we did the Mother’s Day program.  We’ve had quite an email response to that, haven’t we, Heidi?
H: Yes, we have.
G: Yes, those holidays are a big issue for people and we had Debra Regan on and we received some emails where we put people in touch with her so I think that’s a nice thing, don’t you, Heidi?
H: Yes, I love that, and if any of our listeners out there would like to be put in touch with someone we’ve had on the show, or are trying to locate somebody that has a similar issue as theirs or a similar loss, please email us and we will put you in touch with people.
G: Yes, you can email us through www.thegriefblog.com.  Well, Heidi, would you like to introduce our guest today?  We’ve got a very special guest.
H: Sure, I’d be honored to.  Our topic today is The Death of a Mother: Integrating Personal and Professional Knowledge, and our guest is David Browning.  When David was thirteen years old, his mother Harriet died after an extended struggle with lung cancer.  Like many children who lose parents, the trajectory of his life was then shaped by the impact of that loss.  A practicing therapist and educator for twenty-five years, David has sought to understand what it means to be a professional caregiver when one’s own identity has been fashioned by loss.  He has published several essays and articles articulating the need for healthcare professionals to better understand the rich intersection between personal experience and professional knowledge.  Currently, David is Director of the Initiative for Pediatric Palliative Care at Education Development Center, Inc., a national project aimed at transforming the culture of healthcare for children with life-threatening conditions and their families.  Welcome to the show, David.
D: It’s a pleasure to be here. 
G: It’s great to have you on, David, and I was so fortunate a few months ago to go to the Initiative for Pediatric Palliative Care that you’re the Director of and I certainly want to talk about that a little later on.  But first of all, I want to talk about the loss of your mother.  Heidi and I first met you a few years ago when we were connecting with Compassionate Friends in Boston and as a result of that, we read the wonderful article you did about that experience, and I wonder if you could talk about that?
D: Sure.  My mom died when I was 13 years old from lung cancer and that was many years ago now.  It was a huge blow to our family as the death of a parent is to most families and it also happened at a time when I think we had probably less awareness and less knowledge than we do now about how grief impacts on families and also particularly on children.
G: And you were how old?
D: I was 13, and I was the youngest of three boys.
G: And you were pretty close to your mom?
D: I was close to my mom, and as is true in a lot of families, children get particularly often closer to mothers especially in that generation than with fathers so the loss was kind of like other grieving people talk about these kinds of losses.  You’re really not quite sure who you are after a death like that and you’re not quite sure about your own survival after a death like that.
G: And especially around 13, right, Heidi?
H: Yeah, that’s a really hard time to lose somebody.  I know from my own experience working with teenagers and I also wrote my doctoral dissertation on teenage loss, kids tend to grieve alone and tend to do it by themselves and you don’t want to be different in a teenager and stand out and have a non-normative experience like losing your mom, and I was wondering, David, was there anything in the hospital – I’m sure there were many things – that could have been done differently to have helped you and helped your family during that time?
D: You know it’s interesting in that time, and I guess this would have been 42 years go, so what I recall in the times when my mom was in the hospital, because she was home most of the – she was sick for about a year before she died – but the time she was in the hospital, I don’t recall any kind of intervention whatsoever with the family.  We just went to visit her so there was really no intervention at the hospital and there was no intervention outside the hospital.  It was just families I think were just supposed to figure out what to do on your own.
G: Now, what do you see differently about it today?  And you’re around the hospitals a lot and I know you’re trying to make changes.  What do you see?
D: I think in the project that I work on and in hospitals around the country, there was a gradual but growing awareness that when children are very sick much less when they die that it is the entire family that’s affected and that hospitals that especially where in medical settings because hospitals are shaped by medical prerogatives and medical directives in terms of treating the medical aspect of things and I think it’s only been gradual and with some pressure from various parties really that hospitals have begun to see the need to see the whole child and to see the whole family and that means having some knowledge and expertise that goes beyond medical expertise in terms of caring and staying connected to families.
H: You have such a great video, “What Matters to Families, Knowing Who We Are,” about Rebecca Lilly and her family and she was a teenager that died of brain cancer and then talking about how, like you said, David, the whole family’s impacted by a loss.
D: Right.  Yes, and I think that in the educational work we do around the country as both of you know, we incorporate family members in those retreats so that professionals can learn in a different kind of way about how families experience this because when families are in the hospital with their child, there’s an intense focus on whatever is going on medically with that child at that moment and we’ve tried to create an environment where people can step back and understand the entire cultural milieu or context in which professionals and family members and kids are coming together.
G: Kind of an amazing program because David, as I see, you can tell me if I’m wrong, but you kind of level the playing field and try to put family members and everybody on the same level, hierarchy, I guess we call it.
H: And family members are experts on their own situation and on their own loss and on their own illness.
D: Yes, that’s exactly right, and it sort of links to all of what we’re talking about today that we try to create a learning environment where it’s very clear because we create a level playing field as you said Gloria, it’s very clear that the knowledge of family members is going to be honored and the learning is going to be shaped by their knowledge coming in the room just as much as professional knowledge.  And then the same really applies in another way to professionals that are trying to learn about how to be helpful to families and that is that not only does the knowledge of family members need to come to the surface but all the professionals that come to our retreats are also family members and they may or may not actually be bereaved parents.  It’s not been unusual for us to have professionals come who have never told other professionals that they are bereaved parents, but even if they’re not bereaved parents, they all know something about grief from their own lives and one of the things we really try to break down is the assumption that the best professional knowledge is purely objective knowledge or purely content knowledge that all professionals – the richness of what they do well with family members has everything to do with their personal experience which means both the losses that they’ve experienced with kids and family members as well as their own personal losses.
G: Wow, that’s quite a thing to ask people to tap into their personal experience, isn’t it, Heidi?
H: Yes, absolutely.
G: And get to that level.  Well, you get people that come that are interested in it.  I would think that in the whole general hospital it might even be a little more difficult than the retreat.
D: Oh, it is, and it’s not that we – it is difficult, and it’s not also that we insist that people sort of go to that place.  I think what we try to do is simply create a learning environment in which the knowledge that might best be brought to bear on how to be helpful to kids and families gets a chance to emerge and for some, that means because there’s safety and permission, it means for some professionals, it means being able to talk about their personal experience in a way that has never been validated by their healthcare organization before.  Healthcare professionals, as you know, are not historically invited – even setting aside their personal experience of their own losses outside of their professional work, they’re not even invited in most healthcare settings to talk about the impact of the losses that come from their professional experience which is also a major kind of thing that we really try to address.
G: Absolutely, that’s an amazing thought because yes, when you’re working in a setting, people are on to the next patient, they’re busy, and they’re in a hurry.  We’re coming up to break now, and I’m your host, Dr. Gloria Horsley.  When we come back from break, David, I do want to talk a little more about your mother’s death and how you got into this field. 
Well, David, when we went to break I was saying that we would like to talk more about your mom and during break Heidi was reading us something that she actually begins and ends her class at Columbia University with.  And I’m going to give a little synopsis of what I think it’s about and you can tell us maybe a little about it.
H: And it’s something that David has written.  He wrote an article about his mother, right, David?  And this is part of it.
D: Yes.
G: And from my point of view, it says basically for a short thing, is that you really had to reconnect with your mother and make a bond with her that would last forever before you could say goodbye to her rather than giving things up?  Is it sort of that the gist?
D: Well, I would agree with everything you said even the saying goodbye.  I think perhaps Heidi should read it and I could just respond but I think that we have concepts of saying goodbye in our culture around grief that are very shaped by our culture and that most grieving people do not say goodbye in any kind of final way to their loved ones.  They remain connected to them.  Very many grieving people remain connected to their loved ones after they die and our culture doesn’t always understand the healthy ways that people do that.  I suppose there are also some unhealthy, not-so-positive ways that people do that.  But there are many healthy ways that people do that.
G: Could you talk about mother’s death?  As I remember the article that you wrote about it, she kind of turned away from you?
D: The name of the article is “Saying Good-bye, Saying Hello,” and there was a point right before she died.  It was really just hours before she died.
G: And you’re 13 years old.
D: when she turned away meaning she needed to kind of, I think, get ready to die, and I think that happens in families at a certain point with dying folks that they get to a point sometimes where they’re sort of summoning energy for their next passage.
H: Do you think they turn away because it’s almost too painful?
D: I think that could be part of it but I think when it happens also toward the very end of life it’s literally perhaps an energy thing.  One as a dying person, I guess, I suppose is getting ready to, is realizing I can’t stay here so I need to get ready for what’s next.
G: Sort of an energy shift.  So how did you deal with that?  What did you think, for our audience out there who’s had this?  And I’m not sure for some people it feels rather rejecting.
D: Well, I don’t know that it felt rejecting.  I think it was the point where I realized she was leaving.  For kids, especially when there was not much discussion of what was really going on.  We kind of knew that she was dying but because there wasn’t much open discussion, plus even if there had been, as a kid, you sort of believe it when you see it.  You believe it when it happens and so I think when she finally stopped communicating, stopped being my mom in the way that she’d always been my mom by talking with me, then I knew that we were losing her, and that was really close before, very soon before she died.
G: So tell me, how does that impact you now, and you went into social work, right?
D: Yes.
G: And how did that impact you?  Do you think that it did? I should ask.
D: Well, yes, of course, it had a profound effect on me in general but professionally it – I’m not sure I was aware in the very early parts of being gravitating towards becoming a clinical social worker and later a psychotherapist, that I’m not sure I was aware that my mom’s death was a big part of that.  It became clearer as I became more aware in my thirties and forties about myself as a young adult and middle adult that her death had really defined my professional direction because not only did I become a clinical social worker, but surprise, surprise, I gravitated towards working with people around bereavement and as I started to do that, the analogy was unavoidable.  It was obvious that that had to do with being a person that was bereaved and wanting to help others that were in the same boat.
H: And you know what it’s like to be a teenager that’s mom is dying.  You’ve had that personal experience which I think on some level is very helpful.  Well this is really part of – a lot of the writing I’ve done has been on this very point, Heidi, that in many folks who go through professional training are taught about personal experience in a way that tends to keep it in a pejorative or a negative light, meaning if you’re becoming a helping professional and you’ve got losses in your own life, then your job is to resolve those losses so that they don’t interfere with being an affected professional and I would prefer to see that sort of turned upside down.  I would prefer us to appreciate that it may be that the very foundation of our capacity to help comes from our losses for starters and that those losses are great assets as long as we are able to become self aware of them so that they are being used to help our clients and the folks we’re trying to help and not in a way that’s meeting our own needs.
H: I love that concept, because when I teach the Grief and Loss courses at Columbia I use a lot of your tapes and there’s one that talks – professionals are talking about what their experience is like caring for people that are dying and the biggest question in my class which is addressed by one of your training videos is, from my social work students, is it okay to cry when a patient is dying in front of the family? because for some reason they think it’s not okay.
G: And what’s the answer to that, David?
D: Well, the answer to that from my perspective is that it has to be okay to cry.  Now that doesn’t mean that it’s particularly helpful if a helping person is overwhelmed by sadness and can’t be in a helping role, but I think what we’re learning from the research that we’ve done in our project and that has been done in other parts of the healthcare world is that families for the most part are telling us that when healthcare professionals are engaged and show their authentic feelings around let’s say the death of a child, that that’s something that is deeply and helpful and meaningful for the most part, not always, but for the most part for families.
G: Now, I wanted to ask you, you said there have been some changes in the healthcare system and what if we’ve got some people out there who really wish their hospital had done a better job and they’re willing to – or their pediatric unit or whatever, their doctor – and they’re willing to in a kind loving volunteer way help out, do you have any suggestions for them to try to make a change in the system?
D: Sure.  I think many many hospitals, especially children’s hospitals, I’d say probably most at this point have programs within the hospital in which family members are being utilized in different ways.  Family advisory boards of different kinds.  Different types of focus groups in which parents are invited in or family members are invited in to give their opinions.  Kids are sometimes being invited in to play that similar role in children’s hospitals.  And so for folks that really want to be in a position of giving something back or helping to change the system from the family member perspective, I think contacting your local hospital and asking about any programs that utilize family members is probably the best place to start.  When we do our educational retreats, we invite teams and we encourage those teams to bring family members that come from their hospitals and healthcare settings.  There’s also more going on finally in this country around pediatric hospice because historically most children in our country die in a hospital but because there’s some change going on in this area, finally parents, families are being given some alternative and some options around that and there’s much more pressure for there to be the options for a child to die at home when that’s feasible for a family, so there are hospice programs as well that utilize family members as volunteers of various kinds.
G: And I know in the State of California right now, there’s an initiative to try to – well, they’re working on it right now – trying to show that it’s cost-effective for people to be able to move from – kids to move from hospice to hospitals back to hospice with the same, with continuity of care, which has not happened in the past so that’s a wonderful place that our audience members, they can check their state and see what’s going on and help with those initiatives.
H: I’d like to know what the biggest mistake is that healthcare professionals make when working with a dying child.
G: Heidi, that is a great question and I think we’re going to hold that until after break.  Can you bring it up after break?
H: Sure.
G: And also, David, after break, I’d like you to give to some of our audience members out there to talk about some of the biggest issues you see with grief and loss, too, helping people out with their grieving.
David, Heidi had a question that she’s going to bring up but before that happens, I’d like you to give your website to the audience because it’s a wonderful, comprehensive website.  It’s great.  Can you access your videos from there?  Or can people get a hold of them?
D: There is a way to order videos from the website and just – the website is www.ippcweb.org.
G: And I believe that’s on our blog, too, isn’t it, Heidi?
H: Yeah, I was going to say if it’s not, we need to put the link on.
G: Yeah, if it’s not, we’ll put the link on the blog, and Heidi’s got a comment she’s going to read in a few minutes, maybe we can put that on the blog with it, do you think, Heid?
H: Sure, if David doesn’t mind.
D: No, I don’t mind at all.
G:  Oh, that’s great.  All right, so Heidi, do you want to start out with your question?
H: Yeah, before break, I was just asking what is the biggest mistake that healthcare professionals make when dealing with a family with someone dying?
D: That’s a tough question.  I guess – I’ll try to answer that in this way.  I’m going to actually share with you a quote that comes from an educator whose name is Parker Palmer and whose work we use in our project and he talks about professionals sometimes that professional training sometimes teaches professionals to learn about the world as if it is a world they do not themselves inhabit and I think apply to when you’re working especially with families and kids around grief and loss and chronic illness and life-threatening illness and the potential of death that that quote makes even more sense than it does in all other parts of life and so to answer your question “what’s the biggest mistake professionals make?” I would say the biggest mistake comes from something we’re actually taught to do which is to distance ourselves in ways that I’m not sure are particularly helpful to families but furthermore I’m not sure they’re particularly helpful to us ourselves that we distance ourselves when we’re helping families as if kids and families live in a different universe than we do and it’s not true and therefore from a learning and knowledge perspective, it’s not a good way to learn things. 
G: I also think it creates a little fear because sometimes I get the feeling that people when Heidi and I talk about the show to healthcare professionals or whatever, if they’re not into the grief and loss area or whatever, all of a sudden, they’re like oh, I can’t, how can you work in that area or something as though it wasn’t an area of their life.
D: Exactly.  As if it’s an area they don’t know something about it from their own lives and from their professional and personal lives.
H: Because the reality is most, you know, if we live to old age, we’re going to have a family member die.  We’re all going to experience death and we’re all going to be impacted.
G: And we will all have friends and relatives.
H: Absolutely.  There’s no way around it.  That’s part of the life cycle so it’s going to happen.  So we were talking on break a little bit mom, about, as you know, about something that David wrote seven or eight years ago and we were talking earlier about it on continuing bonds.  And it’s ironic that he wrote it then because it’s a big topic nowadays.
G: Because remember the Kubler-Ross model for everybody was anger, denial, depression, acceptance, and Heidi and I talked about it before that that acceptance was really for people who were dying trying to accept their own death was what she meant it for not acceptance that the person’s dead and that’s it and we’re going to.  What did they say, closure is for bank accounts, Heidi, isn’t it?
H: Right, I was just thinking that.  Robert Neimeyer who is the editor for death studies says closure is for bank accounts, not love accounts, and I love that.  It is so true.  And so I wanted to read this part of the article that you wrote, David, about your mother’s death and then we can talk a little about it.  Basically, it says, I believe concepts like saying goodbye, finding closure, and moving on become stumbling blocks.  I knew I needed to say goodbye in one sense, but in a more important sense, what I needed most was help in saying hello.  Rather than severing a bond, I needed permission to nurture, strengthen, and deepen the connection to my mother.  When I could say goodbye to my grief without saying goodbye to my mom, I was free to love more fully in the present.  I love that.
G: Yeah, it’s wonderful.
H: That I think is so true.  And so you came to that realization how?
D: Well, that’s something I wrote seven or eight years ago and one of the things that those of us that have had losses when we are children know very well if they are losses that are worth their salt if they are big losses, they last a lifetime.  It’s not to say that life doesn’t go on or that we don’t find a happiness in our lives and build a good life after a major major loss, but I wrote that seven years ago at the age of I don’t know, 48, and that’s when some of these things were coming together for me.  I think actually that fits with what we now understand about the grief of children and as they grow up to become young adults and adults which is that children grieve developmentally so that if – for a child that loses a parent, what they need help with as they grow through their lives is ways of encountering and re-encountering that loss and making meaning of that loss in a framework that fully understands that this will keep going on indefinitely, which again is not to say that one’s life is in a mess indefinitely.  It’s just to say that the meaning-making process keeps going on.
H: And you can continue to miss them for different reasons.  I’m working on a longitudinal study right now as you know and I’ve been working with the same kids for five years that lost firefighters in the World Trade Center.  I mean some of them graduated from high school this year and what they miss is their father wasn’t there.
D: Right, exactly.  And what we need – what children need around them even if the rest of the family system has transformed to something else which is another part of this because sometimes spouses get ready to take on a new spouse, for example, whereas a child never takes on a new parent.  You might take on a stepparent, but you don’t replace a parent that’s died, and so for kids, they need a loving environment around them so that when they reach graduation, there are folks around them that fully understand why they’re missing dad at graduation.  Why they are longing to be like other kids at that time.  And as long as that framework is around them, they I think have a much better potential to kind of work in a healthy way on the loss throughout their lives.
G: When I hear you talk about that, David, there’s a really richness about it.  About exploring your life in this way.  I love your writing later on and I know a lot of our audience journal and what a great thing to do and the richness of your life exploring it.  Some people don’t have anything happen and they don’t explore so there is a richness.
H: And it’s also interesting because sometimes kids can make those connections for themselves and say, you know, I feel sad today because daddy’s not here and sometimes kids will act out and get all upset and it’s the parents need to come in and say, you know what, it’s a hard day today.  You’re graduating and it’s wonderful and I wish daddy was here to see this, and then the kids are able to say maybe that’s why I’m so sad.
D: I totally agree with that, Heidi, that that’s the side of the environment around kids.  That kids are not always going to make those connections and to have parents that, and family members and close people that are close to that kid being able to say, I wish daddy could be here, which is actually a beautiful way of saying it because it’s not – could be here to see you – it’s a beautiful way of saying it because it’s not even telling that child that you’re sad because this is a time you wish your father were here.  It’s not an interpretation.  It’s saying I wish daddy were here to see this and it gives permission for that child, if that’s what the connection is, for them to feel free exploring that.
H: I like that.
G: I think that’s a great idea for our folks out there.  Good thought.  What about – can you two talk about siblings.
H: Mom, I was just thinking that because I was thinking the biggest thing I hear from siblings, surviving siblings, is, you know, when my sibling was dying, I was overlooked and unacknowledged and ignored, and all the attention went to my sibling that was sick and dying and nothing went to me.  
D: Yeah.  Well, it’s a very very important point and it’s, I think, just kind of a reflective of just how much is our healthcare system and our system of professional care givers capable of responding to all of what is needed.  And what I mean by that is that slowly and gradually this healthcare system is getting a little bit better responding to families in these situations and siblings are kind of like the outliers.  They’re the invisible people just as you said, Heidi, because they’re not always there as the parents are and so it’s kind of like they become – they are not the first group that’s looked at and they should be right up there with everybody else, and it’s a question, I think, of resources and of will in the healthcare system because most healthcare professionals, any healthcare professional who works with families is fully aware that siblings suffer that way.  It’s a question of whether the system is willing and able to do something about it and to provide some resources in that direction.
H: Right, and I know that Betty Davies out of UCSF has got a program called Super Sibs which really focuses on the siblings.  It’s a wonderful program.
G: And we’ll be having her on the show, right, Heid?
H: Right, she’s going to be on in July.   But, mom, do you remember when Elizabeth Devita-Raeburn was on?  Her brother was the boy in the bubble and he died twenty years ago, twenty-plus years ago, and at that time, she grew up in the hospital because he lived in the bubble for eight to ten years and she said she was completely overlooked and invisible and almost lost her voice for years and years.  And it was interesting hearing her experience. 
G: And she even ended up working in the hospital after he died, remember, Heidi, doing some work as a teenager there, so, yeah, it’s very interesting how the siblings may become a part of the system in a way but not in a way where they’re able to speak.  They’re kind of just seen.
D: And there’s another part of this that’s important with siblings which is that in addition to recognizing that they’ve been invisible for so long that there’s a challenge of recognizing the ways in which they are in pain.  There’s also an equal challenge to recognize the strengths that they’ve developed by virtue of being siblings of kids that are dying. 
H: That’s a good point.
D: We tend to look at the sad part of it and the negative part of it but siblings of kids that die often grow up, as is true for few people on this phone, we grow up to become caregivers and that’s not a bad thing, but there needs, as you are both saying, there needs to be the attention given to that experience when kids are young so that it’s not a lonely or depriving or – you know, there’s something inherent in what families go through where it’s probably not realistic to think, for example, in a family with a kid that’s sick for a long time.  You’re not going to have a sibling not experience really what it means to not be the focus of attention if there’s a chronically ill child.  But if you have a way of them understanding what that means, it doesn’t represent that they’re any less loved and furthermore, mom and dad will give you special attention at this time and that time and there’s help here and there’s this support group here, then they have a way, I think, of pulling through all that in a way that doesn’t have to have really terribly negative
H: And I love that you’re bringing that up David because like you said, kids have – they develop strengths and resilience and in both articles that I’ve written on sibling loss, I put in a piece about kids that have had siblings die and that they’re often more empathic, they appreciate life more, they’re more mature often.
G: I also think, Heidi, it affects family dynamics.  I think that there can be some real closeness in the family where the siblings really realize the meaning.  But it is time for us to come on break now and this is our last break. 
This is our last segment and I just wanted to recapture a few things that we’ve been talking about because I really think they’ve been so marvelous.  One of them is the idea that healthcare providers, you know, it’s not an alien thing, loss, and the program that David Browning’s working with in having healthcare professionals realize their own experiences and be able to express them and use them with families, I think that is a great thing, and then the ideas about how to help kids.  Heidi was bringing that up.  How to be able to talk to kids about you must be missing your mom at Christmas or graduation or whatever, and being able to state that for kids.  Is that kind of what you were saying, Heidi?
H: Well, or the parents stating, like David said themselves, I miss Joey today.  Or I wish Joey was here to see your soccer game or to see you graduate today.  Putting it out in the air for the family.
G: I think those are important points and I wanted to ask David if there are any other points for families out there who have lost loved ones that he might, particularly lost kids, that he might have a comment on or a sibling.
D: I don’t know that I have any really concrete advice other than to say that don’t accept anybody else’s ground rules or don’t accept anybody else’s rules about what it is that’s supposed to be happening.  Grief unfolds in such unique ways in families and also in individuals that families need – people need to feel comfortable going through the process that they need to go through and I know in support groups like The Compassionate Friends when it’s about the loss of a child, that that’s really kind of a basic, a premise that yes, there may be certain things that we all know like holidays tend to be hard times, etc., etc., but the more fundamental message, I believe, is that we’re here to create a loving environment around you for going through what you need to go through and we understand that this year it might be, you might feel like things are going, feeling pretty good and it might be five or six or ten or fifteen years from now that the loss hits you in a different kind of way and you come back and talk to us some more then.  And I think to the extent that people can surround themselves with that kind of thinking, it just allows things to unfold in ways that they need to and then, of course, part of it is having enough loving resources around whether in the form of community or family or professional helpers to kind of support people along the way.
G: And we don’t have too much time to explore this but I wanted to explore, in terms of that, a sudden death, like our son was killed outright and we never ever had any support beyond that, has that changed?
D: Well that’s sort of like I was saying before about siblings that in the pediatric palliative care world, it’s beginning to change but what the focus went to first was kids with life-threatening illness and conditions that last a long time but it’s increasingly recognized that sudden death is in some ways it’s an even greater need because for exactly the reason you said, Gloria, that people tend to be invisible to the healthcare system but they’re usually not entirely invisible.  They usually show up at the emergency room or somewhere and again, I think it’s a question of both recognizing that those families have a bunch of needs that start at that moment that the healthcare system can be helpful with and then also trying to fashion some of the options that are available to families in ways that are flexible because the problem is, of course, in all different families, people respond to different things.  Some people go to support groups.  Some people go to counseling.  Some people talk to other parents and for a response to be effective, it has to be kind of flexible.
G: You didn’t get any kind of outreach, did you, Heidi?
H: Outreach?  No.  Absolutely not.
G: None at all.  It just kind of ends.
H: Right, and I’ve heard that with families that have hospice and have a large community around them of healthcare professionals, it’s very difficult once the person dies and not only do they lose someone that they love, but they lose all these people around them that were there for them and all of a sudden they’re alone.  So I love what David said about grief unfolds in unique ways.  I think that is so true.  That is such a great way of stating it.  And I’d like to say one more thing because we talked a lot about sibling loss today and I just wanted to say from a brief sibling perspective, my own, is that the death of my brother defined my life, but in no way did it destroy my life.  I think families get nervous that having a family member die is going to in some way permanently destroy their children forever and it won’t.
G: You know, as a parent, you’re so distraught and out of it that you really do.  I wasn’t a very good parent for a year or two or maybe even more.  You’re just kind of out of it so I think you do worry about that.
D: Heidi, I think that point is so important for all of your listeners and all of us to hear because there is a way.  I think it’s partly cultural that we think of, especially tragic losses.  The death of a child, whether it’s a sudden death or just any kind of death of a child because it’s so hard to take in that we think of that kind of suffering that families go through as something that’s just, has to be the most horrific thing in the world but unfortunately, as all of us who have experienced loss know, life involves suffering and some of the greatest directions that people take in life have to do with weathering a period of suffering and really what we’re talking about is making sure people have enough support to weather the suffering in positive ways so that they’re not done in by it.
G: That’s a wonderful note to close the show on, David, and thank you so much for being on the show.
H: Thank you, David.
G: It’s been wonderful having David Browning on.
D: My pleasure.
G: Please stay tuned again next week when our topic will be A Mother’s Journey Through Grief, and our guest will be Beth Page, mother of four-year-old Dakota, who died after a two-year battle with cancer.  Through Dakota Winds, Beth shares her story and plant seeds of hope for brighter tomorrows into the hearts of others who are grieving.  This show is archived on our blog, www.thegriefblog.com, as well as www.compassionatefriends.com website.  I’m your host, Dr. Gloria Horsley with my co-host
H: Dr. Heidi Horsley.  David, your mother is gone but never forgotten.  She lives on in your heart and memories forever.  Thank you for all the work that you do.
D: Thank you so much.
G: Thank you, David.