Announcing Child Loss Virtual Support Group with Phoenix Destiny and Karen Carlissi

In this episode, Karen Carlissi discusses her work as a death doula and the collaborative event she is hosting with Phoenix Destiny, focusing on supporting individuals who have experienced child loss. 

We explore the concept of disenfranchised grief, the format of their workshops, and the importance of ongoing support for participants. Karen shares insights into the emotional landscape of child loss and the rituals that can help in the healing process, culminating in a poignant poem that encapsulates the essence of remembrance and love.

Workshop Flyer and Registration Link
Death Doula Panel Episode
Karen's Episode
Phoenix Episode

Transcript

Annalouiza (00:01.979)
Hello, hello. Today we are so happy to have Karen Carlisi back with us here on the podcast. She is a death doula and part of the Beyond the Veil Doula Collaborative and has been trained at INELDA, the International End of Life Doula Association.

Wakil David Matthews (00:21.547)
We asked her to join us today because we wanted her to tell us about a new series of events that she and Phoenix Destiny, who was also on our podcast previously. These events are specifically for those who have experienced child loss. So welcome. Glad to have you back, Karen.

Annalouiza (00:43.781)
Welcome back.

Karen Carlisi (00:44.898)
Thank you so much. It's so great to see you again and to be here with you in this space.

Annalouiza (00:48.027)
Great. Well, let's just dive in. So tell us about this work that you're doing around the child loss and how is that moving in your realm?

Karen Carlisi (01:03.95)
So Phoenix and I are collaborating to offer a series of events focused specifically on the layers of grief related to child loss. We've done one already. We're going to be doing another one soon. 

And what we're doing is we're bringing together anyone who's experienced child loss of any kind, whether it be from a personal experience of losing a child who has already been born and whether it's from physical death or from a miscarriage. We also are including the loss connected to abortion, imprisonment, estrangement, mental illness, and any sort of child loss other than what I just mentioned that could be there. 

The form that our event takes is usually a workshop and it includes a series of reflection questions. We give time for the participants to share their experience. We have breakout groups, guided meditation using a little bit of sound healing if time allows. 

So it's a nice space of about two hours to bring people together and allow them to be seen and heard for this grief that is actually not usually allowed in that space to be seen and heard. we're looking at it as a disenfranchised grief.

Wakil David Matthews (02:40.96)
Alright.

Annalouiza (02:45.593)
Hmm. Interesting.

Wakil David Matthews (02:46.144)
Hmm. Yeah, very good. Yeah, I like that. And I agree, it's something that people don't talk about a lot and people I know who have gone through it in whatever way as you're talking about. It's very, very difficult. maybe one of the more difficult things to go through, and especially if you have no kind of support. And so it's so wonderful that you're doing this work. Can you tell us more about when it's happening next? we're kind of doing this as a public service announcement, if you will so that people will know about it and have access to it. And it will be online, correct?

Karen Carlisi (03:19.418)
Yes, it is a virtual event. Our next offering is on May 25th from four o'clock to six o'clock p.m. And there will be an Eventbrite offering a link that we can provide for that event. We are looking forward to anyone who is experiencing some kind of grief, whether it's now or has been in the past. It doesn't have any time sensitivity to it. Just, you know, anyone can come and bring their hearts and minds to honor this personal experience with us.

Annalouiza (04:00.539)
That is really interesting. I'm going to ask about this because as a mother, I have been in circles where others have had a child loss of different kinds, right? Like you mentioned, estrangement or divorce or an abortion or miscarriage. I mean, there's whole panoply of, you know, loss. 

I'm going to sit here and ask you, if I were to have a child loss under the umbrella of, let's say, I lost a kiddo in a divorce, how would I be met next to the person who had a miscarriage? Because I think that it's a child that's lost, but they might react differently to being in the same space.

Karen Carlisi (04:59.182)
Well, it's interesting that you asked that because in our first event, we had quite a range of experiences of child loss from abortion to stillbirth to five failed pregnancies, one that actually was a termination due to a Down syndrome child. so we actually discussed that a little bit and how, you know, pain is relative, grief is relative, and we all suffer in one way or another, and we're not judging each other in terms of how bad is your loss compared to mine. If someone is there, they're presenting with some kind of very deep wound…

Wakil David Matthews (05:45.407)
Mm-hmm.

Karen Carlisi (05:47.562)
… just pain over this particular kind of gloss, which is very interesting because the way that we came to it actually was that we were in a death cafe together, Phoenix and I, and there was a woman there who was sharing her experience of having had a miscarriage. And the Death Cafe moderator coordinator said that it's actually rare for anyone to come into the Death Cafe circle and share such an experience. 

So we became aware that it was something that was really not being addressed. And then we started to talk about the aspects, the different possibilities. I mean, divorce did not even come up in our discussion, but actually it has a little bit because there's issues around estrangement, which I've experienced myself, that can result from a divorce. The issue of imprisonment, if someone's child has committed a crime, is in prison, I've also had some experience with that. 
And not my own, but very familiar with it. And so we are welcoming all of that into our space and whatever the participants bring to us and into our the time that we have with them.

The others in the group have been extremely supportive and because they're all sharing a similar pain, which is the loss of a child. 

Annalouiza (07:18.501)
Mm-hmm.

Karen Carlisi (07:36.75)
As I was saying earlier, it's very different from mostly when we're doulas, we tend to work mostly with people who are approaching the end of a long life or at least a huge chunk of life and preparing to and that, you know, to look at the end of that life and to look back, to look at their regrets, to prepare with all of the history that they have and what they're leaving to others. 

Annalouiza (07:52.859)
Mm-hmm.

Karen Carlisi (08:05.312)
And this is a very different kind of experience, kind of loss and a particular kind of grief. So we're very interested in bringing that out and into the open and how that looks and feels to them for whatever reason it might be, it is that shared experience of what it means to be the parent of a child, which is…

Wakil David Matthews (08:18.4)
Yeah. Right

Annalouiza (08:28.859)
Mm-hmm.

Karen Carlisi (08:34.882)
I think the difference is that you're looking at a life that's coming, something in the future, and there's a feeling of hope and expectation and what you sort of have a plan. And all of that is gone. 

Wakil David Matthews (08:43.509)
Right.

Karen Carlisi (08:45.17)
And you have to modify your own view and your own perspective on what it means to have this relationship because it is now a relationship that is no longer with a person who is present with you for the rest of your life. So here's his first birthday and here is what would have been when he would have walked and things like that that are very, very heartbreaking. And so that's the shared part of it.

Annalouiza (08:54.821)
Yeah, okay. Okay.

Wakil David Matthews (08:59.764)
Yeah, that makes sense. Yeah. Could you maybe just walk us through kind of what that would look like? you know, what a, what one of these events would look like, obviously without sharing people, just how has it been in the past with people? have they?

Annalouiza (09:20.601)
What's the format like? How do you format this class in a two-hour online space?

Wakil David Matthews (09:25.576)
Yeah, yeah. And how does it work? how has it worked?

Karen Carlisi (09:27.17)
Yeah, it's really, sure. Yeah, it's, well, we open, really, we just open by having everyone come in and introducing themselves and saying what it is that they're there for, what particular kind of child loss they've experienced.

And then we have a series of questions that we ask and have them do some free writing to just allow that particular kind of experience of writing, which we believe that opens your heart and allows just a free flow of whatever comes out. And we have this like a certain number of questions that we hope will help the participants to access, whatever is going on for them about this particular loss, but they are free to write about anything that comes up, they don't have to answer the questions. 

And we found that that is very helpful as a tool, and it really does open up a lot. And we then bring everyone back into the space to share whatever it is that's in their hearts that they want to share. There is a lot of emotion, a lot of very, a lot of tenderness and a lot of mutual communication and support amongst the group members during that time. 

Most of the time is spent sharing and showing compassion and support for each other and giving each other experiences of our own to show that there is understanding and insight and compassion for the other. So that is really a huge chunk of the time. And then we have some time at the end for guided meditation, which is specifically targeted towards bringing into the heart the actual face or image or whatever it is, memory or expectation or feeling that the person has experienced in terms of this connection to the other that they had was part of their body, part of their life and has been lost.

And then there's some music and guided meditation and then we close. And it doesn't sound like a huge amount of activity, but because there's so much going on with the participants in terms of sharing, it’s really the most a lot of the time is spent doing that. 

There's a little bit of a presentation actually at the beginning, which I didn't mention about the idea of disenfranchised grief and some scholarly work that's been done on that. Phoenix actually presents on that because it's part of her doctoral work. 

And that also helps, I think, those who have suffered from this loss to see that there are people interested in it and doing some really kind of mindful scholarly work to find out more and investigate how there can be more support given and bring it out into the open. So as a disenfranchised grief, there is more attention being paid to it. And that particular piece of it is very helpful.

Wakil David Matthews (12:52.478)
Yeah, awesome. Do the folks.

Karen Carlisi (12:54.21)
And also have, we also, sorry, we also provide a playlist that we created of just a ton of songs that are like just beautiful, you know, connected to that whole issue of child loss. And I think we're gonna add in our next event, we're gonna add a book list as well so that there are this wealth of resources for other people that come to us.

Wakil David Matthews (13:19.518)
Yeah, was kind of the good good. That was basically the question I had was whether there was a resource, whether they leave with a resource list or with with some next steps, or if there is maybe even a follow up connection to they stay in connection with you or with other people that kind of. Is there…

Karen Carlisi (13:40.034)
Yeah, they have actually they have stated we sent a follow up email with a list of the playlist and also some organizations that are very helpful in terms of child loss as well as a book list. we've had ongoing communication, like one of the participants actually shared that as a result of having had abortion back in the 80s when it was actually a different time and that's actually my demographic as well. When women had abortions back then, it was kind of considered a liberating opportunity that had not been possible or available before that. And our mothers had...

Wakil David Matthews (14:11.722)
Yeah.

Karen Carlisi (14:30.894)
…you know, three baby, my mother had three babies when she was at the age of 19. And there was, you know, birth control, abortion, all of those issues had not really come to the surface in terms of opportunities. And so the reflection was that, you know, it was done, but it was never really thought carefully about and felt. And so it was really kind of remarkable that we got this feedback that I'm now thinking she came actually for a different loss, loss of a child after eight months of life. 

Wakil David Matthews (15:08.735)
Hmm.

Karen Carlisi (15:21.258)
And so she then came into this other space of really reflecting because others were talking about it. So not to like stimulate grief that shouldn't be there, but it's more that, I hadn't thought about this and I put it away in a drawer and I think it does need to be attended to. So that was kind of some of the follow-up that happened.

Wakil David Matthews (15:28.136)
Yeah. That's yeah, that's really good.

Annalouiza (15:31.513)
Yeah, it feels like that's a really big component in being of service to this community. Because I think that it's not just a one and done. should be tended for a while to make sure they get, especially if it's online, right? You don't get the actual hug or bear witness to tears that go on afterwards. So I appreciate that there is a resource for them to tap into after the fact.

Karen Carlisi (15:49.678)
Mm-hmm.
Right.
Yeah.

Yeah, and we will also be reaching out to those people, those participants about our next event, because it doesn't necessarily have to exclude them just because they've been once. It can be an ongoing presence, and we will just tailor our, you know, what we offer based on whoever is there. And we also light a candle at the end for all the children who are in our heart at that time.

Wakil David Matthews (16:29.864)
Yeah, yeah, beautiful. Yeah. So I love that there's some ritual around that. Is there any… do you suggest or teach anything about ritual as far as like this person may, you know, after the class, they might think, yeah, there's some more I need to work on. I need to deal with that. And maybe there's some ritual that they could use to to work with it. Is that anything you put into the class or something that or maybe resources?

Karen Carlisi (16:54.742)
It's not in the class. Yeah, it's not in the class, but we it does come up. 

Wakil David Matthews (17:00.372)
Yeah.

Karen Carlisi (17:22.466)
It actually one of our participants lost her baby in spring and every year since then, it's been a couple of years when the daffodils are blown. She named the unborn child daffodil. And so when she sees those daffodils in the spring, her body is responding in the spring. 

And so we talked about that, like that would be an incredible ritual, like if you could bring daffodils somewhere to honor a backyard or a sacred space that you have and actually have some daffodils and have that be an offering to her memory.

Wakil David Matthews (17:41.343)
Yeah, beautiful. Yeah, very nice. Yeah, thank you for doing that. That's great. And we will, like I said, put a link in the podcast notes so people will be able to get a hold of you. Is there a fee that you charge for that or is that something people might?

Karen Carlisi (17:59.115)
We just have a love donation. We have a love donation of $10.

Wakil David Matthews (18:03.442)
Okay, I like that. That's good. Love donation is very important. 

Karen Carlisi (18:06.658)
Just for our expenses, copying flyers and stuff like that.

Wakil David Matthews (18:09.9)
Yeah, yeah. You kind of answered this other question we had talked about, which is how you moved into that space as it relates to the end of life work. Is there anything else you'd want to talk about in that regard?

Karen Carlisi (18:23.33)
Well, it was interesting. But like I said, it was really the seed of it was this experience that we had in the death cafe. I had a personal doula experience. It was one of my earliest clients and I had been trained, know, as I had said earlier, like mostly you hear the training about the end of life for people who have lived a long life and some kind of terminal diagnosis and so on and so forth. 

So I had a client who had, they had a stillbirth. so I was, I moved into that space immediately and was not like prepared for it, but I prepared myself and stepped into it and was just available for whatever they needed. And it was really, it was just a beautiful, beautiful, I created a service and memorial for them and ceremony and just spent some beautiful time with them. 

And so I think when I was talking to Phoenix, we talked about the the Death Cafe experience and then my experience as Doula and we kind of, and then she had some experiences that she was very in tune with and she's also working on a doctorate and she's very involved in grief counseling. So all of that came together and we love working together. So yeah, that was kind of how it grew into this offering.

Wakil David Matthews (19:46.92)
That's great.

Wakil David Matthews (19:51.755)
Great, yeah. Well, we'll encourage everybody to go back and look at both yours and Phoenix's and the Death Doula podcast because they all really do a good job explaining what that is and how that works and what you've been doing. And in the meantime, yeah, I think we've, is there anything else that you'd like to share before we do our end of the podcast poem?

Annalouiza (20:17.189)
Poem.

Karen Carlisi (20:18.518)
I think that's, I think, I think we covered pretty much everything that we had planned on covering for this. I'm just so grateful to Phoenix for, you know, it was really her idea. We had these different experiences, but she really said, you know, we should do this because there is this need. And just the whole idea of disenfranchised grief and the people that we've worked with so far are just so hungry for this and are just saying, you know, there's just not enough of this happening and we need it so much. so,

Wakil David Matthews (20:43.23)
Mm-hmm. Yeah.

Karen Carlisi (20:52.632)
We're just very grateful that we have each other and that we found this kind of work to be of service to others in this way.

Wakil David Matthews (20:59.305)
Yeah. So wonderful. Yeah, we had invited Phoenix, but because of a little mess up on our part, not getting the timing right, she wasn't able to be here. But you can see her podcast and see the lovely person she is and the lovely work she's doing. So yeah, lots of kudos and praise to Phoenix and yourself for doing this work. Thank you. Yeah, so why don't we, would you like to read that poem?

Karen Carlisi (21:30.318)
I could read it or yeah, I could read it. It's called I Remember You. 
The world may never notice if a rosebud doesn't bloom 
or even pause to wonder if the petals fall too soon. 
But every life that ever forms or ever comes to be 
touches the world in some small way for all eternity.
The little ones we longed for were swiftly here and gone. 
But the love that was then planted 
is a light that still shines on. 
And though our arms are empty, 
our hearts know what to do. 
Every beating of my heart says, 
I remember you.

Wakil David Matthews (22:24.097)
Thank you. Yeah, very, very moving. Beautiful, and such a perfect example of what we're talking about here.